Anyone with complex ovarian mass? Update w/ 2nd opinion

After 1st doc recommened TAH/BSO w/o even a biopsy on my ovarian mass, I have rescheduled at a reknown teaching hospital in L.A. to see a gynecologic oncologist on Tues. 3/13. Does anyone have a similar experience they could share? I'm looking for good questions to ask. I'll be having my fourth transvag ultrasound first and then immediately seeing the specialist. I'm 49 and pre-menopausal.

Hi there! I had recurring ovarian cysts that my GYN surgeon followed for forever (it seemed) via transvag ultrasounds. He told me that they can look for certain characteristics in the "mass" i.e., whether they appear to be complex, or simple, fluid filled or not, symmetrical in shape or not, but they can't absolutely tell what the pathology is on them until they take them out.

I had a LAVH+BSO mainly due to fibroids pressing on my bladder, but since I had been having the cysts, we decided to do the BSO too. I was 49 and perimenopausal as well.

I don't know if biopsy is an option? This possibility wasn't discussed with me.

Thanks for your reply. I'm assuming you are OK now and there was no malignancy (do they routinely check for that in what is removed?) So how are you faring now? What was the impact on your mood, sleep patterns, sex drive, etc.? Looks like we are somewhat similar in life stage. I appreciate your time.

Yes, my surgery went well, and all the pathology was normal. My understanding is that even if they don't suspect any cancer (as in my case) they still send all the samples off for pathology, just to be sure.

I'm not taking any HRT, and I have had the hot flashes, and the night sweats. My sleeping pattern was really disturbed for about the first 6 months post-op, I could go to sleep ok, but I would wake up every 1.5 to 2 hours through the night. Now, I'm sleeping much better. I don't know what changed! I'm not taking any over the counter menopause products either. I suppose it just takes time to adapt to the new situation.

I'm feeling good, I don't have to get up in the night to pee, and the discomfort from the fibroids pressing on my bladder especially is gone. Yea!

I do have more emotional "outbursts." I cry more often, and seem to get stressed out more by small things, but I'm dealing with that. All in all things are good!

Love2Quilt
Ovarian cysts/mases are tricky. A biopsy is usally not done as should it be cancer, there is the risk of cells spilling into the abdominal area. Most of the time, doctors prefer to remove mass/cysts whole. Now the trickier part is that there is no way to know for sure that an ovarian cyst/mass is cancer or not until removal. There is not test at this time to definitively rule out cancer.

It is good that you are getting an opinion from a gyn/onc as they have more expertise in the diagnosing and surgery for these masses. Ct scan, transvaginal ultrasound and a CA 125 can help determine in the probability of whether it is cancer or not cancer. This is where the training and experience of a gyn/onc is very helpful.

You will want him to explain to you the characteristics of the mass and whether these characteristics lead him to believe if this is benign or not and why. Has this mass changed any on the ultrasounds? Have you had problems with ovarian cysts in the past?

The CA 125 reading can indicate it "might" be cancer but there are many reasons other than cancer that it can be elevated to that is not reliable in diagnosing. It comes into play after surgery, how much it comes down, does it go down more after treatment if they are needed.

All this being said, more cysts/masses are benign.

Let us know what you find out.

s
Jane

I think hysterectomy as a remedy for ovarian mass is not a popular "fix" judging by the few responses I get to my posts, but appt. yesterday with a gyn. onc. confirmed that.

He is recommending another 2-3 mths of WW to check interval growth. Feels the tumor is mostly dermoid (it has teeth!) but there is a small solid section that he will biopsy. He wants to sched. a Lap. to take samples, remove scarring and adhesions from c-secs. and check the abdom. cavity for anything else suspicious. He may have to perform laparotomy if the scarring is too severe. My symptoms are mainly bowel/bladder pain which could be from adhesions (but U/S revealed an ovarian mass.) And of course if he finds something ominous . . ., well that's why I'm here.

This is a far cry from the lst doc who reminded me of the queen in Alice in Wonderland -- instead of "Off with their heads!", it was more like [b]"Out with her uterus! Out with it all!" Thank God for 2nd opinions!

I had a carotid aneurysm in '95 and am not a candidate for HRT ever according to the onc. doc. With mild cramps during menstruation and only two days of "heavy" bleeding, he felt it was medically unneccesary to remove it all except in the case of OvCa diagnosis. So I am having a colonoscopy to rule out internal colon cancer and I go back May 29th for the next check. At that point we schedule the surgery.

Ladies, please don't be afraid to "offend" your doctor and do get a 2nd (or 3rd!) opinion. I have 3 young sons at home (youngest is autistic), a husband that works 6 days/wk and no family support system -- so having major surgery with life-changing results unnecessarily would just devastate our family financially and recover-wise right now.

I love this site and reading all the stories and the recipes -- what an added bonus especially the make-ahead and freeze types. Thanks to all of you incredibly awesome women!

Donna (49) R ovarian mass, scarring and adhesions, bowel and bladder issues

I am glad you had a second opinion and wish you well!

Kudos to you for getting the 2nd opinion! I also had a "complex cyst". My OB did the 1st surgery and ended up doing a TAH/BSO. I didnt get a second opinion until 1 month after surgery (now I wish I had done it first!). I ended up with a 2nd surgery (with the gyn/onc) to confirm the findings and to properly "stage" the cancer. Recovering from a 2nd surgery just... well it just ***** to have to do it twice.

I'm glad to hear your 2nd doctor is on top of things! Good luck and God Bless! I've been exactly where you are now.

TammyH

Oh, Tammy, I am so sorry you had to go through that a 2nd time! Thanks for your reply. I hope all is going well and you are starting to get some of your energy back. Be talking to you soon. Donna

I've got complex ovarian masses on right ovary and fluid on left. Also fibroids. CA-125 86. Had pelvic and vagina scan as well as Endometrium phy (uterus biopsy) and polyp removed. Histology for poly and biopsy come back normal. CT scan shows Mesentracic (spelling?) Disease as well. Endometrium 5mm.

Received a copy of O&G Registrar letter. What bothered me was thing about cancer wasn't conveyed to me at appointment .. encouraged me to think overall the likelihood of this being a significant cancer is quite low, but nonetheless we need to treat it very seriously and as such he thinks that surgery will be the way forward ..

Now got an appointment with a Senior Oncology Gynaecologist Monday week.