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Newbie Intro, Prayer Request & Advice..long post

Posted by emeraldisle624 (My Page) on
Sun, Jul 15, 12 at 20:00

I have lurked on Gardenweb for so long, I feel like I know many of you already. I created a username tonight for selfish reasons but believe I found this board years ago for a reason. Your friendships and support are an inspiration but I never felt like I could contribute enough to make a difference.

I have recently had some personal issues and would love any input you may have.

I am 37 years old, married for over 12 years, trying for my first child. Long story short, I planned my whole life so far (engagement, wedding, first house purchase, sold first house to buy bigger home to raise family, etc.). As of December DH and I actively began trying to conceive our first baby now that our mortgage is able to be paid under 1 salary and everything else seemed ideal as it could be. I had some minor female issues with monthly cycle and double periods so I actively got in touch with my OB/GYN to find the problem. I learned to calculate my ovulation date, etc. but still to no positive pregnancy test. I had all kinds of different ultrasounds that showed there could be minor complications but nothing that couldn't be managed.

I was diagnosed with a polyp and recommended to have a D&C and a hydroscopy (?) under anesthesia. I was petrified as I have never been put under but for my DH and future conception, I was brave and reached for the stars. The follow up was scheduled for 1 week later. My DH and I showed up for what we thought would be normal test results and to keep trying, which turned out to be the biggest nightmare of our life. The pathology report showed ENDOMETRIAL CANCER. Recommended cure is hysterectomy asap. My dream of motherhood flashed and burned before my very eyes. My doctor has only had 2 cases in more than 30 years experience of this diagnosis in my age group; me and one other patient. To say I am devestated is an understatement. I have let down my husband, my family, my inlaws, my world. To not conceive and birth a child is like a death in my heart.

I have not yet met with the oncologist to determine the stage of cancer, the type of hysterectomy he recommends, if my eggs can be harvested for a miracle (no one in our family would ever volunteer to surrogate I don't think), or any other of the 100s of questions in my heart and mind can be answered. I am so overwhelmed at the moment but mustered up some courage for stranger help. It's far easier than reaching out to a family and friend support system yet.

Any advice for me, prayers of any faith, and questions for my doctors are most appreciated. I plan on going to Dana Farber Cancer Institute in Boston for a 2nd opinion assuming my insurance will cover a 2nd opinion I hope. I'm not close but I have been told they are the best.

I believe in the power of prayer and the thought of menopause at 37 makes me literally nauseous, nevermind the end of a family dream.

Thank you so much if you read this far and God bless.
emeraldisle624


Follow-Up Postings:

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RE: Newbie Intro, Prayer Request & Advice..long post

Hi emerald, I'm so sorry to hear your diagnosis & so glad you're going to a specialist, it's imperative. I was in your situation emotionally, it took me years to get over it. I had so many things going on my onco-gyn felt it was all setting the stage for ovarian cancer, and he wanted to head it off, so I had a total abdominal hysterectomy. Being childless-not- by- choice is heartbreaking, and hearing 'you can always adopt' from well-meaning friends & family that know of the situation doesn't lessen the pain. It's one of those situations that has to be experienced to get it.

You will get lots of comments & support here, but please get to hystersisters.com immediately. It's all women, no judgments, no cattiness, & I promise there are many there who've been down the same path. They can answer all your questions and don't hold back, it really helps alleviate the fear. They can also guide you with the specific questions you need to be asking your specialist. And they will hold your hand. They held mine every step of the way, from pre-op emotional turmoil to post-op recovery. I couldn't have gotten through it without their support & guidance. Please do that for yourself?


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald Isle,

I am so sorry to hear of your diagnosis. This must be an extremely upsetting time for you, but you are on the right track to seek a second opinion from a reknowned hospital. And to do so immediately, even though I'm sure you're really scared. I'm pretty confident your insurance will pay for a second opinion prior to more surgery as that is the best way, not only for peace of mind, but to make sure you know all the options. (And from your insurance co.'s point of view maybe another treatment would save them money.) If you're in MA you may have better insurance plans than most of us have (yet!)

Ask all your docs for informaton about harvesting your eggs for a possible surrogacy at sometime in the future. Don't let lack of possible surrogates at this point stop you from taking steps while you still can.

You said you feel like you have let people in your family and your husband down, to that I say NONSENSE! You haven't let anyone down, even yourself and your dreams for your life. There's nothing you might have done to avoid this so don't waste your energy on blaming yourself.

I can easily see how you might be disappointed, grieving, shocked, frightened, confused, - lots of strong emotions, that will have to be worked through, in time.

But the first thing to do is to do what's best for you health and recovery. Try to look at it this way: if you hadn;t been willing to do everything possible in order to get pregnant, you might never have discovered the malignancy, until it was too late. So this could be looked at as a small blessing in disguise. (Big disguise, I'll admit.)

When are you going to Dana Farber? I will keep you in my thoughts and prayers and hope to hear a report of good news for you.

We live in northern NY and we travel four hours each way to get my husband to Boston heart doctors, even though we have plenty of good ones locally. It's just that there are even better doctors at the big hospitals in Boston.

Hope you will us posted! I'm sure lots of people will chime in with more on point info and their very best wishes for a quick and complete recovery.

Liriodendron


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RE: Newbie Intro, Prayer Request & Advice..long post

I am so very sorry to read this. I find myself typing and deleting as I'm not very elloquent and am at a loss for words. Please know that I'm praying for you and your family.


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RE: Newbie Intro, Prayer Request & Advice..long post

Oh my. Your head must be spinning and you must be in total shock. I am so sorry you are going thru this. I think you are so smart to get the second opinion - not to say that one doctor is necessarily better than another, but they all can't know and read everything. I think you have to be your own best advocate. I'm kind of in awe of the fact that Moonshadow is your first responder and has such relevant experience and a great source of support. Kinda gives me chills.
I started menopause in my early 40s, right after going through a divorce, one of the reasons for which was that my husband, who already had two children from a previous marriage was not keen on having more children. My heart will always be sad bc I did not have children; I've gotten past it, but I will never get over it. I didn't have the option to adopt. IMHO, you are still very young. After you are done ensuring your own health, you will have plenty of time to look into adopting a wonderful child, with whom you will have a deep and loving relationship. My beautiful cousin, mid-40s, just adopted a newborn as a single mother - she has a great, supportive family and a great job - and she couldn't be more over the moon. It wasn't the path that she thought she would take, but it has turned out to be a heavenly path just the same.
Prayers and good vibes for you, E.I.
May God hold you in the palm of his hand.


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RE: Newbie Intro, Prayer Request & Advice..long post

Hi Emerald,

Oh I'm so sad for you. I can't imagine dealing with a double-whammy like this. I can't offer anything on the cancer diagnosis, but I do want to share that I've been there in grieving for the pregnancy/birthing/mothering process.

Through our fertility specialist we found a support group that was a godsend - and we are NOT support group people. I would encourage you to talk to someone, (moonshadow's suggestion sounds good) but keep your husband involved too. He is grieving and scared as well and you want to work through this together.

Miracles happen so hang on to that. Focus on getting the second opinion, then getting well. Then look at all of your options. There are many paths to parenthood and you are young.

I wish you the best in your recovery.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry you're having to go thought this, but I hope you will stop being so hard on yourself about letting down your DH and family. They will be happy that you are alive, and that you most likely caught the cancer early.

We have a few things in common - I had a D&C and ablation. (Heavy periods from h#ll that wouldn't end. Ultrasound showed a polyp.) Everything looked good to the Dr that day (no visible abnormalities) but the test results showed endometrial hyperplasia with complex atypica cells - meaning precancerous cells were present. My OB/GYN has already called a GYN/Oncologist for a consult before calling me with the results. He strongly suggested a complete hysterectomy with the removal of a few pelvic lymph nodes. Nothing removed during the surgery showed cancer cells, meaning it was caught very early.

For me, the visit/surgery couldn't happen fast enough. I wanted it out asap. The visit to the Oncologist was near Spring Break so it was a month before my surgery. I hope you go to a Dr that does it with the DaVinci robotic method (or the like). Recovery is much easier.

To give you a bit of hope and encouragement, my Oncologist said that if a woman had to get cancer, it was the kind to get because it was slow growing. Odds are, yours has been caught early.

I can't say I know what it's like to be told you'll never have children, but you will/can get through this. If you cannot get through it alone, find a therapist. Have DH go with you, if needed.

Sometimes our lives don't go down the path we expected. Your story reminds me of Giuliana Resnick - she was trying to get pregnant when she found out she had breast cancer. Had she not been trying, she would not have found out early. They are currently using a surrogate (no idea if it is a donor egg), but her story is similar and may give you hope.

Focus on one thing at a time, then your options. I wish you the best and will send healing thoughts and prayers your way.


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you all so much for the informative responses, you have no idea how much each of them means to me.

Moonshadow: I'm sorry for what you went through; you are right, being told to adopt was not the answer I wanted to hear and I have heard it once already (I am sure there will be more). I will sign up on hystersisters today, I never heard of them.

Liriodendren: Thank you for saying I didn't let anyone down but I sure do feel like it. I'm not in Mass but close enough to make the travel there in this case. And you are correct, I would probably have never found this if I wasn't trying to have a baby. God does work in mysterious ways.

Shesharee: Thank you for posting. Congratulations on your new bundle of joy. I saw your posting and he is gorgeous!

Betsyhac: Thank you for telling me about your experience. My head is spinning and my heart is sad too just like yours. I'm so happy for your cousin. I know there are so many babies who need moms, I hope God has some plan for me and that he has a heavenly plan for me too.

Panko9: Thank you for the reminder about my husband. I keep trying to shield my tears from him but I know he's sad too. I'm meeting with a pyschotherapist this morning to deal with my grief based on my OB/GYN's recommendation. I'm nervous about it as I am a very private person and do not want to get into all of this with a therapist. (no offense to anyone, it's just not my style.) I'm going to let her do more of the talking and see what happens. My DH is coming with me as I want him included in everything. Plus he is a better listener than me as I get overwhelmed with all of this info.

Allison0709: Thank you for telling me about your experience. I can't believe how many people have gone through something like this. 72 hours ago I never heard of half of these terms. I want the cancer out but I am scared to remove all hope of having a child. It's a weird feeling. If the cancer was somewhere else, I'd have it done yesterday, you know? I will look up Guiliana Resnick. Someone told me that Fran Drescher went through this too. I'm getting her book titled "Cancer Schmancer" at the library today.

I cried replying to each response as I am so overwhelmed with the time each of you took to write back to me. Thank you all so very much. I was hesitant to write my original post but now am so happy I did.

I feel like I should put a sticker on my forehead that says "I have cancer, did you know?" I feel so different looking at the world now, even though I don't look any different.

My doctor's office called while I was typing this message. I meet the oncologist on Wednesday afternoon. They originally thought it would be 2 weeks to see him but they had a cancellation. I should be happy but there really is nothing to be happy about.

I hope you all have a wonderful day and please know, you and your personal messages above made a difference in my life.

Emeraldisle624


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RE: Newbie Intro, Prayer Request & Advice..long post

I am so sorry to hear of your emotional and physical pain. I, too, had infertility issues. After 10 years of
trying treatments, miscarriages, and surgeries, we finally were successful. Then 4 years later, at age 36, the doctors thought I had ovarian cancer and I had a complete hysterectomy, along with my appendix being removed and major organs being scrapped (sp?) as it turned out I had endometrosis as well as a huge ovarian cycst.

I am sharing this to let you know to take everything ahead of you one step at a time. Do go ahead and get your second opinion and search for the best treatment for YOU.
My husband works in a cancer treatment center and from listening to him, I know that success rates for female related type cancers have improved greatly over the last few years. Much better % than back in the 1980's when I was facing that possiblity.

Now emotionally I know what you are going through. You are dealing with a loss of something that you never had, if that makes sense. And no matter what people say to you, as well intentioned as it is meant, they can't know how it feels unless they have faced it themselves. You are grieving that loss and need to express it. Your husband wll also go through a sense of loss as well but if yours is anything like mine - he will want to be storng for you and sometimes that just makes it feel worse for you - you may want him to show his feelings with you. Let him know that - it will help you feel closer in the long run.

I hope and pray that you find a way to become parents, whether it be with your own eggs or through adoption.
I wish you the best outcome possible. Please feel free to come here anytime. Hugs to you and your hubby.


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RE: Newbie Intro, Prayer Request & Advice..long post

I too wish you well and with the best outcome possible, you seem very brave
and also good luck with the therapist, it can only be positive to speak about your feelings.


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RE: Newbie Intro, Prayer Request & Advice..long post

I cannot offer advice beyond what others have already said, but I will say a prayer for you.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry. I'm sure you wish you could fast-forward to a year from now. My only advice is that since this is all new, you are still in shock, and as you mentioned there are all new terms, record your doctor visits. For now you will feel like you're on another planet with a new language. Most doctors don't mind a recorder sitting on their desk, if they do, that would bother me. When you relisten to all that they have said, you will be amazed at what you had already forgotten, and you will have new subjects to research. There is no blame in this. Try to have open conversations with DH as much as possible. Hugs to you both.


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RE: Newbie Intro, Prayer Request & Advice..long post

Well, I wish you were introducing yourself under better circumstances, but we are still glad to have you here. I'm sending good thoughts your way.

You need to hear this over and over: This is not your fault and you are not letting anyone down.


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RE: Newbie Intro, Prayer Request & Advice..long post

I am so sorry for all of your pain. Please keep us informed when you're able. The people here really do care a lot.


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RE: Newbie Intro, Prayer Request & Advice..long post

Hi Emerald,

I am also a long time lurker of GW. I joined when we did our kitchen remodel, but have only posted a few times. I wanted to reach out to you though, and let you know that you have been in my prayers since I read this post.

I am so sorry that you received this news! I believe that going to the experts and getting a second opinion is definitely the right thing to do! I hope that you will post updates.

