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Getting a diagnosis of cancer and dementia

molliep

Researcher
Aug 16, 2018
79
Leeds
What are your experiences of a loved one receiving a diagnosis of cancer and dementia?

Below is the experience of a woman who cared for her husband with frontotemporal dementia and prostate cancer. In particular, she speaks of the difficulty of identifying her husband’s symptoms.

We’d be happy to hear others’ experiences of a diagnosis of both cancer and dementia and the challenges involved, so please feel free to comment below with your own thoughts and experiences.


“We noticed like many many people that as he got older, he started to dash to the loo a lot more frequently than he ever had. We took him to the doctor, this was the first time that I realised how difficult it is not to make assumptions when someone’s got dementia, because I assumed that Rick’s bladder had weakened out, hence all the visits to the bathroom, and the locum doctor did exactly the same thing, and she prescribed medication. Now horrendously, three days later Rick* was writhing in agony. His tummy was solid.

“I phoned NHS Direct to ask for advice and they told me to take him to the hospital. I took him to the hospital, four doctors tried to insert a catheter to drain his bladder but they couldn’t. Finally, one doctor was able to and he drew off double the liquid that should’ve been in a normal bladder. So this proved that instead of having an overactive bladder, Rick had exactly the opposite. But because he had dementia, he couldn’t explain to the doctor because he’d forgotten that all those times he went to the bathroom he wasn’t actually having a pee. And I didn’t know.

“So you see this is the challenge. This is the big big issue. When someone is living well with dementia, as Rick was […] but when another condition comes along, the person with dementia cannot assist a clinician to make the right diagnosis. They did a biopsy and they found that the material they took out of the prostate showed that Rick had prostate cancer.

“I think it’s important to emphasise that living with dementia and cancer is a very different issue from living with say cancer and a heart condition. The difficulty when somebody has short-term memory loss is that they can’t help clinicians to understand, and that’s where the carer comes in.

“So with short-term memory loss, that’s why Rick was misdiagnosed, and that’s I think the very big learning point, that with diagnosing another condition, the person with dementia is already at a loss because they can’t tell you what is happening and they can’t describe the pain. It’s rather like asking a three year old to tell you what hurts.

“It can be improved by helping, I think, carers of people with a dementia diagnosis to be alert to the sorts of warning signs for things. So that they know what to look out for rather than relying on the person living with dementia. There are a couple of pain scales out there, I think we ought to share those with the carers. But I think a massive thing we could do is to help clinicians to understand that they must be more inclusive. They need to diagnose holistically.”


What do other people think about this? Is this experience similar or different to your own? We’d be happy to hear your thoughts.


*All names have been changed to maintain anonymity.
 

Duggies-girl

Registered User
Sep 6, 2017
2,028
Dad was diagnosed with dementia in November 2017 although it was obvious he had dementia and I had correctly diagnosed him myself. He had probably had alzhiemers for around seven years slowly getting worse but it took an incident to get him to see the doctor who referred him to the memory clinic and he started donepezil in January 2018

His appetite started to wane aroung Christmas 2017 and he was losing weight so I took him back to the doctor who examined dad and prescribed him ensure milkshakes. His appetite continued to decrease and I spent a lot of time doing his favourite meals and trying to tempt him to eat a little more but he always insisted that he was not hungry but felt fine.

He lost some more weight and started to refuse food as he was not hungry so back to the doctors we went. Dad had been taking his donepezil in the morning along with his other medications and apparently it can cause nausea and also anorexia so I started giving him his donepezil at night. This caused all kinds of problems for me as it meant that I had to stay late at dads to make sure he took it at night.

A few weeks later and it had made no difference so back to the doctors who arranged for an Xray, blood tests and an ultrasound. All came back clear apart from the ultrasound that found dad had a small gallstone that was probably insignificant.

By now dad had lost about three stone and was more or less living on ensure. I moved in then as I was so worried. Then dad started to throw up the little that he was eating so I went back to the doctor as I was at my wits end and the doctor arranged an urgent gastroscopy where they found that dad had advanced oesophageal cancer. This was in April.

In hindsight it should have been investigated earlier but cancer had not occurred to me. I don't blame his doctor either because dad never complained of any pain or of food getting stuck, he just said he wasn't hungry. Perhaps if he had not just started on the donepezil it would have been different. We thought he was anorexic but he had cancer.

