Anyone have sensation-sparing breast reconstruction?

Hi @janeullmann1, I can help. See the videos with Mayo experts talking about sensation-sparing reconstruction here:
- Videos about Breast Cancer Surgery from Mayo Experts
https://connect.mayoclinic.org/discussion/videos-about-breast-cancer-surgery-from-mayo-experts/

Hello,
I had nerve sparing, nipple sparing double mastectomy with reconstruction with Dr. V in January. I will be replacing the expanders with implants later this year. I am 49 was surprised by the cancer in both sides without any family history or gene. I was so happy for the nerve-sparing option, and was told from the start that it is experimental and might not work. It does not require anything extra of the patient as far as the surgery or recovery, but requires the willingness and knowledge of the surgeon. I didn't see a reason not to, and went into it with the mindset that if it worked, wonderful, and if it didn't, that was fine, too. Eight months out, I have sensation on a relatively small area of each side, but let me say, when I first realized I could feel those areas, I was absolutely thrilled. I'm still thrilled! It was a bright spot in the whole cancer episode. Dr. V and her team are absolutely wonderful!

Thanks for sending these. I have seen all these videos. I had a consult at Mayo recently. I was disappointed to learn that Mayo's practice is to place tissue expanders instead of doing direct implants the day of surgery. Doctors in the Twin Cities will do same-day implants but do not do sensation-sparing. Doctors at Mayo will do sensation-sparing but not same day implants. This is very disappointing for me. To have months of tissue expander maintenance followed by yet another surgical procedure to place the implants is very upsetting for me.

What has your tissue expander experience been like? How are your activities affected, as far as exercise, pain, inconvenience, etc? It sounds like you will have the expanders in for quite some time. What will the process for getting the implants be like, as far as surgical time and type of incision to replace?

Hello Jane,
I have to admit, by the time I scheduled my mastectomy, I had 5 biopsies, three of which were cancer and the others atypia, so I was in a hurry to make decisions and get the cancer out. When I found out I had to do the double mastectomy, I jumped at the chance to have the nerve sparing option. I was really scared to get the drains out and was so relieved it truly did not hurt at all. Next, I was scared to look the first time those bandages came off. I did cry a little at that point, it's a lot to process. But I was so happy and amazed as everything healed. I did not have chemo or radiation, which I'm sure would make a difference.

I healed slowly, and had to have a very short second surgery to close up a part that wouldn't heal (which was a quick, easy surgery). Given this experience, I would think if they had done the whole reconstruction at once without the expanders, I would have had more issues. I was back to work after two months (I also had an oophorectomy during that time to be on an AI). I haven't had to take any more time off. My work involves lifting heavy boxes of paper, and I was careful. If I felt I overexerted the incisions, I stopped. I was able to do my work as long as I was sensible. Everyone is different, so make sure you listen to your body and rest when needed (easier said than done!). The expanders don't bother me. At times, it is either my scars or the expanders that get itchy, but it doesn't bother me a lot. I would be fine living like this. Once the incisions were healed, they recommended SPF scar cream (I use Mederma) on the scars, which I do daily. They have lightened considerably. I didn't know sun could go through clothing and darken the scars.

I have most of my discomfort and fatigue from what I'm guess is the letrozole. The expanders have not affected my activities. I go about life as if they are part of me. I wear normal bras (no underwires) and they fit! I only have a zing of pain when I overdo lifting, but everything is so nicely healed now. When I had the saline fills (I had 3), I was giddy happy because the inside of my arms could feel the sides of my chest again. I was and still am a size B. I could not feel anything during the saline fills, but I'm guessing others who have more feeling from nerve sparing might feel it more. After each fill, I was elated at the result.

I am waiting for the implant surgery solely for my FMLA time to kick in again.

The implant surgery doesn't worry me since going through the mastectomy. I know the surgery for the implants is much shorter than the mastectomy. They go through the incisions under the breasts. I cannot even see those looking straight on. I was told 4-6 weeks for healing after the surgery, with the same restrictions as before (reading and television watching only).

I am SO glad I did this now...but I won't say I didn't have second thoughts after the mastectomy. I felt a bit selfish for doing the reconstruction because of the work time off, but living my life today, I feel so grateful and grateful for Dr. V and her team. They really take care of you, and walk through it with you. You are in good hands. Please let me know if I can help answer anything. I wish you all the best.

Thank you for sharing your experience. I am mulling the options and weighing pros and cons of each procedure. I'm having another consult with a surgeon next week. I'm praying that by God's grace I'll make a decision and have no regrets with the result later.

You are very wise for weighing all of your options. If I could share one more thing, whatever you decide, give yourself space and time after the procedure to adjust. Please let me know how you are doing.