BRCA 1 2...it's Suzan again!!
 

Well, just got back the results of my BRCA 1 and 2 test...the one that my oncologist said was not necessary because Her2 breast cancers are usually BRCA negative//...and my BRCA 2 was 'positive for a deleterious mutation'. What a perfectly ugly word, deleterious!!! And the recommendation is for a prophylactic oophorectomy. I know that this subject has been discussed here before, but rather than look through all the old posts etc. I am asking for advice/suggestions/comments from any of you that have gone through this. I am making an appointment with a gyn/oncologist/surgeon for a consult and want to go in armed with my usual list of a thousand questions!!
Thanks in advance!! XO Suzan

Re: BRCA 1 2...it's Suzan again!!
 

Dear Suzan

I am very sorry about your BRCA 2 status. Although I tested negative, there is ovarian cancer in the family so I had a propholactic ooph 4 years ago. Please go to a BRCA savvy gyn as they have to be more careful in a BSO just in case. I also belong to FORCE - another online bc group for heritary cancers. I joined because I am seriously contemplating bilateral masectomy with immediate reconstruction and the BRCA positive ladies really know the score there as many get the surgeries propholactically. I would go on their site and ask away about BSO - they really know the score and other tests you need to get to watch yourself. They can be found at:

www.facingourrisk.org

Post on the main forum. You need not register to post.
I don't post there often (this is my place) but I am Becky H there. Soccermom is there too as Soccermom.

I know they will be great with all the questions to ask - especially BRCA ones and you can ask their board about recommendations for BRCA savvy doctors (gyn or others) and they'll lead you to some great recommendations.

Love and a hug to you

Re: BRCA 1 2...it's Suzan again!!
 

what is BSO? :-)

Re: BRCA 1 2...it's Suzan again!!
 

oops...ps Becky...knowing what I know now, if I were you I would go for the maastectomies!!!

Re: BRCA 1 2...it's Suzan again!!
 

Susan,

I have not been tested for BRCA, but if I were you, I would seriously consider an oophorectomy. It is recommended that you see a gynecologist oncologist for better advise. Ovarian cancer is a more aggresive and silent killer, so don't doubt and start looking for answers. Best of luck,

Paty

Re: BRCA 1 2...it's Suzan again!!
 

Suzan,
July 2006, I tested + BRCA2. Oct 2006 I found out I had invasive DCIS. Was small, but I opted for the bilat mastectomy with DIEP reconstruction. If you look at my profile, you will see that I had DICS twice before.
Dec 1006, I had an oophorectomy. It was a simple out-pt procedure.
Annually I have skin examination for melanoma since the risk for that is slightly elevated with the BRCA2.
Also, will have a colonscopy done every 5 yrs instead of the regular 10 yrs.

By the way, if I did not have the bilateral mastectomy, I would be monitered every 6 months with alternating mammograms and MRIs.

My surgical oncologist specialized in genetics. So she was the counselled and tested my sisters, my daughter and myself (actually she counselled me, but i was tested elsewhere)

Re: BRCA 1 2...it's Suzan again!!
 

I'm not up on the issues here but give kudos for pushing for the tests that grant you informed decisions.

Re: BRCA 1 2...it's Suzan again!!
 

BSO is bilateral spaginal (spelling is wrong - it means the tubes) oophorectomy. The tubes need to be removed too - structurally the tubes and ovaries look different but the cells that make them up are the same. Many ovarian cancer patients were probably fallopian tube cancer but it looks the same and the surgeons can't tell.

Re: BRCA 1 2...it's Suzan again!!
 

I read a few weeks ago about a link between HRT and ovarian cancer. I think you mentioned taking HRT. I'd ask an oncologist about that link, since you are also BRCA positive.

Re: BRCA 1 2...it's Suzan again!!
 

Hi Suzan, as you see in my signature, I am BRCA 2 + also and deleterious is a truly awful word! On June 15 I had a total hysterectomy(uterus & cervix) and removal of ovaries and tubes. My surgeon was a Gynecological Oncologist, my onc suggested one as they will be more attentive to removing all the tissue. I was able to have the DaVinci, which is a robot assisted laproscopic procedure. For me, it was the easiest surgery I have had.