Cancer Surgery or not?

meghanjoy

Registered User
Aug 31, 2013
6
0
My dad is in about stage 6 of alzheimers. He has been diagnosed with lung cancer. The surgery to remove the tumor would be very hard and painful. He doesn't really understand what is going on. And doesn't like to leave his home. He still recognizes and talks with me and my mom and kids. I'm afraid that the stress of surgery and a hospital stay might just be the end of what little is left of my dad. If you ask him he says he doesn't want to go to the hospital. At this point my family and friends and his primary care doctor think leaving him alone might be what's best for him. I'm scared and sad. The stress of the decision is driving me crazy. And I would like the opinion of other people that understand Alzheimer's disease. He is happy now. He doesn't know what's going on but he's happy.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,446
0
72
Dundee
Oh dear, how terribly sad. Your poor dad.

I don't know what to advise. I think I feel that I agree with your family and the professionals. As long as they can make your dad as comfortable as possible given the circumstances.

Wishing you much strength for this difficult decision.
 

gringo

Registered User
Feb 1, 2012
1,188
0
UK.
Hello meganjoy,
Your gut feel seems to be to not to subject your Dad to the surgery. Although it’s the hardest decision, I feel you are right.
If I were your Dad I would want to be left alone.
My heart goes out to you.
 

lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Hello
Welcome from me

I am so sorry to hear about your Dad. Its bad enough having one vile disease but having Cancer as well, it just dont seem fair to me.

IMO sometimes the best thing we can do for a person, is to do nothing that would make them feel worse, scared also dad would have to have an Anaesthetic plus a stay in hospital, neither of which many dementia sufferers cope with, putting it mildly.

To me your last statement says it all
'He is happy now. He doesnt know what's going on but he's happy'

Just in case this is of any help
When my Mum was alive and in later stages of mixed dementia, we had to call the GP out to mum , it was either for severe constipation with by passing or retention of urine

On examining her stomach the GP found a lump, Dad and I both said we didnt want to have it investigated as we could not put mum through tests or treatment as she would be so terribly scared, this lump was found by all GP's who pressed her tum after that time, with mums family history of cancer we assumed that that's what it was

Over time we had mums pain relif increased, but like your Dad she was happy, and to this day we are not sorry we chose not to do anything.

I suggest that as your Dad has a diagnosis , that you get the Hospice involved, a Doctor or nurse can refer you, they are very good, so cairing
 

Noorza

Registered User
Jun 8, 2012
6,541
0
Sometimes doing nothing is the hardest thing of all, but my instincts say the kindest thing is to be guided by your instincts, your family and the doctors. It's so hard to measure the quantity of life with the quality of life when people are older and we know with alzheimers they can't get better. With the young it's easy, we fight, we fight and we fight some more but from where your Dad is now the quality of the time they have left is so important.

I'm so sorry xx
 

MReader

Registered User
Apr 30, 2011
191
0
essex
Hi
I'm in a very similar situation to you - my husband is also at about stage 6 with mixed dementia (vas dem & Alz)
When he just had mild cognitive impairment he was diagnosed with prostate cancer 5 years ago & was given hormone therapy prior to radiotherapy. During the time he was on hormone therapy he suffered many bad angina attacks and had 2 coronary stents fitted, then 2 months later, he had a stroke which resulted in full on dementia.
He has had no further treatment for the prostate cancer. However, the hospital now say he needs more treatment - the same hormone therapy as before. They say that the angina & stroke were nothing to do with this treatment. :confused:
My husband says he feels perfectly well and doesn't want any more doctors or hospitals 'mucking about with him' Our GP says the same - he is 80 and has enough to deal with anyway.
In view of the coincidence of the angina & stroke, I do not want him to have any more treatment - on this we are both fully agreed. So it will not happen - just leave him in peace to get on with the life he has
However, my husband's family (2nd marriage, been together 16 years, married 10) want him to have this treatment - even speaking to the consultant behind our backs.
I made an appointment for my husband to have blood tests to see if he is OK to start the treatment (to appease his family) but he refused to go to the surgery to have them.
His family say I am influencing him against their will & have not spoken to us since this all happened - just over 2 weeks ago
Life is hard enough without all this - but I will make sure that his wishes are respected & he will have no treatment
We have to do what our hearts & experience tells us is best
 

