Sensation in reconstructed breasts

[wuhanmom]

I am considering bilateral prophylactic mastectomy (nipple sparing) with DIEP flap reconstruction. What sensation, if any, would I retain in my nipples and breasts after surgery?

[CCF-RN,MSN-JS]

Dear wuhanmom:  A DIEP flap reconstruction refers to use of the tissue from the woman's lower abdomen without sacrficing muscle to reconstruct the breast. Patients will not recover normal sensation in the breast, but may regain some feeling over time.  Be sure to discuss this issue with your plastic surgeon.

[vermontgirlII]

Why are you considering this, if I may ask??

[wuhanmom]

I have a very strong family history of breast cancer (mother age 49, sister age 46, maternal great-aunt age 47), a personal history of atypical ductal hyperplasia, and very dense breasts.  The Gail model gives my lifetime risk of breast cancer as >60 %. I had to discontinue tamoxifen for chemoprevention due to side effect of bilateral cataracts.

[boninclyde]

Again I know I sound like a rerun but try going to the breastcancer.org site. Their discussion board is great. I may be wrong but I don't think many women here have had this particular procedure.

[carme]

I think you're in the wrong forum about reconstruction. The nurse will tell you so if it's so.

But for your info...

I had bilateral mastectomies with immediate expanders implanted. Unfortunately, my hospital sent me home with a pseudomonas infection that almost killed me. So, I lost the expanders and chose not to try again.

Most of my chest is still numb, 3 years later, as are my armpits.

Maybe someone who has had diep reconstruction will answer you.

My sister had bilateral tram flaps with many complications.

My decision to have bilaterals started out as prophylactic too, since I have a very strong family history and the BRCA2 mutation and an area of microcalcifications that was suspicious.

I had good insurance, DID NOT LET THEM KNOW I HAVE THE BRCA2 MUTATION, since the law does not protect us yet! My surgeon got the approval based on family history. I was once rejected for insurance coverage by Kaiser because of my family history...So you all need to keep this kind of info in check.

Good luck, good life...fight this horrible disease with everything you've got. I believe you are on the right path with prophylactic, I have had 6 family members and myself have this disease...2 of us are still alive.

[rkmsim]

I had reconstruction with DIEP.  The results are great!  You can get a lot of information from www.facingourrisk.org which FORCE, an organization that deals with hereditary breast and ovarian cancer.  Many women who post there have had DIEP reconstruction.  In my case, most of my breasts are numb.  My nipples are reconstructed as well so there is no sensation there either.  At first it felt kind of wierd but now I hardly notice it at all anymore.  Check out that website I listed and you will get as much information as you want.  You will also meet a great group of women.

[ly3]

I had a nipple-sparing mastectomy tram flap at the Cleveland Clinic (see my post under reconstruction 5/10/2004) and, after nearly 3 years I can say that I do have sensation in the nipple and some in the breast.  The nipple reacts to the touch, and to cold air, but can't feel an ice cube or warm shower water!  It was like this right after surgery.  My surgeon said nothing special was done, but that the nerves will sometimes grow back, and I do feel little zaps periodically--it's kind of wierd.  The breast feeling isn't numb, but isn't the same as the real one either.  I really don't notice the lack of feeling much. Another patient of the same surgeon told me that she did have feeling in her tram breast, especially when her new nipple was being tatooed (her own couldn't be saved).  A friend recently had the Diep flap done in S.C. and has been very pleased with her results.  CC doesn't offer the Diep, or I would have done that.  I have no regrets with the choice I made, and I look pretty close to perfect.  Also by the way, the numbness in my armpit and inside arm from the surgeries and sentinal node biopsy, is pretty much gone.  I was told that feeling wouldn't return at all, but aside from occasional tightness and itching, it feels normal!