Bowel cancer - surgery or not?

Discussion in 'Middle - later stages of dementia' started by KingB, Jun 2, 2016.

  1. KingB

    KingB Registered User

    May 8, 2011
    Looking for opinions and/or advice on the following:

    Mum lives in a nursing home. She has Alzheimers, she is happy and chatty when we visit, but I understand from the carers that she increasingly spends time in her room and gets very upset as she misses dad (who died last year). She is declining food a lot and hardly eats at all - she has dropped about 30lb since Christmas. She is able to walk with a frame but gets out of breath and faint. Recently she has been diagnosed with cancer of the colon. The tumour has probably been there for a long time but has now been found after investigations re anaemia, discomfort, and the not eating issue. We are told that she lacks the capacity to legally consent to surgery and that (if she is deemed fit for an op) it will come down to a best interests decision. She herself is very gung-ho and keen to have an op - but I think her self-image is of a younger and fitter woman. She does not retain information easily - and forgets what the doctors have said immediately after it has been said. I worry that she would not be able to follow instructions in hospital, nor be able to provide them with information about her well-being.
    My worry is that it would be a major operation and could leave her worse off than she is now both physically and mentally, and I think it would be better to go the palliative route and let nature take its course (quality of life over quantity). We don't know whether there has been any spread or not.
    Does anyone have any opinion or advice they could offer me, anyone been through this situation? I don't want to lose mum but I also don't want what time she has left to be ruined. My thinking goes round in circles a bit and I don't know whether my fears are realistic.
  2. marionq

    marionq Registered User

    Apr 24, 2013
    My mother had bowel cancer and lived for 15 years after the op. Sadly she did not enjoy those years and said she felt like a freak because of her colostomy. It was a huge shock to her but your mothers dementia may make her less aware what is happening. Difficult decision.
  3. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    I have some personal knowledge which may be helpful. My Mum is in the late stages of AD / VasD and was thought to have bowel cancer last year (she didn't). My Dad has also been successfully treated for very early stage bowel cancer.

    What Mum's doctors said to us very clearly was that if Mum had bowel cancer it wouldn't be in her best interests to go through an operation to remove it. Mum fiddles with everything, can't remember instructions at all, doesn't understand consequences. She is doubly incontinent. Regardless of the health and mental functioning downturns likely in the immediate aftermath of an operation, Mum probably wouldn't have survived the recovery period because she'd pull at her stitches and / or colostomy bag.

    Dad's bowel cancer was caught at the earliest stages but he still had to go through the process of post-operative injections, coping with digestive upsets, making himself eat when he didn't really feel like it ...

    It might ease your mind a little if you wrote down how your Mum behaves now and how you'd expect her to cope in the aftermath of a bowel cancer operation with issues like leaving the stitches alone, keeping clean, taking medication to manage pain or infection, etc.

    When you've got these issues straight in your own mind, I'd suggest you then ask for an informal discussion with the consultant managing your Mum's care, to determine how difficult everything would be in your Mum's case and what the prospects are for a fairly lengthy period of quality life after recovery. A formal best interests meeting may well be necessary later but I think you'll be happier if you get good enough information to guide your thinking ASAP.
  4. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    That's an extremely difficult decision. I personally think that the surgery would cause an enormous amount of problems and result in a decline. You are right to worry about the aftermath. If your mother cannot handle instructions now, she would most likely be worse after general anaesthesia.

    We declined cataract surgery for my mother, but that is not a life or death issue. But I think, if I were in your position, that I would go for the palliative care route. In fact, I know I would. We have even decided that my mother will not be moved from the nursing home to the hospital, but simply kept comfortable, regardless what happens.
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    I agree that major surgery is likely to be a big setback. However a bigger consideration is the aftercare and as a previous poster said, the bag and the recovery. It is such a hard decision and personally I don't think I would go for it, my thoughts are with you
  6. gringo