Dave53

Registered User
Oct 25, 2012
13
0
Norfolk
Hi Meganjoy,
I have a very similar situation with my mum, she is suffering with bouts of anaemia and has dark stools which suggest internal bleeding. She had a similar episode a couple of years ago, and had lots of tests, endoscopes in both ends, and the joy of barium enemas, which didn't find anything to treat. Now two years on, she's 87, with a bad heart and vascular dementia. I asked her GP what he thought, is it worth going through all those tests again, and if they did find something specific would she be fit enough to cope with the treatment? He reassured me that the best we can do is just to do what we can to keep mum jogging along, she probably hasn't got long left, so we are concentrating on keeping her happy and comfortable. If she was ten years younger with a sound constitution that could withstand surgery it would be different, but she isn't so why put her through unnecessary stress and anxiety?
Dave
 

Jessbow

Registered User
Mar 1, 2013
5,736
0
Midlands
Hi Meganjoy,
I have a very similar situation with my mum, she is suffering with bouts of anaemia and has dark stools which suggest internal bleeding. She had a similar episode a couple of years ago, and had lots of tests, endoscopes in both ends, and the joy of barium enemas, which didn't find anything to treat. Now two years on, she's 87, with a bad heart and vascular dementia. I asked her GP what he thought, is it worth going through all those tests again, and if they did find something specific would she be fit enough to cope with the treatment? He reassured me that the best we can do is just to do what we can to keep mum jogging along, she probably hasn't got long left, so we are concentrating on keeping her happy and comfortable. If she was ten years younger with a sound constitution that could withstand surgery it would be different, but she isn't so why put her through unnecessary stress and anxiety?
Dave

Exactly the same as my mum,Propably a bleeding ulcer somewhere in her stomach area, but like you, its not fair to put them through all the stress and anxiety.

We live today, if tomorrow doesn't happen we'll console ourselves with the fact that she died reasonably happy and contented ( as far as she is either!)
 

meghanjoy

Registered User
Aug 31, 2013
6
0
Hearing this helps tremendously. This was probably one of the hardest decisions I've ever made. I second guess it all the time. My kids are 6 and 3. And they just love their papa. He also is still smoking. He had a pacemaker replaced in may. He was in the hospital for one night. I stayed with him because he kept trying to leave and take out his IV. My grandmother had alzheimers/dementia too. Bless you guys.
 

FifiMo

Registered User
Feb 10, 2010
4,703
0
Wiltshire
Hiya MeghanJoy

Has anyone told you what is involved in doing the surgery? Firstly is the general anaesthetic to consider as it doesn't act well with people with dementia and whilst some regain the lost faculties to a degree, most end up with a permanent deficit afterwards. The consequence of this MAY mean that the contented and happy dad you have right now moves to another stage. Secondly, ask the consultant to explain the operation would entail. For example most lung surgery involve having to break some or all of the ribcage to get access. So aside from the work on the lung, your dad would waken up having had half his ribs broken. Some of us would find it difficult to manage one broken rib let alone many, plus the surgery done to get in there. This leads me to probably the most important factor...having survived surgery, does your dad have the capacity to understand and follow instructions? PHYSIO is almost more important than the surgery in that there will be intensive therapy needed to get your dad fit again!

I know you feel you are perhaps making the decision, BUT under the mental capacity act everyone is required to listen to your dad first and foremost. Your dad has already made his decision which he is entitled to do. He may forget immediately after but that is allowed. This is important because you may, for the rest of your days, question whether you made the right decisions or otherwise. It will help therefore to remind yourself that it was your dad's decision. It was his to make and he made it loud and clear...no hospitals. My view is that there is nothing better that you can do for your dad than support his wishes. Dementia robs you of so much but capacity is never 100% gone. It varies day to day and this is why the Mental Capacity Act provides for this, no matter how fleeting his capacity might be. I would remind myself of this when you find yourself questioning what has happened. You did what your dad decided. No hospitals. You acknowledged your dad's ability to decide. Neither your dad or your family or the medics will ever fault you for that.

Fiona
 

tarababe

Registered User
Sep 9, 2012
192
0
Durham
Hi MeghanJoy

When my mum was alive, she underwent two operations for broken hips and they were to be her down fall and eventually cause of death. I don't say this to scare you, but these are the facts. Hospital infections, ok higher I think in orthopaedic surgery, are very common. In my mums case, they couldn't fight it. Now part of the reason was I believe because they couldn't keep a drip in her to administer antibiotics, as she kept pulling it out. She didn't understand, bless her. There is much more to it sadly and has gone to a full coroners inquest, however the point I am trying to make is this. I have read so many times on here that hospital for dementia patients if one of the worst places they can be as they get very scared and don't know where they are. This adds to symptoms worsening and they did in my mum. Take them out of any familiar environment and this makes the dementia worse. I have to be honest and if it were me I would not, with hind site subject someone to an operation if they had late stage dementia. Especially if they were reasonably happy and especially if they said they didn't want it. I would make the most of the quality of life your dad has now.

