Advice About No Reconstruction for Mentally Handicapped Sister

Londa

Hello,

My mildly mentally handicapped sister was recently diagnosed with breast cancer about a month ago. According to the biopsy, it has not spread to her lymph nodes. I've explained in simple terms to her that her breast is "sick" and I had to use the term cancer because of course the medical professionals will most certainly. She doesn't comprehend "cancer" and hasn't mentioned it since our initial discussion though we've gone for many medical visits to prepare for her mastectomy at the end of the month. She's as oblivious as ever which is probably a good thing. The doctors are optimistic that she will survive once the breast is removed.

She's 50, still "pure", has never worked, dated, married, doesn't desire friends/friendships/romantic relationships and has to be reminded about certain matters such as keeping a tidy appearance. She can't drive, doesn't use a computer, only makes a few calls on a flip phone and basically has a very simple life living in her own world. She does enjoy her day program that she attends with others like her. On the one hand I wonder if she'll be shocked at the physical change. But with her, you never know. Her comprehension stifles her reaction to things. She can't express emotions like I would. She's emotionless unless the subject is food/candy or the TVLand channel (old 60's/70's shows). Those things make her happy. Her mind is that of a 10 year old from the1950's, not how a ten year old is today. She's a sweet soul and it breaks my heart that she has cancer.

I'm power of attorney for her and it's my decision whether to do reconstruction. Our parents are deceased. I'm leaning towards no reconstruction because I want the least invasive path to wellness for her. I want the cancer removed and for her to be healthy again. I've come to this forum because you women have chosen to live without reconstruction. Will she be okay with no reconstruction? Please share your thoughts but be gentle because I'm already stressed out enough. Thanks and hugs to you for your own journey to wellness.

Veeder14

Hi Londa,

I'm sorry hear about your sister being diagnosed. You've got a difficult decision to make on her behalf. I can't give any advice about reconstruction but just wanted to say it's great your the power of attorney and looking out for her best interests.

Vslush

Londa,

So sorry you and your sister are going through this. She is so lucky to have you, and this is probably much harder on you since you understand what's actually going on. Also, I wanted to let you know there is a whole section here dedicated to caregivers and family that may be of great help and comfort for you.

Recon has the potential to cause complications (infection, more pain etc...) that aren't as likely with a BMX. Also, the recon process takes a while with visits and more surgeries, thus prolonging physical (and mental) healing.

In no way am I saying "no recon", I just wanted to make you aware of some of the things you may not have known or thought of in making this difficult decision.

Hugs and prayers are with you and your sister. Please know there's always someone here to answer questions, offer advice or just listen when you need to vent during this trying time.

Take care and good luck with your decision.

Hugs,

Vickki

Meow13

I can't imagine not having reconstruction but everyone is different. For me it was so emotionally healing I had mastectomy and DIEP. My results were excellent.

Racy

I am assuming from your post that your sister cannot have a lumpectomy?

If you are new to cancer, there are other things to consider also, such as whether adjuvent therapy will be recommended for your sister. This will depend on the stage, grade and other features of the cancer. Has she seen an oncologist about follow up treatment or has the surgeon discussed this? Do you have the biopsy report?

I just want to check you are getting all the information you need to make decisions, including information about whether a lumpectomy is feasible.

Best to you and your sister.

WC3

Londa:

I haven't had surgery yet but I have opted for reconstruction as I am in my 30s and want to keep my relationship options open. If we lived in a world where I would have a decent chance at attracting a potential husband flat chested, I would forgo reconstruction.

I imagine that is not applicable to your sister but I think it comes down to what would bother her more? Not having breasts or having breasts that have little to no sensation or feel strange?

Have you asked her about what she would like?

I have hypersensitivity issues and will be having natural reconstruction as opposed to implants because I can't have post pectoral implants, my skin is too thin for pre pectoral implants, I think the lack of sensation or sensation of the implant would be an issue for me and implants may require future replacement or removal.

The down side of natural reconstruction is it's much more invasive, the graft can fail, necessitating further surgery, there are more incisions that can get infected.

Icietla

Welcome, Londa. I am very sorry for your Sister's diagnosis and for the difficulties she and you must face because of it. We want to support the two of you through this difficult time and her adjustment to her cancer experience and your adjustment to her needs and yours through all this. She is very blessed to have you watching out for her well-being.

>> Her mind is that of a 10 year old from the1950's, not how a ten year old is today. <<

I do not understand this at all. If Beaver Cleaver is your reference, please notice that the writers of that show kept that character at about two to three years old in apparent mental age for as long as that show ran. I would expect most any ten-year-old from any decade over the last century to be generally familiar with the nature of cancer and how it (typically) kills, when it does.

