Being BRCA 1 positive

StayingStrong76

I was told in November 2012 that I was BRCA1 positive. Both my sisters too. Unfortunately my middle sister who had stage 3 ovarian cancer sadly passed away June 9 2014. I had my ovaries and Fallopian tubes removed, not my uterus. I'm considering the Bilateral Prophylactic Masectomy, but am very scared. Especially with all the other cancers this gene mutation causes. I don't know what to do. If anyone has advice I would greatly appreciate it. Thank you.

BayouBabe

hello - sorry you find yourself in this situation.  I am BRCA 1+ also.  Please look at the FORCE website if you haven't found it already -  www.facingourrisk.org. Any specific question I can answer?

StayingStrong76

Thank you, I'm going to look it up now.

StayingStrong76

Is there anyone out there who is also considering a Bilateral Prophylactic Masectomy? Can anyone tell me what to expect? I'm scared.

sherrbear

I am in the same position as you scared.  My surgery is scheduled for Tues I will let you know how it goes

Chamomile

Hi, Staying Strong  I am almost four months out from having my prophylactic bilateral mastectomy.  While everyone is different, for me it was a piece of cake.  I'm also BRCA1+.  I also did the oophorectomy, as you have.  I chose to have immediate reconstruction using the one-step, which is not as commonly done as reconstruction with tissue expanders.  As the previous poster mentioned, facingourrisk.org is a tremendous resource for BRCA people.  Regarding surgery, I was terrified going in for my double mastectomy, crying while walking into the hospital.  I knew for me it was the right thing to do, but it was still very scary.  The actuality of it, though, was very different.  I woke up with no pain whatsoever and felt completely clearheaded!  I was shocked, really.  Not what I expected!  Recovery was fine, too.  I didn't drive for about three weeks due to using my arms.  Staying home for that long was a little hard.  It gets old very quickly.  I don't know how old you are.  That could make a difference in how you're taking this news.  I'm 51.  My reconstruction is not like my previous breasts, but they are completely fine - especially considering the tradeoff.  I can wear clothes and a bathing suit, and no one knows I've had a double mastectomy.  You do lose sensation, though.  That's the biggest drawback for me, but, again, a small price to pay in my book.

Good luck to you, and I wish you all the best!

vyneza

Hi StayingStrong76, 

I am not positive for BRCA1 but rather I have Li-Fraumeni Syndrome its also a pre-cancer syndrome with a life-time risk of cancer at 100% by 50 and it  also means I can get cancer anywhere on my body. Breast cancer is very prevalent with this syndrome as is ovarian cancer so I have to do a prophylactic bilateral mastectomy within the next year and when I am ready (35 yrs old with no kids) a bilateral salpingo-oophorectomy.

I'd say you're already halfway there since you did BSO surgery. But I understand, the idea of doing a prophylactic mastectomy is terrifying, my breast oncologist Dr. Julia Smith is having me meet with a breast surgeon and plastic surgeon next week so that I can feel less scared about everything and also have a team in place when I am ready to proceed. She also said that for us who are doing it as a preventative measure we have the advantage of not having to be rushed unlike others who have to do this due to a current cancer. 

This site is obviously an excellent resource and once you feel more comfortable you can start researching which options you may feel best for you. I plan on having a bilateral nipple/skin sparing mastectomy with one-step reconstruction. I also plan on doing fat grafting to help minimize rippling since I'm on the thin side. I did all the research for my sister which ultimately ended up benefiting me as well. We learned of our mutation after she had been diagnosed. 

My identical twin had her surgery back in May (hers was due to breast cancer and not prophylactic) and she is slowly but surely becoming active again. She returned to working remotely 5 weeks out of surgery, and has stayed active walking etc. Her doctor cleared her for physical therapy after 8 weeks and she said that has really helped her a lot. 

This is an incredibly difficult situation to deal with but luckily there are others who are going through the same thing and can help provide guidance and support. 

Luvbug96

I just found out BRCA 1 positive last week, initial surgery consult is MOnday.

I'm ready to get this done...how long can I expect to wait from initial consult to surgery day and what all can I expect in between those dates?

Moderators

Welcome to the BCO forums and we feel you'll get great feedback regarding how others have coped. The waiting is very stressful for everyone. You also have long waits that don't make it easier, but those waiting periods vary a lot by location and doctors.

We hope
you can gain lots of valuable info on pre and post surgery. Often just having someone who understands can help in some small way.

