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Has anyone had a recurrence without their CA125 going up? I had OVCA IIIC in 2001 recurrance in 2008 and finsihed chemo in December and now have a terrible pain in my left side and back. I have also started breaking out in terrible whelps but they only last 3-5 hours. Just had a CA125 and it was just 11.
Yes! My wife had an twenty-four year recurrence without the CA125 going up.
She had been seen by a community oncology outfit at our local hospital. She underwent a laparotomy (a surgical procedure which involves opening the abdominal cavity for examination) as a followup during the early '90s, and this did not reveal any evidence of recurrent carcinoma. This is supposed to be the most certain way of diagnosing ovarian cancer and assessing the extent of cancer spread (metastasis). However negative second-look patients have a 50% chance of disease recurrence anyway.
For the most part, this group of oncologists relied almost entirely on the CA125 tumor marker. The rate of "false positives" makes it inadequate for use "by itself" for screening of high-risk patients. It should be supplemented with transvaginal ultrasonography and a rectovaginal pelvic exam all done "at the same time" (I bitterly complained about this but it fell on deaf ears by this medical oncology group).
It was our family doctor that found her first metastatic recurrence to her diaphragm (not the oncologist at our regional cancer center). She was having dry coughing spells at first but then she began having a mucus discharge, which eventually was bloody. A chest xray and Cat scan revealed a lesion inside her diaphragm.
The recurrent ovarian cancer was surgically excised (when Fox Chase "had" good surgeons). It turned out to be a metastatic transdiaphragmatic tumor from the original ovarian cancer, with attachment to the lung, liver and other midline structures of the chest. Parts of those structures were surgically resected.
Hi. I noticed two things from your posting. First, you have a beautiful family, and second, you posted at 11:55 at night. Oh, those middle of the night dreadful thoughts that keep you awake. It is all very unsettling.
There are some people who have recurrence without a rise in CA125, but I think we are few and far between. It has something to do with tumors not secreting enzymes or proteins or whatever it is that is picked up by a CA125.
Can you make an appt to see your onc and schedule a scan for the pain in your side? From experience I know that is the only thing that will put your mind at ease.
I feel for you because I know what it's like, as we all do on this site, to have this hanging over our heads forever. Probably the only thing to ease your mind would be a scan. Please look into having that done, and then let us know the results.
Peace of mind is a wonderful thing that is never appreciated until it is lost. I think we have all lost our peace of mind. At least that's what I miss the most - they can have my ovaries :-)
Like you, I am a long term survivor (since 1999 with recurrence in 2004). Just curious - where was your recurrence? Now go get that scan! -- Patty
-Patty
I'm assuming your doctor knows how you feel and will be sending you for a scan very soon. That should answer any questions. Good luck!
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