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Some things to consider__

Is your Sister large-breasted, heavy-breasted, anything of that nature? If so, the weight distribution difference from a single mastectomy may cause back problems for her, increasingly bothersome over time. It may be difficult to find or necessary to make alterations/adjustments to make breast prostheses approximating the weight of the mastectomized breast or the remaining breast. The weight/balancing issues, besides climate or other heat issues (as from the materials from which many breast prostheses are made) have been troublesome for many. Besides comfort considerations, symmetry may be another matter of concern.

Consider her particular type breast cancer diagnosis. Some can be sneakier, even invisible -- especially at earlier stages -- to most any routine screening imaging means. Some are more likely than others to occur in the opposite breast also, sooner or later, if not already. This is not to scare you, only to inform you. This also has some bearing for many as to the decision of whether to have single mastectomy or prophylactic mastectomy in addition.

Do find out with particularity all you can about her breast cancer diagnosis from the Pathology Lab Report from which her diagnosis was made.

Does your Sister live independently? Could you be her Caregiver through the first week or so -- or until her drains are removed -- following her surgery?

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>>Will she be okay with no reconstruction?<<

It is my understanding that recovery from mastectomy surgery (mastectomy surgery alone (without reconstructive procedures) is generally easier and typically has far fewer complications than (the rate of complications that) come with having reconstruction procedures in addition to mastectomy surgery..

Here is our discussion threads directory on Breast Reconstruction topics. You might like to look over the numerous directory pages of topics titles there.

https://community.breastcancer.org/forum/44?page=1

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I will try to be back on here this weekend to add some links to some BCO discussions that I think will be helpful to you as to expectations for your Sister's needs during the earlier part of her recovery from mastectomy surgery.

Meow13

Well, I find I watch alot of shows from MeTV and now that I am retired live a fairly simple small group of friends kind of life. One might think me not with the "real" world. I do watch the news what I can stomach of the politics. It sounds like your sister should be able to comprehend and would want to decide for herself. From what you describe her lifestyle is different she may be simple minded but even simple minded people have preferences.

ShetlandPony

Hello, Londa. You started two threads at once, but since this is the one people are replying to, I will write here even though my comments are not just about the reconstruction question. I'm looking at the whole situation, and have a thought to share.

I hope nobody takes this the wrong way. I understand that your sister is an adult who has a mental disability, and not a child. But I think that nevertheless, a social worker who assists families where there are children or adolescents with cancer could be a good resource for you. The social worker probably would have good ideas about how to explain things at the right level, how to help your sister feel some empowerment, and how to help you help her. A good cancer center will have such a social worker, and I would hope you could meet with that person both singly and with your sister.

If you need help finding a cancer center with such a service, feel free to pm me your location.

Londa

Thanks for your kind words. I’m trying to do my best for my sister

Moderators

You may want to also look at this site that tries to describe breast cancer in a pictorial way, using lemons: https://worldwidebreastcancer.org.

As others have said, there are many variables to consider in your decisions. Reconstruction can be a very big procedure, and it's definitely worth discussing its implications, short- and long-term.

Your sister is a fortunate person to have you. We're all here for you!

Warmly,

The Mods

beeline

Londa, what a very hard thing you have to do. I’m so sorry you and your sister are in this situation. As ShetlandPony suggests, I wonder if some professional help or advice might be in order. You could try contacting your local Cancer Society who may be able to point you to some good resources, or perhaps your sister’s day center?

From a personal perspective, I chose single mastectomy with no reconstruction. In part because I didn’t want the risks and longer recovery times of reconstruction, but I also found the idea of waking up with a foreign implant quite unsettling. It is a very individual choice. For me it has been the right one, even without one breast it still feels like my body. But I also know I could theoretically change my mind and pursue reconstruction later which presumably would also be an option for your sister.

Wishing you both the best of luck navigating this disease.

buttonsmachine

I'm only speaking from my experience, but I've had a weird scenario where I've been down several roads in one cancer "journey." So these are some broad takeaways from my experience.

A lumpectomy with radiation, if possible, generally has the least impact in terms of pain, longterm function, and body image.

A mastectomy with implant reconstruction has more potential for long term discomfort, pain, and problems than a mastectomy without an implant.

I didn't have major problems with my implant, and many people don't. It's not especially comfortable either though, especially if you're a stomach sleeper. It feels like there's foreign object is in your body, because there is!

I had to have my implant removed due to local recurrence, and I'm half flat now. I'm way more comfortable now without the implant.

