Previvior?

Hello,  my name is Mary.  My mom has stage iv bc.  While I have had 1 biopsy in my life that was benign and a few nerve wracking "call backs" for ultrasounds etc. I have not had ADH.  That being said, I am considering a PMBX.  My mom's aunt died of bc.  Now it seems mom is at the end of her journey.  I do not believe I can live with the threat of bc in my life any more.  We did test BRAC and BART negative, but given how many genes probably contribute to this disease, this is little solace.

Would you be kind enough to share your experience of the PMBX with me?  I am naturally well, afraid beyond words.  But I think I am more afraid of cancer, having seem my mom go thru this. 

Thanks so much, Mary

PS - I sooo think you did the right thing.  I hope you are satisfied with your decision and have a long happy carefree life

I use that term, too. LCIS found in both breasts incident to three biopsies where suspected lesions were found to be benign. BRCA and BART negative, but mom, her sisters, their mother, and her mother all had BC, and my mom is the only one who survived more than two years (44 years and counting!).  So, I grew up waiting my turn. When I learned I had LCIS, which I took to be an early warning signal, I made the pbmx decision instantly.  Surgery was 20 months ago, I have zero regrets, and in fact I consider myself incredibly fortunate.  I was able to go into the surgery, which I combined with diep recon, while healthy, and I was able to skip chemo, rads, and anti-hormonals that would have been candidates for my treatment plan had I actually waited for my turn at the family disease.  

I have a daughter, age 31, and of course I worry about her BC risks.  Interestingly, she is too well endowed--so large that she has problems, is considered a good candidate for breast reduction, and she's thinking about it seriously. I'm secretly cheering for that decision, because I know that if breast tissue is removed, it will go to pathology, which could lead to her own LCIS finding. I wouldn't try to influence her to have pbmx, but finding LCIS, if she has it, would give her options that most women who get BC never had. She would have the choice of whether to take the same aggressive step I took to avoid it, or to engage in the watchful waiting.  Wishing a breast reduction for my daughter is a mighty strange way to look at things, isn't it?  Being negative for the gene mutations is no consolation when all your female relatives had the disease.  We really need a vaccine, so every woman can be a previvor--without the surgery!

Carol

I can totally understand this term. During my vaccuum assisted core biopsy on a large tumor, the radiologist found ADH. She had stated that the lump was so big she didn't trust that there wasn't cancer in it (which was right).

She had also told me that the surgeon (with whom I had already had an appt from my initial appt. with a family doctor) would take out the worst looking part, and leave the rest (meaning leave the rest of the precancer). This doctor was Harvard educated and wrong. She put me into weeks of panic before I could see my surgeon. Why would they leave any precancer in there I thought. Why not take it all out rather than leave it and wait and see if it turns into cancer. At least my surgeon was not that misinformed.

So for awhile, I was a privivor.

Fter my lumpectomy with dirty margins, I found out I had DCIS and my milk ducts were riddled with that AND ADH, I knew a mastectomy was best for me. I would have been living like a reincarnated privivor all over again in my mind. My breast seemed like it was a fertile breeding ground for ADH and DCIS. 

Had I had another lumpectomy plus rads, I would have been living with previvor all over again. Everyone chooses the treatment path best for them.

I totally consider women with anytype of precancer part of this community. Living with precancer is like living with a ticking bomb...Waiting for the shoe to drop and for it to turn into cancer. Some turns into cancer, some don't. But personally, living with that fear certainly qualifies any of us to join the BC cluc no one wants to join.

I admire those that can wait and see. I certainly couldn't. 

I think we are all wonderful in our own ways no matter what we choose.