Prophylactic Bilateral Mastectomy

elijahgirl-Ali84 had prophylactic BMX w/ DIEP at NOLA. You might want to PM her.

I had PBMX two years ago due to carrying two gene mutations (no reconstruction.) I have to tell you, it wasn't an easy recovery. I had a LOT of issues with healing, or not healing I should say. I developed cording in my right chest wall that stetched all the way down my right arm to my wrist. I thought I'd be fine with my decision to not reconstruct, but I'm not.

All that aside, I'd still do it again. With the PALB2 and Chek2 mutations, my BC risk is high. I needed to do all I could to mitigate that, and BMX was the best way. It's still not too late for me to reconstruct. It's just finding the right time that's the issue.

ps. I too am very anxious and look forward to this being done and dusted. See you on the forum for surgery July (when someone creates it ).

I had a BMX even though my cancer was in just one breast, not both. I opted for prophylactic of the other one because I did not want to have to worry (and I would have) about the remaining "clean" breast and because I was not planning on reconstruction, so I didn't want to appear lopsided. I would definitely make the same decision again. I don't have to wear a bra (yippee!) and I am learning to be comfortable with the way I look. I never was able to find a bra that fit me correctly because my right breast was so much bigger than the left. So I don't miss the bras.

elijahgirl-I forgot to give you a recommendation on bra for post op. Check out the anaono site. The bras are specially made for after BC surgery by a BC warrior. They are very soft, wide stable band, with just enough support. My favorite is the full coverage pocketed bra in the make merry collection. Well worth the cost.

www.anaono.com

I had prophylactic mastectomies on 19th June because of my family history of breast cancer and my identical twin sister being diagnosed with breast cancer in October and then a few weeks later they discovered it had already spread to her liver. I opted for no reconstruction because I didn't want to go through extra pain and recovery time, plus I didn't like having large breasts and thought I would have more options if I went flat. I wore bras with forms for a few days but they made me more sore, so I'm going flat at present. I have no regrets about doing this surgery because I didn't want to have to worry about getting breast cancer. No reconstruction means no more mammograms and being able to tell right away if there's anything awry (since tumours can be hidden under reconstruction).

I am also having a prophylactic bilateral mastectomy. IDC in my left breast 7 years ago and now there is LCIS in my right. So far I am having pre-pectoral implants. Nipple/skin sparing. NOW after reading what Lula had to say I may not want to save my nipples. I HATE when my headlights come on in the grocery store or anywhere cold and usually cross my arms to hide them. I don't know if I would want that 24/7. Hmmmm.

I did genetic testing this February. I had breast cancer in 2011. Didn't do the genetic testing back then. In January of this year I started a new insurance so I got all new doctors. It was kind of devastating actually but am feeling much better about it now. Since 2011 I have been receiving alternating mammograms/breast MRIs every 6 months. I found a new OBGYN and scheduled all my stuff. During my consultation with her she asked if I was interested in genetic counseling to see if I had BRCA1 or 2 because I was 41 when I had breast cancer and my Mom died of brain cancer. I said SURE why not! SO, I had the test. 3 weeks later I find out I do not have the BRCA1 or 2 gene mutation but I DO have a TP53 gene mutation which is much worse!!!! It is called Li-Fraumeni syndrome. I called my Aunt to tell her finding out that she had it too and never thought to call me. ?? We have never been really close, especially since my Mother passed away 14 years ago. So now I get an oncologist.....who is WONDERFUL I must add.......He explains Li-Fraumeni to me and schedules me for all kinds of tests to establish a baseline. (Basically I am at high risk for multiple kinds of cancers, including the brain cancer my Mom passed from.) They searched for cancer everywhere.....I had ultrasounds of everything. I had to have an early colonoscopy and even had to see a dermatologist yesterday. I have a full body MRI in November. Most of my tests were in May including my 6 month breast MRI. Expecting that to be normal I was surprised to hear there was a suspicious enhancement of 6cm +.!!!!!!!! I was hoping it was benign breast tissue, but unfortunately is was not. At LEAST it is LCIS and is PRE-cancerous and contained. I am kinda in a whirlwind right now. I did break down and cry a few times.....am trying to just be present in each moment and grateful. Having this mutation doesn't mean I WILL die from Cancer of some kind. I am trying to look at each test in a positive way (lol.....kinda punny) knowing that finding cancer early is the best thing that I can do. Thanks for reading!!

Druanne- the headlights aren’t on 24/7, they just respond to cold and touch. Otherwise they’re very similar to before and are soft with little to no defined projection. On the bright side, if they come on in freezer section, I don’t feel it so I don’t “know it” unless I look down😂🤣😂 on the TP53 mutation, yes look at it positively. It just means you’re at higher risk and you have the heads up to be on the lookout to catch it early if it does happen.

Thanks so much helenlouise! Doing everything I can in advance to make it as easy as possible when the time comes.

Elijahgirl, so you are having PBMX because you tested positive for the Chek2 Gene mutation? You don’t have a cancer diagnosis at this time? Then will they be removing any lymph nodes at the time of your BMX? If they don’t remove any lymph nodes then you should have no issues with lymphedema.

I think the advantage of PBMX is that you are healthy. You are not dealing with a cancer diagnosis and SE of chemo or radiation. I believe you will do well thru this surgery.

Praying for miraculous results!