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Old 06-23-2011, 02:27 PM   #1
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11 cm complex ovarian cyst high ca125 scared

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.

 
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Old 07-04-2011, 04:46 AM   #2
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Re: 11 cm complex ovarian cyst high ca125 scared

I know what you are going through. Last week He found a 7cm irregular cyst on my right overy. My CA level is ellevated as well. He wants to do a Laparotomy.
This measns he cuts above my navel and I will be out of action for 6 weeks.
I will know tommorrow what where and when , But i think I should go for a second opinion.

I am 33 and i know my time is running out. I know how scared you are.

Have you been back to your Gyn?

 
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Old 07-04-2011, 02:05 PM   #3
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Re: 11 cm complex ovarian cyst high ca125 scared

I met with a gyn/oncologist to get everything looked at and schedule my surgery for the end of the month. He isn't sure he can do it laproscopically (is that even the word?) because of its size. But I'm surprised you're going to be out of commission for so long. I hope you're not really down for six weeks. Good luck!

 
Old 07-14-2011, 10:12 AM   #4
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Re: 11 cm complex ovarian cyst high ca125 scared

I'm just healing up from a laparotomy to remove what they initially thought was a complex ovarian cyst. My CA-125 turned up at 169, and they got extremely worried about cancer, to the point of trying to refer me to an oncological surgeon instead, as a precaution. I also had a lot of the same symptoms as you (Gas, bloating, fatigue, painful periods, shortness of breath, etc).

When they finally opened me up they found a benign cyst (yay!), which weirdly enough wasn't an ovarian cyst at all. Mine turned out to be retroperitoneal (it was growing in the space behind my uterus and in front of my bowel), but it had grown so large (22x32 cm...I looked pregnant) that it had managed to attach itself to my fallopian tube and ovary. They had to take out one fallopian tube, but everything else is still in there and working fine.

A big cyst (which yours is) can cause a lot of those symptoms all by itself. And there is a lot of other things that can cause an elevated CA-125, including simply being close to/on your period. Ask your doctors why they aren't worried about cancer. In my case, I had no ascites (fluid in the abdomenal cavity), which is a sign of cancer.

As to the laparotomy, you most likely will have to have one. Even if you don't have cancer complex cysts can contain cancerous cells in their fluid, so they don't want to break open the cyst and spill that. They generally need to remove them all in one piece. If they have any concern about cancer, even a small on, they will also want to open you enough that they can take a look inside and make sure they don't see any sign of spread, something they can't do with a laprascopic surgery. While it really does take about 6 weeks to heal, minimum (my surgeon gave me 8 weeks off work), its not that you'll be in horrible pain and bedridden that whole time. The first week or two you'll likely be spending most of your time flat on your back, but by week three I was at the cabin, laying on the beach. It just takes time for your energy to come back, and for your abdomenal strength to fully come back. I'm at 5 weeks now, and I have almost no pain, just some stiffness and a bit of soreness if I walk too much, but I'm still tired a lot. The scar also isn't nearly as bad as I was worried it would be. It'll look pretty gory the first couple weeks, but mine's already fading nicely.

I'll keep my fingers crossed for you, best of luck with everything!

 
Old 07-14-2011, 10:30 AM   #5
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Re: 11 cm complex ovarian cyst high ca125 scared

If you don't mind my asking, how old are you? I think my age is a big part of why they're not overly concerned - I'm 28, which is quite young for aggressive ovarian cancer. Of course it's not unheard of, but it tilts the odds in my favor.

My regular gyn also said he's not concerned because it's completely fluid-filled, and most (though not all) cancerous tumors contain solid components. My cyst is thick-walled, which can indicate trouble, but there are no septations, which is a good sign, and he said that if I had cancer, my ca125 would probably be in the thousands (I know that this is far from a hard and fast rule but I guess in his experience that's usually what he's seen). Also, he's not SURE, but this is possibly a cyst I've had for several years. I stopped monitoring it after a year or so because life got in the way and it wasn't causing symptoms, but it was slowly getting larger at every ultrasound. If it IS that same cyst, it's probably not cancer, because I'd almost certainly be dead by now.

