Experience & personal recommendations re: expanders/implants post DMX w upcoming radiation & potential delayed DIEP

Hi Holly,

I was preventative dmx with immediate DIEP at KU. I can't talk about the radiation side but I would say DIEP is totally worth it. I am open to any question you have - the first 5 days are hard but completely do-able. Who is your surgeon? 

Jenny

Hi Holly! 

I had a nipple sparing DMX back in early October and opted for reconstruction with silicone implants. During the surgery, they installed expanders, which are sutured to your chest wall. I came out of surgery with them just slightly inflated with air, but still very "flat" which I liked because it didn't add additional pressure to the incisions (like straight to implant would have). I also liked that having the expanders allowed me to fine tune my size before reconstruction. They started scheduling expander fills a month after my DMX. That said- the expanders are simply uncomfortable all the time. They look crazy, they are rock hard, they pull on the sutures when you move in certain ways... but they are a means to an end!

I chose expanders first in order to give my tissue the best chance at healing without added pressure of heavy implants. 
I chose implants over DIEP just because of the downtime that the DIEP surgery entails (my work is super busy!)
I chose silicone implants because they have less rippling at the upper pole (which unfortunately happens often due to all of the tissue being gone.)
I do not have the BRCA2 gene, but I do not regret my nipple sparing for one moment. They no longer have feeling, but they still work and just make me feel a bit more whole. 

P.S- I am with KU as well! You are in the best hands. My surgical team was Dr. Wagner & Dr. Farmer. They have been pure gold. 

Hope some of that helps!

Hi Holly,

First off, you don't ever have to apologize in this group. We are here to hold each other up. You can be all over the place or laser-focused. We get it and want to help!

I was BRCA negative, so I can't answer that, but I had nipple sparing double mastectomies and chose to have implants instead of the DIEP.

My cancer diagnosis was DCIS in 2013. The cancer was like sand granules peppered throughout both breasts. I told my surgeon, also from KU, "If you can get clear margins, keep the nipples. If you can't, take them." I'm glad I chose that. She achieved clear margins. I will say, I go annually to Breast Cancer Survivorship at KU for an ultrasound and see the NP. I do hold my breath until the technician comes back and says, "OK, you're good to go!' It's in the back of my head once a year.

I chose impants rather than the DIEP for a couple of reasons. I understood at that time that the recovery from the DIEP was lengthy. Things may have changed. I was told I would spend at least a week in the burn unit to make sure nothing became infected. My plastic surgeon also said that if I were prone to gaining and losing weight, that wouldn't be great. The fat removed from my body could return in other spots...she said it could look like globs of fat in other areas...ankles, stomach, etc. I am prone to weight loss and gain, so I said, No, thank you.

At that time, I had spacers placed in the breast cavity, and each week, they added saline solution to stretch the skin. The spacers were as hard as rocks, making it difficult to lie flat or on my side. I had a second surgery to replace the spacers with saline implants. I love the implants. My breasts sag a little (gravity), but are perkier than those of others my age. They also feel normal, squishy. Unfortunately, I don't have any feeling in my breasts. The nipples are there, but I can't feel a thing.

This was my experience almost 13 years ago. I know things have changed. I'm happy to chat or answer more questions for you. 

Take care of yourself. Breathe. Trust yourself. Sending gentle hugs to you!

Hi @holly,

I had a double mastectomy at KU that was nipple sparing, and I had tissue expanders to prepare for implants. I didn’t have chemo or radiation.

It has been over a year since my reconstructive surgery, and I don’t have any regrets.

I really trusted and appreciated my team at KU.

Good luck!

Hi  @holly For what its worth I am scheduled for my NSM to expanders at KU next week as well.  I am BRCA2+.  My surgery will be risk-reducing due to the mutation rather than for cancer treatment however. I am planning on implants after the expanders are removed and I've healed.  I have also spent time wondering if keeping the nipples is the best choice given the mutation, but for me, I feel like the benefit of keeping them outweighs the risk at this time in my life.  Wishing you the best of luck.  Stay in touch!  We can make it through the healing stuff together.  🙂 

• I had a nipple sparing bilateral mastectomy in 2017 at KU. I had expanders placed and had implants  about 6 weeks later. Im negative for BRCA gene, but my breast surgeon did tell me that my nipples  would possibly be a spot where my cancer could come back. 
  jump ahead to my 5 year “cancer free” anniversary and the time when Dr ODEA moved me to the survivor clinic in 2022.
• I went in for a CT scan because I had IBS issues and the image found that my cancer had spread to my pelvic bone. I’m now Stage 4 Metastatic THRIVER.
• i would highly recommend getting periodic full body scans after you have finished your treatments.
• I don’t want to freak you out, but I am upset that during those 5 years of monthly checkups with Oncology, scans were never suggested!
• I wish you luck. Make sure you have a recliner to sleep in. If you don’t, contact Peace Out Cancer. They give out recliners free of charge that you can use during your recovery. I volunteer, it’s a wonderful organization!

Thanks for sharing. Thinking of you and wishing you complete healing!