I can really relate to your comment about putting a sticker on your forehead that says "I have cancer, did you know?" I was diagnosed with melanoma in May, and it's a very strange feeling to be going along with your life and then someone gives you this life-changing news that you have cancer. Cancer is such an ugly word! I will pray that there is a time for you when cancer is not the first thing that you think of in the morning and the last thought in your mind before you go to bed.

You mentioned that advice, prayers of faith, etc., are welcome, and I would like to share what the wisest woman that I know (my MIL!) once shared with me while I was having miscarriage after miscarriage. She said that although what DH and I were experiencing was very painful and heart-breaking, that one day we would be able to appreciate the struggles that we were going through. She said that those are the times that refine us and bring us closer to God. We might not ever understand why we have certain struggles or why it seems like some struggle more than others, but keep turning to the Lord and ask for His will to be done.

Hugs to you! I will continue to pray for you!


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, I'm so sorry you're going through this, I could feel your sadness when reading your post and can only imagine how difficult it must be. So scary and disappointing all at the same time. First please know this is NOT your fault and you have not let anyone down. I'm sure that if your husband and/or family knew this is what you are feeling it would just break their hearts.

I too wish you were introducing yourself under better circumstances, but we are here for you, and hope you'll keep us posted on the progress of your story. My husband and I are going through a recent cancer diagnosis too and even though the long term prognosis is good, it's scary all the same. While I don't think there is anything more devastating to go through, I can't help but feel something positive will come from it. I believe that for you too. Of course for now, please keep your focus on you and getting well as that's what is really most important. Once things calm down, you'll see there are so many options and alternatives available for having a child, surely one can and will fit your situation; just don't give up on your dream as it can still come true.


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RE: Newbie Intro, Prayer Request & Advice..long post

I am so sorry, and am praying for you.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry you are going through this.

I will echo the others and say that you are not failing anyone...

I don't post much anymore and only occasionally read but I logged in because I wanted to say... I have a 4 year old and I will tell you that carrying him and giving birth to him was like a split second of motherhood. I am not trying to downplay what it is or your grief over what you are losing, but I will tell you that if what you want is to be a mother, then be a mother... there is SO much more to it than you can ever imagine... but I know that before I had my child, that was really the biggest part I could conceive of. Friends of mine just adopted (domestically even) and it was not a nightmare scenario of lifetime movies. She wanted to be a mom and now she is one, just like me.


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RE: Newbie Intro, Prayer Request & Advice..long post

First off let me say I understand how you feel. I was 32 when diagnosed after years of seeing drs for pain. It was in the 60s and we didn't have the sophisticated testings we have now. I had a total hysterectomy and they took the cervix too. I was terrified as my Dad was diagnosed with cancer 3 weeks prior. I was fortunate to marry at 19 and had 3 children. As far as the surgery, it wasn't half as bad as I imagined. The menopause part they control. I took estrogen right away and took it for 25 more years.
If I were you I would harvest my eggs and you can still create your child with both your dna through a replacement carrier womb. That's what Guiliana Rancic did and their own little baby boy will be born in three weeks.
Expect to be all over the place with your nerves, it's normal after being blind sighted. Talk to your dr. and see if he or she feels you need something for your anxiety. I will pray for you as will others here. Please keep us posted. Know that you're not alone and you have love around you. God bless.


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RE: Newbie Intro, Prayer Request & Advice..long post

These responses have left me speechless, I don't even know where to begin in thanking you all for your kindness and support.

mboston: Thank you for sharing your story with me. I am so happy you were finally successful but sorry for the struggles you had and then ultimately a hysterectomy. You are so right, I am grieving the loss of something I never had. Thank you for the hugs.

mitchdeskj: Thank you for your message. I only pretend to be brave! I have always believed a positive attitude can make the difference in one's struggles so while I am heartbroken, I am determined to fight this with all I have. (I do know the reality is a lot of days will be awful but that's ok.)

amj0517: Thank you

natesgram: Thank you. And that's a good idea. I told my DH I want to make a journal of some kind as it's only been 4 days now since I found out and I am already getting overloaded with information. And I wish I could fast forward this coming year too. It's going to be a long one.

graywings: Thank you. I never participate on blogs and forums like this but I read them all the time. Something told me this would be the place to find the best advice and prayers. Thank you for saying it's not my fault and I didn't let anyone down. I keep reflecting on the past and the therapist I met yesterday said I have to stop that as I can't change it anyway. It's really hard to do.

francypants: Thank you

baylorbear: Thank you for coming out of lurkdom to write to me. It's definitely such a strange feeling! When the doctor wrote down the spelling of "endometrial cancer" for my husband (he hadn't heard of it before, but I had), I just kept staring at the word CANCER. As is, me, I have C- A- N- C- E- R. I refuse to let cancer define me as I am so much more than just a person with cancer but it sure was humbling. I am trying to keep my faith in God and will keep your MIL's words in mind.

lukkiirish: Thank you for your message. I am so sad. Sad about the baby part and having to lose my woman parts. I'm not sad about the cancer (angry, yes!) but I can take the challenge of cancer, that doesn't scare me. I have a will to live and fight for myself, my husband, my family. And I know everyone would be heartbroken to know I am feeling like it's my fault and that I let them down. I have a type-A personality so I do try to control everything in my life and my family and friends know this. This is one time in my life that I have no control over at all! I am so sorry for you and your husband's recent diagnosis. I will keep you in my prayers. And you are right, something positive has to come from all of this.

texanjana: Thank you

kgwlisa: Thank you for logging in to post that message to me. You are correct, I can be a mom without having a baby. I read your statement over and over and I like the way you said it. And your friend is so lucky, to have a beautiful baby of her own and a friend like you.

yayagal: Thank you for your message. I can see why you were terrified and it must have been like a double whammy for you and your dad to be sick at the same time. I'm so sorry you had to go through that. I'm going to ask the doctor about my eggs tomorrow, I hope my ovaries are still ok. My doctor gave me Ativan (?) for my nerves, I don't ever take medicine and don't expect to take this either. And right now, I don't want to numb any of this pain. Thank you for your prayers and I will keep posting. Maybe something I go through could possibly help someone else.

I know it's a lot that I typed to each of you above but want every one of you to know how much I appreciate your personal messages and prayers.

I met with the therapist yesterday and I don't think I am going to go back. While she was very nice, I get paranoid when I feel like people are digging for information. I know it's her job but I can't see me rehashing family history of mental and physical health problems while dealing with this new diagnosis. She did explain how it all fits together but I can't handle all of that at the moment. My husband did come with me so I was happy that we both spoke to her. The worst part of all of it, her office is in the same office as my OB/GYN. Every woman who came through the door was either pregnant and ready to pop or bringing in their newborn baby in their carrier. One lady recognized another and it was a joyful reunion for them to compare baby bumps and I just burst into tears. Of course it wasn't their fault and I truly was happy for them. Last week before my diagnosis, I never got jealous of the pregnant ladies in the waiting room. I knew it would be my turn someday. Now that it will never happen the old fashioned way, it's another thing I have to grieve. My therapist did say there is a bench outside her office I can wait at next time if I go back to avoid the waiting room.

My husband and I bought this house 8 years ago to plan for our future family. We have 4 bedrooms; 1 is an office right now that would be the nursery as it's beige and sage green (perfect for a boy or girl), the other 2 are spare bedrooms for grandparents but 1 is pink and green and the other blue and yellow. I had them done this way so we would be baby ready. I know it's a rash decision but I told my husband I don't want to live here anymore once this is all said and done. This is our dream home and we delayed having our first baby so we could have a fairly comfortable life mortgage-wise and now it was all for nothing. I should have cared less about the mortgage balance and more about precious time. I feel so stupid. What is money in the end. Nothing. The therapist said this cancer has probably been growing for the last 10 years and I probably could have gotten pregnant 5 years ago. I almost threw up my insides when she said that. 5 years of mortgage payments wouldn't have changed my life now looking back.

I see my oncologist tomorrow and I'm waiting for Dana Farber to set up my 2nd opinion. They called me yesterday to request copies of everything from my doctor to be sent over to them. It is all so surreal to me.

Today is the first day I will be home alone and without my husband and family since I found everything out on Friday. Please pray God gives me strength to stay out of my own way.

Thank you all again. I know I keep saying it but I am so very thankful for your support and posts.
Emeraldisle624


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RE: Newbie Intro, Prayer Request & Advice..long post

Sometimes it takes several appointments to find a therapist that clicks. I think one not in the OB/GYN office would be best. Maybe now isn't the time to start seeing a therapist - handle the oncologist, surgery, recovery process first, then decide if you feel you need to talk to someone.

I love (kgw)Lisa's post.

I know you are angry right now - I was angry finding out my troubles, especially as we had just found out DD2 was expecting our first grandchild - but don't take it out on your home. ;) As everyone has said, you can still be a mom and as Lisa's lovely post stated, actually having a baby is such a small portion of what being a parent is all about. It sounds like you and your DH created a loving home to raise a family, and that can still happen.

fwiw, it's been over a year since my surgery and I am not taking anything. I don't have hot flashes or night time sweats. After my surgery, I did wake up twice feeling "hot," but I haven't had that problem since. Everyone is different, so don't let the horror stories scare you.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, I just read through this entire thread and am amazed and touched in a number of ways. First, I am so sorry that you are having to face this and are feeling such heartbreak and loss. The only good thing about it is that you will find strength inside yourself that you never knew was there. You will also find out who really loves and cares about you. I do hope that your desire for a family will come true. Two of my neighbors have adopted children from overseas and they sure seem like regular, much loved kids from happy families. Well, the little girl from China and her Jewish mother don't exactly look typical, but their love does.

Maybe surrogacy will be your answer. Doesn't matter so much how your baby reaches you, as long as he/she does.

I hope all your health issues will soon be resolved and that you can be happy again. Don't beat yourself up over waiting to have children. You made the best choice for yourself with the information you had at the time. Many things in life are not knowable. I had my children when I was very young and there are times when I wish I had taken some years to establish a career in a different field. We can all look back and say "woulda, coulda, shoulda."

Next, I want to say what an amazing community of people is on this site. The responses have been so heartfelt. It is so wonderful to know that we can turn to each other.

I'll be thinking of you on Wednesday.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, When I read your post, I couldn't help but feel the urge to just give you a big hug. I'm glad you realize deep down that this is not your fault. Hindsight is a tricky thing and always seems to cause regret. The reality though is that raising a child without the proper means is hard and trying to have your financials in place before you did was wise. I know this from experience believe me. My daughter is 34 and I took a very different path by having her way to young. I was in no way prepared and my regret is the opposite of yours. She's very independent and has a good head on her shoulders but I missed a lot of her growing up while trying to provide for her. She missed out on some of the things I could have given her had I prepared better. Important things like help with college and a more secure lifestyle. I know right now this is a terrible time and you are heart broken, but I've always found that when something I wanted badly didn't happen, it was only because something better was waiting in the future, I just didn't realize it.

Take the time you need to heal, therapy really can be helpful, but sometimes it takes more than one try to find the right person; this therapist just may not be the right one for you. Also, as you start to heal and consider your options, keep an open mind about new possibilities. You are strong, you will get through this, just try to stay positive and trust it will all work out.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry to read about your situation. Ironically I was also just diagnosed with a type of endometrial cancer a few weeks ago. If you'd like to chat offline you can email me through the link on My Page.

I've had cancer a couple other times - most recently 30 years ago. It is a mind numbing piece of news under any circumstances but even more so when the bombshell is dropped right in the middle of your plans for a family. I was diagnosed the second time at age 25. One of the things I found most helpful was finding other people who were or had been in my situation.

You are in my thoughts and prayers as you continue on this journey that we so wish we didn't have to make.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry to read this post. I can't imagine the feeling involved; except for having watched Giuliana & Bill & how this little baby boy; really did save her life. She did get pregnant twice; she lost it both times which is why she went to this other specialist to see if he could figure out what was going on. Had she not changed IVF doctors; they would not have sent her for a mammo. The type she has is still very serious even though they found it very early. She thought she had it taken care of by removing her breasts (like Christina Applegate) & was told no IVF for a good 5 years. They really lucked out with everything because the carrier was ready to go when they found out they didn't need her because they got pregnant on their own; so she was offered to Giuliana & Bill.. Giuliana almost said no. She & Bill are into very healthy living; no fried chicken; no soda; she didn't know if she could give up control of someone carrying her child.

Giuliana had one last shot to get eggs; everything happened so fast; I have no clue how she was able to process anything. They both knew the IVF process saved her life & at some point; that has to be the main thing because cancer is no small illness. I know that breast & your type are different because your dealing with the reality of not only carrying children but never being able to because they want to remove everything. In Giuliana's case; she will still have it but can never get pregnant because it could kill her.

At some point; your life is more important & you have to focus on that. Make the appointment to harvest eggs; you're going to need to move fast & you'll need to see if this is even on the table. Make the call to get into the Mass center.

I don't know why things like this happen to responsible people like you & Giuliana. I have 10 years on you; so I'm part of the generation of women that fought for our equal rights. My parents came to America in the late 50's; so we've struggled growing up. I have 2 ex-siblings who chose career; one did have a child but he's autistic; so you never know. I have 2 kids; had one very young (antibiotics with birth control) & we struggled; I admired women like you that didn't have things like this happen to them. No matter how much you plan; something can happen & if you're familiar with my posts; you know that my 2nd one has struggled with emotional problems for most of her life & has been in pain for the last 3 years (since 15-16); but no one can figure out what's wrong.

I do know that even with all of the cancer we've experienced; we are where we are & you have to make the best of it. There isn't much else we can do. As a spouse; I'm thankful to have my husband & we're dealing with the rest. It's all that we can do.

Concentrate on your prize; which is your life. Keep us posted

~Hugs


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RE: Newbie Intro, Prayer Request & Advice..long post

So very sorry to read your post. I can only imagine how crushed you are.

