New Study on CA125 Sparks Concerns within the Ovarian Cancer Community

June 4, 2009 (Washington DC): The Ovarian Cancer National Alliance expressed concern today that a study, released last week at the annual meeting of the American Society of Clinical Oncology in Orlando, Florida, asserts that early detection of recurrent disease using the CA125 test five months earlier does not make any difference in survival, given the inability of early treatment to affect the course of the disease. This finding challenges the idea that the standard use of CA125 as a regularly administered test to detect recurrence of ovarian cancer offers women the chance to monitor the disease and choose to be proactive in treating its recurrence. The data, presented by Dr. J.S. Rustin, suggests that ovarian cancer survivors who receive chemotherapy treatment based on the CA125 test did not live longer with treatment given before symptoms reappeared than women who waited to begin therapeutic chemotherapy once symptoms appeared. Such symptoms include bloating, frequency or urgency of urination, difficulty of eating or feeling full quickly and pelvic and abdominal pain appeared.

Rustin states, "For the first time, women can be reassured that there's no benefit to early detection of relapse from routine CA125 testing." Dr. Rustin is director of medical oncology at Mount Vernon Hospital in Middlesex, England, and the lead author of the study. However, this is far from reassuring to ovarian cancer survivors.

The Ovarian Cancer National Alliance noted that perhaps the greatest fear of women who have survived a diagnosis of ovarian cancer is that this insidious disease will recur, and often it does. Thus, of paramount importance to these women is the ability of a test like the CA125 to quickly and accurately detect a recurrence so treatment can be initiated. Though the study suggests that such treatment may not affect the ultimate outcome, the larger question becomes one of treatment options, rather than detection options.

Currently, CA125 and the CA125+HE4 are both FDA approved to monitor recurrence. Even in the absence of noticeable symptoms, a rising CA125 may lead to further tests such as an MRI, which will detect the disease, at which time therapies can be given. Additionally, other tools such as PET scans are used to detect cancer at the cellular level.

CA125 was developed by Dr. Robert Bast, Vice President for Translational Research at The University of Texas M.D. Anderson Cancer Center in Houston.

Dr. Bast commented, "Dr. Ruston's presentation emphasizes the need to discuss with each patient whether or not to monitor CA125 after the completion of primary chemotherapy. It will, however, be critical that women continue to have that choice, as many women will want to know the status of their own disease and will want to have the additional five months to receive novel treatments that might be more effective against small volumes of recurrent cancer. "

According to the conclusion of Rustin's abstract, it states that "there is no survival benefit from early treatment on a raised serum marker level alone and therefore no value in the routine measurement of CA125 in the follow-up of ovarian cancer patients."

The data may be misinterpreted, as physicians who participated in the study were not required to use one therapeutic protocol, but made their own determination on which chemotherapy to use. Bast explains, "The majority of women did not receive optimal chemotherapy at the time of disease recurrence."

Karen Orloff Kaplan, CEO for the Ovarian Cancer National Alliance, states that "Women should not have to live with the fear of recurrence, test to test. Dr. Rustin's conclusion makes the point that we need better measurements for recurrence as well as initial diagnosis. Nevertheless, although CA125 may not be a completely accurate test for presence of ovarian cancer in many women, it has shown promise for others. Our hope is that these new findings will serve as a catalyst to the research community and those who fund their work, to redouble their efforts to find an early detection test, and more effective treatments, when survival rates are highest."

________________________________________
About the Ovarian Cancer National Alliance
Established in 1997, the Ovarian Cancer National Alliance is the foremost advocate for ovarian cancer in the United States. Until there's a cure for the disease, the Ovarian Cancer National Alliance, a 501(c)(3) organization, leads the national initiative to conquer ovarian cancer. We unite individuals and organizations at the local, state, and national levels to advance ovarian cancer research in the quest for early detection tests, improved health care practices, and development of live-saving treatment protocols.

By verlinda
Posted June 6, 2009 at 7:16 am
Report post

I've had a few days to think about this and see some good news/bad news scenarios.

The bad news would be insurance companies jumping on this as a reason to refuse to pay for the CA125. For women like me, who have other health conditions with the same symptoms as ovca, that would be horrendous. I'd be stage 4 before I realized I was really sick.

Also, in the long run, it could prove more expensive for insurance companies as (I hope) more CT-scans or MRIs or PET scans might have to be used. (Probably not the case, but we have to monitor somehow.)

