recently diagnosed-looking for info on nerve-preserving (or sensation-preserving) mastectomy
Hello All-
I was diagnosed a few weeks ago- Stage 1, triple negative breast cancer . I will be having my nipple sparing mastectomy in a week and was leaning towards bilateral until the PS casually mentioned the loss of sensation. I'm like "what!?!? you need to START with that in our convo, not end with it!" he said they is an experimental procedure trying to relink the nerve from the nipple, but insurance rarely covers it, I might not feel anything until 2 yrs after, and the increase of sensation is only 20%. I said hell yes I still want it! I'm 57, not dead!
Anyone else have this procedure? Because now my thought is to maybe get a single mastectomy instead of double, if this procedure really hasn't proven beneficial, My surgeon said there is no survival advantage related to your diagnosed cancer, so the choice is mine
Thanks in advance!
Comments
-
I'd had a nipple-sparing, sensation-sparing SMX back in 2021, when the sensation-sparing mastectomies were really new and mostly being done just by the Drs. Peled (San Francisco), and only a handful of other surgeons. The goal is to either avoid severe damage to the nerves during the mastectomy process, or to use nerve-grafts if the nerves DO get cut. I'd had my SMX done at Stanford, and luckily my insurance provider at that time covered my mastectomy, but in my case I didn't need nerve-grafting done, as my surgeons were able to avoid severing my nerves.
For the first few months post-SMX, I was mostly numb, but over the next 2 years I did notice gradual, but inconsistent gains in sensation. Now, at almost 5 years out, my SMX breast has irregular feeling. There are spots that are numb, like how it feels when my foot falls asleep, interspersed with spots that are almost normal sensation. Most days my nipple area is numb, but there HAVE BEEN days it is surprisingly sensitive, so for that I'm grateful.
I do have a friend who had her bilateral mastectomy done with nerve-grafting done on her cancer-side, and she did eventually get nearly full sensation back.
The resensation website is helpful in finding surgeons who do these nerve-sparing or nerve-grafting mastectomies: www.resensation.com
3 -
ammie- thanks for your input! very good info
1 -
@bunnymom7869 ~ of course! I'm so glad to help. I wish more women knew about this mastectomy option! I'd had to consult with FOUR reconstructive surgeons before I finally found someone who said they had experience doing this, and that they had patients who reported successfully getting some feeling back.
If any surgeon tells you that there's little chance of getting your sensation back, then that's a sign they really don't have much experience doing this procedure!
0 -
Interesting. My plastic surgeon asked if i was interested, but i said no. I like it has had success.
0 -
Hi @bunnymom7869!
We wanted to check in and see how you're doing. Were you able to make a decision about your surgery and the nerve-preserving procedure?
You may also be interested in joining our July Surgery Support Group thread, where members are sharing updates and supporting each other through surgery and recovery.
When you have time, please let us know how everything is going.
The Mods
0