But you have to be positive. Positive thoughts will keep you strong to fight this stupid disease and being positive will help you find the will to investigate alternate ways to have your child.

Save your eggs if that's possible - surrogacy is becoming more and more common, so not that far out of the norm to think it would work for you too.

You can always come here and vent and we will listen! I think it's nice to have a place to come and share your feelings where no one knows who you are and you can unload some stress!


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry to hear this news. I'm including you in my prayers and sending positive thoughts your way. I know it's hard, but stay positive . I had a health scare last year, and I came here for support and prayers. You will find the most wonderful and amazing people here at gardenweb. I'm forever grateful to them. Like the other posters above said, please don't hesitate to vent, anytime. We'll be here.


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RE: Newbie Intro, Prayer Request & Advice..long post

The therapist said this cancer has probably been growing for the last 10 years and I probably could have gotten pregnant 5 years ago.

Am I the only one that found that to be an extremely insensitive and irresponsible statement by the therapist?

IMHO, you have to "shop around" for a therapist that suits you. Over the years, I've been to several and, quite honestly, I found only one or two that I liked. While I know there are many good therapists out there, it also seems like it doesn't take much to "qualify" to be one and there are A LOT of them. Don't feel bad if it takes several tries to find one that you find helpful.

Also, I do believe that staying positive will help you to keep going forward and generally improve the quality of your life, but I also found the attached story interesting. I don't think you should deny yourself, or feel guilty about, sad emotions that are only natural as you go thru this. You certainly have a right to them.

I'm seriously blown away by the insight and empathy in the above posts. Wow.

Here is a link that might be useful: Just How Powerful Is Positive Thinking?


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RE: Newbie Intro, Prayer Request & Advice..long post

I also thought therapists were, well, balony, even though my own dtr-in-law is a psychologist. However, I think finding the right therapist saved my life, at least as much as my doctors did.

When my husband and I were dx'd with cancer within weeks of each other I couldn't stop crying for days. We were both so sick. It seemed so hopeless, so wrong. The therapist helped me see and feel things just differently enough that I could breathe again, stop crying long enough to feel a little calmer for a while, to hear what the doctors were saying, to appreciate my husband and family.

Your first experience with that particular therapist was wrong for you. Find another one. I am still amazed at what the right therapist can do, and am thankful for it.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry Emerald, you have to deal with this. I am praying for you.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, welcome! I'm so sorry to hear what you are going through. Life certainly is not fair.

I think you have been given great advice from everyone so there is little to add other than you will get your family if you want one., one way or another. I gave birth to one child and adopted two. Trust me, I couldn't love my two adopted kids any more if I had given birth to them. Pregnancy is a speck of time compared to parenting over a life time.

Cry a whole bunch, get VERY angry, check out all of your options. Then do what you need to do in regards to your health before moving on toward building the family you so desire. It is all possible.

(((Hugs and prayers)))) This is NOT your fault. You were meant to follow a different path, that is all. Just like many of us here.


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RE: Newbie Intro, Prayer Request & Advice..long post

I can't help but continue to be overwhelmed with the time and effort each one of you has put in to each of your responses to me. Thank you all from the bottom of my heart.

I check in here often but didn't want to post again until I saw the gyno-oncologist (1st opinion) that I was referred to by my OB/GYN. I saw him yesterday afternoon. He has ordered an MRI which I will have done Sunday morning (who knew?) but I won't see him again until the 8th of August since that was the first day open on his calendar. When I met with him, he said he wanted to see me in 10 days so I will call next week and see if I can get in sooner. I had bloodwork done yesterday too. I felt like I was at the hospital forever but it wasn't more than 3 hours total. My oncologist was a very nice man, I instantly liked his personality and demeanor which made me feel a little better. I couldn't answer his questions without bursting into tears and he kindly explained that we only had a limited amount of time for our appointment and if I cry, that means I am not processing and listening to what he asks and tells me (other doctors have told me this in the past as my initial reaction to everything is to always cry). It was like he flipped my off switch and I stopped crying until the end of our appointment and then the flood gates opened again. One of the first questions he asked was if I wanted to still have a family as that will guide the route we take once he reviews the MRI and pathology reports from my doctor. The main thing to find out now is if the tumors have implanted themselves into my uterus, which will determine the route of options. He said we have a bit of time before any surgery gets scheduled. I told him my OB/GYN doctor made it sound urgent that surgery was done as soon as possible. He said I am a young, healthy 37 year old woman and while we definitely have to proceed as we are doing, it's not a fast growing cancer that he would send me into the O/R today to remove. I felt better after speaking to him and his nurse. I hadn't even had a sip of water all day yesterday as I kept throwing up due to nerves. I hate afternoon doctor appointments. Dana Farber called me while I was at this appointment and scheduled me to go see them at 7:30am this coming Tuesday. So much happening so fast it seems but then there is also so much waiting time, if that makes any sense.

allison0709: You are right, she's not the therapist for me. The oncologist asked me yesterday if I was seeing someone and I told him I went on Monday but that I didn't want to go back. He thought it would be beneficial for me to go to someone, maybe not her but someone. I told him I am not ready for that. His nurse also reiterated that I should try my Ativan pills but I assured her I won't be. I just don't want to. LOL@ taking my anger out on my home, I can be so dramatic sometimes. I just had such hopes and dreams for us and so many emotions in the last week. I closed the doors to the rooms for now. I know they aren't baby decorated and it's all in my head but I just had to. Thank you for saying not to let the horror stories scare me, usually I am such a positive person but the devil on my shoulder this week has a stronger tap than the angel on the other one.

dedtired: Thank you so much for everything you wrote in your message. This forum never ceased to amaze me when I lurked and now, I can't imagine where I'd mentally be without all of these messages. I swear I have read every single posting at least 10 times so far and each time, my heart swells with hope and faith for a beautiful future regardless of this letdown and fear inside.

lukkiirish: All hugs are welcome! Thank you for another supportive, positive post. I wish I could express myself the way you do. Even with all that you and your family are going through, you are able to console me in such a caring way. You are an inspiration to me. "I've always found that when something I wanted badly didn't happen, it was only because something better was waiting in the future, I just didn't realize it." I know you are so right saying that, it's always been true for me too. It's just so hard right now.

gibby3000: I am so truly sorry about your diagnosis of endometrial cancer. I can now say I know how it feels to hear the words and if you haven't been there, there is no way to imagine the internal physical and emotional reaction. Thank you for offering to chat offline with me, I just may take you up on that offer. I'm sorry this also not the first time you have had to deal with something like this. I'm afraid I will always be looking over my shoulder to see if the cancer is following me. I will be praying for you.

roselvr: Thank you for writing all of that information in your post. Guiliana and Bill are on my list of things to look up. My oncologist definitely knows that a baby is my first priority at the moment. I know it should be my own life and it is, but I don't want to be in such a haze that I forget to do something. My oncologist said we will defintely look into freezing my eggs if necessary. I keep getting so far ahead of myself that I practically have one foot in the grave. So many things in your message touched me. I admired young women who got pregnant either because they wanted to or due to other circumstances (I never say "by accident" now or before as I never ever think of a baby in that way) and how strong a mother can be when she has to be, raising and providing for their baby any way possible. With all this reflecting on my past, I wonder if maybe I never could get pregnant in the first place. Here I was thinking I was a magical mathematician who for all of my years being a grown woman magically avoided to connect a sperm and an egg. I'm so sorry for the struggles that your family has had. You seem like such a strong woman and I wish you continued strength through all of it. And you are right, my prize is my LIFE.

caroloh: Thank you for your message. I'm trying to be positive about all of it as I am such a positive person in real life, even if these posting might not exactly reflect that. This not having control of my life is rattling my cage but I am keeping my eye on the prize, a healthy future life. My mom told me last night to keep picturing my future and how I want it to look, that positive visions can come through with faith in God. I joked with her that I wanted to see my little one packing a bag to stay with grandma! We both laughed even though I think we both got that crying lump in our throat.

rich69: Thank you for your posting; I hope you are doing well after your health scare last year. There are definitely the most amazing people here, I am also grateful for them. The response I have received here has been overwhelming to me, to say the least.

betsyhac: Thank you for picking up on that line from the therapist. I told the oncologist that yesterday and my DH and I honestly thought he was going to have steam coming out of his ears and fire through his nostrils. He told me she had no right to ever say that to me. I was thinking more about my appointment with her and since I never saw a therapist before, I really didn't think about what is the right thing for her to say or not say. I will tell you that she also said she wasn't able to have children either but if I had enough money, a child of my own is possible with money. At first I thought she was kidding, now I am not so sure. I never asked why she couldn't have children as I don't pry on people but also, it was my appointment and I had just literally walked in her office door less than 2 minutes prior crying because of the babies and pregnant women in the lobby. The insight and empathy on this site has been almost like a counseling session to me. I get to be anonymous, hold nothing back, and get honest feedback, experiences and prayers from human beings who have nothing to gain in supporting me. I know people who have been to therapists that changed their lives but I am not ready for that yet. For my mental state to be disected by a therapist right now, it would be as traumatic to me personally as the hysterectomy would be to my body. I have bookmarked that article you attached and have already read it twice. I wholeheartedly agree with positive thoughts changing the outcome. Maybe it's just a coincidence but I believe otherwise.

sherrmann: Thank you for posting your experience. I hope you and your husband are well now. I can't imagine what it was like to find out both of you were sick at the same time. I can tell you I cried a lot in the last 6 days and even while I am posting here. I am an emotional person anyways but not usually with the heavy, unable to breath, downright overwhelmed crocodile tears. This week has been that bad crying. I am not saying I will never see a therapist as I never say never.

bumblebeez: Thank you. The power of prayer could change my life.

golddust: Thank you. And thank you for telling about me about your experience with your three children. I keep thinking about kgwlisa saying about her friend adopting "She wanted to be a mom and now she is one, just like me." All of these adoption stories and the reiteration that birthing a child doesn't have to be the only way to be a mom is inspiring to me. I haven't ever considered that before or now really but at least I have options. Thank you for saying it's not my fault, it's starting to sink in.

I know I wrote a lot of the same things to all of you in thanking you for your posts but there really wasn't a whole bunch of different ways to say THANK YOU. And it's important to me to thank you all personally as every single message each of you wrote is helpful and inspiring to me. It wouldn't mean enough to me to just write a generic thank you message to you all as a whole.

I will keep all of you wonderful people in my thoughts today and every day. I will pray for your struggles while I pray for mine.
Emeraldisle624


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RE: Newbie Intro, Prayer Request & Advice..long post

Yes, this is just the most wonderful group of smart and compassionate women around, my day is always filled with such wonder just reading all of the posts on different things. So many wise words have been posted for you Emerald. Best wishes on your journey.


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RE: Newbie Intro, Prayer Request & Advice..long post

I agree with Susan, the women in this group are amazingly comforting and resourceful and kind. Emerald, you're in my thoughts and prayers. Know that you are surrounded by love and you're going to make it and you WILL have your baby in your arms one day. Believe.


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RE: Newbie Intro, Prayer Request & Advice..long post

You have many replies, but I want to add one more to say don't you think for a minute that because life's turns have let you down that you have let anyone down! Forget that silly notion. This is not your doing or anything you had control over. What is within your control is how you respond to the challenge, so rise to it and above it. Be strong and courageous. Give it all you have.

I want to echo Lynn's comments about pregnancy and birth being just a moment in a life, and it is your life-- not the child's. A baby has no memory of birth and likely the first several years of it's life. Nature makes sure mothers don't remember everything well either or procreation would come to a grinding halt. ;-) It's the caring and nurturing that keeps us going, and sometimes that can mean even more when you you take a life that had greater challenges and help them.

Nearly two years ago, I had a teen come in my door and flop on my living room floor in obvious despair. Long story made short, that girl stayed with us off and on through a most difficult year -- her senior year in high school. I was stupid, naive and blissfully unaware of some of her problems, but I opened my heart and my home to her. I got hurt, but I got loved too. I worried about her health, her safety, her emotional well being, whether she would finish high school or go to college (she had been a very bright student). Amazingly, she did turn it around (got a 4.0 in her freshman year at a large university) and now calls me her other mom. I know the pride and love I felt in a few months off and on. I can't compare it to my sons. I haven't adopted a child, but I do know that when you take someone into your heart, it doesn't really matter if you gave birth. Right now, you hurt so much because you are frightened and because you care so much. It would all be worse if you didn't care, so let it hurt like it should -- then rise to the challenge.

And the therapist -- I wish I could smack her. She was out of line -- incredibly insensitive and playing God. We don't know what might have been. That other path had different turns, so don't second guess or spend a lot of time beating yourself up. You made choices that were good ones to plan and prepare yourself according to what you needed. When you get through this, you are not going to be a kid having a kid. You are going to have the wisdom, the courage and the emotional and financial responsibility to handle more than the average person would. You will be able to give so much more. I got chills when I was thinking about that last night. I'm not sure what that means, but it gave me a good feeling. I hope it will you too -- if not now, soon.
Right now, go kick a cancer butt!


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, the ladies have given you great advice as usual. I'm always stunned by the depth and breadth of the knowledge and compassion that the people here show. Please know that you are in my prayers and I am wishing you the best possible outcome.

Beth P


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RE: Newbie Intro, Prayer Request & Advice..long post

How are you doing? ~Hugs


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you, roselvr. I need all the hugs I can get right now.

susan209: Thank you for your posting and best wishes. These women and men on this forum are amazing people.

yayagal: Thank you for your posting too. I had a dream last night that this was all a dream and that I did have a baby. Once I woke up, I wanted to go back to sleep so badly.

lascatx: Thank you for sharing your story and for telling me it's not my doing. My oncologist said it's most likely a result of hormones that I developed this cancer (excess estrogen) vs. hereditary. I was thinking last night, I think I gave myself cancer and didn't recognize any of the symptoms? Of course my mind is on overdrive. Thank God that teen came to you, what an honor for you to be called her other mom. She will never forget everything you did for her. I told my oncologist too about that therapist and the first thing he responded with was that she should be fired and to make sure that I let my OB/GYN know so no one else ever has to deal with her insensitivity (nevermind her unprofessionalism with the lack of medical knowledge with my diagnosis). Your chills gave me good feelings too, thank you for thinking about me. I want to kick cancer butt now but I feel like I'm still waiting to start! But once it starts, I will be kicking real hard. :)

bethpen: Thank you.