The good news if we get to keep the CA125s is the early vigilance which would allow me to pay more attention to the symptoms. The best news is that I have more time to make a decision and research and, perhaps, have a little input about what poisons I put into my body to fight cancer. In the year of recurrence my sister had before her death, she went through five additional types of chemo as doctors tried to find one that would work. She reached the point where experimental studies were the only thing left. She couldn't enroll in many of them because she'd had the other chemos. She was automatically excluded because the results, if she survived, could not definitely be attributed to the drugs used in the study because she'd had so many other drugs! It was a "Sorry, dear, but since we couldn't prove ours was the drug to save you, you'll just have to die!"

Being fair, there's also a limit to how much your body and spirit can take. A couple of months before she had to give up trying she talked to me about how hard it was to accept it when other ovarian cancer friends made the decision to stop treatments.

Just a few thoughts to ponder, ladies. I plan to push to continue to have CA125s until a new, better test is developed.

Blessings.

By Patricia123
Posted June 6, 2009 at 9:31 am
Report post

A good balanced article. What I hope for is not a rush to deny ca 125 as important or early treatment as important. The point that the women who had recurrence had no standard or even the best treatment sort of damns the study if you ask me. How can you compare outcomes with treatment that is not best treatment and controlled for type of treatment.

It does say you have time to breathe and decide and that is a good thing. But I just can't help but think that treatment of small vol disease makes it far less likely that you would get intestinal obstruction, etc. It is just so counterintuitive to think that waiting is the same as early treatment. I cannot think of a single disease that it helps to wait for treatment to get the best result.

Can anyone think of one disease that it doesn't matter when it is treated, early or late, as to outcome? I can't.

By bevl
Posted June 6, 2009 at 2:51 pm
Report post

I don't think I'd accept another round of chemo just based on rising CA125 anyway. My doc and I have already discussed that...I wouldn't want to compromise my short term quality of life with chemo until my quality of life is already being compromised by the disease.

But I agree with Verlinda. I would want to keep getting the CA125 test because it might help me be more vigilant about symptoms.

Bev

By chally
Posted June 7, 2009 at 12:30 am
Report post

FYI......... APPROXIMATELY 3 YEARS AFTER INITIAL DX STAGE 1C (SURGERY/CHEMO)......I BECAME ALARMED BECAUSE MY CA 125 HAD BEEN STEADILY RISING....... ALTHOUGH WELL BELOW 35......I ASKED FOR A PET SCAN..... DR DID NOT FEEL IT WAS INDICATED BECAUSE I WAS WITHOUT OTHER SX........WE ARGUED...HE RELENTED.......PET SCAN SHOWED AN APPROXIMATE 3CM LESION IN MY LIVER - STAGE IV!.!!!!!.......IT WAS A SINGLE LESION - GOOD NEWS- I HAD SURGERY TO REMOVE LESION AND CHEMO AGAIN...I AM 21 MONTHS OUT FROM SURGERY AND HAVE BEEN NED!.......I HAVE A PET SCAN IN TWO WEEKS....ALWAYS NERVOUS ABOUT THIS TEST...CA 125 HAS BEEN 11 OR BELOW........SO, I HAVE A CA 125 TEST EVERY MONTH!!!!!!!.......MANY STATEMENTS IN THAT ARTICLE I FOUND TO BE CRAZY!!!!! SOME DR'S JUST DON'T GET IT.....I WANT AS MUCH INFORMATION AS SOON AS POSSIBLE ......SO I CAN MAKE DECISONS AND HAVE AS MANY OPTIONS AS POSSIBLE..........NOT SIT AROUND AND WAIT TILL I AM DYING OF OVARIAN CANCER..............AND.... "SORRY ....WE CAN'T DO ANYTHING AT THIS TIME...TOO BAD."

By verlinda
Posted June 7, 2009 at 12:59 pm
Report post

I was raised in an extended family of doctors and nurses, so I have a strong, strong belief in traditional Western medicine. I have also read entries here of women who "did everything right" to take care of their bodies and still had ovca and recurrences.

Having said that, I am experimenting with a combination of naturopathy and traditional medicine.

I've always heard that everyone has cancer cells in their body, just some people have immune systems that are better at recognizing them and killing them.

So here is the question I've had ever since I learned I had cancer. If we strengthen our body's natural immune system and do our best to stay "detoxified," would our bodies be able to eliminate some of these tiny recurrences if we strengthened our natural immune system instead of using chemo? It's awfully easy to throw this hypothesis out there when I'm not faced with having to decide what to do. But I keep thinking of some of the easily noticeable side effects of chemo I'm still fighting 19 months later and can't help but wonder what internal effects are going on that I don't see.

