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.

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.

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

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!

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!

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.

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!

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

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

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.

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.

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

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!

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

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.

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.

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.