I didn't want to post anything else until I had enough for it to be worth reading. Thank you all for your continued prayers and positive thoughts.

I met with the oncologist at Dana Farber yesterday in Boston. He was an amazing man and had so much knowledge to share with me. Hearing him tell me I do in fact have cancer was no easier to hear this time around. He is still waiting for the final pathology reports and will follow up with me via telephone. He confirmed I probably have had ovulating problems for a while now and will probably never conceive a child on my own without a good fertility doctor. Once I am done posting this, I have to check my insurance and see what is covered. He also confirmed we need to find out the stage of the cancer and just like my first oncologist, if anything is implanted in the uterus then all bets are off. He said it verbatim so I assume it's standard procedure to get the cancer out. So much waiting and waiting.

I had my MRI done on Sunday morning. I am so glad I didn't google anything about having one so I got there not really knowing what to expect. Let me tell you, it was awful. Between my anxiety about all of this information over the past 10 days, the dependence on the results of the MRI, all of the what-ifs, the last thing I needed was to be confined in a tube up to my face for 45 minutes. I kept praying to God to give me strength as this test was so important. Finally at the end, I started to shake and knew I was going to start crying and wanted to press the panic button. Thank goodness the door to the room opened. I told the tech I had to stop and that I couldn't do it anymore and needed to just get out. She said I was done and that I did great! She offered me water and to sit and relax for a few minutes but I told her I needed to just get OUT of there. The results should be ready today I think. They said they'd call me with anything real serious but I haven't heard from anyone yet.

My appointment for my original oncologist was scheduled for August 8 but I called them and said I can't take the waiting anymore. They were able to fit me in on July 30 at a different location so I am happy about that. It's a further location but at this point, I'd drive to the moon and back to get the full story sooner.

The oncologist I met yesterday said to write my OB/GYN a thank you note for being so diligent in finding my cause of period problems. Considering my age, he said enough doctors do not pursue with so many visits, ultrasounds, D&Cs, etc. which ultimately delays the early detection. I wrote up a card to her today but haven't mailed it yet. It sounds weird to write in a nutshell, thank you for telling me I have cancer. I didn't write exactly that but it was the hardest thank you note I have ever written.

I'm not sure which doctor I will choose for treatment, I instantly liked both of them. Both so far have told me the same exact diagnosis, the treatment options based on the grading of the cancer once we know it, and that both will work with me to preserve my eggs for the future. I'm so afraid to make the wrong choice.

I am trying to keep a positive attitude for myself and my husband. My SIL called me the other night to talk about everything going on and I can tell she is nervous for me and her brother. What possessed her to tell me that her mother told her that "Everything is on you now to provide us with grandkids" is beyond me. I was sad that my MIL had already written me off but for my SIL to insert that dig into our 30 minute conversation was the straw that broke the camel's back. I had to end our conversation and then declined her request via text to visit us this weekend. My SIL is not a mean-spirited person in the least, I think she was just asking for my support with her mother and I really can't do that right now. I was shocked yesterday to find out that my DH told his dad, who apparently set my MIL straight. My FIL is a wonderful man but never (ever) takes my side on anything, esp. with his wife. It breaks my heart to think my husband was upset enough to tell his dad about his mom.

I hope I didn't bore you all with this long post. I keep thinking I am writing about someone else's life and not my own.


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RE: Newbie Intro, Prayer Request & Advice..long post

It sounds as though you are making the right decisions for yourself based on the information you are getting from two different sources. I hope you are able to harvest your eggs for the future. I know that will make what you are facing a bit more bearable. Choose the doctor you feel most comfortable with. You might consider finding out about the doctors who will be providing your follow-up treatments, whether it be a Radiation Oncologist or the one who monitors chemo treatments,(can't recall that title) if either is a necessity. The only reason I mention this is because my husband works in Radiation Therapy. He is a Medical Physicist, PhD, not MD but they have two doctors on staff and each has a different approach to dealing with patients - one more old school (more laid back, easy going)while the other is more upfront and puts it out front - if you know what I mean.

It seems when you are facing something like this, that people always seem to say the wrong things. I'm glad you realize that your SIL didn't say what she said in a mean-spirited way. I'm sure too that your MIL probably never thought you would hear about it. Good for you in refusing their visit at this time. The less stress you have to deal with, the better. Maybe she will be able to help you during your recovery if you feel comfortable enough with her doing so.

I'll be thinking about you and your husband on the 30th.
Positive thoughts are heading your way.

Mary


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry about the last part of your post. I can tell you that people do stupid things when there is cancer & this is one of them. I doubt she wanted to hurt you & she probably kicked herself once it came out.

Dana Farber is top rated for cancers & you can't go wrong being treated there. You will get exceptional treatment; & since they see a lot of cancers; may see things during treatment that could save you. We went to Philly & had no interest in having more hands in the pot. We went to one place where the team met once a week & spoke daily if needed to. Everyone was in the loop.

I'm not sure you mentioned the other location.

~Hugs


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, thanks for the update, I think of you often. As you know, we were just in your shoes no more than a few short weeks ago so I know first hand the anxiety you and your husband are feeling all too well.

I hope all goes as well as can be expected on the 30th. As scary as it is, once you have a clear picture and know exactly what you're dealing with it seems some how easier to cope. I hope they are able to save your eggs and will be praying for you. More hugs coming your way. -- Lukki


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RE: Newbie Intro, Prayer Request & Advice..long post

I've been thinking of you often too. Thanks for the update.

I bet your SIL could have kicked herself after that remark. Try not to focus on it, and other stupid remarks you'll hear. Some people just don't know what to say, get nervous, then say the wrong thing.

Sounds like you are on the right track. Best of luck to you. Glad you don't have to wait as long, although I know all too well that this waiting is pure hell. Stress is not good, so try to relax, breathe deep and think of happier thoughts so that you can calm down some at times. Easier said than done I know. ((hugs))


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RE: Newbie Intro, Prayer Request & Advice..long post

Have been thinkIng of you - thanks for the update. Keep us posted as things progress.


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RE: Newbie Intro, Prayer Request & Advice..long post

I cannot begin to imagine how fragile you are right now and glad you are getting good medical advice from doctors you are comfortable with. Wondering whether your SIL=the therapist? Seems like they have the same level of sensitivity to your feelings.... You can have an ocean of people in your camp and it only takes a few to make your resolve crumble away. So sorry for the insensitive people; you don't need them now.


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RE: Newbie Intro, Prayer Request & Advice..long post

I just read all these posts. Emerald, I am so very sorry you are having to go through this. I hear you when you say that you had all these hopes, dreams, and plans that now have to be refigured. It is so hard when something forces you to change all that.

I think everyone has given you such support and good advice that there is little to add. Let me just say that I am thinking about you and so glad you found a wonderful doctor. Despite what you may think, you sound strong and courageous. Your DH sounds like a wonderful man and I am so glad he ran interference for you with his family. There are many men who don't do that.

Take good care of yourself and let other people take care of you, too. I hope there is something in your life that will make you smile and laugh out loud at least once every day. Sending all positive energy your way.

Hugs to you and your DH.
Cynthia


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RE: Newbie Intro, Prayer Request & Advice..long post

Thinking of you and hoping all is going well.


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RE: Newbie Intro, Prayer Request & Advice..long post

Your sis in law's words are just empty words. She obviously cares for you and got lost in her nervousness. You did the right thing to end the conversation and now don't dwell on it, just press the DELETE button in your mind lol. You've got better things to do and you're going to tackle this head on and come out a winner. Think of how fortunate, in an odd way, you are to have such an early detection, so now you go into a personal war and win the battle. You're a winner, you know that. Never forget. Sending love and prayers.


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RE: Newbie Intro, Prayer Request & Advice..long post

Checking in and hoping your appointment yesterday went well. Anxious to hear from you. Take care.


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RE: Newbie Intro, Prayer Request & Advice..long post

I agree with the others that under stress people tend to say the stupidest things - your MIL included. She probably feels so badly for you that she deflected some of her sadness onto your SIL by putting all baby pressures onto her.

I'm glad to hear you're planning on saving your eggs. Just because you may not be able to carry the baby, having the option of using your own eggs is thinking ahead not knowing what you're going to want to do down the road.

Take care and keep us posted!

Carole.


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you for remembering and thinking of me. Your messages mean so much to me and I do read through them every day for strength and encouragement.

I wanted to wait until I had confirmation from both doctors before I posted.

I saw my oncologist at the other hospital on Monday and then finally got to speak with the physician's assistant this morning at Dana Farber. The other hospital is a regular hospital as opposed to a place like Dana Farber.

Both oncologists have confirmed the cancer has not spread from beyond my uterus or into the uterus lining(praise God!) and based on my age and desire to preserve fertility, I am able to try high doses of progestin (?) for 3 months to reverse the cancer cells, have another D&C and then try to get pregnant with the help of a fertility doctor. It's a big risk to delay the hysterectomy as it gives the cancer time to grow and spread but my DH and I have decided to give it a try. I'm a little nervous as both doctors confirmed it's an ugly drug in regards to side effects (depression, weight gain, blood clots) but both said I would be closely monitored so I am comfortable enough to take a chance. This is my silver lining on my dark gray cloud. I did inquire if I'd ever be able to have more than 1 child and was told this is risky enough, it would not be recommended to wait for the hysterectomy after the birth of our first baby if I am lucky enough to conceive. Not sure why I had to be so greedy in asking but it was the first thing that popped into my head. I asked about the reversing of the cells in regards to it being a cure but was told it's not a cure, it's strictly to get pregnant. The cells will continue to multiply but the progestin meds I take and the progestin making machine created in your body during pregnancy would allow the baby to safely be carried to term and then a hysterectomy would be done at the time of birth.

I am so happy even though I still can't stop crying. I still have cancer and still have to have the hysterectomy but there is hope for a little one, no matter how small the chance. It didn't occur to me to ask % of me conceiving. With the problems I have with ovulating, I wil probably need clomid to induce the eggs. My friend conceived twins with clomid so at least I know it can work.

I have to have a blood pregnancy test today or tomorrow just to confirm there isn't a little miracle inside. My OB/GYN's office said they do not do them in their office (?). They recommend-over-the counter as it's cheaper. I burst into tears with the woman on the phone and she's going to have the nurses order one via the blood lab. Maybe she just gave me the standard answer but I couldn't help breaking down.

I just realized I babbled on and on, not even making complete short sentences. I was feeling guilty that I hadn't posted but I didn't want to jinx the other doctor's results if I posted what the first one said.

I decided to go under the care of Dana Farber as it was just a smoother flow of procedures, I am not sure how to describe it. I also get contact with my oncologist's personal nurse instead of just calling the gynocology desk at the other hospital. I am sure the other hospital is just as good and I adored the doctor I met with for 2 visits but my instinct says to go to the cancer specialists even though it's not close to home nor fun to drive around Boston. I hope my instincts are right.

I don't want to get ahead of myself but I have so much hope for the future, even if it's only a small chance. If I do not conceive naturally, I will have my eggs frozen. I may still do that even if I conceive as maybe someday I could have another baby. Our insurance is wonderful and covers almost everything except for 10% and copays.

Your prayers, guidance and positive vibes along with the grace of God have given me the opportunity for a little bit of sunshine. I can't possibly thank all of you enough. I will keep posting any updates as I hope my experience may help someone else. Wish me luck with the hormones, I should be starting them tomorrow or Friday.

emeraldisle624


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RE: Newbie Intro, Prayer Request & Advice..long post

Thanks so much for posting the update. What a whirlwind of events. I'm so glad you have options to try to have a baby. I think it's a good choice to go to Dana Farber since they are cancer specialists. Do you know what medication you'll be taking - is it by chance Megace? That's what I'm taking and the side effects you mentioned make me think that's what it might be. I was kInd of horrified by the possible side effects but only a minority of people experience them. I've had no side effects so far but have only been taking this for a couple weeks. I have talked to other people though who also had no trouble with it.

You have really made a lot of progress in your journey since you first posted. I hope everything continues down a positive path!


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm glad you have found a doctor that will do everything possible to give you the opportunity to have a baby. Saving your other eggs might be a good idea too, if it is possible.

I mentioned the first time I posted that I had infertility problems. I took Clomid when it first came on the market - in fact my son is a Clomid baby! It does have some side effects - for some people - my eyes stayed dialiated and in the mornings when I would first get up, I would see these wavy lines when I lifted my hands in front of my face - kinda weird - my doctor doubted it had anything to do with the Clomid but when I was off of it, it went away.
Later on, he told me I wasn't the only one that had mentioned it - some of his other infertility patients were now saying the same thing although it was not mentioned as a side effect at the time. It wasn't anything that was uncomfortable just annoying.

So, good luck with the meds and please keep in touch. Still saying prayers for you and your hubs.


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RE: Newbie Intro, Prayer Request & Advice..long post

Omigosh, I got chills reading your latest post E.I. You have a tough year ahead of you no matter what happens, but I'm very hopeful for you.


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RE: Newbie Intro, Prayer Request & Advice..long post

Oh happy day!!!!! I'm beyond thrilled that the cancer is not invasive and you have been spared. I felt all along this would happen but the conception part is the greatest gift. Keep us posted, we've all come to love you in our distant ways and want to go with you on the happier part of the journey. BTW I grew up in Boston, if ever there is a time when you might not have any one with you, you can email me and I'll be there. Having two sisters with cancer taught me so much about caring. Good luck. I can send you my eamail if you want it.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, this is great news. The best part being that the cancer hasn't spread. You are in good hands in Boston and I'm so hopeful for your chances to have a baby. Please know that you're in my thoughts and prayers every night.