    gringo Registered User

    Feb 1, 2012
    #6 gringo, Jun 2, 2016
    Last edited: Jun 2, 2016
    I feel for you, such a difficult decision. You don’t say how old your Mum is, this needs to be taken into account.. Have you asked the surgeon what the prognosis is if no surgery is carried out?
    I believe it is generally agreed that major surgery on a PWD will accelerate the dementia, it certainly did in my wife’s case.
    Once all the post op. problems are dealt with, the stitches etc., which can be prolonged and get very complicated, you are left with the colostomy bag. That in the context of dementia can be a nightmare. The PWD may well not understand what the bag is and will often remove it, so you are committed to unending vigilance. You always have to get the agreement of the PWD before you can change a bag, and, understandably, it's not always given. Of course, when you read some of the posts dealing with full-blown incontinence, you may come to the view that a colostomy bag can, unbelievably, be easier to deal with. For me the jury is still out on that, anyway, not every PWD becomes incontinent, but a colostomy bag is usually for life.
    This must all sound brutal, and i am sorry for that, but it is a brutal business. I wish that I had discovered TP. and had been given these facts of life, rather than having had to learn them by myself. So, take the level of care that has to be provided very seriously. It must be a major factor in your decision.
    I should also point out, the importance of diet. Constipation has to be avoided at all costs. It's also best to try and avoid diarrhoea, although that is merely a nuisance.
  7. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    My mum is in the early stages of dementia (24/30 on her last MMSE a couple of weeks ago) and has been found to be anaemic. This may as a result of her diverticulitis which was discovered about 3 years ago pre-diagnosis of dementia, or it may be something more serious. Prior to the GP coming out to see her I broached the subject with her that this might be 'something sinister '. She immediately piped up with "Do you mean cancer?". When I said yes, I do mean cancer and what would you do if it was, she asked me how old she was. I told her she was 85 and her response was "Well, in that case I think I would just let it kill me". She then backtracked a little, saying she still got a lot of pleasure out of life.

    I can't imagine how my mum would cope with the preparation for a colonoscopy, let alone surgery, hospital stay being cared for by nurses with little or no dementia training, and the ongoing management of a colostomy bag.

    And if she did, what would it be for? So she could have the privilege of dying from dementia? I apologise if that offends anyone - I haven't witnessed a parent dying of cancer and I may be being a little naive, but I have witnessed a parent dying of dementia.

    I am a strong believer that quality of life is more important than quantity, and I feel I now know my mum feels the same - not that I ever doubted it.
  8. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    #8 Linbrusco, Jun 3, 2016
    Last edited: Jun 3, 2016
    I am sorry to hear about your Mum.

    My Mum 75 was diagnosed with Chronic Lymphocytic Leukemia mid 2011.
    This was in the very early stages of Mums dementia.
    She is on 3 mnthly blood tests, with no active treatment as yet.

    End of 2012, losing weight rapidly and off her food, after having a CT scan, and two colonoscopies, Mum had a cancerous polyp on her lower bowel.
    Mums dementia was progressing, but no formal diagnosis.
    Mum was all for surgery, but not really aware of what was going on or the potential outcome of her surgery. We were not warned that a GA could hasten Mums dementia.

    Mums recovery was hampered by the fact that she could not remember any post op restrictions. She had quite a period of diarrhea and then constipation, which she found distressing.
    Her stitches became infected, and took a lot longer to heal because of her Leukemia. Thank goodness she didn't need a colonoscopy bag, as she would not have been able to manage self care and neither would Dad. Thankfully it was caught early and no further treatment required.
    Post op checkups and physical exams she found distressing also.
    Her first 2 yr colonoscopy I declined, as she would not have coped with the pre op diet, enemas, and fluids required. She has a yearly blood test for a Carcinogen marker, and I watch her diet, weight and change in bowel habits... somewhat hard, when I don't live with Mum. Dad is no help here.

    By mid 2013, Mum was diagnosed with early/mild stage Alzheimers.

