Advice About No Reconstruction for Mentally Handicapped Sister

I wasn't interested in recon because I was already small and my DD was a year old and learning to walk. I didn't want anymore surgeries to prevent me from holding her. Treatment was hard enough.

I rarely have regrets and it's been five years. Lots of freedom. I did see a PS but it was going to be lots of surgeries and recoveries and no guarantee. Everyone is different.

My son was 4 at the time. We told him I had a booboo and I would have a scar. A family friend showed me her chest not long after my diagnosis. She was a year out and the scar looked like a white crayon. It wasn't disturbing and I was grateful.

Unfortunately we forgot to tell my son about the bandages. We just focused on the scar. He didn't talk for a few days then started telling everyone about mommy - her square bandages, the boo boos and my scarf (scar).

I would involve a professional just so you don't skip an important step like bandages! My radiation room was fairly big but you are alone during the actual zapping but it's over quickly. Maybe you could tour the facilities With and without her. We have both big university type and small neighborhoods

This has not come up - are you receiving advice on the risk/benefit of a unilateral versus bilateral mastectomy?

While I was driving today I had a new idea about your sister's plan, Londa. What about a lumpectomy with intraoperative radiation? A lumpectomy is a fairly easy surgery and recovery compared with mastectomy, and of course preserves the breast. Then instead of five or six weeks of daily radiation sessions, they could do the intraoperative radiation procedure while she is still under anesthesia. Not all facilities offer this, so it may not have been suggested as an option. If insurance has a problem with it her docs can make a good case for it given her disability.

There is a page about IORT here on BCO. Call the NCCN centers nearest you to see if they offer it, and then make an appointment to find out if they think your sister is a good candidate.

One thing that crossed my mind this morning while I was getting zapped was to ask if your hospital is a large urban one with up-to-date facilities, or are you in a smaller town with just the basics? If it's a large hospital with a good cancer center, it's quite possible the radiation department has dealt with this situation before. You might want to at least discuss it with a radiologist and some of the team before assuming they couldn't cope with your sister's needs. The little lights that flicker on the walls and other places in the room might actually entertain her and hold her interest. Where I go, they don't use a torso mold, but the positions are all calibrated, and I am given a soft plastic ring to hold with both hands during the very short treatment. I can see how the lights and ring could be turned into a simple game for her if necessary.

Would your sister be a candidate for lumpectomy + IORT (intraoperative radiation therapy)? This is where they deliver a very localized, one-time dose of radiation right after the lump is removed, in the operating room. It seems like a good solution for her, though you may have to look around for a place that can deliver IORT. I don't know how old your sister is but I think it is usually reserved for older women which may be why it hasn't been recommended already (another reason why it may not have been recommended is that doctors tend to just not mention options they don't have in house, which in my opinion is negligent but seems to be the norm). I think it is slightly less effective than traditional radiation, but in her case it may be worth the risk.

IORT would be partial rather than whole breast radiation, treating the tumor bed, the most common site for in-breast recurrence. If there are other areas of concern in the breast, I think you would certainly need to know what they are before proceeding with lumpectomy. Was the BS proposing to leave undiagnosed areas of concern and give whole breast radiation, hoping that if it were more cancer, that would treat it? I would not feel good about that. Could they not be biopsied? If things are just too suspicious and can’t be clarified, mastectomy may be wise. If these areas are shown to be cysts or fibroadenomas then I would still talk to the tumor board about whether lumpectomy plus IORT could be a good plan. Does the facility your sister goes to have a tumor board where surgeon, radiation oncologist, medical oncologist, pathologist, and social worker meet to discuss your sister’s case as a team?

Londa:

To add to the many good suggestions people have shared with you, I want to bring up the rehabilitation aspect. After any breast surgery, there's a lot of PT and OT that a patient has to do. Partly for healing, partly to regain range of motion/ ROM and strength, and also to prevent lymphedema or deal with it if there is any. Future possible lymphedema is an "unknown" before breast surgery.

During surgery, if there is extensive lymph node involvement, the excision of those lymph nodes (and whether they're positive or negative, and how many need to be excised) will affect healing, future prognosis and treatment decision, and also rehabilitation of that side's chest, shoulder and arm muscles. This is true whether there's reconstruction or not. This is one more reason to Go Flat and not have reconstruction. All of those rehabilitation things were challenging for me, but for your sister, they'll be even more challenging. She'll need someone (a PT) guiding all recovery of muscle strength and ROM no matter what. Going through that twice to do reconstruction would be 200% the challenge of Going Flat.

Warm wishes to you and to your sister, as you make these tough decisions and gather information for her good care. You are clearly a wonderful and loving advocate for your sister.