Beth P.


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RE: Newbie Intro, Prayer Request & Advice..long post

I cry as I write this and can't get into full detail yet but there was a change in the staging now that the final pathology report is in from Brigham and Women (they do Dana Farber's pathology) and I was contacted at 4:45pm this afternoon. I'm not sure why I received the "good" news this morning before the final report was in but I have to worry about that later.

Please pray for me as my heart is breaking and the stress is unbearable at the moment. I feel like God is playing a trick on me and I just don't get it.

I should have never told anyone the option to do hormones, I knew it was too good to be true. I had texted and emailed my family and friends before posting here this morning. Somehow it was sadder to post here tonight and tell you all I am in bigger trouble than I thought.

Hugs to my GW friends and thank you.


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RE: Newbie Intro, Prayer Request & Advice..long post

Your latest message broke my heart. You sounded so relieved and hopeful with your earlier news and now so devastated with this latest news...you must be reeling. Please know we are thinking of you, and hope the prayers I offer up for you & are your husband will comfort you some. Take care...


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry....my offer still stands if you ever want to talk offline.


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RE: Newbie Intro, Prayer Request & Advice..long post

So sorry you are going through this, keep up your strength and hope .


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RE: Newbie Intro, Prayer Request & Advice..long post

My heart aches for you. Please know we are here for you in support, even if we can't be there in person. Sometimes, those of us who visit the Kitchen Forum form a prayer circle for someone in need. Would you mind those of us who are with you here doing this?


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RE: Newbie Intro, Prayer Request & Advice..long post

Hugs back atcha. Hang in there. Your future children, however they eventually come into your life, are pulling for you; and so are we. You can do this. Go outside and take a long peaceful walk and gather your strength. Do you ever do deep breathing? I've attached a link. It's helped me immensely when I'm stressed and when I'm flashing. Keep the hope in your heart, Emerald.

Here is a link that might be useful: Deep Breathing


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RE: Newbie Intro, Prayer Request & Advice..long post

emerald; 1st I was to give you a hug. Please breathe.

I'm glad to see you picked Farber; excellent choice. You can't go wrong with the care they give you; very top notch. People travel to go there. This decision very well may save your life or your quality of life.

I assume the hormones are off the table? If so; I'm very sorry to read this. I know it's a lot to take in- it's like someone going through my hubs treatment & finding out they had a variant that it couldn't stop; or they didn't pick a decent center & it messed up their chances; they're now terminal because it's in their lungs.

I know I could never understand the feelings involved for you. I told you my story about getting pregnant at 20; so I will never know the pain of being told I can never have my own children- I & anyone else not in these shoes; can't imagine how bad the pain is for you. I wish I could do something to help; if I could wave a magic wand & make this part go away I would.

While this huge bump has to do with your family.. It really does not. This is your LIFE; not only your reproductive life or possible future children. I assume this is off the table & while it's devastating; you now have to worry about saving your own life. I can't imagine anyone who would even think eggs are more important then your life at this point. I don't know if you've managed to catch up on Giuliana & Bill's story; but just like trying to conceive saved her life; it's probably saved your life too. I can say the words to you; but you still have to deal with the pain of this huge loss & you will get through this.

You may never know if having children was ever in your cards.. You mentioned that you've always managed to not have it happen. You may even be able to think back of being on BC & taking antibiotics & also being late but your flow ended up coming.. My GYN told me that for some of us; we probably had conceived but it was not meant to be. She said women are more aware of it now because of the EPT quick tests. If you've had experiences like this; it's very possible that your body has been giving you "signs" all along.. We just didn't know it; because we did not have that technology back then. I hope that you understand what I'm saying; my back has been in a lot of pain lately from Lyrica; I can barely think; but wanted to try to give you support.

Concentrate on saving your life; this is the big picture. Without you there isn't the possibility of future children by other means; whether egg donation & surrogate or adoption. I can tell you that you will love any child that comes into your life & you will be their mother. You do not need DNA to be one.

~HUGS


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RE: Newbie Intro, Prayer Request & Advice..long post

We're all in your corner, take a day at a time and also take meds, if offered, to ease your anxiety. God bless you.


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you all so much, it's been a long 24 hours. I feel like I fell off the cloud of hope I was walking on.

I just logged on here real quick last night as I knew everyone would be happy with my post yesterday morning. I was actually even a little YIPPY! yesterday for the first time in 3 weeks. Re-reading my post now I realize I forgot the most important part. I type slower than my brain thinks.

You know when you just get a gut feeling that something is too good to be true?

The pathology report yesterday afternoon shows the cancer is a grade 2. My oncologist only feels comfortable doing the hormones and possible conception with grade 1. My other oncologist never mentioned the grade, only that he was comfortable with doing the hormones and try for the baby in 3 months. Grade 2 means it's less likely to respond to hormones and more likely to regrow after treatment. I did ask if I can be a test case to just try but he didn't respond to that question. I know I am just grasping straws at this point and in my heart, I know I should just schedule the surgery already but I am not ready to give up yet.

The part that makes me really nervous is I could still call oncologist #1 and start the hormones. I also worry if I hadn't gotten the 2nd opinion, what would have happened. I just don't know if it's really a matter of difference of opinion between the pathologists or if there is concrete proof. Of course the Dana Farber one is the more serious one but is that because they are the experts or is it because they are more conservative? So many questions in my head. My poor doctor is on vacation and emailing me via his iPad. I give him so much credit for that but it makes me feel bad I keep thinking of things to ask.

I know you all might think I am crazy but I am seeking a 3rd opinion. I asked my oncologist if I needed a tie-breaker even though I do know and trust that he is right. He responded that my case is a difficult one and it's one of those unusal circumstances in which a third opinion might be in my best interests. He gave me the names of a few oncologists he recommends. I called my insurance company and am so happy they said it's covered. My DH said we would pay cash if we had to.

My OB/GYN's office called first thing this morning with the results of my bloodwork yesterday. I couldn't even bear to answer the phone and tell her it was done for nothing. I was in such a good mood yesterday I even went for the bloodwork alone! Usually I bring my poor DH to everything as I get really nervous in doctor's offices.

I would love a prayer circle, thank you so very much.

I am going to read about the deep breathing, thank you. Right now I just want to go for a walk and scream really loud but I don't want to alarm the neighbors.

Please know that all of your messages make me feel so blessed to have you all here to talk to. The offers to chat offline or to meet me for an appointment leave me absolutely heavy in my heart with the gratitude you have all shown me.

I will keep all of you and your loved ones and all of our struggles in my prayers. I know there is a plan for me, I just want to know what it is. And I have to leave it in God's hands instead of trying to have Him do it my way.


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Newbie Intro, Prayer Request & Advice..long post

"with the gratitude you have all shown me."

Maybe I should proofread before I post...I meant to write I am heavy in my heart with the thankfulness for all of the support and can't even begin to express my gratitude to all of you.

I am working on about 2 hours sleep, I am so sorry.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm sorry to hear about your bad news. Please don't let the quest to give birth to a baby put your life in danger. How would it be to give birth, only to not live to see him/her grow? Stage 2 uterine is much different than Stage 1. Don't seek out a 3rd opinion only in search of someone that will tell you what you want to hear. Maybe you need to step back and hear what the doctor is saying.

Maybe if you removed yourself from the scenario and put in your mother, sister or best friend, your advice would be different than what you are seeking.

Did you ask the doctor about freezing your eggs?


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RE: Newbie Intro, Prayer Request & Advice..long post

Hi Emerald, I have all these things I want to say to you and yet at the same time, I can't seem to find the right words to convey my thoughts. I am so sad and worried for you right now. I know that trying to sort things out is not an easy process but I really believe you need to follow your instincts on this and trust the oncologist who is putting all the cards on the table and being very frank with you. This disease isn't about being conservative or taking risks. From what I understand, there are actually protocols of treatment for each stage; they are probably following the protocol with the most success for your type of cancer and stage. The protocol would change if you experience an allergic reaction to the chemo or your body resists it. Why the other doctor isn't being upfront or discussing the stage with you is beyond me, but IMHO, that is a red flag and not good. I know you're heart is breaking but this is very serious and you should not let that take precedence over your own safety and health. What if you loose that battle? Then not only will you never have the chance to be a mother and grow old with your husband but your husband, family and the child who is in your future will be lost without you.

I'm a strong believer in intuition and instincts and I can see in your post where you're inner voice is telling you loud and clear what you need to do and why. If I were you I too would seek a third opinion but I would also keep in mind that you are fortunate enough to have a first class facility close to you with doctors who are heavily involved in research and current on the most recent information available today. For me, if we lived in your area and had to make a choice, there would be no question about where we would go to get my husband the best care money could buy.

People in our shoes (dealing with a catastrophic illness) are in such a vulnerable position. The decisions we are faced to make are very serious and most of us know very little about the illness or care process we're faced to make decisions about. The fact that this doctor has been very upfront with you is key in my mind. As a patient with cancer, you need that so you can make the most educated decision possible; whether the other pathologist missed the stage two (which is unlikely) or the doctor is just not giving you all the information is very worrisome.


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sorry, hit enter instead of preview!

I'm sorry for such a long post, like I said I had a lot to say and finding the right words is hard.

I just wanted to add again, that I'm sorry this is happening and even though I don't know you personally, I can tell you are a very kind and sweet person. I really wish you weren't going through this.


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RE: Newbie Intro, Prayer Request & Advice..long post

emeraldisle, I am very late here but wanted to wish you the best outcome in this. I'm so sorry this is happening to you. You are in my thoughts and prayers.


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RE: Newbie Intro, Prayer Request & Advice..long post

This is going to be a quick reply; I caught your reply come into my cell when getting dressed to pay taxes.

I was going to suggest a 3rd opinion when I replied before; had a feeling that you may want one & its a very smart idea. Also; take time to join some message boards- a few links below- post & ask who they would go to in your state to see what answer you get. You want the one that knows the most about GYN or ovarian cancers because they would know the answer.

Make sure you take your time to pick; don't just jump on the phone; give it 24 hours.

Are there any big fertility places by you? They also may know the answer or where to find it. ~Hugs

Cancer Compass

American Cancer Society

FB support groups search

Here is a link that might be useful: Google ovarian cancer support groups


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you all again so much. I feel like I write such long posts when replying to each and every one of you. Please don't take it personal if I don't respond to each comment directly, I did in the beginning not knowing how involved it can get.

The prayer thread already has made me cry so many times and it's only been up there for a little while. I am just speechless, it's the only way to describe it. Thank you all so so so much.

I have a message into the doctor asking if stage 2 is the same as grade 2 (I think it is?) and also to ask again about saving my eggs.

Maybe I worded it wrong about the first doctor. It's true we didn't discuss the grade but I didn't with my second doctor either until I pressed him asking why the first doctor AND (doc#2's) physician assistant both said I could take the hormone route. The Dana Farber physician assistant was getting ready to call in the prescription based on the Dana Farber docs notes. I don't feel that he hid or is hiding anything from me. I could be wrong but I hope not.

I know, Lukki, trust me every scenario has run through my head about me dying or any other tale I have spun in my head. You are right, I do feel very vulnerable. I hate that we are all going through these trying times. I know I have so much to be thankful for and that it could be so much worse, I am just afraid to not try hard enough with this. I keep replaying my regrets in my head and I have to tell myself literally to shut up. Thank you for saying I am a nice person. I do try to be. Life is too short to not be nice to people in real life or virtually.

I will check out those links, thank you.

In my heart, I NEED to do the 3rd opinion. I just have to. I am going back to Boston I think. I am so lucky to have access to these amazing medical angels. I did tell the doctor today and then another nurse at my OB/GYN that people probably think I am crazy going for the 3rd opinion and both confirmed that I need to do what I think is right for me. So that's what I am doing, I need a clear conscious when I finally have the hysterectomy as it's coming soon whether 1 month, 3 months, or a year.

I value all of your suggestions and advice so much more than any of you ever will know.


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RE: Newbie Intro, Prayer Request & Advice..long post

I wonder if you might be better off getting another PATHOLOGIST's opinion. I listened to a program on NPR sometime in the last year which talked about the difficulty and errors found in pathologist's work. It seems like it might be beneficial to at least have affirmation of the stage/grade you have.


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RE: Newbie Intro, Prayer Request & Advice..long post

Oh yes, thank you best years.

I am definitely having another doctor's opinion plus another pathologist do the review.

2 pathological opinions have been done already at both hospitals which is where the differing opinions are.

I am so new with all of this terminology maybe I didn't word it right above.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm a big believer in the message boards; for this; while it may not be "medical advice" from a doctor; the patients & loved ones can tell you things they learned. Believe it or not; some centers are not good with every cancer; so you don't know if DF is better then the other large University center.

Ovarian support Inspire message board

Uterine & Endometrial Cancer Forum


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, I think you are wise to have a third set of eyes look at your case and to get as much information as you can. After all, knowledge is power and when someone is just diagnosed, there is a huge learning curve. I guess the way I wrote my post may have implied this but I really don't think anyone is purposely hiding anything from you just that maybe the level of expertise between the two is different.

I probably shouldn't be so quick to come to that conclusion but a recent experience we had with a doctor we'd been seeing makes me scrutinize their processes more. I now have a lot more respect for those conservative or more cautious approaches because (in my mind) they leave room for less error. If my husbands original doctor had been more conservative and followed a more conservative guideline, I believe he would have been diagnosed much earlier in the course of his cancer which was stage 3 when we discovered it. (If that makes sense)

Over the course of a few months, he'd been to see his Doctor several times for some serious back pain and without any testing she quickly made the assumption that he just needed to exercise and loose about 30 lbs of excess weight. I didn't know why at the time but that little voice in my head kept telling me, get him to a different doctor something isn't right. I had already changed doctors for this same reason and when I finally convinced him that he needed to make a change as well he received the diagnosis he did.

