Return to the Kitchens Forum | Post a Follow-Up

 o
Important blood test for women-CA125

Posted by artteacher_nj (My Page) on
Tue, Jul 18, 06 at 23:33

Excuse me, but it's that time of the year when I get on my soapbox.
My sister past away 2 years ago from ovarian cancer. Here is her story and how you can help yourself~

To all my friends-

My sister, Leslie, passed away two years ago from peritoneal/ovarian cancer.
Unfortunately, there isn't a routine screening for this kind of cancer.

However, there is a simple blood test called CA-125 that can detect ovarian cancer, but doctors don't regularly recommend it.

We MUST take it upon ourselves to request this blood test every year!
Even if your ovaries have been removed, you still need this test. Primary peritoneal cancer is detected with this test, too.

It isnt foolproof. However, it is the ONLY test out there.

My sister was diagnosed at 46 years old and was already in Stage 3. If she had this blood test regularly, she may have caught it in an earlier stage when it would have been easier to cure.

The CA-125 test is just a simple blood test.
It is not considered a cancer test because it's just a tumor marker, so doctors don't suggest it as a routine screening for women.
The healthy result is a number under 35.
My sister's number was in the thousands! If she had the blood test sooner, she might be alive today.

A raised CA-125 number doesn't always mean cancer, but it does mean there is SOME problem. Doctors don't want to deal with nervous women who get "false" positive results.
But "false" positive still means that there is some sort of problem going on that a woman should be aware of, like endometriosis or pregnancy.

Please request the CA-125 blood test as part of your regular gyn check-up each year. I get one every 6 months because of my sister.
DON'T let your doctor talk you out of it!

Unfortunately, ovarian cancer has no early symptoms.
My sister was healthy and had no family history. Her only symptom was slight abdominal/rectal pressure and feeling bloated. She thought it was normal female discomfort or a gastric problem. Her doctor sent her for many tests, but never suggested a CA-125. I suggested that she see her gynecologist, and she was finally given this test and diagnosed! By that time she was in Stage 3.

FYI- Leslies other tests were all clear- CT scan, colonoscopy, endoscopy, ultrasound did show some fluid, but NO cancer. But the CA 125 was in the thousands, so the doctor knew.

Please get the CA-125 blood test yearly, and tell all your relatives and girlfriends!
Sorry to get on my soapbox, but, hopefully, this will save lives.
Your friend,
Gail


Follow-Up Postings:

 o
RE: Important blood test for women-CA125

Gail-I am so sorry for the loss of your sister. Please stay on your soapbox. So many women do not know of the importance of the CA-125. I also get mine twice a year as my sister was also diagnosed with ovarian cancer. Thanks for helping to spread the word.


 o
RE: Important blood test for women-CA125

Thanks for sharing your story Gail. I had my first CA-125 blood test this year; part of the blood test prescription from my new female primary care physician as part of my physical.


 o
RE: Important blood test for women-CA125

Gail, thanks again. I remember when you posted this last year, and I asked for it, and my provider wouldn't do it. Can't remember specific reasons, but I vaguely recall her saying that the results weren't conclusive in and of themselves, and that if I really wanted the test, I had to be committed to having the surgical procedure as a result. She said that this test produces false positives too often to make it worth it. I don't know, I still wish she'd given me the test, so I will ask about it again when I go in for my annual this year.

So sorry for your loss.

Nancy


 o
RE: Important blood test for women-CA125

I don't want to hijack your thread, but does anyone know a good female GYN convenient to central NJ? We're moving shortly and I need to get caught up on everything. I'd sure like to find someone open to doing this test routinely!


 o
RE: Important blood test for women-CA125

Proudmamato4-
Try not to be talked out of the blood test. A false positive may not mean ovarian cancer, but it DOES mean something- pregnancy, endometriosis, etc. It means something you should know about!

The problem doctors want to avoid is an elevated number of 50-80, when under 35 is normal. The patient will understandably be upset, yet that number is inconclusive.
Well, most doctors will then keep a good eye on you, order a retest in a month or so and possibly an ultrasound.
It DOES NOT mean you automatically have to have surgery.

My sister's number on her first CA-125 was in the THOUSANDS!
Obviously, there was a time when it was 100 or 200, and they could have done something for her earlier. Finding ovarian cancer in Stage 1 or 2 has a MUCH better prognosis.
Unfortunately, women do not feel any symptoms until Stage 3, when it is too late. I personally know 3 women diagnosed in their 40s and 50s with Stage 3. They all passed away within 3 years of diagnosis.

If they had INSISTED on having the CA-125 as a part of their routine examination, they might have been diagnosed in an earlier stage.
Please have the test!


 o
RE: Important blood test for women-CA125

FYI - Medicare does not pay for CA-125, even though the dx. code used was "family history of ovarian CA". They claim it's not a diagnostic test. However, I notice that Medicare will pay for an annual PSA (prostatic serum antigen)for men. So I pay for my own blood test, and also have an annual pelvic and trans-vaginal ultrasound. Better safe than sorry. I have a friend who is now battling ovarian CA, discovered at stage 4 after she had the blood test. No symptoms in the early stage of that awful disease.


 o
RE: Important blood test for women-CA125

Mimi- Good for you!
Women should fight with the insurance companies over payment, especially when they pay for men's PSA!
I have found that you have to resubmit the insurance claim a few times- fight for it!


 o
RE: Important blood test for women-CA125

Thank you so much for sharing your story. It prompted me to call my doctor this morning and demand the CA-125 test as part of the bloodwork she prescribed for me yesterday.

