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Unread 04-03-2004, 06:25 AM

I would like to take a quick survey. My situation is that 4 yrs ago I had an opherectomy because of a large cyst. Two yrs later I had a complete hyst and had the other ovary removed, because of bad biopsy and pap smears. Late last yr I had gall bladder surgery and they said I had a growth on my ovary. I had follow-up trans/vaginal ultraound and they verified this and said I had a growth on the opposite ovary as well. I read about ovarian remnant syndrome and was convinced that was it. They continue to do CA125 test and mine was 6, three months later 12, three months later 26 and they repeated one at one month it was 29. Can any of you tell me your experiences with CA125 before cancer diagnosis was made. Please it would ease my mind as it has been six months and they continue to monitor this, but if it is cancer everything I hear is early detection is key.

I would like as many posting to my question -- PLEASE!
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Unread 04-03-2004, 02:03 PM

I can share my story, Majik, because you're asking. It's not like yours though.

I had excess bleeding problems for some time and started getting some non-specific complaints (e.g., leg pain, bloating, etc.). My gyn found a fairly sizable growthon my right side. She also felt fibroids on my uterus. I was a mess. I had a transvaginal ultrasound, a uterine biopsy, and a blood test. The CA125 count pre-surgery was up about 265. I had my surgery about 8 days after all the other tests and it turned out that it was indeed, cancer. There was cancer in the ovaries that spread into the fallopian tubes and also cancer in the uterus that spread to the cervix.

So you can see that I only had the one blood test. With those symptoms and with the results of the other tests, no one was waiting to see what was going to happen to my CA125.

My first post-surgical blood test, the CA125 was 29. I had six rounds of chemo (plus radiation therapy). Since then, my CA125 has dropped. My last CA125 test was 6 months after my last chemo treatment and was 6.3 (which, I understand, is as low as the count goes).

My understanding is that anything below 35 is considered normal. Of course, your doctors are following you quite closely which is a good thing.

Are you seeing a gyn oncologist? That's a big suggestion that you'll hear over and over again on this forum. Talk to your doctors and ask all the questions you've got. Write them down before you see your doctor so you won't forget anything when you're actually in their offices.

Keep in mind that the CA125 can be elevated for other reasons, not specifically ovarian-related.

Good luck to you, Majik, and let us know how you're doing. Try not to let the fear overwhelm you. It's a lot to deal with (no matter what is actually going on). We're here to help you through it as we were helped by others who came before us.
Unread 04-03-2004, 02:18 PM

My ca125 continued to escalate in the 3 months before my diagnosis - going from about 60, which is still out of the normal range to 200 over the course of 4 weeks. Does your doctor agree that what they are seeing on ultrasound is an ovarian remnant? Your profile doesn't indicate how old you are, but if that ovarian remnant is still functioning as an ovary - ie cycling - it can cause the ca-125 to bounce around in the normal range.

--it is great that you are being monitored - have you seen a gyn onc?

--is everyone on your medical team sure this is an ovarian remnant and not some other growth - other pelvic problems can also cause the ca-125 to rise

--did you have ca-125's prior to the surgery? do the recent tests indicate a rise or is this just bouncing around the normal range?

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Unread 04-03-2004, 02:19 PM
I'll Second Maureenie

I've never heard of ovaries growing back...but then I was amazed to find one of my wisdom teeth grew back. Interesting! I would continue to have the CA125 monitored. Did you find out if your cysts on the ovarian remnants are solid or fluid filled? Solid is more of an indicator of problems than fluid filled. Can you take your ultrasound and have an appointment with a gyn/onc? THat would be the Dr. to consult if you have concerns. While CA125 is best used as a test after diagnosis to check response to chemo and regrowth, CA125, the transvaginal ultrasound and a pelvic/rectal exam together can tell a story. Also, while I don't mean to scare you, there is a type of cancer so similar to ovarian that it's treated the same--primary peritoneal cancer. I'd be safe and to to a gyn/onc.
Unread 04-03-2004, 04:09 PM

Thank you for your responses. I have had not had a ca125 test prior to the surgery. I have not seen a gynocologist/oncologist because the tests have been in the normal range. I understand that from the test I took that the ca125 level is normal in the under 35 range. They are not sure what is seen on the trans-vag ultrasound growths are about 3cm and 2 cm respectively. They notice very little growth from month to month and only a small blood supply. They do the test at monthly intervals so I think they feel that the estrogen fluctuation would be the same. You ladies ask good questions. I guess, the question I had was to see if anyone out there was willing to share their numbers prior to diagnosis. I won't be more upset I just want more information. My family seems to be pushing for answers and they said that because of my previous surgeries (gall bladder, ovary and complete hist.) that a surgery would involve my ureter so they didn't just wish to rush in and a biopsy (the only conclusive way to judge). I just wanted ammo to give my doc ... such as I had a great deal of response showing that people with low ca125 numbers still had reason or cause for concern so I could maybe push for another type of scan - such as PET or CT as I think from reading the info on the web for ca125 that they can be false negative or positive, but a trend can be established.

Thank you for your help.

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