afraid of complex cyst

[Mjo12]

Hi all!  I first wanted to say thank you for all the informational post and it is so nice to see people actually respond.  I don't know if I really have a question just wanted to post my story.  Here it goes...

Last April I had an open myomectomy for massive fibroids.  Then I was told my tubes and ovaries look great, in 6 months start trying to get pregnant.  A gyn onc did my surgery a very highly recommended MD with another gyn onc to assist.  December I had a miscarriage and found out then there were cyst on each ovary.  One simple and one complex and very tiny fibroids present ( knew there were some fibroids left behind).  Complex cyst 3.9cm and simple cyst 7cm.  I was told to follow up in 3-4 months to do a sonohystergram.  I went back to do this in April.  Simple cyst is still there but now 3cm and complex cyst still present but no change in size.  I asked if I could try and get pregnancy with these cyst my OB said it was fine she was not worried about but she wanted to evaluate again in another 3-4 months to make sure they were still moving in the right direction.  She did say complex sometimes do not go away on there own.  She wanted to do another procedure to remove the fibroids in my cavity, i wasn't comfortable with her doing this I'd rather a gyn onc.  After speaking with her partner who had read both ultrasounds he told me he was worried about the complex cyst because it looked like it had possible papillary projects.  WHAT?!  

My Obgyn had never mention anything about possible papillary projections!  And of course everything on the internet says cancer!  I will be 35yrs old next month no children, married.  My sister passed away from a rare type of bladder cancer 5 yrs and I am on edge.  I have no family history of reproductive cancers.

I had already had an appt with the RE doctor scheduled.  I wanted a second opinion about if I should get pregnant with the cyst and if I truly needed another procedure for the fibroids. He did his own sonohystergram and transvaginal ultrasound and stated the cyst does "look a little funky" and it could be a endmetrioma (sp?)  He said if it is cancer he would send me to another gyn onc that he fully trust.  They would have to remove the cyst and ovary.  If it's not cancer then he would only remove the cyst.  By the time I made it to him the simple cyst had finally gone (5 1/2 months later).  They put me on birth control for 2 months and my follow up is next week, by the time my appt comes around I would have taken 1 month of birth control.  I have mild left sided pelvic discomfort, but nothing else bothers me not even sex.  I feel like the pelvic discomfort increased slightly after the start of birth control though.  

The RE doc told me he doesn't really think it is cancer but he does not want to miss anything.  He also said he finds it hard to believe that 2 gyn onc did my surgery just last April and would have missed any findings.

I don't know if I am so afraid because of the papillary projections or because it has been five yrs I have out lived my sister and now to hear the big C word for myself.  I know I should try and calm down because I don't have a diagnoses but I am terrified!

Thanks for reading!

I posted this in the ovarian cancer forum as well.

[old_before_my_time]

That is great news! Hope it is gone the next time!

[Mjo12]

Thank you so very much for sharing your story.  I wanted to post an update.  I went back for an ultrasound to reevaluate the cyst and it has SHRUNK with the birth control!  I go back in another 4 wks and the MD is hoping it will be gone so we don't have to bother with my ovary.


Thank You !

[old_before_my_time]

Welcome to the community. I am sorry you have been through so much and are now dealing ovarian cysts. Ovarian cysts can have papillary projections and not be cancerous. And it can be difficult to tell complex cysts from endometriomas on scans. But almost all ovarian cysts are benign. If you do not have a family history of / predisposition for ovarian cancer then your lifetime risk is less than 2%.

You were told correctly - If the cyst is found upon surgery to NOT be cancerous (per frozen section), then there would be no need to remove your ovary. Only the cyst would need to be removed (cystectomy). Unfortunately, far too many women lose ovary(ies) unnecessarily just because they have a cyst.

I was grossly overtreated by a gynecologist I had trusted for 20 years. He removed both my ovaries and my uterus for a 9.5cm complex cyst that was benign (per frozen section). I was 49 but the LIFELONG functions of my ovaries and uterus became apparent rather quickly post-op and the negative effects continue piling up. I am 9 years post-op and hope I can educate other women about the gross overuse of female organ removal and the ensuing health problems and greatly reduced quality of life.

Best of luck to you and please keep us posted.