My point is, trust that voice inside that's telling you what you need to do. Get the 3rd opinion, its not as unusual as you might think (and so what if it were?) Ask the questions you need to ask and take the time you need to figure it out. Just trust your instincts to know that if something doesn't feel right, that regardless of how it seems, it probably isn't. I have no doubt that after you've had time to get all your facts and to absorb all that's happening, you will make the decision that is right for you and yours and it will work out. In the meantime we'll all continue to think positive thoughts for you!


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RE: Newbie Intro, Prayer Request & Advice..long post

I have made another appointment in Boston for Monday morning so everyone please please please continue the good vibes.

Everything was coordinated so quickly between all of my doctors offices and the nurses are amazingly efficient coordinating getting all the reports, disks and slides where they need to go.

The hospital I am going to on Monday originally made the appointment for next Friday with the Chief of Gynecology but I had to politely explain that my head would explode if I had to wait 7 more days for the appointment. I asked if there was anything sooner and I got Monday. I am so relieved.

I promise you (and myself for that matter) that I am not seeking out what I want to hear, I just want confirmation one way or another if the hormone option is totally off the table. I can't live another 60 years wondering if I missed an opportunity for a baby. Once I know, I can try to figure out our next option for a child (after my surgery, of course). I hope that makes sense.

I am off to check out all the boards posted above, thank you so much.


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Newbie Intro, Prayer Request & Advice..long post

Ooops, shouldn't have hit submit. Communication problem as soon as I wrote all of that.

Appointment is on hold until the pathology is read by the new hospital but please keep up the continued prayers. I'm looking for a miracle.

I should wait to write you or there should be a delete feature...


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald; please; do not apologize for wanting a 3rd opinion. You're very smart to be doing this. I recently helped a friend with their child. She had 2 opinions; one said no surgery & another said surgery. I suggested one more before she decided what surgeon to use because of the type of operation. She just wanted to get it over with. The surgeon was conservative & it's possible the child will have to go under again because of it.

If you're familiar with my posts; you know I kick myself for my dad not going to Sloan Kettering as well as him not going back to his cancer center when his arm was infected & the local doc wouldn't admit him nor would he do ultrasound. It could have contributed to him passing sooner. With my hub; he never saw a 2nd opinion at Penn & I wonder what they would have offered even though he's doing well. Just got the PET scan; no evidence of disease 3 years after diagnosis & 2 1/2 after treatment. You will be there too!


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RE: Newbie Intro, Prayer Request & Advice..long post

I think you are wise to seek a 3rd opinion. This is your body and your life and you need to have peace within your heart that you've exhausted all avenues and you have all the potential options identified. Then you can make the right decision for you.


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RE: Newbie Intro, Prayer Request & Advice..long post

That is wonderful news Emerald. I have my fingers crossed for you.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald,

I don't usually post here but I could not help but respond since I am a histotechnologist and just entered back into my field of pathology selling diagnostics for cancer tumors.

You are on the right path and will have enough information to make an intelligent decision. I am hoping saving your life is your 1st priority as some have mentioned in this thread.

So far, you are seeking 3 Pathology opinions. That is perfect since that is what the Oncologist is going to base your therapy and prognosis on. Your pathology report will have detailed information on your cancer including the type of cancer you have.

I also agree on 3 Oncologist opinions with regards to treatment once you are done with the pathologists. You pick the one YOU trust the most and not the one that is going to tell you what you want to hear. This is important. He does not have to be affiliated with a University Hospital.

What you are leaving out is your education on the type of cancer you have and what stage 2 really means. You will only be able to base your decisions once you complete all 3. Google stage 2 uterine cancer or stage 2 endometrial cancer (which ever you have)and what type of cancer. By type I mean you will see descriptions of your cancer.You may see a word like adenocarcinoma, etc

You need to take a realistic approach to survival and that should be your primary goal. I know you are in shock. Cancer is such a scary word.

Roselvr, I am so happy to hear your husband is cancer free now for 2 1/2 yrs. I remember your thread when he was first diagnosed. We had a thread conversation at that time.


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you all so much for you continued prayers in the other thread, I can't believe how many people have joined in.

Thank you, jerseygirl. I need all of the knowledge and expertise I can get so I appreciate you taking the time to explain all of that. Of course, my first priority is my life. I know it may not seem like it here as I am so upset about the possibility of not having a baby. I plan to move quickly once I have all the opinions in front of me. My DH and I actually steam cleaned all the carpets in our house in anticipation of some family staying over when I have my surgery in case it's very soon. As I said, I have tried to plan every part of my life and getting my house in shipshape condition for surgery is one of those things. I can't help but to release nervous energy so it helped me two-fold today, clean house and occupied.

Once I see this 3rd oncologist, I will actually have 3 of each (3 oncologist opinions with 3 pathology reports). It's not just 1 pathology report with 3 oncologist opinions. The 3rd pathology report will actually be based on both sets of slides used by the prior hospitals as they have requested both sets be sent to them.

It is not my intent to choose what I want to hear as I could easily call Oncologist #1 and start the hormones immediately. Of course, I would LOVE to do that but I am not taking any part of the cancer diagnosis lightly.

I was confused about the grading and staging too as I thought they were interchangable and I had googled stage 2 cancer. The oncologist at Dana Farber confirmed I have grade 2 cancer and the staging cannot be done until after the hysterectomy as it's determined from what they remove. I hope I explained that correctly...

I read a heartbreaking story online where an oncologist would not allow hormone treatments due to the estimated advanced level of cancer the woman had. Once the pathology of the hysterectomy came back, it was determined to be the very early stage where she could have tried for a baby. I'm not saying that is what happened to me, but it proved that mistakes can happen. Of course the hysterectomy couldn't be reversed and she will never have her own baby.

I count my blessings every day that this was caught now as if I wasn't trying to get pregnant, I would have never had it caught for who knows how long. The bleeding was bothersome enough to be an inconvenience but I never had any pain, cramping, anything alarming. It is my intent somehow when all of this is done that I find a way to alert young women to see the signs of endometrial cancer, not sure how but the word has to get spread to young women. I never even knew to look for any symptoms, I thought I was having double periods due to stress.

Sorry I got carried away in my response. I just don't want anyone to think I forgot for a second that cancer is a very serious issue and I am scared to death. But I can't rush to the operating table without being able to sort it in my head and making an informed decision based on the 3 doctors information. I also plan to share the findings with each of the doctors regardless of what the 3rd one says.

I am having my DH call oncologist #1 on Monday as I can't speak like a human being when I am worked up and upset. I want him to tell him what oncologist #2 said and ask why the serious difference of opinion from him and his pathology team. I don't know why I didn't think of this already.

I hope everyone is having a nice weekend.
emeraldisle624


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm so sorry you're having to learn this new vocabulary. I can't add anything in the way of advice, but I wanted to let you know I'm in your corner too. Good luck.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald; can you please email me from my member page?


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RE: Newbie Intro, Prayer Request & Advice..long post

I sent one to you, let me know if you don't get it.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald,

How you are proceeding is perfect especially involving all the different Oncologists to each other to get answers.

My sister in law has lived with Stage 4 Colon Cancer for 9 years with recurring activity in her lungs (non-operable). After getting 3 oncology opinions including one from John Hopkins, her final choice was an oncologist not affiliated with a University. It's the one she felt comfortable with. He has been fantastic.

I will keep you in my thoughts.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emeraldisle,
Roughly speaking, the grade is determined by what the Pathologist sees through the microscope when analyzing the cancer cells.

The stage is determined after evaluation of the size of the tumor, if the cancer is in lymph nodes, or invading other organs. The staging is usually done by the treating physician after multiple diagnostic tests: radiology reports, surgery results, and the pathology report.



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RE: Newbie Intro, Prayer Request & Advice..long post

Just checking in - I know you have no new news but bumping this up to help keep the prayer circle going. Take care.


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RE: Newbie Intro, Prayer Request & Advice..long post

Wishing you luck with your next appointment. I hope that what ever info you get; it will be more clear what's going on & what your options are.

~Hugs


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you all so much for your continued messages on this thread and the prayer thread.

So much has happened since I last posted, let's see if I can post it all in a way that makes sense!

I made an appointment to go to another oncologist at Mass General Hospital's Cancer Center in Boston for a 3rd opinion. I also spoke with oncologist #1 (who said yes to hormone treatment) in regards to #2's opinion and met with oncologist #2 (who said no to hormone treatment) again to discuss his reasons.

Dr.#1 confirmed his opinion that he believes it's worth a shot trying the hormone treatment for 3 months and he is aware of the grade 2 cancer cells that Dr.#2 pointed out as his reasoning for not doing hormone treatment. He believes someone at my age who wants to preserve fertility is able to do the hormone treatment. I felt much better after speaking with him and telling him about Dr.#2's refusal to treat this way. His belief is that Dr.#2 is more conservative and that he (#2) may want to remove the cancer as soon as possible and the hysterectomy is the quickest and safest way to do that.

The appointments I had with Dr.#2 and Dr.#3 just happened to be scheduled for the same day (yesterday), with #3 in the morning and #2 in the afternoon. I was very overwhelmed to meet with Dr.#3 as I felt whatever way she leaned would obviously greatly impact my decision of what to do. I started to cry when the tech was doing my vitals as I just wanted to get my appointment overwith. My blood pressure was 171/111 as I had gotten myself so worked up during our 90 minute drive into Boston in morning rush hour traffic. The tech reiterated to me that it's so important to keep a positive attitude and how much it can effect my my treatment. I totally agree with him but I keep having weak moments and have to be better about being positive.

Dana Farber and Mass General are affiliated together but Mass General did a whole new pathology in my case as I wanted her to have her own picture, even though she did have all the oncologist notes from both of the hospitals. She began by explaining about how the cancer develops and whether it's considered hereditary or caused by my personal environment (used loosely). In my case it's considered to be my personal environment (as opposed to genetics), i.e. my body is not going through the whole monthly cycle each month and producing way too much estrogen and since I am not ovulating, the progestin isn't fully shedding my uterus lining so the linings build up over time. (I hope I relayed that correctly, she was far more articulate of course.) She went on to explain that they've researched this issue for about 40 years since birth control pills became popular, noting that women who took birth control pills in the 60-70s had huge amounts of estrogen in their pills and then the cases of endometrial cancer sky-rocketed and it was in direct relation to the hormones in the pills. Birth control pills are now much safer and do not contain all that estrogen anymore.

With all of that being said, she told me that she disagreed with Dana Farber's recommended course of treatment. I was absolutely shocked. I remained absolutely quiet wondering if I was dreaming. She explained that since she believes it's my "environment" producing the estrogen creating the cancer cells, if we change my environment by taking the hormones there is hope that we can reverse the cells and possibly become cancer-free. I'll still need the hysterectomy but this is an option for me to try and have a baby. She only recommends the hormones for the 3 months and then do the D&C and then try to get pregnant then (just like the doctor #1). The D&C I have after the 3 months of hormones will determine if the cancer cells are still there and if I can proceed with the trying to get pregnant or if the hysterectomy is recommended at that time. After I could finally get enough air to breathe, I did confess to her that I assumed she was going to take Dana Farber's side since they work so closely together and that she personally has known my Dana Farber doctor for 20 years. She said while she has great respect for my DF doctor, in this case she disagrees with him. She was also careful to point out that Dr.#2 could be right. She also knows Dr.#1 and said I'd be in great hands too if I went with him. I really liked her, her bedside manner, her casual and animated yet effective way of explaining things. She was so different than my own OB/GYN and the other 2 oncologists. And she confirmed like the other doctors said, I will NOT die from this cancer.

I left her office a bit happy, a bit excited even, but totally not getting my hopes up as it still did concern me that Dana Farber says no to the hormones.

Later in the afternoon I have my follow-up appointment with Dana Farber. I wanted to speak with Dr.#2 personally as we had only emailed while he was on vacation last week and sometimes things aren't relayed as well as they are in person. We briefly discussed the last week's events and his recommendation for me getting a 2nd opinion to his method of treatment (this is the first time I realized he wasn't very interested in Dr.#1's hospital and Dr.#1's opinion). He explained to me that it's his own personal preference to not treat grade 2 cancer with hormones due to the increased risk of re-occurence after hormone treatment is completed. He said it's only his preference as it's out of his comfort zone and that other doctors may do differently but he will not do it for a patient, even if recommended by someone else. I told him I was able to get an appointment earlier in the day with Mass General's Cancer Center and he was glad I was able to see Dr.#3 as he also confirmed their long relationship working together and how highly respected she is in their field. He asked me what her opinion was in regards to my treatment and when I told him, I could see the surprise on his face. He said she must be confident in her decision and he hopes that I go under her care and go into remission with the hormone treatment and conceive a baby quickly afterwards. He wants me to stay in touch with him as he trusts Doctor #3's judgement and is confident she would not recommend this treatment unless she truly believes it will work. He was glad it was Mass General that I went to vs. a hospital and staff he wasn't familiar with recommending this treatment. He went on to explain to me (which I may have misunderstood prior) that my cancer will not spread or get worse as long as I am on the hormone treatments so that made me feel better (it just might not get better or go away). I even repeated it to him to make sure I understood correctly. So in saying that, I asked if he thought the hormone treatment was a waste of time (not being disrespectful, I just didn't understand why he wouldn't just try it if it doesn't make things worse), he said it's after the treatment is done and I try to get pregnant that the cancer could return and be more aggressive to grow and spread, which makes it so important that I conceive quickly. The progestin that my body would make naturally while pregnant will essentially keep me safe during the pregnancy.

It was a whirlwind of a day with a whole lot more information to make my decision. There was a Red Sox game in the afternoon so the traffic between the game and rush hour was ridiculous (Dana Farber is down the street from Fenway Park). My DH & I ended up stopping for dinner on the way home and discussed all of the details ad-nauseum again as we want to make a decision as soon as possible to get started either way.

