+ BRCA1. No cancer dx but Q's about mastectomy.

shelleydf73

Hi, I am new to the page.  38 y/o.  I was dx with BRCA1 (no cancer yet) and had a total hysterectomy 6 weeks ago.  Now I am preparing to have a bilateral mastectomy with reconstructive surgery.  My appointments are not for another month but I need info.  How long is hospital stay?  Will I have drains?  Can the dr do reconstructive surgery at same time or is it separate surgeries?  I am very small right now, not even a 32A.  I have no idea what to expect and the process.  And is a chest expander removed then the implant put in?  Is a chest expander like an implant, sack, that is gradually made larger to stretch the skin?  Sorry for so many questions but my mind is boggled.

Lisa65inNY

Hi shelleyd,

First off, take a deep breath.  You have time to make decisions and learn about your options. I know how the mind can be overwhelmd by all of this.  I found out my BRCA status in February and just had my ooph/hysterectomy 5 days ago.  I, too, do not yet have a cancer diagnosis but feel it is inevitable that I will and am looking at mastectomy with immediate recon in the very near future.

If you haven't already, I would recommend the Breast Reconstruction Guidebook.  I ordered it through Amazon and it came within 2 days.  The book discusses the reconstruction options - those being the flap reconstruction (microsurgery, where tissue is taken from another donor location - abdomen, back, etc.); the breast implant with tissue expanders, and the one-step "direct to" implant which I am considering for myself this fall.  Most reconstructions are done at the time of mastectomy.

I would also highly recommend the FORCE website (www.facingourrisk.org) which is a support site for women with BRCA.  There is a TON of information available there that I believe you will find helpful.

Good luck!!  

dlebleu

Hi Shelley! I'm so sorry you have to do this! I"m a BRAC1+ girl as is my twin (who is also BRAC1 AND BRAC2). I was dx with Stage 2 cancer at 39 - my twin was only 33 at her dx. I did a bilateral mx with reconstruction - tissue expanders and then implants. My sister had a lumpectomy at the time of her dx but then after discovering about the genetic mutation after my experience, she did the full prophylactic bilateral mx with reconstrcution. It's a crazy thing and you are going to be great - it's so hard not knowing what to expect.

Drains are all but a certainty (confirm w your doctor but likely) - I'm the inventor of a pocket to hold drains - www.pink-pockets.com  and everyone who uses these LOVES them. The best, most convenient, affordable way to deal with drains. I wore them myself after a 2nd reconstruction surgery.

The tissue expanders were a bit uncomfortable. I had mine for 3 months after my last 'expansion' which didn't really hurt  - just a bit achey after each skin expansion. The expanders are very stiff and do not move - the replacement with silicone implants was a huge relief. The implants they have these days reall are amazing. Don't believe all the scare tactics some people have about implants. They are v safe and effective. My twin had to have part of her surgery using the DIEP flap procedure since her skin had been radiated and this made things very complicated.

Breast cancer.org is a great way to find out a lot of information and people just like you and me. Best wishes!

mrsgray317

Hi Shelley,

I am recoveriing from TRAM flap reconstruction after a prophyllactic bilateral mastectomy.  I did not have a cancer diagnosis, but did have atypical ductal hyperplasia.  ADH is significant for me because my family has had three generations of women with breast cancer.  I am a medical lab tech and I spoke to one of the pathologists I work with.  He was of the opinion that my future was not IF I got bc, but WHEN I got BC.  I met with a breast surgeon at Dartmouth and she agreed that doing the pbmx and TRAM were a good fit for me given all of the circumstances.  I won't sugar coat it-this is not an easy surgery to recover from.  I had two additional surgeries-one to clean out a small infection in my right breast and one to do two small skin grafts for skin that didn;t survive the surgery.  Both of those situations are not uncommon with the TRAM.  I am now adjusting to the new normal for my body.  My rectus abdominus muscle was used to construct my new breasts so my core is weak and needs reconditioing.  The flip side is this:  my bs and ps used a skin and nipple sparing technique.  My breasts are still a bit swollen and misshapen, but when they are completely healed, they will look very much like what I had before.  I have a cousin and a co-worker who  have also had this done.  Both are well-healed and happy that they had it done.  They are also healthy and active-so I am patiently working at my recovery to get there too. 

There are those that will say you don't need to do anything if you don't have cancer.  This is a very private decision.  Only you know what you can live with and what you can't.  I was ready to be done with repeat mammos, ultrasounds and biopsies.  My mom is a two time survivor.  Her diagnoses were 11 years apart-she says she wishes she had done the bilateral at her first diagnosis.

I hope this is helpful for you.  Best wishes and peaceful thoughts,

Patti

LISAMG

How long is hospital stay? 2 nites in the hospital is standard of care

 Will I have drains? yes, drains will be placed on each side of the expanders and usually get pulled 7-10 days post op

 Can the dr do reconstructive surgery at same time or is it separate surgeries? Immediate reconstruction is always preferred for optimal results, especially if this is risk reducing surgery .

 And is a chest expander removed then the implant put in? usually the expander is left in for approx 12 weeks for healing and expansion to occur, then the permanent  saline or silicone implants are placed at the time of the 2nd surgery.

  Is a chest expander like an implant, sack, that is gradually made larger to stretch the skin? yes, the expander acts as a temporary implant device that is filled gradually to stretch the pectoralis muscle by filling it to the appropriate size for placement of the implant thru a port under the skin. expanders are hard, uncomfortable and sometimes painful, but know they are only temporary and do NOT look or feel at all like implants.

are u considering skin sparing and/or nipple sparing? seek a few consults to decide what type of reconstruction is best for you. find surgeons that work together alot and not sporadically for a positive outcome.  best wishes!