Considering prophylactic masectomy

@Esmerelda, There is one limited study that states that women that are high risk but test negative for BRCA 1/2 are at no greater risk for ovarian cancer.

I can not post the link but the abstract is titled "Risk of Ovarian Cancer is BRCA1 and BRCA2 Mutation Negative Hereditary Breast Cancer Families" 

@Marcia, did you test for BRCA 1/2? The family history of BC and PC is common in carriers of BRCA mutations.

Agggg! Sandy! I feel like I'm reading my own post! I am scheduled for a BMX in two weeks, and have IDC in one breast, but have very dense breast tissue. I had an x-ray of my hip (because I was having some joint pain and wanted to get it checked out) and they saw that I had a 3.5 cm cyst on my ovary. The report says it's a simple, fluid-filled cyst. Was yours? My doc wants to follow the cyst and do an ultrasound in two months. Geesh, I really don't want to have my ovaries out if I don't need to. BUT, I REALLY don't want to be at risk for ovarian cancer!

I have not taken the genetic test (yet), but my did and she's negative (she had breast cancer). There's no cancer on my dad's side. Sigh.

In regards to your sister, it's such a personal decision, isn't it? Is she planning on getting tested? I wish us BRACA neg. girls could have clearer answers! 

Yes Liz, I tested - in 2002, diagnosed 2004 Stage 2B, retested using full sequencing 2005 negative again.. Mom negative.

Significant family history (Mom, 3 aunts, 2 cousins)



Hugs,

Marcia

BRCA negative here too, Esmerelda & others, with an extensive family history of BC/ OVCA on both sides. I am almost 2 yrs. out  from my risk reducing NSM and 7 months out from my Lap. BSO. Best decisions ever, but a highly personal choice, and happy over the moon with no more worries, no regrets and amazing results.  Seek & u shall find what's best for you. Happy to share my experiences with anyone anytime

I can understand that low risk people might think it's strange to consider this kind of procedure,  but it's not their place to judge so don't let anyone do that. Being closely monitored works well for many people but it doesn't necessarily put the issue to rest. Prophylactic mastectomies don't necessarily do that either but the success rates seem to be very high. Plus you can possibly prevent cancer way before it becomes advanced. Again, monitoring is a very good method for patient people that don't mind the constant tests. It's a preference thing for sure.

 The reason I'd like to wait until I have children is that I'm hoping it will give me more motivation to do something like this. I'll have a little person relying on me and I want to be there for them. I'd be less inclined to worry about the little drawbacks and focus on the major advantages. I say that now but I still don't know if I can do it. 

Hi Sherri,

I know how difficult this decision is. I don't have breast cancer, but my sister has had it twice. Also, my father's mother and sister both died from breast cancer. In 2008, after my sister's second bc diagnosis, it was time to get genetically tested. After months of waiting, I was told I tested positive for the BRCA1 genetic mutation.

Based on my family history, the odds of my getting breast cancer were more than 90 percent, and I had a 1-in-3 chance of getting ovarian cancer.

The only thing running through my mind was how this was going to impact my children's lives. My mom just wanted to make sure I cut everything off my body that served as a potential cancer factory.

After seeing the infections and other issues with my sister's breast implants and expanders (expander infections, popping implants, gnarled skin, etc.), I knew implants weren't the right choice for me. Instead, I chose to have TRAM Flap reconstruction. Still, I couldn't get clear information or answers about the recovery. "Everyone is different" was the typical and frustrating answer.

I assumed other women wanted more information about recovery, so I wrote about my experience, first in my blog (joeysjournal.com) and then with an expanded story that included my family (my mom's involvement/pressure, my sister's cancer, my dad's failing health, etc.) in my book, Cancer Time Bomb: How the BRCA Gene Stole My Tits and Eggs. It is selling on Amazon and other places. At the end of the book, I included TRAM patient tips so other women would know how to be better prepared before, during and after their hospital stay.

I can't begin to compare my experience to my sister's cancer, but the process and my decisions were intensely emotional. It's never easy to tell surgeons to cut off parts of your body...especially when apparently they are healthy and there's a small chance they'll remain that way.

I hope this helps. With absolute honesty, I wrote about every good and bad thing in my book so women know what to expect when they face prophylactic surgeries (breasts and ovaries).

Joelle 

Hi,

I am 38 and just had a masectomy with breast recon last month. I did this because I was braca2 postive and my mother is as well and got breast cancer three times extermely high risk I was. Did it and happy. I want children some day and could never go through what my mokm has. Best descion ever I choose life and not feeling like a time bomb

I went ahead with the masectomy even though my family does not carry the BRACA 1 marker. We have a very serious family history with all grandmothers, my mother, greataunts all having breast cancer before 50. My sister had hers first and they found some problem cells that would become cancer, but when I had mine they did not find anything. I also had two lymp nodes tested. So I have two more sisters and we are all wondering if and when they should go ahead with the procedure. I am 52, my sister with the pre-cancer was 51, and my other sisters are 48 and 45. The procedure is very difficult and you will need a lot of help and support. I had a DIEP flap that failed on one side and had to go back for a second lat flap. I am recovering now.

What helped me decide to go ahead with the surgery was to realize that most likely I would develop breast cancer at some point and I am healthly now and able to handle the difficulities of the surgery and it is very hard. I see the women at the clinic who have to go through the chemo and radiation also. It is much more difficult for them. From what I understand there is not a great deal of research around strong family history that does not fall under the BRACA 1 gene. So this is a gray area; there could be a marker that they have not been able to identify yet.

I totally agree with the familia aspect.  My doctor said the BRCA 1 & 2 are just the genes they KNOW about. Meaning he believes as time goes on they will discover more. Anyway, with a strong family history I think she is convinced to go ahead with the preventive mx.  At least she can do this on her time.  

I had a nipple sparing on one side... what is it you want to know??