They gave dad a stent very quickly and he is still here having regained his weight and looking much better. Even if they had found the cancer earlier they probably would not have given him chemo as it would have made him ill and would not cure him and we all agreed (including dad) that quality is more important than quantity and I think we made the right decision.

Eight months on dad is very happy and totally unaware that he has cancer or dementia except for when he has an appointment and even then he is totally unfazed and forgets before we get home. He is eating for England at the moment and has no pain or other symptoms. I on the other hand am a total mess and just don't know what is coming next.
 

malengwa

Registered User
Jan 26, 2017
258
Mum was diagnosed with lung cancer almost by accident after we went to out if of hours walk in centre during the Christmas shut down 2 years ago. She has a very swollen red leg which we were worried was a DVT. Investigations and scans later we found out about the cancer and were offered surgery or radiotherapy. At the time, mum was already deteriorating with Azheimers so we felt she would not recover well from surgery but not did think she would cope with daily trips to the hospital. There is that point in life that you have to ask if prolonging life is the right decision. Mum was no stranger to cancer she had had bowel cancer and was given the all clear. We opted not to have treatment for her, I do believe it was the best course for her. At the point they were going to review her she was in hospital with a brojen foot, then she was in with urine infections, so we never did get s review. Things were going down so quickly it was like cancer was the least of her trouble. We don't know how much the cancer had spread nor what difference it made to her deterioration. We will never know.
She never knew she had cancer, it just didn't seem right taking her to be poked and prodded when really there was little to be gained. She passed away 8 months after her cancer diagnosis. Would I do the same again? Yes I think I would. Do I wish we had had the cancer treated? Sometimes , yes, but even if it had bought her more time, what quality of life would it have been?
It was a really difficult time, but it's entirely possible that mum could have passed without us even knowing about the cancer.
 

Duggies-girl

Registered User
Sep 6, 2017
2,028
I agree with that @malengwa It was dad's consultant who said that quality was more important than quantity in dad's case and I think she was correct. Operation for dad was out of the question and if he had had chemo I think it could have made him ill and miserable and for what purpose.

Here he is eight months later looking forward to Christmas and looking good in himself.
 

Theresalwaystomorrow

Registered User
Dec 23, 2017
343
We think mum is coming into late stages Alzheimer’s
She has all the normal problems that come with this disease, but there is also something going on with her bowels, she is always extremely loose with a terrible smell, she also has a psc, Pilonidal sinus cyst, they won’t operate, she has lost about 11lbs in Weight, doctor have said that he wouldn’t put her thru operation or investigation as outcome would be poor. Also the nursing home nurses will say she is not in pain or discomfort when as a family we 100% know she is! Why do they play god? She is on painkillers every 4 hrs.
So my thoughts would be they need to listen to family more! People who really do know her
 

molliep

Researcher
Aug 16, 2018
79
Leeds
Hi everyone,

We are having an Expert Q&A session on dementia and cancer on the 30th January 2.30-3.30pm with Lorraine Burgess, the first ever Macmillan Dementia Nurse Consultant.

Lorraine's unique role involves working alongside cancer specialists and nursing staff helping them to understand the needs of those with dementia and co-existing cancer; and supporting people with dementia and cancer and/or their family with one-to-one help as well as post-diagnostic education, advice on future planning and emotional support.

If you'd like to ask Lorraine a question, you can do so here or if you prefer you can send your question to talkingpoint@alzheimers.org.uk.

Best wishes,
Mollie :)
 

Maggiejigs

Registered User
Apr 22, 2018
57
One of the many blood tests my husband had after visiting the doctor due to him suffering paranoia was a PSA test. Turned out he had prostate cancer and he was able to have Brachytherapy in August 2018, some four months before we got his diagnosis of FTD!

Having been taken into a room post cancer diagnosis and having a chat with a specialist cancer nurse about our various options we (I) thought Brachytherapy was my husband’s best option and on meeting with the Oncologist she agreed it was better to have treatment now as we didn’t know how my husband would be in the future if treatment required.