Based on the 3 opinions that we received and all of the information we have received from all 3 oncologists, I have decided (with DH's blessing) to go with Mass General Hospital and begin the hormone treatment. I feel I have researched and inquired and weighed the pros and cons of every piece of information I have received from my doctors and nurses, the boards that I read, the people I have shared this with, and feel good about my decision. I have high hopes for the future and believe if it's meant to be, it's meant to be. Of course I want to have a baby in the end but if I don't, at least I know I did everything in my power to try and make it happen.

I'm contacting MGH this morning so I assume I will be starting the hormones soon. Please keep me in your thoughts and prayers as this is only the first step in a new direction of a long journey no matter what happens. I can't thank you all enough for the prayers and positive thoughts that helped me gain the strength to research and find the best decision for me.

p.s. I want to reiterate that I did not go with the answer that I wanted to hear, that I took Dana Farber's doctor and his opinion very seriously and spent a lot of time with him yesterday and the past week via email to pick his brain with all of my concerns and worries. I can't thank him enough for being so patient with me and respecting all of my questions and crazy scenarios. In all honesty, he scared me more by saying no than the other 2 doctors who said yes.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm crying reading your post! I think you've done a wonderful job of deciding what to do.

You're very fortunate to have such wonderful doctors.

I'll post more later.

~Hugs!!!!


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RE: Newbie Intro, Prayer Request & Advice..long post

Em you did an amazing job in your research and having three opinions is always smart. My sister who had advanced ca did the same and we chose one at Tufts Med. He saved her life, the others said 30% of a five year survival and that was 16 years ago. MGH is the top accredited hospital in the whole U.S. You're in the best hands and on a very special journey, one you will never forget. I admire you in your wise decisions. You have a very supportive husband and all will be well in the end. God bless all of you. Keep that smile on your face, it helps.


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RE: Newbie Intro, Prayer Request & Advice..long post

Wow! What a road of hills and valleys you have been on the last few weeks! I am so impressed with your ability to forge ahead and get these appointments so quickly. Many times, it seems like there are weeks inbetween one doctor's appointment and the next.

I am glad that you have made your decision based on ALL the information you have been given and that you are now ready to take the next step.

From my own infertility treatments, I was always told it was easier to get pregnant soon after a D&C. In my case, it didn't work each time but my son was conceived the month after my major surgery. I immediatley went on Clomid and he was conceived that first month. My Reproductive Endocrinologist was very surprised that I did get pregnant that soon and was more than a little concerned since I had had abdominal surgery, not just a D&C. We all sighed a sign of relief after the first trimester but I loved every day of it - even the morning sickness was a sign that it was a normal pregnancy.

So...lady - I wish you the best over the next few weeks. I know you are in good hands with your doctor, your husband (who must be wonderful)and God watching over you. The gals here are backing you up too. We'll keep the prayers coming!


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RE: Newbie Intro, Prayer Request & Advice..long post

What an incredible job you have done researching your options. I am truly in awe of you.... It sounds like you have made an excellent decision. All the very best to you as you embark on this journey.....


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RE: Newbie Intro, Prayer Request & Advice..long post

Excellent to hear the update and good news. It's so amazing to see how you have progressed from your initial emotional devastation to your current take charge attitude. I think that's what usually happens and you feel better once you know what you're dealing with and you can take an active role in figuring out what your course of action should be. I can't remember - did you say if it's Megace that you'll be taking?


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, I am so proud of you, wow. You have sure come a long way from where you started in regards to dealing with this. I'm so hopeful for you and look forward to hearing how things progress. You've done a great job researching everything and keeping an open mind. Now you've GOT to keep that positive vibe going while moving forward, positive thoughts attract positive reactions. I know this from personal experience. Keep us posted, you're still in my prayers and I'll be sending positive thoughts your way!


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you all so much, I couldn't have done this without each and every one of you. It's been a whirlwind of a month since I first got the diagnosis. So many ups and downs, so many tears and smiles. So many thanks to God and then a few down-in-the-dumps moments. The better days have surely outnumbered the bad which is a huge positive.

I do believe it's going to be Megace that I am taking. I have to make another appointment with the new doctor now that I officially picked her. I am waiting for her scheduling coordinator to call me. I am hoping I do ok with these meds as I heard the side-effects can be whacky. But that's the least of my problems, I will try so very hard to tolerate them.

In regards to my attitude, I had to take charge. It's all I know how to do! I am blessed to have some very wonderful people in my life (real and online) that have been a strong backbone in my keeping it real and not getting carried away with my emotions, keeping my focus on my faith and the facts (esp. my auntie K, who is my biggest confidante in all of this). I also realized who I shouldn't discuss this with in great detail as it brings me down with the lack of interest and support. But I really truly believe in being my best advocate and finding all of the information that I could, you should see my notebook that is now my medical bible. In regards to the quick appointments, I believe that's part of the miracle too, the dates lined up beautifully without me even planning or requesting them. For the Dana Farber appointment yesterday, I did stress that I could meet him at anytime, any place, any day (maybe the nurse noticed my desperation in the email?).

I still feel like I am walking on eggshells, waiting for something to change like the last time but I am hopeful for the future. And that is half the battle.

Your messages made me cry today even though I am so happy to read them. I feel like just being able to have this opportunity to try the hormones is a miracle in itself so it just proves that the power of prayer and positive thoughts does work.


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RE: Newbie Intro, Prayer Request & Advice..long post

Wow, I think you did an amazing job explaining things. You are very focused and determined. I'm in awe of your ability to sort through all of this. Keep on keeping on Emerald!!! I so love this new GW feature that tells me every time someone posts on here and on the prayer circle post. Even if I can't get to this forum as often as I'd like, every time I see one of those emails, it reminds me to send out prayers and good vibes for you and your hubby.


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RE: Newbie Intro, Prayer Request & Advice..long post

All the research you have done has been astounding. You sound like you and your DH have made an educated decision and that you feel you are in good hands. Having a positive outlook will go a LONG way toward your goal of pregnancy and good health. I will continue to wish you well during your incredible journey. c


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RE: Newbie Intro, Prayer Request & Advice..long post

I hope your ready to make a new post because this one will be at the maximum soon! lol

My biggest hope for you; if you're not able to carry a child for what ever reason; that you'll be fortunate enough to harvest eggs

I can't stress enough about the way you picked your opinions & hope that if others ever have this happen that they also try to get a larger University type center for at least 1 opinion. I'm going to share why I wanted you to email me & what I told you. Once someone does this; they have an idea of what they're up against. I know that jerseygirl & I feel differently about this; but for the cancers I've had in my life; this has been true. We see that in Emeralds case; one University center did not feel he would take chances. I don't know if it's because he's male & can't relate to her situation or what. I know of people on cancer boards who have not fared as well as my hub with the same type. I also know of one who was treated at Hopkins for my hubs type & at year 5 was diagnosed with lung cancer that could not be stopped. I also know others with pancreatic who have switched & done better with a University type. It's hard to say because location may make a difference as well as type & stage of cancer.

You want to know how many cases of it do they treat per week/month. My hubs Philly ENT saw about 35 a week 3 yrs ago; its on the rise now. I can tell you that he knew just by examining my hub what stage it was & what he would need for treatment & he was spot on when he did surgery & since they had their own pathology; were able to have results right there. He could tell by looking at it that it was right tonsil; golf ball in neck plus he said about 12 nodes; I think 9 tested positive. It was also HPV+ which he knew it would be vs tobacco. They are the best for a reason; its why I didn't trust his life with small medicine. They know what they're doing.

My dad had an issue with local pathology; had our ENT done a biopsy it would have taken 14 days to get the results back. At that point we'd already wasted enough time with him with 2 needle biopsies that took over a week to come back. PET scans at local radiology also left a horrible taste in my mouth when I had to threaten them that I was coming to pick our scans up for his ENT appt which was over a week after it was done; they read it really quickly; but what an inconvenience to have to drive 20 minutes to pick up results & our scans early morning then turn around & drive passed my house to go to the Philly appt. Philly reads my hubs PET scans that day.

Most centers will fit you in asap from what I've seen

I also gave her links to rankings of where she was going; at the time I didn't know her 3rd was Mass General

stats on Dana Farber- #2 in GYN

stats on Dana Farber- #5 for cancer

Mass ranks


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Ooooppps Mass General

I must not have closed the tags on the Mass General link - blond moment!
Mass General- #1 in Mass - #6 in GYN & #7 in Cancer


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, I just had to say how glad I was to read your post today. I can only reiterate what others have already said -- you are truly amazing in how you have handled this situation. I wish you the best.


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RE: Newbie Intro, Prayer Request & Advice..long post

Congratulations on your good news! I'm so glad you took control and got the opinions. You've come a long way in a short time. I wish you good luck and a happy outcome. Please keep us up to date on everything.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald,

That is great news.

I am so glad you found an Oncologist that you are comfortable with and trust. That is key and was the whole point to my posting.

You will continue to be in my thoughts and prayers.


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you again, everyone.

I'm so happy I was able to speak to the doctor's office today rather than going all the way back in for the prescription. Prescription for Megace has been called in to the pharmacy to start tonight, take it 4x a day for the next 3 months and then I see the doctor at the end of October to schedule the d&c.

What a difference a week makes!! I can't even believe how this all came around full circle.

And...I'm humbled that you all think I took such control of this situation. I can tell you that it was nothing less than divine intervention with the stars aligning especially for me. I feel so very blessed.


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RE: Newbie Intro, Prayer Request & Advice..long post

Certainly sounds like an upward trend on your situation. T&Ps that all continues on a positive path - good luck!


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RE: Newbie Intro, Prayer Request & Advice..long post

Hears to brilliant Doctors! I'm so glad there are people who heed the calling. Glad you found someone to trust.


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RE: Newbie Intro, Prayer Request & Advice..long post

Hears to brilliant Doctors! I'm so glad there are people who heed the calling. Glad you found someone to trust.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald, I can't believe I haven't been back here and checked in in so long. Something made me think of you tonight. So much has happened for you, but I am so glad you are feeling more positive now. You did a great job of getting the information you needed and making the best decision you could and to know why you decided as you did. That's really important and should give you great confidence and comfort as you move forward. It sounds like you are in good hands. Trust them.


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RE: Newbie Intro, Prayer Request & Advice..long post

Hope that you are doing well on the meds. Let us hear from you soon.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm doing wonderful, thank God! Thanks so much for thinking of me.

Doing great in regards to the side-effects, keeping active as the doctor advised due to the possible weight gain and blot clot risk. The only thing I noticed really is my tendency to get aggitated easily but I was a little like that before all of this so not sure if it's the pills or just the overall stress on my mind.

Had my blood pressure taken on Tuesday and it was back to 124/74 so I have obviously calmed down a lot. I was nervous it was going to be so high again.

Next appointment is the end of October for the pre-surgery visit and then the D&C for another biopsy.

Thank you so much for your continued prayers and just for thinking about me in general. I really can't thank you all enough.


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RE: Newbie Intro, Prayer Request & Advice..long post

Want to leave you these links

Last month, Real World/Road Rules Challenge contestant Diem Brown was diagnosed with ovarian cancer for the second time.

Brown, 30, must have her one remaining ovary removed in a few weeks, but first, she is undergoing controversial fertility procedures with the hope of freezing her eggs. "I know the risks I might be taking with hormone shots as a current ovarian cancer patient," she tells PEOPLE exclusively.

"But for my own sanity I just want to have something 'normal' before going through this cancer journey once again. For me something 'normal' is having my eggs in a freezer somewhere or knowing in my heart I have exhausted every fertility preservation option possible."

Brown will be documenting her journey for PEOPLE.com, starting with her quest to ensure that she'll be able to have a biological child one day, and how she's coping with her shocking diagnosis

Diem's Kickoff Blog: I Want to Have a Baby Despite Ovarian Cancer

Diem Brown Blogs: How I Made Myself Take Charge After Surgery


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RE: Newbie Intro, Prayer Request & Advice..long post

I believe you're coming up to an appointment in the next week or 2? Wanted to let you know I'm thinking of you.

~Hugs


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RE: Newbie Intro, Prayer Request & Advice..long post

You are so sweet, roselvr. Thank you for remembering and posting here. My appointment is Wednesday morning. I'm getting more anxious by the day but before now, all has been great. I don't expect to find out much at the appointment, I assume it's just the next step before my next d&c. I am going to beg her to do it ASAP so I can get it overwith (so I don't worry for too long) and hopefully have the pathology reports before Thanksgiving.

Now that the 3 months is almost past, it seems like it flew. I have been keeping myself busy so I'm thankful for that. Yesterday was the first time I cried about this in over a month so that's a big indicator to myself in the strength of everyone's prayers keeping my heart calm.

I still can't ever thank you all enough.


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RE: Newbie Intro, Prayer Request & Advice..long post

I've been thinking about you as well. Glad to hear that you are doing well and that this first step is drawing to an end. My thoughts will be with you this week as you have your appointment.

Just read an Associate Press article about Women Freezing Eggs for Later Use. The jist of the story was that it is no longer considered "experimental". "The group (American Society for Reproductive Medicine) cited studies that found younger women are about as likely to get pregnant if they used frozen-and thawed eggs for their infertility treatment as if they used fresh ones." "The move is expected to help cancer patients preserve their fertility by pushing more insurers to pay for their procedure and to boost banking of donated eggs, similar to sperm banking."

The article also discussed women choosing to freeze eggs for later use as an insurance policy against infertility in case they don't meet Mr Right - or aren't ready for
motherhood until their late 30's or beyond. Doctors don't won't to give a false sense of security to those women since it is not all clear sho's a good candidate for the procedure.

Anyway - keep us posted - you are still in my prayers.


