If you'd like to share opinions on new development

Hello! I joined this community when my partner Lynn was diagnosed 1C clear cell on October 4, 2007---she is about two thirds through chemo now, and testing well. But I'd like to ask the community at large about something else.

As I stated when I joined the community, I'm a writer, mostly on politics and culture. Well, the inevitable has happened, and an editor I know who's starting a new health section asked for a story from me about ovarian cancer.

I'm wondering if anyone here would be interested to share anything at all that is of utmost importance to them about ovarian cancer for my article. Topics I am especially interested in include these two recent developments in the ovarian world:

--Two doctors recently released a rebuttal to a well-known web-email about using CA 125 as a diagnostic tool. (click this link for info: http://well.blogs.nytimes.com/2008/01/18/doctors-take-on-a-notorious-e-mail /?hp ) The doctors say CA 125 testing before diagnosis causes too much panic among too many people who will ultimately be found negative; but so many women I know believe that it should be a fairly routine part of pre-surgery diagnosis. What's your opinion?
--A new Lancet study demonstrates fairly conclusively what has been long suspected: that oral contraceptives decrease the risk of ovarian cancer (click this link for info: http://www.medicalnewstoday.com/articles/96196.php ). Does this pose any moral quandaries? Should it?

I realize both of these are controversial questions; all the more reason, in my mind, not to shy away from them. You are welcome to comment here, but if you may like to be quoted in an article, please email me: joseph.mailander@gmail.com with your name and I'll do my best over the next two days to have an offline email conversation with you. I live in Los Angeles, and the paper in which the article will appear serves LA's downtown community.

By susie1107
Posted February 7, 2008 at 5:52 pm
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Dear Joseph,

While it seems most research indicates that CA125 is not the most effective diagnostic tool for ovarian cancer (it can be high even if you have benign fibroids or some other minor problems) , it is one of the few we currently have. I was diagnosed with ovarian cancer last year after several months of misses as to what my ailment was. Finally an ultrasound showed a mass on my ovary. Then I was given a CA-125 test with several other blood tests. The levels of my CA-125 were through the roof, but my doctors didn't confirm it was cancer until they removed the tumor and performed a biopsy. So while it may not be the most effective tool in diagnosing cancer, if you have an indication of a tumor and you are going to have surgery I think your doctor is doing a disservice to you for not ordering one. While my OBGYN wasn't positive if I had cancer because my levels were high she made sure a gynecological oncologist was on hand to assist with the surgery.

The use of oral contraceptives may pose a moral quandary for some, I think if you have a genetic predisposition for cancer and this may provide you with some protection it has less of one. But here is another question to pose. While it may lower your risk for ovarian cancer does it increase your risk for heart disease, or other diseases? And does it lower your risk for certain types of ovarian cancer or all. I have a rare neuroendocrine type which usually doesn't present in the ovary.

By Shearaw
Posted February 8, 2008 at 11:30 am
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Joseph, There is an even more recent Lancet publication ( see http://patient.cancerconsultants.com/ovarian_cancer_news.aspx?Document Id=41316 ) which may be of interest to you. It reports on the use of ultrasound in screening, and the dependency on technician expertise. The more highly expert group of techs diagnosed 100% of the ovarian cancers, while the remaining group "routine" diagnosed only 40%. Furthermore, there were fewer surgeries required in the group of women with experts (so fewer false positives?) This seems to me to be a medical resource allocation hot issue waiting to happen. I hope that the diagnostic community runs with it.

Sheara W

By zircons
Posted February 8, 2008 at 11:33 pm
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First, let me say that all men are allowed by their insurances to have a PSA test. That test is as inconclusive as the CA 125. There are many false positives with both of them. How come men are allowed to have the test? Now, I am not typical. I did not have the symptoms for ovarian cancer. Two years before my diagnosis, I had gastrointestinal symptoms for one day and was put on Protonix and the symptoms went away. Six months before the diagnosis, I had a different back pain that was not debilitating. The doctor thought it was nothing after I had an xray. Finally, I read a magazine article that said that women should have a CA 125 done. I asked my new doctor if I could have one and he agreed. It was only 128. He sent me to my Gyn and she hollered at me, but said that I would have to have a transvaginal ultrasound because of the elevated CA 125. Guess what they found? I was referred to a gyn/onc for surgery and chemo.

Secondly, I was on the pill for years and nursed three children. I guess I am an anomaly.

By melf
Posted February 9, 2008 at 8:11 am
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I think its important to remember that the CA125 is a "diagnostic tool". There are a significant amount of false readings both positive and negative but if it saves even one of us why should it be stopped? I was diagnosed with IBS and suffered a full year before my tumor was found. I had a CA125 done and the reading was a 9- certainly nothing too out of ordinary- other tests revealed a 15 cm tumor and surgery revealed stage 1 cancer.

By MoYeah
Posted February 9, 2008 at 4:54 pm
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I think it’s simple… the CA-125 test is just a tool. Some tools are better then others; but, if you don’t use the tool then how do you know if it works or not? Many of the women I know have never even heard of a CA-125 blood test nor, have they been given the chance to have it done. I didn’t. I complained I didn’t feel right to my doctor, told him my vague symptoms, and had my normal pap every year. (I guess he just never felt a lump.) It wasn’t until I blew up like I was nine months pregnant, that he sent me off for a CT scan and behold... stage III Ovarian cancer. As for my CA-125, it was over 16 thousand. When down to 8 thousand after surgery. Maybe if the test had been done earlier or routinely, I wouldn’t be fighting for my life now. Yes, in my opinion I think the medical world should be testing every woman, maybe do a base-line test at 20 or 30.

