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Complex Ovarian Cyst - how to find a surgeon with cystectomy skills?

My 35 year old sister, for the last 5 months, has been having terrible abdominal gas/cramps that start a couple of days before her period and finish on the day of the period. She has no other symptoms. She doesn't have kids.
She was given an ultra sound and CT scan and both detected a complex mass - (CT detected 10.7cm x 7.4 cm and Ultrasound detected slightly bigger at 12.3cm x 8.3cm x 6.5 cm with central enhancing solid components seen).
She also had a high CA-125 of 512 which is upsetting. We are trying to not think about cancer but its very hard.
We have no history of cancer in the family. She is seeing a Gyn/Onc on Wednesday.
Can they tell during the operation if it may be cancer?
If so, how do you go about finding a surgeon with good cystectomy skills so that she doesn't lose any of her organs and only the cyst is removed?
2 Responses
Avatar universal
I'm sorry your sister is dealing with this.

The CA125 is notorious for elevated results when there is no cancer.  A friend and I had the exact same type of benign complex cyst and her CA125 was over 1000 and mine was normal at 30-something.

A frozen section biopsy of the cyst tissue can be done during surgery and there should be no need to remove the cyst if the result is negative / benign.   You are right to be concerned because, unfortunately, far too many women lose an ovary or ovaries for benign ovarian cysts. Removal of even one ovary has been shown to cause permanent harm due to the loss of ovarian hormones which are essential our whole lives for every aspect of good health.

I'm not sure how to go about finding a surgeon with good cystectomy skills. Any surgeon who balks at the mention or insistence of cystectomy for a benign cyst should be crossed off the list. But aside from that, I don't have any tips. The non-profit HERS Foundation may have some suggestions.

Regardless of your sister's surgeon selection, she will want to protect her organs by ensuring the surgical consent form is explicit about what may and may not be removed and under what circumstances. Most gynecologic consent forms give far too much leeway to the surgeon to remove whatever he or she desires. That is part of the reason female organ removal surgeries (hysterectomy, oophorectomy, salpingectomy) are far more prevalent than they should be. About 90% of female organ removals are unwarranted. Yet they continue because they are lucrative and insurance companies don't care if healthy organs are removed. :(

Please keep us posted. I wish the best for your sister.
Thank you so much for responding. It's so admirable what you are doing. Am really grateful for the information and I will definitely post an update after this Wednesday following the appointment with the gyno/oncologist.
You mentioned: "... there should be no need to remove the cyst if the result is negative / benign."
Did you mean "there should be no need to remove the ovary if the result (of the cyst tissue biopsy) is benign" ? Just thought I'd double check.
Thank you for recommending the HERS foundation. I'll contact them for guidance.
Also, is there any situation in which the ovary should be removed? Is the Fallopian tube removed along with it? Thank you so much. I'm now contacted and just waiting to hear back from HERS.
Yes I meant to say - no need to remove the ovary if the cyst is benign! Although some cysts can get large and take over the ovary, surgeons with good cystectomy skills can usually save the ovary or enough of it for hormone production and possibly fertility. This is a helpful website - http://ovaryresearch.com/ovarian_cysts.htm. So is "Ovaries for Life" - overy.org.
Thank you so much. I understand a large complex mass on ovary, and high CA-125 of 500 is not necessarily an indication of ovarian cancer. Do you know if the presence of mild-moderate ascites can increase the chances that there is cancer? She is worried about that right now. (By the way, I mentioned above that she's my sister and I have had an operation 7 years ago for endometriosis)
Avatar universal
I've read that ascites can be concerning but they aren't necessarily indicative of cancer.  Best of luck with tomorrow's appointment.
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