I have a 14-year-old son, so I'm not going to be as likely to gamble if I have a recurrence. Then I think, "It's a crap shoot either way. My decision will be which dice to roll."

Ladies who bravely persevere through recurrences, I salute you, admire you, envy your strength and pray for you.

It's a decision I hope not to have to make, but you better believe I'll call on all you sisters to help me through if I do!

By KellyRilla
Posted June 7, 2009 at 7:59 pm
Report post

I've had over 30 something chemo tx since being diagnosed three yrs ago. I keep plucking along and most days feel real good. But now I've noticed some symptoms creeping through and ruining my fun. And it took a ca 125 of 2250 before I noticed anything.

Lately I'm a little depressed. This article is one reason and the other is a bad CT. But I knew it would be bad based on my rising ca 125. We've switched drugs to Topotecan from carbo and I'm waiting on it to start working.

In a frank converstation with my doc it's apparent that there is NO standard treatment for recurrence. It very much IS a crap shoot. You have to play your cards right like Verlinda says and look at the clinical trials early on. If you take certain drugs it will exclude you from the trials and leave you with less options. And you need options. If you should get a recurrence search the clinical trials websites.

It's like a hand full of playing cards. Once you lay some on the table you can't pick them up again. There are tons of reseach and experimental drugs out there. And of course their is tons of alternative medicine as well.

And if all else fails, there's always aspargus!!

Hugs to all!

By cjpipkins
Posted June 7, 2009 at 11:25 pm
Report post

YOu said your ca125 con't to go up but stayed below 35 what was it before he finally did the PET that showed the problem on your liver? Had OVCA 7 years ago 3C then recurrance 1 year ago and still do CA125 every month (when I get my port flushed) is only 11 now but I have the worse pain on my left side and back.

By chally
Posted June 8, 2009 at 12:17 am
Report post

HI CJPIPKINS......AT THAT TIME...THAT DR (WHO I NO LONGER SEE - ANOTHER STORY FOR ANOTHER TIME MAYBE)...I WAS ONLY GETTING CA 125'S EVERY THREE MONTHS...THE HIGHEST I HAD EVER HAD WAS 49- RIGHT AFTER MY 1ST SURGERY AND BEFORE I STARTED CHEMO.........I WAS IN SINGLE DIGITS FOR MORE THAN A YEAR...THEN I HOVERED AROUND 11 - 12 -15 - 12 -..........THEN IT STARTED HEADING UP AT A STEADY PACE .....14 -14-16-19.......(LOWEST EVER WAS 6...... NOW IT WAS 19) THAT'S WHEN I HAD THE PET...ONE MONTH LATER IT WAS 27! THE HIGHEST I HAVE EVER HAD WAS POST SECOND SURGERY AT 130 BEFORE CHEMO.........I THINK THE NUMBERS DON'T ALWAYS TELL THE WHOLE STORY ......BUT THE TREND SEEMS TO MAKE A DIFFERENCE........ AT LEAST IN MY CASE AND YOU CAN BE SURE I AM WATCHING MY CA 125'S VERY CLOSELY....NOW WITH THE DR I AM SEEING, I HAVE THE TEST MONTHLY ...THAT COULD CHANGE WHEN I AM THREE OR FOUR YEARS OUT.....MY LIVER SURGEON SAYS I "MUST" HAVE PET SCANS EVERY 6 MONTHS FOR THE FRIST THREE YEARS POST SURGERY.......THAT WORRIES ME TOO BECAUSE THEY ARE NOT WITHOUT THEIR OWN VERY REAL DANGERS/SIDE-EFFECTS....AS WAS STATED EARLIER...IT REALLY IS A CRAP SHOOT.....WHERE DID THE CANCER SHOW UP WITH YOUR RESURRENCE?....DO YOU EVER HAVE CT'S OR PET SCANS?.....MAYBE YOU SHOULD HAVE THE PAIN CHECKED OUT.......CHALLY

By ALWAYS
Posted June 8, 2009 at 8:10 am
Report post

I Don't agree

Every time my CA125 went up my cancer returned.
But each time it was caught early and put me back
into remission. If not for this test it would give
the cancer time to spread until we feel the signs .

I have been going through this for 14 yrs an had
two recurrences. I truly believe even though I
fear the test it has saved my life.