I've had three doctors give opinions (my gyn, my regular doctor and a gyn/onc my regular doc recommended) and all three have said they feel it's not cancer, but the only way to be sure is to take it out. I'm guessing it will indeed have to be taken out the old-fashioned way, because the radiologist suggested it could be a mucinous tumor, which can be borderline malignant. I would think the only way they could do it with the tiny incision is if they get in there and it turns out to be a simple cyst after all and they can drain it, but I'm not too optimistic about that. Heck, right now I'm just trying to stay optimistic about it not being cancer. Some days are okay, some days are really hard. Nine days til my surgery...I'm both dreading it and can't wait for it to get here.

 
Old 07-14-2011, 10:33 AM   #6
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Re: 11 cm complex ovarian cyst high ca125 scared

I never thought to ask about ascites; would they be noticeable on a pelvic CT?

 
Old 07-14-2011, 11:06 AM   #7
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Re: 11 cm complex ovarian cyst high ca125 scared

Ascites generally would be visable on an ultrasound, so I would assume also on a CT, though I really don't know, I didn't have a CT. Apparently its almost always present with cancer, though.

I'm 29, turning 30 in less than a week, same age range as you.

I know the feeling...some days I was sure I would be just fine, some days that terror just crept up on me. I can honestly say waking up from surgery and being told everything is just fine was one of the best feelings I've ever had.

If I were you'd I'd try to find out exactly what type of incision they're planning on making and all that before the actual surgery...that's a lot to spring on you the day of the surgery, when you're already likely pretty worked up, and besides, its easier if you know ahead of time what to expect when you wake up, so you can get yourself prepared for it.

 
Old 07-14-2011, 11:56 AM   #8
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Re: 11 cm complex ovarian cyst high ca125 scared

They're playing it by ear, so I don't think they'll know until they look inside and see what's up. I hope they won't have to cut me open, but this thing is pretty huge and I would rather the larger incision than dealing with the possibility of the darned thing popping while they're taking it out, especially if it's cancerous.

I had a transvaginal ultrasound at my gyn's office when he diagnosed the cyst/tumor/whatever the heck it is. Is it noticeable on that kind of ultrasound? If so then I don't think I have any, since he didn't mention it, and as I said he seems fairly sure that I don't have cancer.

 
Old 08-11-2011, 12:56 PM   #9
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Re: 11 cm complex ovarian cyst high ca125 scared

Thanks everyone for your help - turns out I have endometriosis, which isn't great news but SO much better than what i was fearing!

 
Old 09-04-2011, 06:50 AM   #10
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Re: 11 cm complex ovarian cyst high ca125 scared

Hi,

Just wondering what ever happened with your situation?? I am experiencing the same problems.

 
Old 09-13-2011, 07:48 PM   #11
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Re: 11 cm complex ovarian cyst high ca125 scared

I am also experiencing the same situation. I just had a cyst removed and the preliminary results came back as precancerous/borderline cancer cells. I wont know anything futhur until tomorrow. Please let me know what happened with you.

Thanks and Good luck to you,

Rachel

 
Old 09-26-2011, 04:10 PM   #12
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Re: 11 cm complex ovarian cyst high ca125 scared

Quote:
Originally Posted by raechelann View Post
I am also experiencing the same situation. I just had a cyst removed and the preliminary results came back as precancerous/borderline cancer cells. I wont know anything futhur until tomorrow. Please let me know what happened with you.

Thanks and Good luck to you,

Rachel
Hi Rachel,

I had surgery on 9-13-2011 amd I'm healing at home. My 9cm complex cyst came back benign. Please tell me what all you found out about your cyst? I will pray for you... Good luck

 
Old 09-26-2011, 04:49 PM   #13
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Re: 11 cm complex ovarian cyst high ca125 scared

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.

 
Old 09-27-2011, 10:08 AM   #14
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Re: 11 cm complex ovarian cyst high ca125 scared

Whwn is your next surgery? I will be praying for you and sending good "vibes"
your way. What kind of cyst did you have and how large?

I know you are scared, but stay positve that its at a stage 2. The same thing happened to the nurse who was taking care of me, and she seems fine now after 2 and half years.

I'll be thinking of you...

 
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