BRCA precautionary surgery question

Good question; tricky answer.  There is no officail "they" that I am aware of to recommend prophylactic surgery - meaning no medical organization.  However, my oncologist stated emphatically that I should have bilateral mastectomy following treatment for ovarian cancer.  The risks are just too high to gamble.  However, it was ultimately my decision and I am completely happy with the outcome of my recent prophylactic, bilateral mastectomy and DIEP reconstruction.

I can't really say much about the PBM.  I tested positive during my neoadjuvant chemo and since I had ILC which is hard to detect without an MRI I didn't have any problem going with a bilat when it was time to have surgery.  There is no way that I wanted it to happen on the other side and go through this again. So that decision was really my call.

But all my docs have really stressed that having an oomph would be a good idea since it is so hard to detect ovarian cancer.  The chemo put me in menopause so after I get through with all my tx and have had a chance to catch my breath I'm going to have that done. 

hi Issymom

When will you remove the ovaries? I like to remove too but I like to wait till Mid Sept., as I am still reocovering from db Mast. and reconstruction in Feb. But I am worried if waiting till Sept is risky.

What do you think?

Newalex - I am scheduled for my hysterectomy next Friday, June 4th.  I am supposed to have it done via the DaVinci Robotic device.  It is supposed to be even better than the traditional laproscopic surgery.  My doctor said she had on patient who went snow skiing 2 weeks post surgery.  As for whether the fall is too late, I can't tell you.  You could talk to you doctor about having a trans-vagina ultrasound to see if anything is going on.  It is not fool-proof but it could give you some piece of mind.  I had one done yesterday to ensure that I was a candidate for the daVinci and make sure that there were no surprises when they went in.  I think it went OK but won't know until I hear from my surgeon today or tomorrow. 

Dear Chinablue, what I have read on other boards is that the mastectomies and having the ovaries removed along with the tubes, can make it more difficult for a new cancer to begin, but it does not take away the chance of recurrence in other part of your body. I know that this is difficult to hear, but I'm pretty sure that this is true. I am tn as well, and BRCA2. I had my ovaries removed last August, and I'm having a double mastectomy in July so as not to get a third breast cancer diagnosis. But...I also am aware that there is still a chance that the cancer can come back in the bone, liver, and brain. With this in mind, it is recomended to eat a low fat diet with lots of vegies and fruits, and exercise at least 30 minutes a day if you can.

Take care,

Carla

Hi Chinablue,

Yes, if you have the Brca , the standard of care is to have a Bi Mx and ovaries out.  I was told that I could have a lumpectomy with radiation instead of the Masectomy, as well.  I am getting a Bi Mx, sential node biopsy  next week and I pray that I have negative nodes.  If I were to have positive nodes, I would still have to get radiation. 

MRDRN

yes, the standard answer you would find from dedicated breast surgeons, in answer to your original question, is to have breasts and ovaries out for treatment of BRCA positive......your choice of course but your chance of getting cancer can be as high as 85% by age 50 without a BC dx....and it turned out true for me.  I learned the word "previvor" , that I had the gene, and next thing I know that first MRI was positive for BC.    After Bi Mx a recurrance is still possible, but down to less than 5%,  Three Surgeons that I consulted with told me the same thing basically...and I am going to do it to hopefully avoid rads and chemo...but that remains to be seen.

Having my ovaries out was the first thing I did and now I am getting a Bi Mx... I will tell you that my sis who is also positive is just doing the monitoring every six months...so it is true that we all have our own journey :)She is ok knowing she is a "previvor"....and goes for every six month mri and mamm, which alternate every six months, and the insurance covers all the costs.  For more information, feel free to PM me.