    Mum now has had an assesemnt and is at moderate stage of AD. She no longer has mental capacity to decide health decisions, and I have POA for health & welfare.
    If Mums leukemia worsened or bowel cancer resurfaced I would have to think long and hard about surgery/treatment and quality v quantity....
  9. KingB

    KingB Registered User

    May 8, 2011
    Thanks everyone - that is all really helpful. I think my instinct is right and that for mum to have surgery would carry a high risk of leaving her significantly worse off.
    I forgot to mention age - she is 80, having been diagnosed with Alzheimers and moved into care at 75. From what I have heard ages is not an issue for bowel surgery but fitness is. I don't think she has the reserves now to recover well or quickly - and long-term the colostomy bag would be an increasing problem. She is in a nursing home and they have said that of course they would manage the bag for her - but would she remember that or might she try to deal with things herself.

    She has had bad anxiety and psychotic incidents in the past (particularly with disruption of moving from residential to nursing home) - so it seems reasonable assume that the op might disrupt all the marvellous work the CPNs and the carers have put in to stabilise her mood and keep her on an even keel.

    She can be very "with it" in the moment still and the worst thing in all this is that she told me that she wanted me to know that she wants all treatment possible and that she wants me to know that so that I can say it if she can't say it at any point. I've been very conflicted between what I believe to be right and what she has told me she wants. It wasn't until last night, after having a read through the responses, that I had a light bulb moment. There is no reason why I have to agree with her: I have an obligation to pass on what she has told me about wanting surgery, but I can keep that separate from my own point of view and can still express my own independent point of view.

    Thanks everyone for being so helpful and for sharing your own experiences and thoughts. I know that without surgery the cancer will kill her - but nobody can know the timescale nor the specifics of how it will be, but I am hoping that is the way it will go and that palliative care will keep it as easy on her as possible.
  10. Soobee

    Soobee Registered User

    Aug 22, 2009
    Having witnessed both my dad dying of lymphoma and mum dying from her dementia then I'd say that the cancer death was 'easier' from the perspective of knowing that the parent was receiving pain relief via syringe driver (but not when it ran out and the nurse was trying to tell me it was still going when clearly it wasn't!) but a lot harder from the point of view of agitation. Dad understood he was saying goodbye and the morphine seemed to give him problems with hallucinations etc.

    For my mum I could not tell if she had chosen not to eat or drink. I did not know if she was suffering except that they'd "run out of the moistening sticks" and her mouth was so dry. She had no pain relief but I couldn't tell if she was in pain. She seemed to just slip away.

    So there's my personal comparison. In answer to the original question I wouldn't recommend surgery but my mum didn't want it anyway so the decision was easier.
  11. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    I'm not a PWD but I have had a cancerous polyp removed during a colonoscopy 3 years ago. They thought they'd got it all out but did give me the option of surgery to remove a section of bowel and the lymph nodes. I decided not to have surgery and so far I'm OK. What I want to tell you is that the surgeon should put in writing what the two options are and the benefits and risks of each. In my case, I was told that without surgery there was a 5% chance that there were still cancerous cells still there. But the risk of death during or after surgery was 5-10%. You need something like this in writing to help you decide.
  12. KingB

    KingB Registered User

    May 8, 2011
    That's interesting about having the options in writing. I hadn't even thought of that. They just seem to rattle through the best case scenarios and reassurances verbally, barely mentioning the risks. You are absolutely right - it would really help to have something like that in order to make proper comparisons and weigh the risks and benefits. I wonder why they don't do it - maybe because to do that accurately for each individual case would take more time than they have available. And perhaps they are wary of putting things in writing in case of legal issues.
    We now have an appt with pre-op team and anaesthetist for assessment - so we should know more soon I hope. It all feels so wrong though to be putting her through the process when its unlikely it will be viable anyway. I guess the blessing is that she remembers nothing so it isn't conciously bothering her at the moment.
  13. Not so Rosy

    Not so Rosy Registered User

    Nov 30, 2013
    My Dad who is 89 has Alzheimers plus FTL Dementia and was diagnosed with a large tumour in his bowel in December. There was a Best Interests meeting plus I was asked for my views. It was agreed the Palliative route was the way to go. Both the hospital and the Palliative care team from the local hospice contacted me within days of diagnosis with how we would go forward.