Autologous (like DIEP) reconstruction can have great results, but it takes a very motivated and dedicated patient.

Just my experience. Hugs, and best wishes to you.

Kerri_Oz

For me, the idea of reconstruction is only attractive in a very superficial way. Yes, it would appear I still have breasts, but they would serve no function, and may well be detrimental to my health in the long run. Even if there are no complications at the start, there's a very good chance any implant would have to be replaced in 15 or 20 years, and some women get really sick from the implant itself. I would think long and hard about what is best for your sister's long term health, both physically and mentally/emotionally, as opposed to what her physical appearance will be. I certainly don't envy you having to make this decision for someone else. It's a very difficult position to be in.

MDRR

I appreciate your wonderful care for your sister! I had a bilateral mastectomy (at age 61) and opted for no reconstruction. While it is different for everyone, I found the adjustment to my physical appearance to be very easy. It’s just me and that’s fine. It’s simpler to throw on a shirt and not worry about a bra. I’m retired so no longer dressing for work - at a younger age I probably would have felt differently. Best of luck and please keep us posted

Luckynumber47

Hi Londa, you say you are leaning towards no reconstruction and I think that's a very wise choice. Women here choose reconstruction because of their own or society's idea of the female body. It doesn't sound like that applies to your sister. I suspect it would be harder for her to cope with reconstruction than with being flat.

I didn't have reconstruction but from what I've read here it can be very, very uncomfortable. I've heard it described as an iron bra. Some have to take muscle relaxers to stop the muscle spasms. Recovery is longer, there are multiple dr visits to expand and then another surgery to replace the expanders with the final implants. There's a 25% chance of infection. There's also a chance of contracture or leakage of the implant.

How would you sister cope with having these foreign objects under her skin? Would she be able to understand what's going on?

I found recovery from surgery to be much easier than I expected and I hope the same is true for your sister. I had to sleep kind of propped up until the drains came out but I had very little pain. The tape covering the incision stayed on for a week and when they were removed the incisions were mostly healed. It might be hard for your sister to cope with the drains. It can hurt where they're stitched to the skin. I had mine for a week which is about the minimum. I don't think there's any way around having drains. She'll probably notice her chest feels numb after surgery but it won't be long before she gets used to it.

I don't know what her day to day routines are like but she won't be able to lift her arms over her head for a while and she shouldn't be lifting things. A small pillow to put under the seatbelt in the car will be nice.

Wishing you and your sister all the best. I hope her surgery and follow-up care goes smoothly whatever you decide

AliceBastable

If it's possible for your sister to have a lumpectomy, she might not have drains and the post-surgery care isn't bad, barring complications. But radiation is tedious at best, takes a lot of skin care for anyone, and can have burns at its worst. And she would have to be able to hold very still with no fidgeting for about 10 minutes per session - and about an hour for the set-up.

MCBaker

I saw Londa 's post early this morning, but was too preoccupied to respond. First response is that she is a very caring and loving guardian for her sister. I fully support the suggestion of pictures, and would further suggest that she have an artist friend produce some simplified / stylized illustrations. To empower her sister while encouraging flatness would be what I would do in that situation. Simply present the options, reasoning that there would be fewer operations and fewer problems of it happening again.

I think she may be smarter than Londa gives her credit for. For this reason a social worker with experience in dealing with mentally handicapped adults and their families would be an excellent resource.

Londa

I just want to say that I love how you ladies have offered me advice and comfort.❤️

Veeder14, I appreciate your compassionate comments.

Vslush, Thanks for your objectivity regarding no reconstruction. The information you provided was helpful.

Meow13, I'm very happy for you that you had excellent reconstruction results. I agree that living simply is a beautiful thing. See my comments below to Icietla regarding my sister's comprehension.

Racy, a lumpectomy is not an option for my sister because she would then have to go straight to radiation, per the BS. She has trouble sitting in the room during medical appointments. She left the room many times during our recent appointments to use the bathroom. The BS and PS were very patient with her but I'm not sure the radiation folks would be. She also doesn't like to be behind closed public room doors alone (like bathrooms) so a radiation room, I dunno. She is stage 1B, so hopefully other treatment options will be available. We haven't met with an oncologist yet but the BS has mentioned adjuvant therapy depending on the removed breast & lymph nodes biopsies. The BS said there could be chemo or an endocrine pill taken for 5 years and maybe even radiation. I pray she doesn't have to have radiation because I don't think she could handle the room.

WC3, I asked my sister what she wanted. She said she wants to keep her breast but that is not an option based on the things she'd have to do to keep a breast. Plus, it wouldn't be a breast like she's used to. She said doesn't want her stomach or anywhere else cut to give her skin for a breast! Also, WC3, I believe that you will meet a wonderful man who will love and accept you with or without a breast. I wish you well with reconstruction. Hugs.

