TNBC DIEP/possible prophylactic

HeidiS

Hi!  New to the boards, so sorry if there's already a thread on this.  I was dx Nov. '07, age 36, kids ages 2 & 4 at the time.  FEC, unilat mx, rad, 12weeks of Taxol.  Chest wall became adhered.  Lymphedema w/in the year.  I've been seeing a PT for the adhesions and an OT for lymph. ever since.  I've been relying on the Amoena contact prosthetic.  I'm very strongly leaning towards doing the DIEP flap with Dr. Buescher at KU (bonus- she has burn experience).  I'd like to do a prophylactic on my "good" side since I'm fibrocystic and constantly worrying about it.  Mamms/sonos show I'm clear on that side, but I'm not sure how much faith I put in them.  The doc said (last yr) that I didn't have enough ab fat to do both sides.  I plan to talk with her more about another donor site, but until then...has anyone else out there done a prophylactic for piece of mind? (I don't have any positives w/dx - ER/PR-, Her2-, BRCA1&2- & family history too distant to count).  If you did a proph. are you more relaxed now?  What about DIEP?  I've seen a couple up close that were still within a year of surgery and they lookk great, but what about2,5,10 years down the road or more?  Thoughts?  I'd like to deal with it fairly soon and hopefully move on.  Thanks for your input!

bak94

Sorry I do not have any info for you, but I think you should go for it if that is what you want. I hope to do diep a year after treatment, my doc wants me to wait that long. I haven't had bmx yet, probably in about 3 months, that is when I am done with chemo. I had bc 8 years ago, had lumpectomy and now it is in my opposite breast, so I understand your concern. I have seen a few pictures of diep, but not many. I wish you luck with making your decision!

epgnyc

Hi Heidi.  I had a double mastectomy in March '11 (right one was prophylactic) and I'm very happy with my decision.  This was my second time with breast cancer, both triple negative and both in the left breast.  But my most recent biopsy (2 years earlier) was in the right breast.  There was no way I could live comfortably with what I felt was a ticking time bomb.  I decided on no reconstruction (I'm 64 and that played into my decision), but that's a different story.  I'd talk to your plastic surgeon as you might be more happy doing the prophylactic DIEP as well, if it's possible.  The decision is of course yours, but mine was great.  .

brca1babe

I had a free flap TRAM which is like a DIEP but they take a small pc of the muscle if the blood vessels in the subcutaneous tissue are no sufficient.

anyway, I am very happy with my decision to get a BMX and free flap recon. I am BRCA1, so a BMX was a no-brainer.

remember that TN is very tricky - it is the most likely to pop up between mammography, so when it comes to TN, screening is imperfect... that may be a reason enough for a MX for some.  my TN popped up in between a mammogram and breast MRI 6 months apart.

autologous tissue recon feels like you - it is warm, I have sensation (different than before for sure, but it feels like me, I feel touch etc) and recovery was really not bad at all.  The lifting restrictions for 8 weeks was the hardest, but I felt fine and was off narcotics after a week.

if you don't have enough fat in your tummy, there are other procedures where they take fat from the butt or back that might work.  there is a good book that explains it all - the breast reconstruction guidebook by kathy steligo.

good luck!

cylander

Hi Heidi. I just had BMX and DIEP reconstruction August 3. I am TN and BRCA1+. I was first diagnosed in 2008 on right side, had lumpectomy, chemo, rads. (Didn't know about BRCA yet.) In June 2011, mammogram found new primary in left breast. Although my right breast currently had no cancer (post surgery pathology confirmed this), it was a clear choice to have it removed as well. With BRCA1+ staus, it is very common to have a new primary show up in the other breast. No one can say if it is the right thing to do but you, but yes, I feel better having done both. (Of course my sitaution is different since I had cancer in both breasts at different times.)

In terms of the DIEP, I didn't have a lot of tummy fat either, but my BS did a great job. (At least it looks that way so far-it's only been 11 days!) I was a B before, and a fuller B now-though it might be the swelling. I'm also actually more symmetrical now than before-from the result of my prior right side lumpectomy. I do feel numb, and they are firm to the touch, but they are starting to look pretty good-even with the bruising and tape over the scars. It is a hard surgery, but if everything goes well, most women are happy with the results. It's more recovery time up front, but in the long run, there seems to be less problems for most women than with implants. 

Since I just had the surgery and it's all fresh in my mind, feel free to PM me with any questions.