We wish you the best and keep the forum advised. You may find
more relevant feedback in other forums like Surgery - Before,During, and After and articles on our main Breastcancer.org site, like BRCA1 and BRCA2 Testing, so suggest you read and search there.

The Mods

k8eekatt

I am not BRCA positive but I am ATM positive, which is a gene that makes a protein that works with the BRCA protein.  The increased risk of breast cancer with ATM is any where from 2x to 12x more.  My particular gene has not been studied enough to know where it falls in that scale, but I have already had breast cancer and I do not want it again.  It is very perplexing.  I got this test result back right after my spring onco visit and now I am about to have my fall onco visit.  I am going to ask why they do not recommend prophylactic mastectomy.  I really do not want to do chemo again.  I am very encouraged to hear the stories of good healing here, when its not in conjunction with chemo and radiation.  I bet it is much easier for the body to heal when not undergoing those other treatments.  I was denied the BRCA test 4 years ago when I had my surgery because Myriad would not accept the voice mail I left saying to please do the test and I would pay for it; my clerk would not call me back either, she would leave messages at my home phone right before leaving her office for the weekend.  They wanted a signed fax saying I would pay for it since my insurance denied it.  The blood spoiled before they ran the test and there was no time to get it done before surgery so I had a simple lumpectomy with radiation and chemo.  Now I want more information about the ATM mutation so I can decide if I need to get the prophylactic mastectomy or oopherectomy.  My husband and the nurse at the support group at my hospital keep telling me not to think about it.  I really do not want to go through the cancer treatment again.  Like BRCA, though, the ATM gene can make six other cancers more likely.  By taking chemo and neulasta, I may have dramatically increased my risk of additional cancers. I already do not drink, eat little meat, exercise daily, TRY to sleep but the hormone blocker makes that hard.  Any way, I am glad to be alive and to have time to think about the decision.  As it stands, I do not think they will recommend it until another cancer comes then I face the whole 9 yards again.  Let me tell you, getting that mastectomy before you have cancer is well worth it if you are other wise healthy.  Especially if you have good results with your reconstruction, which you can't really plan ahead except by interviewing surgeons and seeing pictures of their work.  The ladies in my support group have challenging times dealing with reconstruction during chemo and radiation, everything has to be timed so that the surgery can mend, and the treatments can be effective.  Thank you for letting me share your thread, believe it or not, ATM is even more rare than BRCA.  In reading about the mutations on reputable medical web sites like pub med, I learned there are many types of BRCA and the risk associated with each of the over 2,000 possible mutations varies.  You may want to investigate if the risk of your particular type is only 20% instead of 80% chance of getting breast cancer, for instance.  I have no idea what my increased risk is; it would be good info to have. Best of health to us all!! K

kaos1

StayingStrong76, go for it!  My sister had her prophylactic bilateral mastectomy a few  years ago as she's BRCA1 positive, too, and is doing great.  I had one last November because I was diagnosed with stage II breast cancer, and I bounced back really well....back to work (desk job) in one week.  I still have tissue expanders but am doing my exchange next week (along with an oophorectomy).  You will probably be a candidate for a nipple sparing mastectomy, as I was, and I have to say I'm enjoying my new 'look'!!  Like the other poster above, when I work up from my surgery I felt perfectly fine - just thirsty.  Stay strong and feel good about knowing that you're doing everything you can to stay healthy.   

dijo41

Hi, am new to this,my sister got the all clear after two times breast cancer,which is fantastic,the docs then tested her for the breast cancer gene(brca1) which she has,myself(41) other sister(49) and brother (45) also got tested and all have the gene which comes from mums side,my older sister and i are going to get double masectomies and overies out for precaution,im only 41 with a 17 year old daughter that needs her mum in her life,so really its a no brainer,i also have very well controlled type 1 diabetes,just a bit scared by all this,does anyone have some comforting advice.....thank you

dijo41

Hi, am new to this,my sister got the all clear after two times breast cancer,which is fantastic,the docs then tested her for the breast cancer gene(brca1) which she has,myself(41) other sister(49) and brother (45) also got tested and all have the gene which comes from mums side,my older sister and i are going to get double masectomies and overies out for precaution,im only 41 with a 17 year old daughter that needs her mum in her life,so really its a no brainer,i also have very well controlled type 1 diabetes,just a bit scared by all this,does anyone have some comforting advice.....thank you