Icietla, My sweet sister is very childlike. She is not engaging me in the cancer conversation though I brought it up a lot yesterday. She doesn't act like she understands when I say cancer or when I describe its repercussions as simply as possible. She does say her breast is sick like I explained. She lives in a group home with other mentally handicapped adults. I am exploring options for her recovery care. Thank you for the links on reconstruction. I believe reconstruction might subject her to more complications than she needs just to have a breast.

Shetland Pony, I PM'd you. Thanks.

ruthbru

I taught special education for 38 years; and based on what you have said, I would say the less medical things she has to do, the better. Even when all goes well, reconstruction is a process that requires a commitment of time and willingness to undergo uncomfortable (and often multiple) procedures. I think recovering from the one surgery will be scary for her and challenging for you and her other caregivers. Bless you for being her caring advocate!

Londa

Moderators, Thank you for the breast cancer link with the lemons pictorial. I appreciate this community and your advice.

Beeline, Thank you for sharing why you've chosen no reconstruction at this time. You're right that you could theoretically change your mind and so could my sister if she really could tolerate reconstruction. She's said she doesn't want her stomach cut for skin on a breast. So right now no reconstruction. I did call one cancer center for advice. They gave me 2 other numbers/centers to contact. I'll try to reach them next week.

Buttonsmachine, Thanks for your reply and for describing the options. I appreciate your compassion.

Kerri_Oz, I'm in total agreement with your comments. I don't envy me either. I just want my sister healthy again.

MDRR, Thanks for sharing your experience. My sister isn't concerned about her physical appearance. Even the caregiver at the group home stated the same thought to me when I discussed reconstruction with the caregiver this week.

Luckynumber47, Your succinct comments summarized my thoughts on this subject. You also confirmed that my sister will be fine with no reconstruction. I want just her healthy again and quickly at that! Thank you.

Alice Bastable, a lumpectomy is not an option for my sister because she would then have to go straight to radiation, per the BS. She has trouble sitting in the room during medical appointments. She left the room many times during our recent appointments to use the bathroom. The BS and PS were very patient with her but I'm not sure the radiation folks would be. She also doesn't like to be behind closed public room doors alone (like bathrooms) so a radiation room, I dunno. Thanks for your reply.

MCBaker, I appreciate your comments and your empathy.

Londa

Ruthbru, God bless you for 38 years in Special Education! Like you, I believe the less done medically is better for my sister especially the more I read about the steps involved with reconstruction. I just want my sister's health restored and for her to live a long happy life. Thank you for your reply. 😊

ShetlandPony

I replied to your pm, Londa.

Wildplaces

Londa,

I second ShetlandPony and ruthbru posts. To my way of thinking you are dealing with two intertwined but somewhat separate issues:

1. best course of action for your sister's physical health - simple, effective, definitive, requiring less follow up (every medical contact, be that visit, test or procedure, is disruptive and stressful even individuals who have a high level of function, it is alien to many others)

2. how will your sister react to a body change - that change may be less dramatic if a good reconstruction takes place and the postop is void of complications ( and to those who are happy with their recons - the breasts are different from before - the nipples are very life like these days, but they too are different and nothing is completely scarless - it would be unlikely that your sister would not know something happened to her breasts).

This is were it gets hard and professional counselling is imperative - trying to get some information about what your sister thinks/feels about absence or presence of breasts - keeping the option opened with her and if she asks you about it " some women have them back and some women choose not to, if you really miss them the surgeon can put them back" - a mastectomy can be done and a recon ( including implants ) added later if self image problems occur.

50, No recon, great breasts in the past😉, really 😳 , to be honest after working in the area for 20 years I know that I could have had great looking breasts but not MY breasts - for me its simpler without, nothing lasts forever. 2 years down and no regrets. Not to mention that as we age skin changes and these things sagg, yep there are lifts but they too dont last forever - my neck and back are thanking me for it.

I wish you and your sister well.

Icietla

Hi Londa.

Some of this linked content -- and content linked therein -- may raise some more questions for you to ask your Sister's Surgeon. Please do read through these, as they will tell you a great deal about what to expect (for her experience and needs) after mastectomy surgery.

