Sparing mastectomy/Diep - What was your recommended follow-up?

Hi Sandyjr, I had (multifocal) DCIS stage 0 with a mastectomy and DIEP reconstruction in 2019. I was told ( and had) mamo and ultrasound only on the opposite side from mastectomy.

I am currently doing neoadjuvent (sp?) chemo and then will have either skin sparing or skin/nipple sparing double mastectomy. I was told that breast exams and blood work would be the only routine follow up care... if a lump or something suspicious the ultrasound and mri. I am doctoring with Mayo.

I am one of 4 sisters with CHEK2. My oldest sister
Had Breast cancer at 40 and at 67. She didn’t have the option at 40 for Double Mastectomy. The at age
68 She got papillary Thyroid cancer. I got Papillaey
Thyroid Cancer in 2015 at age 64. After much counseling by Mayo clinic Gene Mutation for breast, Thyroid and Colon and now Kidneys. I opted for Prophylactic Bilateral Mastectomies. They remove areola and nipples and then had Diep Flap reconstruction 9 1/2 hours with Mayo breast surgeon and two Micro Plastic surgeons. I did this because there was no testing later for breasts, but I did not have breast cancer. Make sure you get routine colonoscopy, Thyroid scans, and Kidneys
which i am dealing with now. Make sure the surgeons you have especially the micro Plastic Surgeons have done this many times. It is not an easy surgery by any means. I was in IC U for 5 days. My results were great but have heard of many
Diep Flaps failing. God Bless

As you said, you must have an excellent plastic surgeon. When I first made the decision to have the mastectomy/diep flap, I went to a well respected surgeon...what a mistake! My thinking is that she does what is easiest and more $$$$ for her and she was blunt and crude. She also sent you to her preferred plastic surgeon. I was beside myself because I did not want implants and she told me I was too old for diep flap. Fortunately I had attended a lecture given by a plastic surgeon. I liked that he seemed so focused and really took pride in his work. He brought several before and after pictures. I determined that I could not keep trying to find a breast surgeon for the mastectomy...it was going to be more frustration, so I decided to make an appointment with the plastic surgeon from the lecture. Thank heavens. He asked me what I wanted and I told him nipple sparing mastectomies with diep flap reconstruction. He told me that he would not do nipple sparing because both breasts has been treated with radiation which can cause problems because of damage to the skin, but he would do skin sparing mastectomy and my age was not a problem for him. Wonderful! He had said at the lecture that he does not do any surgery that he knows will have a problem. That was reassuring. So he advised me of a breast surgeon and he and his associate who is also excellent did the reconstruction. This whole experience has been easy and practically stress free. The only bump in the road was the fierce headache I had after the surgery! Other than that I had no pain and only mild discomfort. I was back on my feet about 75% within three weeks. This has been one of the easiest things I have ever done. I had revision of the nipple area a couple of weeks ago. Next, he will make the nipples and then tattooing after that and I will be good to go. I am glad I made this decision and I am very glad that I shopped around and found excellent doctors. My advice is to do your research and determine what you want and then find an excellent plastic surgeon and he/she can hook you up with a surgeon that they work with who would have to be excellent as well. They would not send you to a sloppy doctor. One thing, this was not cancer surgery for me, so time was not a factor. My first cancer surgery was in 2007 and the second was in 2018. My reason was because I found that I had the CHEK2 mutation. I knew mentally that another cancer would put me over the edge. Don’t just go with a surgeon or oncologist that someone told you about. Check them out. The doctors make a huge difference in your experience and recovery.

So happy you had a good experience My micro surgeons. We’re head plastic micro surgeons at Mayo Jacksonville. I was told not to keep areola and nipples do to possible cancer cells left on them. I was 64 and didn’t want nipples because i can go without bra. My daughter in law was going thru Bilateral Mastectomies and just got tattoo. turned out beautiful and looks just like she has nipples. Don’t know i’ll go there yet. Make sure you screen for other CHEK2 CANCERS they seem to keep coming. Thyroid most common, colonoscopy a must and now i’m dealing with Kidney Issue. Prayers for you

I had diep reconstruction in July. Since then I have noticed a few stray hairs around my and the PS suggested laser hair removal before nipple tattoos. Is it hugely expensive and does insurance ever pay for it (Medicare or BCBS)? So far they have paid for everything involved with the reconstruction.

Hi @sandyjr, Your best option is to contact your insurance company to determine if they cover that specific medical code considering the diep reconstruction. You will notice that I moved your question over to your previous discussion regarding your reconstruction so that it can ask the members who participated in the last conversation and so they can respond to one post. You will notice that this will bring your conversation to the top of the group discussions so that the most recent comment stays relevant.

Have you been able to contact either insurance to discuss with them the charges?

So far, the dermatologist I went to insists it is cosmetic even though it is for reconstruction. Since there is a scant amount of hair, I just may forget it. She grudgingly said she would submit it to insurance, but I figure she won’t use the right codes and it will be denied. Also, I do not know if Medicare would cover it. My BCBS policy might. It is not a supplement with Medicare. I kept my original policy when I retired. It will be interesting to see if anyone responds. For me, I don’t think it is cosmetic. I wonder how the Dr would feel if the tables were turned. It’s all about the $$$$$$.

Hello @betsyk.

Did your surgeon offer you lumpectomy and mastectomy? How did you choose?

It was a fairly easy decision as I had three locations of DCIS spread out so best cosmetic result would be a mastectomy with reconstruction. My breast surgeon did give me the option of a lumpectomy with radiation. I also, felt that for me, a mastectomy would give me best possible long term outcome. I had breast cancer 25+ years earlier. This was a new primary. I hope this helps