Support Advanced Stage Dementia and Breast Cancer:

bamiramontes

New member
Aug 19, 2022
1
0
My family and I are at a cross-roads. Our mother has advanced stage of dementia and was recently diagnosed with breast cancer. The doc recommends a mastectomy due to the stage of cancer. The doc also ordered a CT scan to see if the cancer has spread to other parts of her body. We want the quality of life for our mother to be at a comfort level because she has gone through so much (i.e. fractured hip, UTI, cancer 6 years ago, etc). If anyone has any suggestions, it is appreciated. This is such a hard decision for us all, and sometimes it feels overwhelming to make the right decision.
 

jennifer1967

Registered User
Mar 15, 2020
22,983
0
Southampton
id wait for the other scans then can base it on all information. general anaesthetic can progress the dementia as can a stay in hospital. its a lot of surgery and time to recover. if she is already at an advance stage, i would ask what benefit she would gain from having the surgery. its a very hard decision.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,363
0
Newcastle
Hi @bamiramontes and welcome to Dementia Talking Point. I am sorry to hear about your mother. Knowing what to do about treatment for other illnesses, hospitalisation and surgery when a person has advanced dementia is never easy. Now that you have joined our friendly and supportive community you will hopefully benefit from the empathy and suggestions of members who have gone through similar experiences.
 

Jessbow

Registered User
Mar 1, 2013
5,659
0
Midlands
My friend, who doesnt have dementia, has just had a mastectomy, at the age of 78.

She had the surgery and was sent home next day ( lives alone) with a drain that she had to manage. District nurses came in and out for a week.
She wasnt in a great deal of pain, but was tender and sore.

Would she have managed with advanced dementia as well- I doubt it.
The drain was in about a week- would your mum understand what that was about? That wo uld hav to be very carefully managed

I'm not surei'd want to put my mum through it if i didn.t absolutely have to.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,356
0
Kent
Welcome @bamiramontes

I'm sorry to hear you are in such a distressing situation.

I see your mother had cancer six years ago so I would bear in mind there might be a connection to another diagnosis. It sounds as if the doctor has this in mind too which is why the CT scan has been ordered.

From @Jessbow `s account above, it sounds as if surgery is an ordeal for someone who does not have dementia. I think if I could, I would ask for the least intrusive treatment to be provided to ensure mu=y mother could be kept as comfortable and pain free as possible.
 

canary

Registered User
Feb 25, 2014
24,920
0
South coast
We want the quality of life for our mother to be at a comfort level because she has gone through so much
I agree with this. Just because something can be done, doesnt necessarily mean it should be done. When mum was at advanced stage of dementia she had a stroke and the hospital were talking about fitting stents. I spoke to the consultant and asked him whether it was really appropriate for someone with advanced dementia. He was obviously relieved and said that he agreed, but it was the protocol and he had to offer.
You may well find its the same for your mother - its the protocol and they have to offer, but it may not necessarily be the best thing.
 

Violet Jane

Registered User
Aug 23, 2021
2,002
0
I think that I would be asking what other treatment will be necessary along with the mastectomy e.g. chemotherapy, radiotherapy and considering whether your mother could cope with both the treatment and the side effects.

It appears that many doctors are not willing to initiate difficult conversations about whether surgery and treatment are in the best interests of a patient with advanced dementia. I imagine that they don’t want to be accused of discrimination, and it’s difficult when they can’t get the views of the actual patient. Unfortunately, that means that the patient’s relative has to initiate the difficult conversation about whether their PDW should receive palliative care only.

I would find out whether the doctor is actually recommending surgery for your mother or telling you that it is something that can be done.
 

canary

Registered User
Feb 25, 2014
24,920
0
South coast
I would also want to know what the purpose of the surgery would be.
Is it to prevent pain?
Is it to extend life?

Surgery to prevent pain may be advisable, but would pain-killers work?
If its to extend life, then the question must be - what would the quality of this life be?
She may even pass away with the cancer, rather than from it
 

Louise7

Volunteer Host
Mar 25, 2016
4,635
0
Hello @bamiramontes and welcome from me too. Such a difficult time for you. From experience, treatment that is suggested initially after diagnosis is often an 'early view' rather than something that is set in stone. It is only after the results of all of the tests/scans have been looked at that a finalised care plan is formulated and discussed, but these decisions are made by a multi-disciplinary team, not just one doctor. A difficult time for you and your family, but have a frank conversation with the doctor about any potential treatment options that are suggested/offered and whether these would be in your mum's best interests bearing in mind risks and the often gruelling nature of the treatment and side effects which can continue for a lengthy period of time. If treatment is still recommended, explain the views of the family with regards to your mother's quality of life and the doctor should take this into account. Depending on prognosis there may be a variety of options available to keep your mother comfortable. If you are in the UK your mother should have been allocated a breast care nurse (BCN) and they can be a really good source of information and support so if your mother has one it would be worth having a chat with them about the situation too. I hope that everything goes well in terms of ensuring that your mother remains as comfortable as possible.
 

Louise100

New member
Jun 17, 2020
7
0
Hi,
My Mum has moderate stage dementia, and was diagnosed with breast cancer about a year ago. Mum has had cancer twice before and survived it, always being proactive with diagnosis and treatment.
This time, on consultation with the doctors, we decided the best option was to let Mum have the medication to treat the cancer rather than have the operation and other invasive treatment to remove it. This involves oral medication which 'fences in' the cancer for some time.
The consultant advised against another mastectomy, due to her experience of patients in a similar position. Ie , they don't tend to do well as regards their dementia, and nursing afterwards, understanding everything etc Although this was a difficult decision, we want Mum to have a better quality of life in the remaining time she has left.
Every person should be looked at individually, and there are possible side effects to any medicines.
Its not easy to have to make these decisions on behalf of a loved one, but we do the best we can, based on our love for them. I hope you come to the decision that you find the most peace with.
We don't always have 100% , but one decision will probably weigh down the scales as a better option for your mother.
I wish you and your mother all the best.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,248
0
High Peak
If it was my mum I'd say no. If my mum had been able to answer for herself re. a mastectomy at her age, I know she would have said no too, with or without dementia.

Will it make your mum better? No.
Will it improve her quality of life? Probably not.
Will it entail difficult surgery and aftercare? Yes.
Is there a strong possibility things could get even worse than now? Yes.

I know it seems wrong to refuse something that a doctor has said is the 'right thing to do with cancer at this stage' but think of your mum - would she have chosen to go through this?
 

Duggies-girl

Registered User
Sep 6, 2017
3,618
0
Hi @bamiramontes my dad was early stage dementia when it was discovered that he had advanced oesophageal cancer. We let dads oncologist make the decisions and she recommended that we follow the palliative route, which we did. This meant that dad could have anything that would keep him comfortable and nothing that could cause him harm. Dad had stents, blood transfusions and iron transfusions, he had antibiotics when he had pneumonia.

He did not have chemotherapy because it would have made him ill and possibly have killed him. Radiotherapy was a possibility but was never needed. Dad lived another two years without invasive treatment and was very happy. I would say 'listen to the oncologist' and ask if it is 'in her best interests'