whether to have hysterectomy

[kath1234567]

I am 40 years old and my mother died of ovarian cancer when she was 45.  My38 year old sister was admitted two weeks ago and they told her that she had ovarian cancer and thought stage 3 because she had fluid in her stomach.  They did an ultrasound and found a tumor the size of a football on her ovary.  They are doing surgery and one Dr says it is more than likely cancer and the other is saying there is a good chance it is benign.  Her genetic testing results came back and she is negative for a mutation.  However, when she was originally admitted due to severe stomach pain, they found she had a blood clot in her lung which the one Dr says correlates with cancer.  So we have to wait for a few days to hear the results.  I am contemplating having a hysterectomy as I am finished with having kids and want piece of mind.  I was 16 when my mom died so it is always in the back of my mind.  The genetic counselors want me to wait and based on her official diagnosis, get tested and then have the surgery.  Can anyone advise if they are right about blood clot in the lung correlating with cancer?  Should I absolutely have a hysterectomy even if I test negative for the mutated gene?  What are the odds af ootball size tumor could be benign?

[hopeshell]

Also, you should check out the hystersisters website because there are lots of great info on that site.  You will probably find others contemplating that same decision.  :)

[hopeshell]

Wow. Sorry to hear about your mom and sister but don't panic yet.  I think you really have to be followed closely by your gyn and perhaps they could do bi-annual tranvaginal ultrasounds to look for cysts that are forming.   That would be one way to keep a check on the ovaries before a mass has the chance to grow and spread.   Ultimately, that will be a personal decision for you to make, but, knowing what I know now after having had a radical hysterctomy, I recommend you avoid it.   I thought just like you did prior to my surgery - just take it all - its done all the time.  But, my gyn/onc had the plan to only remove all if it was cancer because he indicated it would be better for me to keep my ovaries if it wasn't cancer.   Unfortunately, in my case it was cancer.  I was blessed to be early staged and didn't have chemo, but my quality of life stinks compared to how I used to be.  I am married, with two kids (39 now) and I feel like an achy old lady.  I  already have early onset osteoporosis, a persistent lymphocele from where my node was removed during surgery, a possible hernia, no sex drive, persistent insomnia and joint aches, vaginal dryness, weight gain, skin elasticity changes (like sagging boobs), memory issues.  Not to mention there was a year and a half of extreme hot flashes that thankfully are much less frequent now.  I am making the best of it all and am so thankful to be here but I caution you that you should be proactive and on top of your health but think and pray really hard before making that decision.  I was always a very upbeat person, lots of energy for my hubby of 14 years and kids and always took great care of myself including exercise.  Despite my best efforts, I pass a mirror and don't even recognize myself and worst of all I never feel good.  I think most of my negative symptoms are because I am missing hormones and not from the ovarian cancer because my cancer is gone.  Yes, HRT is an option (especially if you don't have cancer) but it only helps with  some of the problems I mentioned  and you will still have issues you can't touch. Also, there are studies that show HRT increases your risks for stroke and breast cancer.  And, if you do take HRT and your body is predisposed for ovarian cancer, who's to say that it won't grow where your ovaries used to be and you will end up with primary peritoneal cancer which is just as deadly as ovarian cancer. Anyway, sorry for the length of this but I think this is the kind of info you are asking for.  If you get cancer, you have no choice.  I am sure there are women who didn't have all of these happen like I did, but that is just my 2 cents from the heart.  Best wishes to you and I hope your sisters mass turns out to be benign!