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She is now 75 and has FTD with aphasia. It is not that I don't want to keep her healthy but I am concerned with what to do should it come back positive. I don't think she would comply with the treatment and if she did it might be too rough for her. I would like to hear your opinions on this. I have full guardianship and can make whatever decision is necessary.

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A wise geriatrician told me "If you aren't going to do the treatment, then don't do the test".

This was in response to a few atypical cells being found in fluid drained from around mom's lungs. The oncologist at the hospital she was in scheduled a bone marrow biopsy. Mom was 89, had CHF and Mild Cognitive Impairment. She was not going to agree to chemo or radiation or anything other than comfort.  We didn't do the biopsy.

OldSailor, we know how much you love your wife. You are not being neglectful. You are being sensible and loving.
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I no longer do the screening. My family know this.

It was my choice for two reasons.
One - it always hurt.
Two - I have no intention of being poked or prodded. I will have nothing intrusive or invasive.
All I want is to be comfortable (as best they can) and still keep some dignity.

Hugs
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My (almost) 92 year-old mother's last mammogram was two years ago. She's had them yearly since forever, and did have breast cancer in the mid-80's (the type that might not even be classified as cancer now). She had a modified radical mastectomy, no chemo or radiation was recommended. She had reconstruction done.

Her PCP had suggested she go for a mammogram every other year, so this issue didn't come up last year. What's the point of an every-other-year mammogram? What would happen if cancer was detected? I know my mother wouldn't tolerate chemo or radiation. I don't know about surgery. I do know that I'm not going to be the nursemaid for afterwards...

Even getting the mammogram is going to require an assistant to help my mother with everything (go here, get changed, put your things in a locker, take the key, sit there, and then when it's all finished unlock your locker and go to a room to change, put your hospital smock there and exit over here). She won't hear/process/remember. I will not be her assistant for all of this. If the medical monopoly (of which the doctor is a part as well as the mammogram center) prescribes a mammogram, then that medical monopoly can provide someone to be her assistant through the process. I will plan to drop her at the door (well, see that she gets inside the mammogram center) and then go do something else so I will avoid being corralled into being her personal assistant for a procedure I do NOT feel is necessary.
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My mom had dementia and was on a wheelchair. I couldn't believe it when dad said that the doctor wanted mom to have a mammo. The statistics of trying to tell someone with dementia to Not move, hold your breath, and Not Move as their breast is being squashed??? But dad insisted. And guess who was chosen to go in with mom to help her? Me! Not my dad who insisted on following the doctor's request and not speaking up to the doctor.

I rolled mom in. I told the tech that I don't think it's possible to do a mammo on mom. She said that it's been done with other patients. Well, we tried and tried to get mom's breast in between those 2 plates. But she was not having it. She kept wiggling. In the end, the technician gave up.

Reading the above comments, I like what that wise geriatrician said. It makes sense. If you're not planning to go through the treatments, then it's best to not do the mammo.
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My mother stopped all her preventative testing about 15 years ago, she didn’t have Dementia then, it was just her choice. She was in the ER last September for bleeding she couldn’t do the Vaginal Ultra Sound and the GYN wanted her to come to her office anddo a biopsy, radiation/chemo...I said no. My mom wouldn’t understand and then to go through the healing process. That probably wouldn’t turn out well. 
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Nope, nope, nope.
Mammograms HURT.
How in the world would she handle any type of treatment if anything was found?
I believe there is a point at which various medical tests and procedures should taper off.
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I think it's criminal that doctors are recommending mammograms for seniors in their 80s and 90s, particularly those with dementia and Alzheimers. A pure money grab in my opinion. Or incredibly misinformed doctors. It' makes my blood boil. No, OldSailor, your wife doesn't need a mammogram or any other kind of preventative test. You're a wonderful husband to be concerned about it.
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bookluvr, I hadn't thought of actually needing to be the one to get my mother positioned in the mammogram room. Again, she wouldn't hear the technician. It would probably take multiple requests. And, again, I would be expected to assist. NOPE!
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OldSailor, in some cases women do want to have a mammogram just for "peace of mind".

My own Mom was like that because her sister had passed from breast cancer over 45 years old, so my Mom was scared it would happen to her. So Mom kept having mammograms up into her late 90's. I know, totally ridiculous to go through all of that.

It was my Mom who insisted, even though her GYN said she no longer needed them. It wasn't easy, as it took two techs to handle my very frail, hard of hearing, fall risk Mom.

