Prophylactic Bilateral Mastectomy w/Reconstruction

My DH thought a PBM was too extreme, and we "discussed" it for most of the three month wait for surgery. My kids were totally supportive. My dad cornered me and harshly questioned my decision. It wasn't easy, but I knew in my heart I had to do it. I never looked back. Don't you worry about those folks for a second. I truly believe we have a sixth sense. Listen to it . My surgery was unusual and didn't turn out as I had hoped. I have to say I get a little jealous when I hear of successful PBM with clear final pathology. I KNOW your cousin would give anything to turn back the clock and be in your shoes, we all would. You'll be just fine. The thought of my surgery was much worse than the actuality of it.

RonyaDenean - unless someone has actually been diagnosed with breast cancer, and has gone through whatever treatment is appropriate, there is NO WAY they can understand how it is affecting you.

In fact, even if they HAVE gone through this, there is no way they can know exactly what you are feeling. We are all just so different.

If you haven't seen this before, here is a cute film that explains very simply what most of us need when we are caught up in the fear and uncertainty of our choices and decisions. It explains sympathy vs empathy very well.

There will be times when you just have to draw on your inner strength ( and you DO have more than you ever imagined) to deal with those who would question you or challenge you. Stand firm, hold your ground. Take the time to explain if you believe it would help. Otherwise, you can just say you are acting on the advice of your doctors after many tests and discussions.

https://www.youtube.com/watch?v=jz1g1SpD9Zo

Dear MorningGlory, Welcome to the BCO community. We hope that you find support and information here that can ease your way. This is a wonderful community of others with shared experiences who can offer understanding and encouragement. We hope that you will keep on posting and keep us updated on your surgery. Here is a link to information on our site about nipple sparing mastectomy. Best wishes to you.The Mods

I am so sorry you are dealing with this. Thank you for sharing. How are you now?

I tested positive for a new gene mutation called BRIP1 in November. As you may know, it carries a elevated risk for ovarian and breast cancer. It is a fairly new gene mutation and there are not clear cut guidelines on how patients should proceed.

So, here's what has happened so far:

My mom told me she had the BRIP1 gene mutation and when I went to my OBGYN in Nov. he recommended that I see a genetic counselor. So, we mapped my family cancer history (high in ovarian and breast, especially on my maternal side) and she ran the genetic panel. So, like I said, I have this BRIP1 mutation.

Next- the genetic counselors recommended I see a gynecological oncologist. I did that, and she was very informative and we discussed options.

She said she could do a laproscopic surgery and remove the ovaries, but also mentioned the possibility of taking out my uterus as well. She said that way, I may be able to take some low dosages of hormones to help with the instant menopause onset (hormones are still very controversial too). She said this can be a lifestyle change and can cause problems for some people. A friend told me her surgical menopause was horrific and that she still deals with the side effects on a daily basis. There is no screening for ovarian cancer and it is a silent killer and often when found it is too late. I don't want that, but also have a history of depression and those side effects scare me.

In the meantime, Dr.set me up with a transvaginal ultrasound to check on things until I make any decisions about my ovaries and any possible surgery.

The genetic con. also recommended that I see a breast oncologist, so I did that too. I met Dr. Oncologist for breasts and she set me up with a breast MRI on this Friday, and I had a 3d Mammogram last week, she wants to do the MRI this week bc I have dense tissue.

Dr. Breast Oncologist mapped out some plans of action that I can take- ranging from least aggressive to most aggressive. Of course, she said I can get 3d mammos twice a year, or I can see a medical oncologist and take a preventative med... I think tomoxifin or something like that??? My friend at work took tomoxifin and it caused severe blood clotting issues, so I am just trying to learn as much as I can.

The breast oncologist also looked at my breasts and gave me a few options if I wanted to do a double mastectomy. She referred me to plastic surgeon to discuss those options for different types of mastectomies.

So, I am definitely in the information gathering stage and am seeking as much info as I can find.

Any insights would be helpful and appreciated. Thank you. I'm 36

Rony, I went into the PMX pipeline in June 2009. Family history 21 woman paternal side 9 have had BC. Mammo  Aug 2008 clear NED. A total body fall in Sept. 2008, not sure if something in that fall contributed. Dec. 2008 MRI.  Delay between mammo and MRI was b/c there was NED on mammo i.e no imperative to get going.  MRI,  there was all the signals of a BC.  Jan. 23rd 2009, bx . Pathology showed a very aggressive BC. Ploidy 1.79(2), grade 2 (6).  Not good.  Feb.18th 2009, BMX and TE's no nipple sparing. Pathology: I moved from a grade 2(6) to a grade 3(8) in less than a month  AND the cancer cells extended up to the nipple. No clue how common or rare. Just happy all was gone. How often is a BC as aggressive as mine, no idea.

I was aggressive about getting all done. Three days from now I have my 6th cancerversary from BC