The drains must be regularly emptied under scrupulously clean conditions, their output measured, and the output volume and appearance noted at those times. I suggest that you look into the possibility of a longer Hospital stay to start her recovery, then have her stay in your care until her drains have been removed.

https://community.breastcancer.org/forum/91/topics/857555?page=1

https://community.breastcancer.org/forum/71/topics/861298?page=1

https://community.breastcancer.org/forum/5/topics/865579?page=1

https://community.breastcancer.org/forum/91/topics/860041?page=1

https://community.breastcancer.org/forum/82/topics/858805?page=1

MCBaker

her insurance would more likely approve a brief stay in a nursing home.

jo6359

londa- I'm an occupational therapist Who currently works with adults with developmental disabilities. Thank you for having your sister's best interests at heart. I had a double mastectomy and I chose no Recon. I had no regrets. You are more aware of what your sister can comprehend than those of us on this thread. If she's unable to comprehend the meaning of cancer and surgery, it is doubtful she will comprehend the meaning of reconstruction. I'm a firm believer in allowing a person with disabilities to make as many decisions for themselves as possible. Disabilities vary from one individual to the next. But there is a certain reality that there are individuals who aren't capable of making rational decisions for themselves. This could also encompass drug and alcohol addictions, poor impulse control, brain injuries, Etc. Whatever decision you make, it will be the right one.

Londa

Wildplaces, I'm going to reach out to her state-assigned social worker as well as the social workers at the cancer center/cancer organizations to get counseling/input for her to comprehend the disease and surgery. Thank you for sharing your positive experience with not having reconstruction.

Icietla and MCBaker, I'm working on post recovery care. She will be unable to return to the group home until she has recovered. Icietla, thanks for providing the links on the post surgery care. Hopefully the insurance company will approve a post recovery stay at a facility until the drains are removed.

Jo6359, I appreciate you sharing your extensive knowledge of working with the developmentally disabled. I'm glad you've had no regrets about no reconstruction. I'm trying to include my sister in the decision making and have tried to explain things in a way she can understand.

Blessings to all!

pingpong1953

Londa, my niece suffered a very debilitating brain injury in a car accident that left her pretty much like an infant. She has to undergo many painful procedures to help mitigate the effects of her injury, and of course she isn't cognitively able to agree or refuse to go through them. Her parents explain to her what needs to be done and why, although there's no way to tell if she understands anything they're saying. The thing is that she trusts them completely and they've been able to talk her through these procedures to make them less traumatic for her. They've been doing this for over 20 years and their teamwork has gotten them through some difficult times. The main thing is that she trusts you to do the right thing for her, and it sounds like you're trying to gather enough information to do that. By the way, I agree that starting with a mastectomy and no reconstruction is the way I'd go. Just a relatively simple surgery like that will be confusing and stressful enough for her. See how she handles that and proceed from there.

MeToo14

Hi Londa, I'm so sorry you and your sister are going through this. I hope that no matter the treatment that she makes a full and quick recovery. I wanted to give you my point of view because I feel somewhat qualified to do so. My brother also has special needs. I'm not sure how your sister is developmentally delayed but my brother has down syndrome.

One day I will be his guardian but thankfully my mother is still alive and he lives with her. While some individuals are very high functioning, my brother really isn't. I would say that he too is at a 10 years olds level. He can do everyday ordinary things but he can't read, doesn't really understand how money works, and doesn't have the best hygiene. He has had health issues his whole life but recently has had some ongoing issues. One of the issues is that he has very bad teeth because he doesn't take care of them like he should. I know this is in no way as serious as what your sister is going through. However, my mom is faced with the decision of what to do. He needs to have several teeth pulled and would really need to have dentures because he would lose most of his front teeth. I have talked to my mom about this because I in no way believe that he would wear the dentures or even take care of them properly. I don't think he should get them. If it were up to me I would not do it.

I know how hard treatment was on me, I know that there is no way my brother would be able to go through it. If I was in this position I would chose the least invasive choice. You know your sister, and what she is capable of and how she would react. You have gotten wonderful advice here. You have done the right thing by talking to her and asking what she would like. But ultimately you know what is right for her. I can tell you that one day I will be the person to make these types of decisions for my brother and I know him and I would chose what would be easiest physically for him.

This is a very difficult decision for you and I'm sorry you have to make. I was able to keep my breasts and have no idea how hard reconstruction is but I know it requires multiple surgerys and pain. If it was my decision I would not have reconstruction. I hope my two cents helps you in some way. Hugs.

Cowgirl13

Londa, when you asked for feedback the following thoughts came up for me. First off, reconstruction can be terribly painful (my best friend just had them removed) although it's not terribly painful for everyone. Worst case scenario would be that your sister's reconstruction could be painful and because of it being painful it could perhaps really traumatize her. Alternatively all could go well and it wouldn't be a problem but do you want to take a chance on it? You are a wonderful sister. Blessings.