If someone get a false positive and then has to get an ultrasound, I believe that's better, then stage 3 or 4 ovarian cancer!

I understand many insurance companies won’t even pay for the test and with the low funding Ovarian cancer gets I question if there is any real studies being done on false positives. Just seems like we all have our opinions but no proof. So in the mean time… I tell all my female friends, daughters, and coworkers to go get the test. (Tell them you have a family history!) As of today... not one has come back with a false positive.

By Rose2
Posted July 19, 2008 at 2:43 am
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Joseph, Maybe you can get ovarian cancer some attention. We went to 2 Relay for Life Walks lately and neither one of them had any information about Ovarian cancer. But they did cover Breast cancer and other cancers. One gave out ribbons to wear, according to the cancer you had. They did not even have a ribbon for Ovarian cancer and did not even know what the color is for it. We need to get more information out to the public and to the Drs also.
I went in with many symptoms and was treated for other things. Ended up being dx with stage IIIC ovarian cancer. We must get more information out there. I have been praying that God increases the awareness of this cancer. Thanks

By joseph2
Posted July 19, 2008 at 12:32 pm
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I think I need to draw to the community's attention: this post originally went up in February and the article appeared in March.

This is a link to the article as it appeared in the LA Downtown News March 17.

Even since the article appeared, there have been some developments. The most notable is that the Yale test is now available; I posted on that somewhere earlier.

Thanks so much for your continuing interest! I hope another editor asks me to write another article, maybe for September awareness month. It was good to see in the news this week that Halle Berry has taken on spokesperson duties for Ovarian Cancer awareness.

By socmom
Posted July 19, 2008 at 2:56 pm
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Joseph,

Just was going to reply to your post and then I saw the new post and the article. Great Job! Lots of great info and clearly we can use all exposure for this cancer that we deal with.

Thanks from all of us....
Cathy

By kmarienap
Posted July 19, 2008 at 4:01 pm
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I am 53 yrs. old. I was diagnosed with stage 3c ovca in 2004. The ca125 test does not work for me. My understanding is that some types of tumors do not produce the protein for this test to be of any benefit to them. Mine was one of them. In reference to the other issue, I have no family history of ovca. I did take birth control pills, had 3 children and then had a tubal ligation. ALL of this was to have lowered my chances of getting ovca. Obviousely, not in my case! If I can be of any help for your article, please feel free to e-mail me at: kmarienap@yahoo.com Thank you, Karen

By daisysimon
Posted July 20, 2008 at 11:01 am
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Hi Joseph 2,

Too bad I missed writing regarding your article. I, like your partner am stage 1a grade 3. Best of luck to her. I had 4 out of 6 rounds of chemo after surgery and am considered "cured".. I developed neuropathy and had to discontinue chemo.

My cancer was caught accidently when I went to my doctor for blood in my urine. they thought it was a kidney stone which it was, but they also found a tumor on my ovary after sending me for a ct scan.

I had the surgery to see if the tumor contained cancer (they were pretty sure it did because of my age) and found it contained within the one ovary. Cancer cells were found nowhere else in my abdomen. Because I had clear cell carcinoma my oncologist and gynecologist recommended 6 rounds of chemo. Is that similar to your partner?

I had the ca125 and it was not that high.

How about even a ct scan as a screening? How many other women have you found to have stage 1 ovarian cancer?

Please read my info.

I thank my stars that my cancer was found accidentally. I've had a reprieve.

Thanks for your posts.
Claire
daisysimon

By geocolt
Posted June 2, 2009 at 11:16 pm
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hey,

In march i was diagnosed with stage 1 grade 2 ovarian cancer. Im only 18 years old. I was having alot of digestive problems and i was vomiting for about a month with certain stuff that i ate. the same exact thing happened to me , i went to the doctor just for a phyical and they found blood in my urine. They thought it was because i was getting my period so they blew it off. i still had massive pain in my stomach and my stomach started to blow up. i went to another doctor and they did a sonogram and they found a large tumor 33 cm wide. It had grew that big within a week . They did surgery and because of my age they thought it was just a regular ovarian cyst that enlarged for some reason. When they went in for surgery they realized it was cancerous. They told me maybe i had to do chemo for about 6 months? im still waiting too see.

By mixy
Posted June 3, 2009 at 8:09 am
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Hi Joseph,
I wish they would have done a ca125 at the time I went originally to the doctor. I continued to have scans that showed ovarian cysts. She did not follow up with any other tests,including an exam which might have picked something up.
Ironically I could not continue to be on the pill because I had a stroke at the age of 28. They never knew the definate reason for the stroke because there was no family history, not a smoker, no diet aids, or being overweight. They only knew to take me off the pill. Maybe I wouldn't have stage 4 ovarian cancer if I stayed on the pill or if I would have gone to a better gynecologist that ruled more thing out, had a CA125 test, or being followed up more closely.

Thanks for writing the article.

Welcome to Inspire!

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