This is just my opinion though.;)
 

zeeeb

Registered User
If it were my mum, i wouldn't do the surgery. My mum has always been pro-euthenasia, always never wanted to be kept alive if her quality of life was poor. She wouldn't have the strength to do anything about it, but there is no way I'd be taking measures to extend her life.

My step grandfather inlaw had a pace maker put in a few years ago, and I think it was the worst decision he ever made. He is so lonely and isolated, even within the nursing home, surrounded by people. It will keep him alive alot longer than he probably wants to be alive. He is virtually deaf now, and is so isolated, he's 90 and can't change his hearing situation, so avoids people because he can't communicate with them.

Each to their own, but I know if i was in the same situation, i would not want to be saved. The thoughts plague me somewhat because i have a strong family history with alzheimers (mum and grandfather both early onset in their 50's), so I make it very plain and clear that I don't want to be kept alive long, I have no intention on living to 100 even without dementia, i don't want to be a burden, and that my wishes are not to be over medicated, over treated, or kept at home.

I guess the decision has to go on what your dad would have wanted when he had his full faculties.
 

zelana

Registered User
Feb 11, 2013
127
0
N E Lincs
We're in a similar situation with Mum. She has a lump in her abdomen which has been investigated by CT Scan & ultrasound. It is possibly colon cancer but the surgeon felt that surgery wasn't an option due to Mum's general health & dementia.

I wasn't with Mum when she got the diagnosis as the appointment was arranged at very short notice with the care home. A carer went with her & phoned me to tell me what had been said as she wasn't sure how much Mum had understood. When I saw Mum she told me the doctor had said she has a lump & that he didn't advise surgery but would do it if she really wanted it.

I think she's forgotten now though as she tends to blame something she's eaten if her tummy is a bit upset.
 

meghanjoy

Registered User
Aug 31, 2013
6
0
I feel like a huge weight has been lifted off my shoulders. I can't even express how much it means to be able to connect to people who understand what I'm going thru. My dads alzheimers is early onset. I have a strong family history of it as well. We have not over medicated my dad. He is quite a handfull. It's getting harder to take care of him but my mom and I are not ready to put him into a home. He would HATE that. The wandering is bad. But as long as he's having a good time that's what is good. Thank you again everyone. I'm so glad I found this app on my phone.
 

Jaycee23

Registered User
Jan 6, 2011
383
0
uk
It must be very hard for you and your husband, especially when family members are not all in agreement. Maybe the specialist can explain to his family what it would truly entail and would they really like to put their father through it and above all go against his wishes. Of course they will blame you as they want to find someone to blame but don't be bullied and you are doing what you are doing for the best for your husband as he wants to be left alone. Take care

Hi
I'm in a very similar situation to you - my husband is also at about stage 6 with mixed dementia (vas dem & Alz)
When he just had mild cognitive impairment he was diagnosed with prostate cancer 5 years ago & was given hormone therapy prior to radiotherapy. During the time he was on hormone therapy he suffered many bad angina attacks and had 2 coronary stents fitted, then 2 months later, he had a stroke which resulted in full on dementia.
He has had no further treatment for the prostate cancer. However, the hospital now say he needs more treatment - the same hormone therapy as before. They say that the angina & stroke were nothing to do with this treatment. :confused:
My husband says he feels perfectly well and doesn't want any more doctors or hospitals 'mucking about with him' Our GP says the same - he is 80 and has enough to deal with anyway.
In view of the coincidence of the angina & stroke, I do not want him to have any more treatment - on this we are both fully agreed. So it will not happen - just leave him in peace to get on with the life he has
However, my husband's family (2nd marriage, been together 16 years, married 10) want him to have this treatment - even speaking to the consultant behind our backs.
I made an appointment for my husband to have blood tests to see if he is OK to start the treatment (to appease his family) but he refused to go to the surgery to have them.
His family say I am influencing him against their will & have not spoken to us since this all happened - just over 2 weeks ago
Life is hard enough without all this - but I will make sure that his wishes are respected & he will have no treatment
We have to do what our hearts & experience tells us is best
 

Nebiroth

Registered User
Aug 20, 2006
3,510
0
I would sit down and have a long talk with the specialist in charge, who is most likely an oncologist.

