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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

I have a pair of ovarian cysts; the one on the left is just under 2 cm, the one on the right is a whopping 10.8 cm. I've had cysts before - my gyn said the giant one could be the one we were watching and waiting on a couple years ago (I had no discomfort, stuff kept coming up and it basically got forgotten about), and once in the ER getting a contrast CT for another issue a "ruptured hemorrhagic cyst" was noted. (I'd had terrible pain with my period that month - I now figure that's what that was, since my periods generally aren't bad.)

My gyn sent me for a CT the day I got the ultrasound (with and without injected contrast) but assured me that he was 99% sure it wasn't cancerous. The scan showed both the giant cyst and the then-undiscovered little guy on the other side. It's a thick-walled "complex cyst" full of something that could be blood or "proteinacious fluid" with no septations. My gyn says it's smooth and looks totally fluid-filled (I thought complex cysts were solid or semisolid but someone told me that it can also mean filled with an unusual fluid). The report suggests endometriomas or something I forget the name of that apparently means "big mucus-filled cyst." (Lovely.) Bowel and uterus appeared "grossly normal" and the lymph nodes weren't swollen.

Besides the thick-walled and complex parts that I know can be danger signs, my ca125 is 249. I nearly passed out when I read that; he'd told me it was elevated, but I wasn't expecting a number that high. He did say it wasn't unexpected with a cyst and if it was cancer it would have been over a thousand.

I saw my regular doctor the other day and he looked at everything and said the one thing he felt very strongly that it WAS NOT is cancer, he put himself as being 95%-98% sure he knew what was going on (I don't know if the doubt comes from possibility of it being cancer, his not being a gynecologist, or both). I asked him about the ca125 and he said that just means it's definitely an ovarian issue, but doesn't mean it's cancer.

I've spoken to a couple of people who work alongside gyns or in imaging online and they've all said that it doesn't sound very likely that it's cancer, though obviously they've never seen my test results. One of them even said they'd seen a ca125 level of 900 in a woman who didn't have cancer. Another person suggested that if I had two cancerous growths, including one gigantic one, my number would have been much higher, though I'm not sure if that's based in anything but an educated guess.

My main concern, though, is that along with the ca125, I have all the symptoms of ovarian cancer. Gas, bloating, stomach/side/back pain, diarrhea, urinary symptoms, protein in urine, slightly elevated temperature, etc. I've also had really weird periods - about a year ago, I started having "gaps" in my period where they would stop for a day, then start up again. Weird but I didn't pay much attention to it. But now my periods are very light, maybe five days instead of the usual 7-8, with the gap still there and only with heavy bleeding on the first two or three days. I've also noticed some dark brown discharge at the ends of my last two periods.

I'm terrified. I know that at 28 I'm not in a high risk age group and as far as I know I have no family history of any cancers (well, my dad had throat and lung cancer, but he also smoked two packs a day for forty years; I'm going to guess that had more to do with his cancer than genetics!), so my odds are good, and that my doctors don't seem concerned; my gyn told me I could wait a month or two to sort out my insurance problems before scheduling the surgery to remove it. (I'm just going ahead with it anyway; seems like nothing good can come of waiting; if nothing else, while I'm not in pain, I'm pretty uncomfortable.)

I have an appointment with a gyn oncologist next week to meet with him and discuss surgery. (I do sort of wonder why they sent me to an oncologist if they so strongly feel that I don't have cancer, but I didn't think to ask.)

Has anyone been in a similar situation? I hate being in this limbo where I'm scared and have to WAIT and KEEP WAITING. Luckily I have supportive friends, a wonderful girlfriend and a mother who keeps telling me to stop worrying already because it's fine. But I just can't seem to keep myself from being in a constant state of worry.
The Cyst is borderline cancer. They want to remove my right ovary, tube, scrape some lymph nodes, remove appendix, and stage them to get a better idea. I am currently at a stage 2 because the found implants in my pelvis region. They will be looking in to the abdomenal cavity to look for any more cells.

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