We will live with fear for the rest of our lives but with this test we can catch it early and because of this
I have seen all my three grandchildren born
My doctor is a doctor at Stoneybrook Medical Center
Stonybrook NY and he believes this test saves
lives . I must be sensitive to this test and when It
went up my cancer returned first 5 yrs second
10 years. If I had to I would pay for it myself.
The first recurrence it had alread started to spread
like little pieces of grain. But the chemo stopped it
and I was good for another 10years. All we can do
is hope and pray.

Blessings to all of you

Anita

By PLE
Posted June 8, 2009 at 8:58 am
Report post

Anita,

I agree with you...my CA was 3800 when first diagnosed in 2007. It dropped to 8 after chemo/Avastin. I had my first recurrence in March of this year and CA was 1300 which prompted a biopsy and now after 2 sessions of chemo it is down to 85! I know it is not a good tumor marker for everyone but if it is...why are they questioning this??

What an inspiration that you are 14 years from diagnosis!! You give us all hope.

By FightersDaughter
Posted June 8, 2009 at 11:01 am
Report post

My mother's CA recently rose from 4 to 85 (it was 2200 when she was first diagnosed in 2007). Her wonderful super awesome extremely..did I say awesome?..oncologist immediately ordered retesting, then a CT, which showed the cancer was not only returning, but was dangerously close to her kidney - if it had not be caught when it was, it could have caused major problems for her. (To be precise, it was pinching the tube that runs from your kidney to your bladder.) She's on her twelfth of eighteen treatments, and at last count her CA is back down to ten.

This article disturbs me. Dr. Awesome (who he shall now be called) is very diligent about staying on top of her CAs, and so far this has prevented her from having other problems to deal with on top of fighting the cancer (we found out she had it when she had to have a major stomach bypass - by that point she couldn't even hold down water). The last thing we need is for CA testing to be devalued.

(Not to mention it's good piece of mind - Mom's next CT is Monday and due to her low CA, she's not stressed out about it like she'd normally be.)

By djwaz184
Posted June 8, 2009 at 3:21 pm
Report post

I'm not sure I'm following. One statement reads, " I have also read entries here of women who "did everything right" to take care of their bodies and still had ovca and recurrences...

yet within a few short sentences, the following statement or shall I say question is made, " If we strengthen our body's natural immune system and do our best to stay "detoxified," would our bodies be able to eliminate some of these tiny recurrences if we strengthened our natural immune system instead of using chemo?

I, like so many others, am baffled on why cancer attacks some, yet leaves others alone. I have to wonder if depriving our bodies of what we crave is a good idea either. Whether that means eliminating meat, or whatever the "bad food of the day" happens to be. For that matter, does any of that REALLY matter when it all gets boiled down?

If we do the right thing at the beginning, yet still get cancer, what makes anyone an expert to say that we have to do things a certain way now to prevent more? We're all different, and as we've all read, the treatments treat each of us pretty differently too. What exactly do those folks that did everything right do wrong in the first place? And, what exactly do they change now?

I've come to the conclusion that Cancer is like music or art, in that it reaches across all ages, ethnic backgrounds, healthy lifestyles or not so healthy lifestyles. it doesn't matter what your income is, who you like politically, it will hit you like it or not, in some shape or form. Whether end up as a caregiver (like me) or as a cancer patient (like me), yes, I've been both now.

All in all, cancer just plain SUCKS and it certainly is NOT music to my ears!

By LilySue
Posted June 9, 2009 at 6:56 pm
Report post

This disease is as varied as the individuals who have it. I was diagnosed stage IIIC in July 1997, went into remission after surgery and chemo in November 1997. My CA125 started rising 18 months later. CT scan showed a small tumor in my pelvis. I was put on a clinical trial of a new chemo drug which failed. Then I had surgery to have the tumor removed - it was benign. My CA-125 continued to rise and there was no other evidence of disease on scan and I had no symptoms. I took a leap of faith with my GYN/onc and chose not to treat the numbers. For the next five years I watched the numbers go up every month, continued to have clear scans. In Feb 2005 CA-125 reached 950, I developed lower back pain and shortness of breath and PET showed a huge tumor in my chest. I had surgery, tumor removed completely, no other disease, no chemo. Tumor was metastatic ovarian that was beginning to show some changes to clear cell type. Still in remission. Worked great for me. Others I know have had to start chemo as soon as their CA-125 starts to rise as their disease tends to spread throughout their abdominal organs and lymphatic system. This study seems to validate that our treatment choices are not written in stone. No one protocol fits everyone. Susan

Welcome to Inspire!

Explore topics in this discussion:

14 replies

Add to the discussion

OCNA on Twitter

Group leaders

You