The first thing you really need to know is what sort of cancer it is - as there are subtypes of lung cancer - and the "staging". Staging means establishing how advanced the cancer is, the higher the stage the more advanced. At some point most cancers spread beyond the localised area (often to lymph nodes first and then carried elsewhere). This is called metastasising. Once this happens treatment is difficult and a cure may be difficult to achieve (in fact, for most cancers, "cure" is not used - but "remission" since all cancers have the potential to return, once you have had cancer it is mor elikely you will get it again)

This will determine the treatment plan. Lung surgery can range from removal of a small section, to part of (a lobe) of the lung, to a whole lung (since w ehave two, one each side, and it is possible to live well on one, as the body adjusts to the loss). There may be treatment with drugs (chemotherapy) or radiation (radiotherapy), either before surgery (if a tumour is large, it may be need to be shrunk first) or after (this is to kill cancer cells that the surgery may miss, or those which have spread elsewhere)

From the treatment plan you will be able to see how traumatic the course is likely to be - for example, radical surgery followed by lengthy chemotherapy is going to be tough on anyone.

You will also need to know the prognosis. Unfortunately, lung cancer has a poor prognosis compared to many other cancers, the five year survivial rate (persons still alive five years after diagnosis) is low.

I suspect this is the line of thinking of the primary care doctor - that the treatment will be traumatic and agressive, with lots of side-effects, someone with dementia will be poorly equipped to understand what is going on or comply with the treatment and it represents a poor exchange since a cure is unlikely and there may even be only an poor quality extension of life. Obviously, some people want to have allthe time they can possible get, others do not.

You might want to discuss the alternative, which is palliative care. Palliative care aims to give the best quality of life with less consideration given to quantity. It may include things like chemotherapy, for example to shrink a tumour to make the patient more comfortable. Hospises specialise in this, and palliative care teams include doctors who specialise in pain relief and so on.
 

Miss Merlot

Registered User
Oct 15, 2012
3,261
0
To me (but then I am a heartless cow) I would be thanking the stars for an illness that rules out waiting dementia out to the bitter end....

For me, it is the far more humane thing to do not to treat him - cancer is horrible at the best of times, but when you don't even understand the treatment or what is happening to you during it, it seems an active cruelty to impose, solely for the sake of a few more tormented years at best...

What would your dad pre-dementia have said...? My dad's mum had AD for 20 years before he died, and if a "physical" illness had carried her of 15 years earlier, it would have been a mercy... Dad has told me firmly in the past never want me to or indeed forgive me for imposing treatment on him in that condition.
 

zeeeb

Registered User
I agree Miss Merlot. It is something that most people can't actually say out loud, but what many people think. My grandmother inlaw is 97 this year and has been existing with alzhiemers for far far too long. She has been pretty much physically as strong as an ox, but hasn't left the nursing home in 3 years because she's just too confused.

Most people wouldn't want to live to that age with dementia, but they (the family) were all bought up catholic, and are all too scared to not treat her for anything that comes up because of their up bringing and pre-conceived ideas of what is right and wrong, versus what is human and logical. They are all too scared to even have a conversation about DNR or palative care let alone actually implementing it.

I often tell my partner that if he ever does that to me, i'll never forgive him. To me, it is the most unforgivable act, to keep me alive longer that I need to be if I end up on the dementia train. He might have been bought up religious, but I wasn't, and I will not be forced to endure longer than I must, because of his fears.
 

meghanjoy

Registered User
Aug 31, 2013
6
0
You guys have helped me so much. I feel like I can almost handle this. And I do think letting my dad go with god is what is best for him. I know what he wants. He has always half jokingly told me to just take him to a cliff and let him jump off if he gets the way he is now. When my dad is finally passed I feel like I will be able to tell him so much. And his soul can here me. My little munchkins love their papa so much. And I don't want them to go through him forgetting who they are. As my grandma did forget who I was. I am realizing that this forum is in the UK. I am in America. California to be exact. But I've done my ancestry and my ancestors are all from the British isles. You guys speak so wonderfully and clearly from the heart. And God bless you people for saving my sanity.
 

yoyo

Registered User
Sep 22, 2012
80
0
what a post to read when we are just at the same stage too. mum is 89 and we think has Leukaemia, we are having a meeting tomorrow to discuss the whole thing with our GP. It makes sense really we've been exhausted looking after her the past 4 weeks. My family and I couldn't put her through all the tests let alone any treatment. It just seems so unfair for them to have so much. I would, like the other post have said , if he's comfortable and Happy that's all we can wish for anyone. I cannot believe there are so many of us on here in the same position . love and hugs to all
x
 

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