I had breast cancer but it was caught early, had major surgery, no chemo or radiation, but the daily pill I had to take for 5 years caused major, and I mean major side effects. I really believe with someone who had dementia, the surgery alone would put that person into the next phase of dementia, and those pills would make life miserable.
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I think it would be extremely helpful to have a palliative care professional help you make health care decisions for your wife going forward. What are your goals for your wife's health? A good palliative care consultant can help you evaluate any procedure that is recommended to you both with the focus being your goals.

I would not get screening mammograms if I had FTD.
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[Reflexively crossing my arms over my chest..]

No.

You can ask whoever bathes her to run a discreet check, if you like. What to look/feel for is widely available on the internet.

I would never discourage anyone, particularly anyone with a relevant family history, from getting a mammogram if they will find it reassuring. But I have said before: I'm not sticking my t**s in a mangle to amuse anyone. I check regularly instead.
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If you won't do the treatment, don't do the test.

Knowing exactly what is involved in a mammogram, I can't imagine anyone with dementia being able to cooperate with it.
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Okay the jury verdict is in. No mamogram. I will inform our PCP of our decision. I am sure he will agree with us.
My intentions are to keep her as long and make as comfortable as possible. I have heard that people with these diseases will die from one of two things. Either the disease or no being able to tell us of other medical problems.
I don't want make things more complicated they are already.
Thank you all so very much for your comments. I do appreciate them.
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My Mom didn't want to be touched. It cracked me up that 4 nurses were in her room, 2 women, 2 men. They all left but the man and she was having nothing to do with him undressing her. I told him I thought she would like a woman. So he got me a female but I got a "look".
Mammos are not fun. To get it right the first time is tricky. And you have to be able to follow directions. Like said, if you aren't going thru the treatment, why do it. I agree, to keep her calm and comfortable is now how it goes.
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CTTN55, oh do I agree with you. Moms dr. wanted a urine test. His bathroom held a toilet and sink right in front. I refused since it was just a checkup. Told him there was not enough room for me to stoop down and Mom couldn't do it for herself. He allowed me to take the kit home and I had my RN daughter do it. That was her last visit. She was declining monthly so if she had bladder cancer again, we would not have done anything, Next time was a lab urine test. I asked if the tech could help her, no, but I was given a hat. So easy. Years ago she broke a shoulder, I took her to ER. She was holding her arm close to her body. The RN thru a gown on the bed and told me to undress her, really. I told the nurse I thought that was her job and that I might hurt her. RN said, I guess that is my job sarcastically and changed her. That RN was making 35 to 40 an hour. My husband says you should just do it. Really, thats their job, not mine.

Can't believe ur Mom went thru all that in her mid 80s. Maybe treatments but I heard reconstruction is very painful. I had a friend say she would not do it again and she was fairly young.
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Blannie, I agree its all about money. Cancer is still a big money maker. I think Drs. get kick backs from other doctors for recommending them.
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JoAnn29, I'm sorry, i wasn't clear. My mother had breast cancer in the mid-1980s, not in HER 80's. I guess women DO undergo such surgery in their mid 80's? Yikes!

When my mother is in the ER, I'm the one who has to get her urine sample. They would have me be the one to take her to the bathroom (she has to go a lot) once she's in one of the examining rooms, too. (I refused.)

Since my mother doesn't want me to be in the examining room during a regular doctor's visit, I'm thinking that should also apply to the ER. And I won't be signing any discharge papers, either.

There hasn't been an ER visit for more than a year, knock on wood! They never find anything, anyway, since she won't allow the tests that would give some information.
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I just had a mammogram on newly purchased equipment. It didn't hurt. It didn't hurt.

I also told discussed this with my 95 year old mother. If you ignore something, you don't know what you're dealing with. If you know, you can discuss options and concerns, you are doing it from facts. Fear is a horrid reason not to do something. I'm not afraid of facts.
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jeannegibbs Jul 2018
I'm not sure to whom you are responding, maryq, but the original question here has nothing to do with fear. It is more about what a person with dementia can understand and what instructions she can comply with and what she would do with the results. Her dear husband is trying to decide what is in her best interest. He isn't acting out of fear.