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RE: Newbie Intro, Prayer Request & Advice..long post

I'm glad you've managed to keep busy; I know how much it helps to not focus on things. It's probably going to be months of various things; then waiting; but I wanted to let you know that I am thinking of you; because I know how hard waiting can be & how alone a person can feel.

~Hugs


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you, mboston! I saw that study too and I believe it said it's best to have the eggs taken before the woman is 38. I have just about 6 months til then so time is of the essence!

Roslvr, you are correct. Months and waiting, months and waiting. Your messages make me smile as you are so right and I take comfort that you know how I feel. Waiting is hard (esp. since I am such an impatient person anyways) but you are right about the "alone" part. As much as I have wonderful people in my life and online support, I really am alone. I have surprised myself with how well I have done over the last 3 months trying to read everything I can and of course taking my medicine religiously (read: neurotically) at the same exact time 4x a day. But really, at the end of the day, I am alone with my thoughts and fears and there is nothing anyone can do to help me with that.


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RE: Newbie Intro, Prayer Request & Advice..long post

Sorry; been busy following the missing 12 year old girl from my area. So horrible they found her last night. While it's a few miles via mapped roads; it's really close if you go through the woods. Horrifying to think we have killer(s) in the area.

I know; I've been there on different levels; as a daughter; DIL & wife. I know how hard it can be; especially when you stop for a few minutes & everything is silent; your mind is able to think. I hope you're able to come back to this post to remember we're all thinking of you. If you ever need us to give you some words of encouragement; do not hesitate to post. <3 ~Hugs


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RE: Newbie Intro, Prayer Request & Advice..long post

Just a quick update to say I had my appointment today and it was nothing major as I expected but of course was still all wound up about!

The nurse is going to call me tomorrow or Friday to schedule the D&C so I will be asking for ASAP as I get so anxious waiting. I did my paperwork with the doctor and the pre-op bloodwork so at least that's all done.

Everything at this point depends on the results of the D&C so even though it's considered a minor procedure, it's everything to me. There are 3 possible results: 1-the cancer is "gone" (meaning the meds worked), 2-the cells show as pre-cancerous (I believe I can continue the Megace for three more months if this is the case as progress is being made, but I'm not 100% positive), and 3-worse case scenario, the cells are the same as they were in July and then we have to schedule the hysterectomy and figure out what we can do to retrieve my eggs. I still have no options for a surrogate and I only briefly thought about how I'd feel with my eggs patiently waiting to be fertilized and maybe never getting the opportunity. I wonder if I'd be better off with no option if it's the case so I don't hold hope for the rest of my life. So much to think about. I'm just trying to take things one step at a time, hard as it is.

Speaking with my doctor today reassured me that I made the right choice in choosing her and I was very happy about that. She's very personable, answers my gazillion questions (even the ones that I expect her to look at me funny but she didn't). She's very thorough in explaining exactly what the procedure will be and the timeline of events. I know that's what all doctors should do for their patients but there is something so calming about her, it's hard to describe.

Thank you so much for the positive thoughts and well wishes for the last few months. I know I have gone on and on about this and posting here has been very therapeutic for me. I think everyone in my everyday life is just as anxious as me to get the results so I can move on from it, good or bad. It's draining even with a positive attitude! So again, I thank you for all the prayers and good thoughts sent my way. I don't know what I would have done without the wealth of information I received here, I can't thank you enough.


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RE: Newbie Intro, Prayer Request & Advice..long post

I've been waiting to hear from you. Fingers and feet crossed that all turns out in the most optimal way. Keep in touch. We're rooting for you.


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RE: Newbie Intro, Prayer Request & Advice..long post

Glad to hear today went well. Hope you get to have the D&C soon and get the results you are praying for. Keep in
touch.


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you, yayagal. I'll never forget that you offered to meet me in Boston if I ever had to go in alone; your kindness touched my heart in so many ways that you would do that for me. I was thinking about you today, and I can't believe that you were the first to reply on my post today! :)


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RE: Newbie Intro, Prayer Request & Advice..long post

Oops was replying to yayagal at the same time when mboston posted.

Thank you, mboston! I will keep in touch. If this thread can help one single person who searches for help and inspiration with this awful cancer, it will be worth it. It's been hard finding women in their 30s that share their experiences but this cancer is getting more and more popular, unfortunately. :(


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you for keeping us posted. I'm pulling for you and hoping for the best possible news tomorrow.


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RE: Newbie Intro, Prayer Request & Advice..long post

Wanted to let you know I'm thinking of you ~Hugs


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RE: Newbie Intro, Prayer Request & Advice..long post

I've been thinking about you too.

Bee


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RE: Newbie Intro, Prayer Request & Advice..long post

I've wondered too as I know you lived in the NE where Sandy went through or at least closeby. Hoping that this next year brings good things for you!


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RE: Newbie Intro, Prayer Request & Advice..long post

You are all so sweet, thank you. Somehow I missed the updates here but I have been reading all of the other threads. :)

I had my D&C in November and long story short, still came back as cancerous (but with a slight improvement). I was told to stop my meds and make the appointment to talk about the hysterectomy. I was beside myself as you already probably know.

I had an appointment with my oncologist a week later (the longest week of my life...) and went in armed with data and info from my research plus a disection of my pathology report with all of my notes of everything I could find online and at the library. My doctor is an amazing woman and she's human, she really listens to me and sympathizes with me versus some doctors I have had before are all business and the boss (for a lack of a better word). So, by the end of my appointment, I am back on my medication until February when I will have another D&C and we agree that if it's still cancerous,the hysterectomy will be asap as we can't wait any longer.

I have been praying a lot and trying to keep hopeful that there will be further improvement in February.

I also saw a fertility specialist at the end of November who will help me assuming the D&C comes back with no cancer. He's one of the best in his field from what my oncologist has told me and information I read online. He said we will be on a strict and fine timeline and of course there are no guarantees. As far as saving my eggs if the cancer is still present, it's pretty much a no-go unless I get explicit permission from my oncologist (which he doesn't think I will) as it's very high risk to inject the stimulating estrogen hormones into someone with an estrogen dependent cancer (it would be like pouring fuel on the fire). I cried for more than half of my hour long appointment with him, this is just so much to take in.

I found out this past week that a woman I went to high school with passed away from breast cancer that had spread to her vital organs, she was 39. I haven't seen her in over 20 years but to see her picture in the death notice seemed like I saw her yesterday. I found out that we were diagnosed about the same time, except she has 3 small children with one of them being a newborn. Now they have no mother and that breaks my heart. And it also reminded me of my own mortality and to think she is gone so quickly. I prayed to God that I am making the right decisions and for Him to guide me as best as possible.

We survived Sandy with just a few days of power outage (we lose power every storm so it's not unexpected). Just so sad for the people still struggling to get their lives back together.

Christmas is cancelled this year as I couldn't take the very thought and I am anxiously waiting for 2013. I wish you all a very Merry Christmas and Healthy Happy New Year. Thank you so much for posting on my thread; I didn't want to keep adding my bad and negative news but I promise you I think of you all often and know that you are all praying for me. For that, I am so very thankful.


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RE: Newbie Intro, Prayer Request & Advice..long post

I wish you a happy holiday season and all the best and positive for 2013, it's been nice to get your updates and I hope all goes well for you.


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RE: Newbie Intro, Prayer Request & Advice..long post

I had to wait awhile to post after reading yours this morning. I can understand why you are keeping things low key this season. I will "up my prayers' for you that your next results will be better and if not, that you will have the strength and resolve to do what is best for you. Keep in touch, please, if only to say hi.


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RE: Newbie Intro, Prayer Request & Advice..long post

Emerald; I cancelled Christmas too; as have a few people I know.

I'm sorry to read about your appointment; but so thankful that you were able to find this doctor who appears to be on your side. The post is to give you support no matter the good or not so good news; so please do not feel like you can't update because it's negative. You need more support when you get news like that.

I'm sorry to hear about your friend. There seems to be more & more younger people passing away from cancer. I will never understand why things like this happen to people like you or your friend.

Let's hope that everything works out with your next appointment. I will be thinking good thoughts for you ~Hugs


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RE: Newbie Intro, Prayer Request & Advice..long post

For those following that have not seen her new post; link is below.

Posted by emeraldisle624 (My Page) on
Mon, Feb 11, 13 at 18:34

Hi everyone,

I know I haven't posted much lately but I am here at least once a week seeing what you are all up to. I feel like I have been wishing the days away, trying to keep my mind busy and letting my body and medicine do it's thing. It's been a long 7 months since the endometrial cancer was first diagnosed.

I had my 3rd and final d&c last week at MGH in Boston. Everything about the procedure went like clockwork, unlike the last time. I was the FIRST patient allowed into pre-op in what seemed like hundreds that showed up at 5:30am. The lobby at MGH was seriously like a bus terminal, never seen anything like it. I wasn't the first one to show up nor was I the first one to see the people in the surgery check-in lobby but somehow I got to be the first sent down to the nurses in pre-op and get a room/prepped for surgery (everyone else had been told to take a seat and they'd be called soon). Then I was the first one wheeled to surgery and then the first one discharged! I swear God was holding my hand and making things as easy for me as possible, I had an aura-type feeling about me all day. If it was just my imagination, it's ok I'll take it!

I never saw or talked to my doctor, I think it was because everything was on schedule (or maybe even a bit early as my husband got the call at 8:30am that I was on my way to recovery) and they had me knocked out when she arrived.

Breezed through recovery, out in record time just to go home and wait 7-10 days for the results. I had such anxiety leading up the surgery that my whole body hurt. I swear I hurt even more in this past week waiting, like I tensed up while sleeping or something. I didn't feel too stressed during the day while awake as I have been pretty good at going with the flow and trying to put my trust in having everything work out the way it's destined to.

Since tomorrow is day "7" of the 7-10 days I was going to email the nurse and ask if any results were available yet. She knows I am anxious and that I would be waiting every last minute.

Depending on the results, I'd either be scheduling an appointment with the fertility specialist or to have my inevitable hysterectomy.

I got a call this afternoon that said "blocked" on my cell phone. My stomach dropped as I knew who it was going to be, the doctor or the nurse with my results.

I just wanted to update you all that I will be calling my FERTILITY SPECIALIST to make an appointment to get in there as soon as I can for the next step. All of the pathology came back with no malignancy found!

I even had her email me a copy of the report because I was so afraid that she called the wrong person and was giving me someone else's information! I have it in black and white, NO MALIGNANCY FOUND, in 2 different places next to my name!

I of course couldn't stop crying and I was waiting for my husband to get home. He got home and the dog ran outside with him. He's getting the mail, chasing the dog, all these things while I am just patiently waiting for him to come in. And I told him the doctor's office called and quickly went to add that the cancer was gone, I am to stop my meds and get in touch with the fertility doctor tomorrow. I felt like I was dreaming. I thanked God so much for answering all the prayers that were said for me and for giving me this opportunity.

I still have a long road ahead of me and there are absolutely no guarantees of anything. But I am going to try my hardest to make our dreams come true. I am so very thankful and humbled by everyone in my life (online and in person) who have reached out to me and helped me more than they will ever know.

Please continue to keep me in your prayers, I hope there is a miracle in the making. I am on a short timeline and I should have a better idea after seeing the fertility doctor again soon. (I think the meds have to be out of my system 30 days but I don't recall exactly.)

Sorry for the long post, I didn't want to leave a word out in case this and my other posts ever help someone else. I hope you are all doing well and please know I think of you all often. Your prayers and healing messages changed my life and today is living proof of that.

I am by no means cured of cancer, in case anyone just diagnosed finds this thread by googling or whatever. The only thing that happened is the medicine counteracted the hormones and, in my fancy medical terms, chased the cancer cells down and ate them. So, slowly but surely, since I am no longer taking the hormones, the cancer will slowly grow back and there is no way to know how fast or slow that could happen which is why time is of the essence to get pregnant now. When/if I get pregnant, my body will naturally make huge doses of that missing hormone and actually protect me from the cancer during pregnancy. I will have to have a hysterectomy within a few months or after pregnancy no matter what due to the cancer risk. I can't grasp how remarkable our bodies are.

Thank you again.
emeraldisle624

Here is a link that might be useful: Just a quick update!


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you Rose Lover for adding to this thread. I may have otherwise missed this.

EI,
When I read "FERTILITY SPECIALIST," I started to cry. I'm so happy for you. I'll keep praying and send good thoughts. Thank you for continuing to share you story. Truly a miracle.


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you so very much for this wonderful update. I am sitting here with tears of joy for you! And I will continue to pray for you.
-Donna


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RE: Newbie Intro, Prayer Request & Advice..long post

Your latest update is wonderful news! You will be in my thoughts and prayers.


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RE: Newbie Intro, Prayer Request & Advice..long post

Do you know what determines chemo verses hysterectomy? Just curious.


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RE: Newbie Intro, Prayer Request & Advice..long post

Thank you all so much! I feel so very blessed but still have a long road ahead of me. I am just thankful to have this chance to try for a baby. I told my husband there is a possiblity that we could end up with triplets using fertility drugs and his response was "Fine with me!". Now that made me cry with happiness. :) He'd be such a good dad, I hope I can do this for him and for us. Tonight is a bittersweet Valentine's Day. So much to celebrate but also trying to keep things in perspective. I tend to get carried away with excitement or worrying. Tonight is all excitement (and here I am on gardenweb, real romantic!).

Roslvr--as far as I know, a hysterectomy is the one and only cure for endometrial cancer. I know I have no other option, I will have a hysterectomy either in a few months or after giving birth. The cancer cannot be staged until the hysterectomy and at that time, it is determined what treatment is required then (radiation, chemo, etc). Any grading done prior to the hysterectomy is strictly a guess, based on my understanding. This is what makes it so scary, there is no way to know until it's all done.


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RE: Newbie Intro, Prayer Request & Advice..long post

Hello Everyone!

My name is Arhsub. I am new to this forum and just want to say thanks to the Admin for accepting me here. I hope to spend a good time with all of you. Thank you.


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