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sanell · 07-31-2008, 08:17 AM

My 32 yr old dtr in law was diagnosed with a complex ovarian cyst with a septum 7cm. She had a Ca125 drawn. If it is elevated she will be referred to an oncologist. If it is not, she will have it removed next week. She and my son are very worried. Has anyone had experience with this/
Thanks for your replies. ellen

estria · 07-31-2008, 09:16 AM

Hello Ellen,

Most cysts, even complex ones, are benign so try to relax until you have more information. The reason that they usually take out complex cysts is because if cancer is present it usually looks like a complex cyst or a solid tumour. HOWEVER, the large percentage of complex cysts are completely benign.

Keep in mind that even if your daughter in law's CA-125 is elevated this DOES NOT necessarily mean that she has cancer. This test is notoriously unreliable and can sometimes be elevated due to benign reasons such as being on your period or endometriosis. The way the cyst looks on the ultrasound is often the best indicator prior to surgery and radiologists are quite good at seeing what is cancer and what isn't. Needless to say, the cyst will have to come out in order to be sure.

My sister in law was terrified when they discovered she had a 12 cm septated complex cyst that took up BOTH of her ovaries. Her CA-125 was elevated and she went to see a gynecological oncologist who performed the surgery (under these circumstances you really need an oncologist in case it DOES end up being cancer and more aggressive surgery is necessary). After all of this anxiety it turned out to be a perfectly benign growth although she did loose one ovary due to the cyst.

My cousin has had cysts all of her life and when she was only 20 years of age one of the cysts twisted her ovary and cut off the blood supply so that she ended up loosing an ovary. Despite this, she had two beautiful children. She recently began to develop complex cysts on her other ovary and decided to have the other ovary removed in order to prevent having to go in and out of surgery (she had already had other cysts removed from this ovary). The cysts were benign and now she is in surgical menopause at the age of 32.

I myself have an 8 cm fluid filled cyst on my left ovary and was worried sick that it may be cancer. They found it last September and I have kept an eye on it ever since. I did have the CA-125 done and mine came out at 7 (anything under 35 is considered normal). If my cyst begins to grow or change in any way, I will have to have a laparoscopy to remove it and possibly my left ovary as well. I am not happy at the prospect but I have accepted the situation ( more or less

).

Ovarian cysts are EXTREMELY common occurences, even complex ones so don't worry unless you have something to worry about (and you probably don't).

All the best and come back and tell us how your daughter in law is doing.

sanell · 07-31-2008, 10:15 AM

Dear Estria - Thank you so much for your informative reply. I am a 23 yr- breast cancer survivor, and I know about the waiting for concrete information. I will definitely share your info with my son and dtr in law - it will give them some positive thoughts as they wait it out. I am very grateful that you took the time to write.
ellen

sanell · 08-01-2008, 08:25 AM

An update - the Ca125 came back 25, which is encouraging even though I know there are false positives and negatives. My dtr in law is scheduled for surgery Aug 7 for cyst removal and possible ovary removal as well. Hoping for good path results there, too.

estria · 08-01-2008, 10:02 AM

Hello Sanell,

I am glad that the CA-125 results were encouraging. Usually if this result is sky high (in the hundreds) it raises a red flag and this is obviously not your case.

I believe that they usually perform a frozen biopsy of the cyst during surgery to ensure that nothing more needs to be done other than to take it out. The decision as to whether or not the ovary remains depends, of course, upon the biopsy and upon whether the cyst has compromised the ovary. There is also the concern that another cyst may return in the future (if it happened once ..) so depending upon fertility issues etc.. things will have to be discussed with her doctor. After the concern for cancer has been ruled out, this last issue is what annoys me the most. I am a believer in keeping as many of my body parts as possible but the idea of having to return for a second operation if the cyst returns really ticks me off so if I need to have surgery I will have to face this issue.

I hope your daughter in law comes through like a trooper. Take care and all the best to her for a speedy recovery.

jordieace33 · 08-06-2008, 06:54 PM

This has been a CRAZY month for me. I went to my gen care phys for abdominal pain. She was having me checked for Pancreatitis..etc blood work and scans on my abdomen and in my rib area. Randomly they found a large cyst on my left ovary. Sent me to my Gyno. They talked of removing but wanted to wait till after I ovulated to see what it did. I went back for another scan and they said good news/bad news. You dont have a cyst but you have a mass in your bladder!

The urologist I went to basically told me I had cancer. He did a scope through my urethra and said no bladder cancer, but something is pushing in on your bladder. He sent me back to the Gyno.

My Gyno told me that because of the large complex cyst and mass on my ovary, they thought the ovary was the bladder! ( yes they did refind the cyst!) The did the laproscopy surgery and removed the cyst and the mass and now here I sit and wait! I am nervous, but they said the mass was free floating. I am just guessing that is a good sign?

But all the woman in my family have had cancer. Does this sound familiar to anyone? Sorry I had to go on and on....

estria · 08-07-2008, 06:16 AM

Hello Jordie,

Sorry to hear about all of these problems you are having. Perhaps posting this story on its own thread might get you more responses.

Yes I believe that if a mass is moveable it is a better sign than if it is not. Also, I imagine that they got the entire thing out and that they did not see any others in your abdomen. This is also a great sign because it means that the mass (cyst?) was self contained. Keep in mind that the majority of these growths are benign so try not to worry unless you really have something to worry about (boy is that ever easy to say and difficult to do, right ?). I am learning that due to the ovaries' reproductive capabilities, there are over 100 different types of ovarian cysts that are possible. This is what makes this ovarian cyst issue so complicated.

I know very well how the watchful waiting game can really eat up your quality of life. Try to keep yourself occupied with something you really love to do in the meantime. It will help to take your mind off of the waiting.

All the best and let us know how everything works out for you.

Estria

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