But perhaps you aren't responding directly to his concern.
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I am a perfectly healthy woman of 65 who does not have a history of breast cancer in her family. I have had two mammograms in my whole life. They hurt! I do a self exam in the shower once a month. For me, with a lower than average probability, this is enough. That said, for a woman of higher years especially with dementia, I would not have it done if she has no history of cancer.
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I’m in Australia, where there is a free 2-yearly mammogram program for women over 40. The program is targeted to women aged 50 to 75,because ‘research shows that screening is most effective in detecting early breast cancer in women in this age group”. Older women don’t get the reminder letters, and though a mammogram is still free on request I have never heard of very elderly women having one. I think the whole idea is bizarre, and would definitely give it a miss.
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When the American Cancer Society recommended doing away with screening mammograms for women over 80, they were met with a huge outcry of resistance from donors and volunteers, so now the guidelines specifiy only "as long as the woman is in good health and wants to be screened." I myself am 80 and did not have a screening mammogram last year and don't intend to have any more. I had a colonoscopy last year because I had persistent diarrhea, and the colonoscopy was necessary for correct diagnosis and treatment (microcolitis). Since microcolitis is not known to increase risk of colon cancer, my GI guy said I didn't need any more colonoscopies either.
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It is true that some people avoid certain types of test because they are afraid of what the answer might be; and in general, when that applies, I'd agree with Maryq that it is better to know what you're dealing with than to stick your head in the sand (or, like the hedgehog, curl up into a ball and hope the truck will be scared off by your prickles). But I also agree with Jeanne that that isn't the issue here.

I *sort of* feel for public health specialists trying to explain the risks and benefits of screening programmes to an anxious audience who couldn't give a monkey's about population statistics and just want to know if screening will save them from a horrible death. But I'd feel a lot sorrier for them if they'd take the trouble to get better at explaining the statistics.

Perhaps part of the trouble is that in the context of your own health you want clear advice, and you're not best pleased to hear the experts saying "probably..."
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My Mom was due for her mammogram. My sister and didn't think it made sense, and when we asked her doctor, the doctor agreed. She said it wouldn't prolong her life, and I agree. With her dementia and other problems, it wouldn't make sense for her to go through any treatment even if something was found.
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Mum still gets her mammograms at 84, but if anything showed up she would perhaps consider surgery, but there is no way she would agree to Chemo or radiation.

Mum has good physical and mental health, lives independently, drives etc. She could pass for 60. She is very clear in her POA what she does and does not want regarding her healthcare.
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As an NP, I feel the need to explain why health providers must recommend mammograms, colonoscopies, lab work, etc to "elderly" patients. If we don't, family
members with litigious ($$$) expectations, can claim negligence. This can occur even if
the patient has a DNR/POLST claiming no more tests. Lighten up folks.
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A health system where patients are advised on the basis of professional indemnity insurers' requirements, rather than clinical judgement?

I don't disagree that it's a problem, but I don't see that it's anything to be very chirpy about either.
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To best answer your question answer this...
Would a mammogram that showed "something" change a course of treatment?
Chances are with or without treatment her lifespan would be about the same. So you are looking at QUALITY of life versus QUANTITY. I think quality is more important than quantity at this point.
Also to even do the test is not comfortable, it can be confusing. If you decide to schedule this for her when you make the appointment explain that they will need more time and patience.

Bottom line..short and to the point.. I would not bother with the test at all. Also not that you asked but also no to a colonoscopy and any other "invasive" test. There is no test that is worth the discomfort and confusion for a diagnosis if you would elect to not proceed with any treatment.
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OldSailor: You should tell the radiologist of your wife's ailments. Then they will be able to do an ultrasound mammography. That may make it easier for her... and you. A friend of mine missed one year's mammography.  She got metastatic breast cancer. She died. It's all the individual's choice and in this case, Sailor, it's your choice.
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I didn't say these medical recommendations were made to avoid lawsuits. They are legitimate and acceptable standards of care...and appropriate suggestions. I am trying to highlight the serious issue of blaming healthcare providers for wasting a pt's time and $$$. It is a patient's decision (or medical POA) to accept or not. The Hippocratic Oath exists.
exists.
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Llamalover, Thank you. Last year I took her in for the exam and the tech told me to wait in the waiting area. Less than 5 minutes later the tech came out and ask me if my wife understood english. That is when I was given the chance to explain that wife had dementia and was invited into the exam room to assist. The exam went smoothly after that.
Since she is in worse condition this year I felt it necessary to ask for experienced advise. Our PCP is very understanding and supportive on these types of exams. We do watch her labs closely for things can be treated with meds. So far nothing invasive or that may require extensive treatments like most cancers.
I am more into quality of her life than quantity. comfort and good times for any memories she might have. We can almost always just hold hands and watch TV or try to talk.
But I really do appreciate all of the suggestions here. It helps reduce the confusion in making this decision.
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