Complex cyst

Hi there..

 You're not alone.  This thought will help you.   The reason I am here is because I am going through the exact fears.  

Okay - you took the ca125.  It usually comes back pretty fast.  They say that anything under 35 is normal.  Mine was 19 or 20.  I can't remember now with all o the stress.  

I, like you, was diagnosed with a complex ovarian cyst - there is a nodule in that cyst, so they can't rule out cancer.  Many weeks and hours have gone by with these terrible thoughts in my head.

I discovered mine because I could feel something - like you - no pain.. just something...

PLEASE keep posting.  We can help each other by sharing.

My surgery is next week....ovary is gone - cyst took it over.. and I lost my other one 20 years ago....

Try and take this one thing at a time.  I find that I feel like I have been playing a waiting game since June - test after test - and even now, when I'm stuck in traffic, I've changed.  I am trying to LIVE in the moment and not let stress kill me... Of course, I have no appetite - but I still get weak from hunger... The stress is giving me stomach problems.  I dropped about 5 pounds this week I swear.

You are not alone!

Cysts are the issue. CA 125 is only one indicator to determine what's going on. Endometriosis, cysts, hormone imbalance can all cause elevated levels. Only a very low% end up being cancer. Also, usually by the time there are symptoms it is quite large which yours are not. Many of the women in this forum are sent home with unresolved pain end up with torsioned ovary (s) from cysts, Or a cyst rupture either causing severe pain.

Push for an MRI or CT to get a better idea of what's going on. Best to handle while small. My understanding complex cysts do not disappear on their own. They can never fully diagnose without surgery but addition tests give them much better info to develop a solid treatment plan. Sometimes Drs. need a push to get out of wait and see mode. You have children and can't put your life on hold suffering with ongoing pain. You need resolution for your health and your children.

Hope this helps. Best wishes for speedy resolution.

my experience was that CT scans does not show much additional info if the cysts is not large, <5cm. I spent US$500 or so on a CT scan that basically came to the same conclusion that the cyst is complex. the radiologist would not be able to tell if the cyst is cancerous. 

I was diagnosed with a 9cm ovarian cyst based on transvaginal u/s. The subsequent CT scan didn't provide any more (or much more) information and I feel it was a waste of insurance $$ (don't recall having had a co-pay for that). But it also subjected me to unnecessary radiation. And even more perplexing is that my gyn scheduled surgery before I had the CT scan. I wish I'd done things very differently since ovarian cancer is so rare. My doctor inappropriately instilled fear of cancer. I wish I hadn't let that cloud my judgment because it put me in the position of being over-treated and permanently harmed.

Bottom line, my organs (uterus, ovaries, tubes) were unnecessarily removed for a benign complex cyst when all that should have been removed was the cyst itself (cystectomy).

Some ovarian cysts that appear to be complex end up resolving on their own but I don't know how often that happens. Since yours isn't too large, monitoring it via periodic ultrasounds would seem reasonable. If it continues growing or doesn't resolve within a few months then surgery is likely necessary. You don't want to let the cyst get too large but at the same time you don't want to have surgery unnecessarily since all surgeries have risks including adhesions (scar tissue) that can cause problems down the road (such as bowel obstruction).

If you need surgery, it would be best to have just the cyst removed. We need all our female organs our whole lives. The ovaries produce health promoting hormones. Their removal (or dysfunction that can result from removal of one ovary or removal of the uterus or tubes) is shown to affect pretty much every aspect of health - heart, bones, brain (cognition, memory, mood, Parkinsonism), eyes, skin (collagen, elastin, subcutanous fat), muscle, metabolism, sleep, sexual function.

The CA125 test isn't useful at diagnosing ovarian cancer. I'm not sure why they even bother checking it. I know of women who had very elevated CA125 levels from benign ovarian cysts.

Keep us updated.