Surgery for ovarian cyst

[SR5757]

I have endometreosis, Lupus and have had severe pain in ovulation, hospitalized once with 2 large cysts, one on each ovary and a younger 35 year old sister with breast cancer.  I am 46 now with a 5 1/2 cm serious cyst adenoma on my left ovary that has been there growing for the last 4 months or so and 2 smaller cysts on my right ovary.  I also have an elevated CA 125.  I am trying to decide what to do.  Should I get just the large cyst and ovary removed or have a total hysterectomy and both ovaries removed.  I am very afraid of the instant menapause but my sister keeps telling me get everything out, the possibility of cancer is not worth waiting.  Anyone have a idea?  Please help!  My doctor says it's kind of a very gray area and for me to decide. The cyst looks thin walled and fluid filled, but is definitely not a normal occurance and can only know for sure if get it out.   I am thinking about getting more opinions, I think this would be a lot easier answer if my sister didn't have breast cancer and i didn't have a history of suffering and my body making these cysts constantly!  Thank you!

[janepm]

it seems to me like many of us, our research is resulting in some conflicting things. First of all, I too have gotten MANY women saying "take it out, don't worry about it." Well that's not how I feel, I feel that I need to ask as many people as I can about this and that includes second medical opinions.
Now this was a Gyn oncologist you went to, did you find that person was more knowledgeable about cysts? Did he have anything to say about the lupus and the family history of cancer and all of that?

Sometimes all we can do is gather information and then go with our gut. Making lists on paper and thinking about what we've written, writing down our thoughts in a journal, may help bring to a decision.

[SR5757]

Just wanted to update.  I saw the doctor yesterday for my pre op and appointment.  I decided to go to a gynecologic oncologist, because of the family history of cancer.  Just from looking at my records he seems encouraged that he should only take out the two cysts.  He also said, he would want to wait until he gets inside and see what things look like.  He had me consent for a minimum of two cystectomies and a maximum of taking everything.  He seemed to think that most of my pain and discomfort was more from the endometreosis rather than the cysts!  This surprised me.  My sister with the breast cancer keeps telling me to just take everything out now, so I never have to worry about the cancer, but the doctor keeps saying, we should only take the very minimum for as long as possible.  This surprised me.  Anyone have any thoughts?

[TrudieC]

You would be at risk of future surgery if you have a problem with the ovary remaining.  This is something you'll have to weigh.

[SR5757]

Thank you for that information.  That is why I keep wondering about having everything out.  But, I am also scared to not be able to have any hrt after instant menopause.  I wonder if leaving one ovary aand taking out the rest would be a good idea.

[TrudieC]

Hi there.  I had grapefruit cluster of cysts removed just over a year ago and at that time I wanted a complete hysterectomy since surgery with me is risky - they needed 2 surgeons fo rme.  Well, they didn't do it (just took the cysts, ovary and tube) because of all the adhesions I had and all my organs were glued together.  They were afraid they'd hurt something else.  It was at the time that I started suffering from that cyst that my Lupus started flaring.  After the surgery it calmed down but regular flares started up earlier this year.

I now have another cyst on my remaining ovary and probably ademenomyosis.  I am not impressed that I would not be having these issues now if they'd removed everything last round.  Also, the estrogen in your body can make your Lupus worse (I flare awful just before my period) and many women get relief after a hysterectomy.  

I'm saying I would suggest you have it all out.  With each surgery your body is stressed and can cause your Lupus to flare badly.  If you do, ensure you talk to your rheumatologist about HRT.  I have read that it is not generally recommended for women with Lupus.  

Good luck and please keep in touch and let us know how it goes.

[SR5757]

Thank you so much for your feedback.  Yes, I am going to go get two more opinions from docs in a larger city, as I live in Montana and the resources are limited.  I worry so much about the HRT with my sister having breast cancer, she has not had any side effects from instant menopause, but I think she is one of the few lucky ones.  I also tend to suffer depression and mood swings and that is one of my biggest fears with the change.  Again thank you! I will hopefully feel better about a decision with a little more info.

[janepm]

I don't blame you for feeling this way, I would do. It's a hard call. And I am just beginning this journey so I'm afraid I don't have any specific suggestions. To me, my gut tells me that aside from perusing a site like this and asking as many as possible, do you feel you need to get a second opinion?

There appears to be a lot going on there and perhaps a hyserectomy would be in order. As for instant menopause, yes, it can be a challege. I have a natural menopause going on and the worst of it is the hot flashes, many ways of managing those so there are options though I understand HRT is the best but it does have it's risks. I'm on day 3 of the HRT and so far, it's knocking me out at night, making me sleep well and I think bringing on a lot of depression which are side effects. I am taking a moderate dose. But there are other ways, The National Menopause Society is a good organization who you can ask some questions of of that. I think you are very smart to stay on top of all this and you are asking all the right questions.