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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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OldSailor: If underside of breast is a rash, my late mom had that and got an RX.
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WOW! Did I ever open a can of worms with this. The information I have gotten is incredible. We see our PCP Monday for another sudden condition involving the under side of her breast and the Mamo will be discussed then.
Unless he has some very convincing arguments DW will not be getting any more Mamo's.
I will continue providing what ever care and assistance I can and seek out help with what I cannot.
Thank you all for your help.
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I would not put someone her age and condition through breast cancer treatment so the test is also not something I would allow. No testing for anything we would not treat anyway is our rule.
On the other hand, some private pay medical insurance companies require specific sets of yearly tests to determine rates, eligibility etc. I'm not even sure it's legal for them to do so, but I'm hearing more and more about them doing it. Workers comp has required some testing of my husband from time to time that I would not normally have had done. His condition is related to a work related brain injury. I don't like it, it's a horrible tortuous inconvenience for all of us, but, they require it to continue paying for his injury related medical care and his medication alone would cost nearly $4,000 a month, so we jump through their hoops as required.
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We're invited to attend them every three years between age 50 and age 70; besides that, it's at your GP's discretion. I've never heard of anyone being refused one if they asked for it.

This is the page from the NHS website trying (bless the little dears) to support informed choice:

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Benefits and risks
The NHS offers screening to save lives from breast cancer. Screening does this by finding breast cancers at an early stage, when they're too small to see or feel.
But it does have some risks.
Screening also doesn't prevent you getting breast cancer, and it may not help if you already have advanced stage breast cancer.
It's up to you to decide if you want to have breast screening.

Benefits of breast screening
Breast screening helps identify breast cancer early. The earlier the condition is found, the better the chances of surviving it.
You're also less likely to need a mastectomy (breast removal) or chemotherapy if breast cancer is detected at an early stage.

Risks of breast screening

Overtreatment
Some women who have screening will be diagnosed and treated for breast cancer that would never have otherwise caused them harm.
Read about breast cancer treatment, including potential side effects.

Unnecessary distress
Following screening, about 1 in 25 women will be called back for further assessment.
Being called back doesn't mean you definitely have cancer. The first mammogram may have been unclear.
Most women who receive an abnormal screening result are found not to have breast cancer. These women may experience unnecessary worry and distress.
About 1 in 4 women who are called back for further assessment are diagnosed with breast cancer.

Missed diagnosis
There's a small chance that you'll receive a negative (all clear) mammogram result when cancer is present.
Breast screening picks up most breast cancers, but it misses breast cancer in about 1 in 2,500 women screened.

Radiation
A mammogram is a type of X-ray, and X-rays can, very rarely, cause cancer.
During a mammogram, your breasts are exposed to a small amount of radiation (0.4 millisieverts, or mSv).
For comparison, in the UK, a person receives a dose of 2.2 mSv a year from natural background radiation.
But the benefits of screening and early detection are thought to outweigh the risks of having the X-ray.

Weighing up the possible benefits and risks of breast screening
There's debate about how many lives are saved by breast screening and how many women are diagnosed with cancers that wouldn't have become life threatening.
The numbers below are the best estimates from a group of experts who have reviewed the evidence.

Saving lives from breast cancer
Screening saves about 1 life from breast cancer for every 200 women who are screened.
This adds up to about 1,300 lives saved from breast cancer each year in the UK.

Finding cancers that would never have caused a woman harm
About 3 in every 200 women screened every 3 years from the age of 50 to 70 are diagnosed with a cancer that would never have been found without screening, and would never have become life threatening.
This adds up to about 4,000 women each year in the UK who are offered treatment they didn't need.

What this means
Overall, for every 1 woman who has her life saved from breast cancer, about 3 women are diagnosed with a cancer that would never have become life threatening.
Researchers are trying to find better ways to tell which women have breast cancers that will be life threatening and which women have cancers that won't.

Who's at higher risk of breast cancer?
The causes of breast cancer aren't fully understood, making it difficult to say why one woman may develop breast cancer and another may not.
But there are risk factors known to affect your likelihood of developing breast cancer.
Some of these you can't do anything about, but there are some you can change.
Learn about the risk factors for breast cancer.

Page last reviewed: 27/03/2018
Next review due: 27/03/2021

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Sigh. So that's helpful, then...
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IDK, we don't even do mammograms annually here unless there is a strong family history, we do every other year.
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Countrymouse,
I will agree that she deserves fair and just medical treatment and I do not intend to deprive her of that. I just cant see putting her thru some of the devastating treatments like chemo. I feel that would just add to her mental and physical problems and it may not extend her life.
She has recently started meds for her kidney function and our PCP and I will do whatever we can to make her comfortable and keep her going. But after we have seen so many of our old friends and family members pass and what they went thru I just can't see her throwing up blood, etc. (that was a friends cancer), urinating black liquid(another friend), and who knows what else is out there. That is not living, that is torture.
I don't want to be rude to anyone, but there are just too many in the medical field that believe as long as there is heart beat the person is living. Perhaps in some cases, yes. But in just too many, No.
I will keep her as long as I can but I will not torture her with teeth extractions, hair falling out, critical weakness, tubes and wires going in and out of her and she not know why.
Thanks again to all.
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OldSailor

#1 Yesterday I was roundly bollocked - as we say over here - by Dr. Daughter for being rude about mammograms. She rebuked me further that dementia patients have equal rights to medical care (she's telling me?!), and said an ultrasound would be the way to go if you decide you would like your wife to be screened - which I see another poster has already suggested. (I'm still not getting a bloody mammogram, sulk pout).

#2 I thought I would look up the statistics. The bad news is that at 75 your wife has just entered the age group at greatest risk of developing breast cancer. The much more cheerful news is that in this group, women aged 75-79, the incidence of breast cancer is 451 per 100,000 women. So unless there is a concerning family history, her odds are pretty good.
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anonymous594015 Aug 2018
Also: Breast cancers found in that age group are very rarely aggressive forms of the cancer. Many can be watched with a good statistical probability that the patient will pass away from some other ailment before the cancer becomes a problem.
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Margaret: Thank you for your explanation of metastatic breast cancer so that OldSailor will have that info. My friend was not told by her oncologist that she had that type of breast cancer, unfortunately. She was very angry with her specialist, but it was already too late.
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OldSailor: You're welcome. Of course they would allow you to accompany her into the exam room. As always, I just offer up information that I know. Good luck.
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Old Sailor, you must make up your own mind, but perhaps check Llama’s comments. ‘Metastatic cancer’ is the description for cancer originating in one part of the body that has spread (metastasised) to another part of the body. This would normally mean that the friend’s wife had quite advanced cancer in another area that had by that point spread to the breast – not that within a year she had developed an aggressive fatal breast cancer. It may be that her death could not have been prevented by a mammogram. It’s tricky!
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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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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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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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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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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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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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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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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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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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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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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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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 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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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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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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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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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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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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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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[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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