hysterectomy or not??

[kath1234567]

Well, my 38 yr old sister who tested negative for the mutated ov cancer gene had surgery on Thursday and her tumor was malignant and they found some in her other ovary and uterus and cervix and some cells had travelled to the abdominal cavity.  She was told she is stage 2 but full report will be back today and she will start chemo in 3 weeks.  So now I had a mother die at 45 and a sister diagnosed at 38. I am 40 and scheduled for a total hyst in a few weeks.  They say there is no way to test me genetically because they do not have the technology.  They are surprised my sister tested negative and still has cancer.  So obviously I have a VERY strong family history am I a walking timebomb?  

[Angie1992]

I can't imagine what you and your family are going through.  My family is similar on a much smaller scale.  In 2003, I tested positive to BRAC1, but they still have not found the markers for most cases ovarian cancer.  In 2001 I had breast and in 2003 I was diagnosed with ovarian cancer.  The gene came from my fathers side.  His mother had breast, her sister had breast, and another sister had ovarian.  My sister had breast cancer in 2006.  I have as sister who hasn't had cancer. Neither of my sisters have had gene testing.

This is a very difficult subject and a very personal decision.  I would strongly recommend you talk to a genetic counselor.  A genetic counselor knows the statistics and would be able to accurately answer these questions.  The genetic counselor I saw even helped me write a letter to female cousins I hadn't seen since I was a child, but it was my decision to write them.  I wouldn't consider you a walking time bomb, but as I'm sure you already know, you need to be carefully screened and you need to know your options.  It has to be very difficult for you, please see a genetic counselor, it might help make you more at ease or educated about you decisions.   Sending prayers to your family, your sister, and for your up coming surgery, Angie

[Ramsay14]

If you are done with the female parts, get rid of them now.  You are doing the right thing in my opinion.  Have the surgery done by a Gyn/Onc.

[Plonanon]

I would recommend that you take some time to become acquainted with FORCE. It is a really, really useful web site for women with BRCA mutations and even some who have tested negative for BRCA. You can learn a lot there about all the different aspects of your problem, and you can post your queries there and get lots of replies from women who either have been in your situation or women who have been in a similar situation.

In general, unless you are at high risk--and you undoubtedly are, based on your family history--removing your ovaries is NOT a good idea, as it can lead to many health problems later on, some of them quite serious. I had mine removed because I had ovarian cancer, but reading information on what conditions I am now at high risk for is not particularly pleasant.

[nyc lady]

Even testing postive for BRCA gene mutation does not mean that you will be diagnosed with Ovarian or Breast, it just shows that there is an increased risk.  

You need to speak with a GYN/Oncologist, and someone that does genetic testing...from there you can decide what is the best route for you.

Removing your ovaries, does not remove the risk of being diagnosed with OvCa, it only reduces the risk.

Best of luck to you,
Pam