Hi. My name is Nicole and I am BRCA positive and 31. I had no problem with that diagnosis as I always figured since I was a little girl that I would get Breast cancer. My mom is a survivor at age 37 and is my strength. My grandma and great grandma had breast cancer and died. My grandma died at age 52 following a blood clot from surgery and my greatgrandma died at age 35 from breast cancer and metasticized brain caner. I am not really that afraid of getting cancer itself, it's more of, when it is gonna happen. I was never one to want to do the prophylactic mastectomy prior because I was always very vigilant in my surviellance and knew my mom survived but now some things have come up that are making weigh this decision.

Recently, my MRI showed suspicious areas on both my left and right breast. I was still ok because I figured I knew what had to be done if it was the “C” word. I had breast biopsies done and to my relief they were negative but the radiologist recommened mastecomy. 

I found myself now more in turmoil than ever. If it was cancer, I knew what I had to do; now that I don't have it, I don't know what I should do next. I am meeting a breast surgeon next week to discuss my options. I know what I want if I do the surgery but I am more nervous than ever because there is no set path, no right, no wrong. I feel now that since my breasts seem to be changing and even though biopsy came back negative, I am worried they didn't catch “THE” cell that's gonna start it all.  Or am I going to need to have biopsies done each year. My cousin was recently diagnosed with cancer and her tumors were right around the spots that were benign a couple years ago.

I am making sure I make the best informed decision I can and finding this website and just knowing it exists is already helping. Also just putting my feelings done right now in these last couple minutes have already helped, so thank you. 

I am most interested in post surgical stories. How long did severe pain last? What scars do you still have? Did you make decision with your partner and did they react better or worse than you expected? My husband is on board with the possibility but I wonder how long it will be before we are back to normal, physically and emotionally.

Thanks Again!

Hi & welcome to our club! If you have read the posts, then you know that I am Tobey's survivor sister. I have HAD breast cancer. Tobey was faced with all that you are facing now after my BRCA Positive test. The only thing I can say is…..you do NOT want to hear the words, You have cancer. As hard as the decision is now to make, it's a no brainer. Do whatever you have to do to prevent it NOW, while you can.

Good Luck, we are here for you,

Lyn

Hi Nocole!

My name is Dianne and like you, I've always known that I would get it, just not when I would. I thought I was being vigilent and got my mammogram…but the radiologist missed the tumor which was the size of a marble. I found it the next month just in the shower. By the time I had surgery it was the size of a golf ball and two lymph nodes were involved.

Lymph node surgery hurts much more than a mastectomy.

Chemotherapy affects EVERY part of your body.

Menopause comes sooner or later.

If I had been given the choice, I would have chosen to do the surgeries on my terms and in my timing and finding the best doctors available.

But my doctor didn't believe that I was at high risk (I don't have any sisters or aunts), so I was not given the same opportunity as you. The opportunity to possibly avoid the pain that I now live with constantly, the fear of recurrence, the many medications that I now live with and the suffering that my family has been through – two years and counting.

You can read my story here: http://www.caringbridge.org/visit/dianneduffy/journal

And to answer your questions: My husband was totally supportive of the double mastectomy before we ever got the BRCA test results back.

The mastectomy part only had a short amount of pain (about a week), the oopherectomy pain was even less. I had delayed reconstruction so the tissue expander insertion was about the same as the mastectomy, and the “exchange” was a piece of cake after all that.

The amount of scarring will depend a lot on your surgeon. My mastectomy left large scars (regular surgeon), but the reconstruction scars are much lighter (plastic surgeon). If you have a good surgeon he/she will give you techniques that will minimize the scarring.

I hope this helps. Best wishes with whatever you choose.

DDuffy said:

Hi Nocole!

My name is Dianne and like you, I've always known that I would get it, just not when I would. I thought I was being vigilent and got my mammogram…but the radiologist missed the tumor which was the size of a marble. I found it the next month just in the shower. By the time I had surgery it was the size of a golf ball and two lymph nodes were involved.

Lymph node surgery hurts much more than a mastectomy.

Chemotherapy affects EVERY part of your body.

Menopause comes sooner or later.

If I had been given the choice, I would have chosen to do the surgeries on my terms and in my timing and finding the best doctors available.

But my doctor didn't believe that I was at high risk (I don't have any sisters or aunts), so I was not given the same opportunity as you. The opportunity to possibly avoid the pain that I now live with constantly, the fear of recurrence, the many medications that I now live with and the suffering that my family has been through – two years and counting.

You can read my story here: http://www.caringbridge.org/visit/dianneduffy/journal

And to answer your questions: My husband was totally supportive of the double mastectomy before we ever got the BRCA test results back.

The mastectomy part only had a short amount of pain (about a week), the oopherectomy pain was even less. I had delayed reconstruction so the tissue expander insertion was about the same as the mastectomy, and the “exchange” was a piece of cake after all that.

The amount of scarring will depend a lot on your surgeon. My mastectomy left large scars (regular surgeon), but the reconstruction scars are much lighter (plastic surgeon). If you have a good surgeon he/she will give you techniques that will minimize the scarring.

I hope this helps. Best wishes with whatever you choose.

I thought your response, as heartfelt, painfully truthful & frightful as it was, was excellent. Continued good health to you.

Thank you everyone for your support and I'm sorry you've all had to be in these situations as well. As for doctors and surgeons, I fortunately have been very lucky through some very unfortunate circumstances of my cousin. Last year she was diagnosed with breast cancer and had a very tough recovery from mastecomy and implants including necrosis, infection and a plastic surgeon who just didn't do a great job. She has been researching more and found a great breast surgeon and plastic surgeon team that will be doing the tram flap procedure on her this summer. These are the doctors I'm meeting next week. If I decide to get the procedure done, I will be looking to do the flap procedure as well and will be having it done in the fall, so I will be able to see how she is recovering and the work the doctors did. My mom also had the procedure done in '89 but so much has changed this then. Thank you all for your stories and links. I'll be sure to check them all out. Thanks again!

I went to one plastic surgeon last week along with breast surgeon earlier this  month. Basically I have to look at all the options but looks like i will be getting a mastectomy and deciding on which type of reconsrtuction. Most likely will be implants though as bilateral Tram will prevent me from carrying a pregnancy. We probably aren't going to have kids but I don't like the options being gone. I also am meeting another surgeon next week to get another opinion and ask him about the Diep procedure. I am most likely not a good candidate because I am too overweight but this way I can have piece of mind for which way I choose to have it done.