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[Jcrow1001]

Hello All:

I've just gotten some freaky news.  I had surgery on 3/26 to have a mucinous cystadenoma removed along with my right ovary and tube.  The frozen section was benign and I've spent the last month believing that my cyst was benign.

I met with my doctor this morning and found out that my pathology went to Johns Hopkins for consultation.  I also received my final pathology report which states:

Right ovary:  Fragments of membranous ovarian tissue with cystic changes showing mucinous glandular epithelium with rare atypical areas and mitotic activity, suggestive but not entirely diagnostic of borderline low-malignant potential mucinous cyst.  Follow-up is recommended.  Also seen are corpora albicans, multiple calcifications, and focal multinucleated giant cells to cholesterol clefts.  Reactive ovarian serosa without evidence of excrescenses.

My doctor said that the treatment for this is to remove the cyst along with the ovary and tube which we did.  He also said that he took pelvic washings and they were all negative.  He wants me to have pelvic exams every 6 months and a trans-vaginal ultrasound every year forever.  I'm wondering if this is standard treatment or if I should get a second opinion.  I'm confident that the pathology is correct as it was reviewed by a Hopkins pathologist who specializes in mucinous ovarian tumors.  However, I'm a little freaked out because I'm really not sure if this is cancer or not cancer?

Quite frankly, I'm scared.  I posted over on the other "Ovarian Cysts" forum and thought I would post here too because I value your opinions.

Any insight any of you may have is really appreciated.

Thanks,
Janet

[gma718]

It would be in your best interest to get a 2nd opinion...maybe even a 3rd! I feel that for your own piece of mind that it would be the right thing to do..definitely see a gyn/oncologist they specialize in these areas and you will know what course of action to take..remember always follow your instinct.  Good Luck...Gia ")

[Jcrow1001]

Thanks so much for your help.  I do live very close to Hopkins and have submitted a request for a second opinion appointment there since the pathology was sent there.

I've just been blind sided by this.  When I woke up after surgery I was told it was benign and everything was fine.  From the path report it doesn't sound like anyone knows whether its benign or borderline.  I'm just not sure how to interpret "suggestive but not entirely diagnostic."

[Tybear]

I would get a second opinion too...you can never be too careful with this disease! I actually sent my pathology slides to Johns Hopkins to be reviewed as well (I'm from Canada) and they did some tests that my doc's here wouldn't do. Are you able to maybe meet with a gyn/onc from there? I would think, since they have most of your info anyways, that would be the route to go. Borderline tumors are a very grey area when it comes to cancer and the treatment and management of them can vary from doctor to doctor.
Best of luck!
Becky

[dian07]

I would definately get a second opinion and that would be with a gyn/oncologist.  In my book it is always better to be safe than sorry with this disease.  I was diagnosed in 2005 with mucinous adenocarcinoma and was staged IC.......I had 6 rounds of carbo/taxol and am now three years out from diagnosis......actually 3 years to the day.....please do get a second opinion with a gyn/oncologist.
Peace.
dian