Last fall, at age 37, I developed symptoms similar to those your sister had. My doctor ordered a CT scan and referred me to a gastroenterologist. The gastroenterologist told me that I'm probably lactose intolerant but referred me anyway to my gynecologist because the CT scan showed a tiny bit of fluid around my ovaries. The gynecologist ordered an ultrasound which came back normal. All of these doctors have assured me that these lingering problems have nothing to do with my ovaries because my ultrasound came back fine and I have no family history of ovarian cancer.

I'm hoping, obviously, for a negative result on this blood test so that I can put my mind at ease. If the test does come back positive, I will be so angry with these doctors for not ordering it in the fall. After all, my life is worth so much more than the cost of the test (and I'll be paying for it myself anyway)! Thanks again!!

Robin


 o
RE: Important blood test for women-CA125

I too have ovarian cancer in my family. My doctor also recommends a regular sonogram.


 o
RE: Important blood test for women-CA125

Robin- I am so glad you are having this test. Hopefully, you will get a good result and put your mind at ease.

It is so important for women to be their own advocates. You know your own body!

Unfortunately, ovarian and peritoneal cancer have no symptoms, or very vague symptoms in the early stages.

CA-125 is a simple blood test! Ask for it, demand it, when you are having other blood work done.


 o
RE: Important blood test for women-CA125

I have to say that I see both sides of this argument. While the CA-125 is actually a tumor marker not a predictive test, when done in combination with other diagnostics such as imaging and pelvic exam it can sometimes be useful in detecting ovarian cancer.

But at stage 1 (when detection is most important for long term survival) it only has a 20% positive predictive value. Meanwhile not all women are sensitive to the CA-125 protein, causing false negatives and further muddying the water for proper (and quick) diagnosis.

You can push for the CA-125 all you want, and even after there is a bona fide screening test, you can have it yearly. But this disease grows so fast that you'd have to be in the doctors office a lot more often than yearly to catch it before it is too late by a screening test alone.

On the other hand, the Journal of the American Medical Association, perhaps the most highly respected journal by all physicians, reported in June 1994 that 95% of women with stage 1 ovarian cancer reported having symptoms. The problem was that the symptoms were not the urgent symptoms that might send you straight to the ER. Therefore women did not get them checked out (or more likely they did and were not diagnosed properly until much later). Many of these women did not have elevated CA-125s until stage 3 or beyond.

The best thing you can do is stay aware of your body for persistent and unsual symptoms. If you have GI troubles or strange and unusual symptoms relating to weight or your abdomen (shortness of breath, urinary problems, bloating, extreme fatigue), for MORE THAN TWO WEEKS almost daily, that's when it is time to see your doctor. And at that point you should mention ovarian cancer and question if that could be the case.

In the case of family history, yes, you absolutely should get a CA-125 reading just becasue you are high risk, but only 10% of these cases are hereditary and the chances of an elevated CA-125 for another benign reason (that you don't need to be worried about) are much higher than the chances that the test will pick up ovarian cancer before stage 3 or 4.

Also, 35 is not the normal reading for everyone. Please make sure you have updated information. Guidelines concering this very confusing test have changed as recently as two months ago.

Another important thing you can do is see a gynecologic oncologist if ovarian cancer is suspected, before diagnosis. The proper surgeon is five times more liekly to remove all the disease than a regular ob/gyn or general surgeon.

You can double check this information with the American Cancer Society, the Gynecologic Cancer Foundation, or any national organization to do with ovarian cancer. That alone should tell you something.


 o
RE: Important blood test for women-CA125

Hi artteacher, thanks again for the reminder.

I'm going in soon for a second thyroid test to see (frankly CONFIRM) that the dosage I am currently on just isn't enough. When I go see the doc to get the little form for the lab, I'm going to ask him to sign me up for the CA-125 as well.

Once again, I am sorry for your loss. But I hope you save a life or two with your message.

Love,
Ivette


 o
RE: Important blood test for women-CA125

Bamabelly- Thanks for all the information. You seem to have had experience with this.
I know that the CA-125 is not a perfect test, however, it is all we've got right now. Hopefully, a better test will come along.

Ivette- My daughter was recently diagnosed with Hashimoto disease. She has started taking medication, too.

Robin- I have been thinking about you everyday. My fingers are crossed!


 o
RE: Important blood test for women-CA125

ArtTeacher - Thanks for the crossed fingers! I had the test done and it came back perfectly normal (under 25). I was cautiously optimistic going into the test because my symptoms have decreased over the course of the year but it's still nice to know that they are probably not related to my ovaries; I hated always having that worry in the back of my mind!

Now that I've had the test, I'll ask for it every year. I know that it's not perfect but it's better than nothing. Thanks again for bringing it to my attention.

