Tamoxifen

9 years ago

I have a friend who has just had a mastectomy. She chose that even though the cancer was pretty small. She just wanted to be on the safe side. It hadn't spread to the lymph nodes. No chemo, no radiation needed. Her oncologist is recommending Tamoxifen as a preventative for the other breast, though. The cancer she had in the removed breast is triple negative and was told Tamoxifen is not effective toward this type of cancer. However, she is being told that she more than likely has precancerous cells in the remaining breast and this will prevent her from getting cancer that it does affect. She at first turned it down after hearing about all the side affects. Now she is second-guessing her decision. She asked my opinion but I don't have any information on it, just what little I've read about it...which isn't much. Working at the VA we get very few women and very few breast cancer patients so it's not something I think about researching just to have information when I'm taking care of someone. She's a nurse too, but is a NICU nurse.

I texted a friend at work (another nurse) who had used this drug years ago. She didn't have any good things to say about it and only took it for a short time because of the side effects and 2 of her friends nearly died from pulmonary embolisms after taking the drug. My friend is supposed to take it for 5 years. I asked her if it was ok if I post this message. She is wanting to make an informed decision.

I know quite a few of you have gone through breast cancer treatment here and hope someone can give us firsthand knowledge of what to expect if she does take it. Are you glad you did? If not, why? Any information you are willing to share will be helpful. Her surgeon basically told her it was up to her. No reasons why she should or should not take it, just "it's up to you." She tried to make an appointment with the oncologist again to discuss it one more time but was told they might be able to do it over the phone. That doesn't sound too encouraging to me.

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Comments (11)

chloe_cat
9 years ago
I took it for six weeks (my breast cancer was ER/PR+) and ended up with a DVT.

A doc prescribing it "in case" is actually pretty common, but with triple neg bc, it's odd.

Studies I've read show Tamox only adds (on average) 7 months of life, btw.
Kathsgrdn
Original Author
9 years ago
I've been reading a little bit about it on-line...I see the bias depending on what site you go to. We both were wondering about the type of cancer and why they would want her on this drug.
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Weird that she's on something different then Tamoxifen. Hers might be a different form or be positive for something different; has to do with hormones. My mother in law is hormone positive for something which gets Tamoxifen. Patrick Swayze did cyberknife. I'm pretty sure I sent you the info at one time; if not, google. See if there is a center by her. She can make an appointment. Patrick also did stuff like Brett Hudson; vitamin C drips; went to Germany or Mexico. In addition to the chemo he did the warm washes (not sure of exact term) which makes the chemo heat up and work better. With your cousin K; it's very hard to say what to do. With mine; and I hate even typing this out.. people that are not in our lives; it freaks him out more hearing from them. It makes him feel like he is dying. Hard staying positive when all these extra people are calling or emailing/texting. Depending on who is doing the contact; it can tick him off. Every person is different; a lot of men don't like the extra fuss where women do. Best I can suggest is that you make the phone call and it gives her the option of picking the phone up & or calling back. This puts the ball in her court. I'll try to update the post later today, or tomorrow morning. Right now he's doing fine but had a major infection last week in the feeding tube & fungal in his mouth.
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susanjf_gw
9 years ago
I'm on the other side of the coin...I've taken anastrozole (1mg) for going on 5 years...recent bone density show some onset of bone loss...but you do what you must. never been a fan of menopausal hormone replacements....

I was fortunate to only have a lumpectomy, followed by radiation and chemo....everyone has to follow what they have to do to stay well!
Kathsgrdn
Original Author
9 years ago
I think she's made up her mind already. Thanks for the replies.
chisue
9 years ago
I see no clear advantage, and a lot of downside.
susanjf_gw
9 years ago
you may be right chisue, but I hope that her oncologist is diligent and she sees them on a regular basis. I did, for the first couple of years...(quarterly appts) and the first 2 years, 2x mammos...now I'm down to 2x a year and single mammos....(what ins allows)
Kathsgrdn
Original Author
9 years ago
She's decided against taking it.
heather_on
9 years ago
I took it for five years with no side effects at all. I was ER, PR + though. Not sure I would have bothered if I was negative. I did get cancer on the other side years later.
Kathsgrdn
Original Author
9 years ago
Thanks for the reply, Heather. I think that's what she's thinking. Didn't make sense to either one of us with all the side effects.

How are you doing, by-the-way? I haven't seen you post in a while. I don't come here as often as I used to, though.
heather_on
9 years ago
I am doing ok, have some after effects from the chemo, radiation and being "fluffy" but surviving is wonderful. Thanks for asking. I pop in periodically and post a bit, but I am not as active as I used to be.

I have been busy making crocheted breast forms for women with mastectomies. They are done free for women and I have been sending them all over the world. Lots of fun!

This post was edited by heather_on on Tue, Sep 9, 14 at 11:09
Kathsgrdn
Original Author
9 years ago
Glad you're doing good, Heather. Sounds like a nice thing you're doing for other women. ( :

Tamoxifen

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Tamoxifen

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