Well the first two months following the treatment were fine but by end October my OH started soiling, not making it to the toilet - an absolute nightmare. Cleaning carpets every day. Since then he has been wearing pull ups. The soiling has become less over the past few months and I noticed it only happened when we went out walking. For three weeks he hasn’t soiled but yesterday when we walked our daughter’s dogs he soiled himself! As the soiling has become less I have noticed that the pull ups are now always wet - this could have been the case when he was soiling but I was only noticing the soiling at that time. He has also been wetting the bed some nights despite having nothing to drink after 6 pm and getting up to the loo during the night and actually having a pee as I see it in the pan in the morning.

I have been told by neurologist that this is all possibly due to his dementia but I am convinced it is the radiation that has caused the problems and so does my GP. I have a private appointment in Aug with a urologist to discuss the matter as my husband does know when to go to the toilet, he just doesn’t always get there in time. Maybe things will never get better and we will have to adjust to him wearing condom catheter so that we can at least get away from time to time. I wish we had asked if we could watch and wait with regard to the cancer but thought we were doing the right having treatment now rather than later - hindsight is a wonderful thing

Sorry this is a long waffle but hope it makes some sense.
 

nataliewillow

New member
Jul 29, 2019
2
My Mum, who is 72, has Korsakoff's syndrome and has been living in a care home for the last 5 years was diagnosed with breast cancer last week. I was with her for the first hospital appointment. It was pretty grim not least because the consultant immediately, with no discussion, started a treatment plan of hormone tablets. On asking if this was the "normal" treatment for a cancer of her type (19mm invasive ductal E+) he said it wasn't but "circumstances" meant it was probably best. He had no idea what her type of dementia was and no attempt was made to ask my Mum what she thought (though she kept asking if this was the treatment "proven to work"). It may well be the case that the normal surgery isn't the right option but I found it both shocking and depressing that it was assumed that it wasn't worth following normal procedures. I've pressed for a best interests meeting and a proper consideration of the situation.
 

Jaded'n'faded

Registered User
Jan 23, 2019
883
High Peak
You're right - it is both shocking and depressing but the consultant may have good reasons for giving this treatment. Obviously I don't know your mum or what stage she's at but most people find that surgery/a hospital stay often makes dementia worse. Could your mum cope?

If it was my mum I'd say definitely no surgery but I'd refuse the drug treatment too - mum has an advance directive so I know she would wish to let nature take its course. But then, my mum is nearly 88 and at late stage 6.

I hope the best interests meeting sheds some light on the consultant's decision. I would hate to think people are being refused treatment 'just because' they have dementia - that would be totally unacceptable.
 

nataliewillow

New member
Jul 29, 2019
2
You're right - it is both shocking and depressing but the consultant may have good reasons for giving this treatment. Obviously I don't know your mum or what stage she's at but most people find that surgery/a hospital stay often makes dementia worse. Could your mum cope?

If it was my mum I'd say definitely no surgery but I'd refuse the drug treatment too - mum has an advance directive so I know she would wish to let nature take its course. But then, my mum is nearly 88 and at late stage 6.

I hope the best interests meeting sheds some light on the consultant's decision. I would hate to think people are being refused treatment 'just because' they have dementia - that would be totally unacceptable.
In the meeting it didn't seem as though he did. He didn't know my Mum's condition and didn't know what the interaction with a general anaesthetic would be. My feeling, I suppose, is that it feels important to honour the desires of the person who is diagnosed. It's sometimes hard to fathom, of course.

In my Mum's case she was asking the consultant about the surgery she would be having (unprompted). In a situation where the diagnosis is of a "treatable" cancer and where the dementia isn't degenerative (Korsakoff's doesn't get "worse") then I think that the decision should be based on all the available facts and the impact on quality of life not an assumption about whether it's "worth" treating someone with dementia. How do we decide if someone's life is worth living? It's always hard of course. I wouldn't wish Korsakoff's on anyone but I don't think a life with it is worthless or necessarily degraded (and therefore not worth treating cancer).
 

Countryboy

Registered User
Mar 17, 2005
1,471
Cornwall
Well I’m in my twentieth year from being diagnosed with Alzheimer’s and my Seventeenth year of being diagnosed with Frontal-temporal-dementia

In February 2019 I was diagnosed with a Kidney Cancer :eek::eek: in my discussions with the Consultant I was given two options go for a complete nephrectomy or lie with a CT surveillance in six months which is due end of August / beginning September I decided to gamble and the six months this was my personal choice obviously it will be decision time again then :confused::confused:
what I do know worrying about it won't change anything :):)