I'm so sorry that you lost your sister to this horrible disease.

Robin


 o
RE: Important blood test for women-CA125

Many, many docs don't feel this test is worth the expense. It has such a high rate of false negatives and positives that it is not considered at all definitive.
Other forms of investigation are also necessary to determine a positive result.

If, in fact, one did receive a high result on this test, the most responsible way to determine if there is a problem for real is to do surgery. Other tests are not definitive either.

It is a real problem for us as we do not have any tests that can say without question (or close to) we have ovarian cancer.


 o
RE: Important blood test for women-CA125

Unfortunately, this test is all we have, and ovarian cancer left unchecked is a death sentence.

If you receive a high number, you can have an ultrasound and have another CA-125 done. They don't perform surgery unless they are sure you have some tumor growing.

My sister was 46 years old when she was diagnosed. She was otherwise healthy and a very active mother of an 11 year old. When she finally had some discomfort- bloated and some rectal pressure- her CA-125 was in the THOUSANDS!

Somewhere along the line her CA-125 must have been 70, 100, 200...... and if she had this test as part of her yearly gyn check up, she might have been diagnosed when the cancer was Stage 1 or 2.
Unfortunately, by the time you feel any symptoms, the cancer is in Stage 3 or 4, and it is too late.

I personally know 3 people who have passed away from ovarian cancer, and one who is bravely battling it now. It is an awful disease.

I know the test isn't perfect, but it's all we have.
It is better to suffer through one blood test a year, and possibly the cost of the lab bill, than to be diagnosed with Stage 3 cancer.


 o
RE: Important blood test for women-CA125

Gail, I know you mean well, but only people who have a family history of ovarian cancer OR have other symptoms of ovarian cacner need this test. Unfortunately, surgery is the only option and "they" _will_ do surgery -- often unnecessarily, and with risks -- if they see an elevated CA-125. It's the ONLY way to diagnose ovarian cancer. But based on the CA-125 alone, it is often an unnecessary surgery. (Ultrasound, CT scan and even PET scans are just as ineffective. Only a combination of these tests AND reported symptoms are the way to find the suspicion of ovarian cancer. Not one of them is a stand-alone test.)

As for symtpoms, please read the May 2004 issue of the Journal of teh American Medical ASsociation. There is a great article there explaining the research on this. 95% of women DO REPORT SYMPTOMS AT STAGE I ovarian cancer.

Also, the CA-125 is not even the same value from woman to woman. The guidelines just changed on this test in February, and now a 35 is not the magic number. Based on age and a host of other factors, a reading of 70 could be considered "normal."

It's a very very confusing test. It's not a screening test for ovarian cancer, no matter how you look at it.

Every national organization and every physician and subspecialist in this field (and most actual ovarian cancer patients) will agree: The best tool we have is to raise awareness about this disease is to encourage women to look for symptoms and get them to their doctors at stage I. There's even legislation about this.

And because the disease is so agressive and fast-growing, even if there is a 100% foolproof screening test, awareness of symptoms will still be equally as important. The CA-125 can jump from 70 - 7000 in a week's time. Symptoms occur even earlier. A yearly blood test won't be often enough. it's not like cervix cancer, which is slow-growing and can wait a year to be diagnosed with a Pap test. This is a seriously aggressive cancer which needs constant vigilance.

This is what I do every single day. I spend 75% of my time with ovarian cancer patients and many, many of them get so frustrated when this test is misunderstood. 3 of our current patients had NO elevated CA-125 and this made them think their symptoms were "just menopasue" or something else...until the symptoms became so regular that it was late-stage, full-blown, unmistakeable ovarian cancer. Had they not relied on that test, they may have been treated earlier.

Another 2 of our patients had elevated CA-125 and had a surgery they did not need. One now has a serious staph infection and the other is now missing her ovaries...but neither has ovarian cancer.

Gail, I completely agree with you that we must call attention to this disease. But the best way we can do it is by spreading awareness about symptoms so that we can get women into their doctors earlier. THEN a CA-125 MIGHT be appropriate (and a pelvic exam and an ultrasound or a CT scan or a risk assessment).

If anyone wants to see more, please visit www.wcn.org.

And Gail, I am really sorry to hear about your sister. It's hard to watch someone fight this disease.



 o Post a Follow-Up

Please Note: Only registered members are able to post messages to this forum.

    If you are a member, please log in.

    If you aren't yet a member, join now!


Return to the Kitchens Forum

Information about Posting

  • You must be logged in to post a message. Once you are logged in, a posting window will appear at the bottom of the messages. If you are not a member, please register for an account.
  • Please review our Rules of Play before posting.
  • Posting is a two-step process. Once you have composed your message, you will be taken to the preview page. You will then have a chance to review your post, make changes and upload photos.
  • After posting your message, you may need to refresh the forum page in order to see it.
  • Before posting copyrighted material, please read about Copyright and Fair Use.
  • We have a strict no-advertising policy!
  • If you would like to practice posting or uploading photos, please visit our Test forum.
  • If you need assistance, please Contact Us and we will be happy to help.


Learn more about in-text links on this page here