Advice About No Reconstruction for Mentally Handicapped Sister
Comments
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I’m so sorry your sister is dealing with this diagnosis.
My concern with reconstruction is that it feels painful for a little while and foreign for a long time. It's usually multiple steps/surgeries too. If she doesn't fully understand then I worry it will be constant torture for her.
I wonder if she can be flat and then if it bothers her the doctors could attempt reconstruction.
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Pingpong1953, I'm sorry to hear about your niece. My sister trusts me completely and relies on me for everything, big and small. I agree with you that, at this time, reconstruction would be too invasive for her.
MeToo14, I'm sorry to learn that your brother has Down Syndrome. All the best to him, your mom, and you. He and my sister have a lot in common such as not understanding money and teeth problems. Thank you for confirming that no reconstruction is the best option.
Cowgirl13, Thanks for your advice and your kind words.
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I found reconstruction brutal. If I could go back I would have gone flat. Each developmentally handicapped person is so individual in how they see the world. No one seems more qualified than you to ultimately know what your sister is up for. I think it was a great idea to come to this forum and hear our perspective and to discuss this with a social worker but I think you probably know the best course of action and ultimately will need to trust your gut.
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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
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Star2017, thanks for input. I agree with your suggestion that my sister try flat first. Blessings.
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This has not come up - are you receiving advice on the risk/benefit of a unilateral versus bilateral mastectomy?
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RachelCarter, I'm so sorry for you that you found reconstruction brutal. I don't want my sister to have to deal with anymore than the least invasive procedure and your negative experience says loud and clear, "no to reconstruction".
Zillsnot4me, I appreciate you sharing your experience and confirming that no reconstruction is best at this time. I will discuss the bandages with my sister. Hugs to you that your were a mother with young children going through a mastectomy. But praise God that you've had 5 years of no regrets and freedom!
Wildplaces, I'll look into unilateral versus bilateral. Thanks.
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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.
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Londa,
A word of caution - in most states Power of Attorney does not give you the right to make medical decisions, but to handle financial affairs. I believe you may need a Health Care Proxy - check with the social workers
I had a unilateral mx 6 years ago with no reconstruction It seemed like elective surgery to me and my body had been through enough - I very seldom wear the prosthetic - I am on the smaller side and can dress so it is not very noticeable Check out face book - there is a flat and fabulous group - you will get great info.
I have also worked with folks with disabilities for 30 + years. The more your sister can be involved - the better. A social worker can help you assess this and explain to your sister at a way she can understand. There are prosthetics and mastectomy bras that insurance will cover . This may help your sister with the adjustment.
There is so much to consider for those of us who can grasp the info - your sister is lucky to have you
Nel
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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.
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Personally I would not put her through reconstruction.. Even the simplest being implants is extra dr. visits and extra pain.. They tighten, they feel like they move sometimes, and they don't last forever, meaning more future surgery. Sometimes there is trouble right from the get go with infection, etc. I'm not saying this will all happen, but why put her through it. I'm speaking to you as the sister and legal guardian of a brother who is very similar to your sister. He does know the word cancer, and I pray he never gets it because he becomes so frightened by any illness. I've always vowed to do what is needed if treatable, but I would not do hard hard treatments or surgery if not good odds. I would not use the word cancer for him, I would just tell him he's ill and needs meds..He's going to be 50 this year, and I dread the day illness might hit. I took care of him for 10 years after our Mom passed, and he is now in a group home.. I'm their worst nightmare because I stay on top of everything.. I've worked in special ed for 25 years. By the way, you might want to become her legal guardian through the courts, or you can be told she is entitled to make her own descisions. I got guardianship immediately when he came to live with me... I would never ever allow the group home or the state to make his medical choices.
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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.
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Shetland Pony, I appreciate you thinking about my sister and while you're driving at that. This touched my heart.
Shetland Pony and Hapa, The BS said a lumpectomy is not the best option for my sister because she would then have to go straight to the radiation room, per the BS. The BS said she has other unidentified smaller growths/masses within the same the breast with the identified cancer tumor. A mastectomy will hopefully eliminate the need for radiation because all the cancerous growth(s)/mass(es) will be gone. HOWEVER, I will reach out to the BS to find out about IORT since this is the first I've heard of radiation during surgery. I'll allow him to explain why IORT could or could not be an option. Thank you for the suggestion.
Nel, God bless you for your 30 years of work with the disabled. Thank you for the caution about the extent of Power of Attorney. My Power of Attorney document contains several sections including granting me Power of Attorney for health care proxy/medical decisions, HIPPA, advanced directives, real estate, investments, etc. The attorney who drafted the document was quite thorough and costly (LOL). The POA document has been accepted in its entirety by every medical practice I've dealt with regarding my sister's health care. I've reached out to social workers to assist in helping my sister understand her illness. Hopefully after the holidays, we'll be able to meet with someone. I appreciate you sharing your positive experience with no reconstruction.
Alice Bastable, We're in a large metropolitan area. If we--and I hope we don't have to-- do radiation, I will find a center that is used to special needs patients. The BS said his center's radiation department requires patients to sit still. I like your game suggestion because if I overreact or am too serious (crying), she feeds off of me and gets concerned. Not upset because she really doesn't react strongly too very many things. Thanks for your reply and blessings to you on your journey to wellness.
Mittmott, Thank you for sharing your thoughts about the risks of reconstruction. I'm sorry to hear about your brother who sounds exactly like my sister. In fact our experiences as siblings of the mentally handicapped are very similar. We must be our siblings advocate. The lawyer who drafted my Power of Attorney for my sister included extensive language including that I have the power to make all medical decisions. He felt the POA covered all guardianship issues. So far those documents haven't been challenged by any medical authority. If I ever have problems I will pursue guardianship like you have obtained. God bless you for your work with special ed and for caring for your brother.
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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?
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Hello Shetland Pony, The BS is not proposing a lumpectomy because of the other areas of concern in addition to the identified tumor. A lumpectomy would make the radiation treatment room mandatory. The BS is recommending mastectomy to ensure that all the cancer and possible cancer is removed. Yes, the cancer center has a team of specialists to review my sister's case. Because of the holiday, I was unable to speak with the BS about IORT but will discuss it with him next week. I will do some reading on the tumor board. Blessings.
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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.
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Hiking Lady, Thank you for your input confirming my decision to avoid reconstruction for my sister and for sharing your own experiences. Blessings to you on your journey to restored health.
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