    No way is Dad fit enough or compliant enough to undergo major surgery, I just couldn't put him through it.
  14. Rich PCA Carer

    Rich PCA Carer Registered User

    Dear Not So Rosy, I think you have made a very good call for your father. The medics clearly think so too. I wish you strength.

    Sent from my iPad using Talking Point
  15. KingB

    KingB Registered User

    May 8, 2011
    We had meeting with pre-op team and then anaesthetist yesterday.
    Pre-op nurse was still presenting it as a done deal and even gave us the info pack and bodywash for before admission. This after mum had pretty much fainted when she was standing up to be weighed and measured. I know the nurse has to follow protocol BUT she was still quoting "home after 3 days or maybe a little bit longer, and six weeks to get back to current levels. She was telling mum "don't worry we will take care of you". I tried to point out this was still investigating the possibility and nothing was certain but this nurse was having none of it. In this case it doesn't matter really because mum does not remember a thing about the meeting - but my brother and I were rigid with horror and convinced they were about to admit her.
    Then we went through to the anaesthetist and finally got the voice of sanity. She said that at present she would not clear mum for an op anyway due to the nutrition issues, but she spent a long time explaining the higher risk for mum (20% who are very frail like mum don't survive, 70% have significant problems and downturn - so really there is only a 10% chance of overall benefit). She said she will double-check with surgeon (in case he thinks there could be imminent perforation which would change the balance of risks) but in her opinion it may be that the tumour doesn't grow to problematic size within mum's lifetime. She said that since mum is so settled and happy at her NH and is not having any significant problems other than anaemia it would not be a good idea to put her through a massive operation and that there was a high risk she would never get back but could be stuck in ICU long-term. Whereas mum had been agreeing with the "have an op" option in the past, in this case she agreed that it was better to leave things be. Which is a massive relief for me as it really indicates that all along she has been reacting to the positives and saying "yes" by default. She says that she wants to live as long as she can, and from this meeting it was clear that an op was not necessarily the way to achieve that.
    Thanks everyone for the advice - thought I should update you. I am so relieved she won't have to go through massive surgery and the aftermath, and the anaesthetist mentioned various far less invasive measures that could be taken to keep mum comfortable if and when needed.
  16. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    That sounds like the best outcome. Thank goodness for that anaesthetist - seems to be the only one with common sense.
  17. FrancoD

    FrancoD Registered User

    Mar 12, 2017
    My mum is 85, has Alzheimers and just been diagnosed with bowel cancer. I don't want her to suffer and also don't feel her quality of life would benefit from surgery or the effects surgery would have on her. I'm wondering what would be mum's life expectancy (without surgery). I noticed you posted this in 2013, do you mind me asking if your Dad is still with you or if not, how long did he have after diagnosis? Best wishes. F
  18. FrancoD

    FrancoD Registered User

    Mar 12, 2017
    How long can someone live with dementia and bowel cancer?

    My mum is 85, diagnosed with Dementia (Alzheimers) about 2 years ago. She has just been found to have bowel cancer. These posts have been very helpful to read others' experience with similar questions and concerns. What I'm struggling with is how long might she live (without surgery) if this cancer progresses at an 'average' pace? More than anything I don't want her to suffer and I would rather see her have a better quality but shorter rest of life than a prolonged one in distress and pain. Ten years ago, my father died over a prolonged period and that was awful for him and for us.
  19. oilovlam

    oilovlam Registered User

    Aug 2, 2015
    South East
    FrancoD, probably the only person who can advise you is the consultant in charge of your mother's case. Although you may want to talk to an Alzheimer specialist to discuss the different options the colorectal consultant gives you, there are probably implications that are specific to dementia that could be important in making a decision.

    Personally I didn't think my father could cope with a colostomy bag, which was a risk, even if that risk was small.

    My father had a growth removed using a 'lasso' technique (sorry I don't know the exact name of the technique) but it returned, at which point we had to decide whether to try more invasive surgery. The consultant - who actually had to make the decision for my father - found it difficult to decide because he was ultimately a surgeon and ordinarily he would operate but he also had to consider the risk of a colostomy bag. In the end he said that he wouldn't operate and suggested 5 years.....but no guarantee.

    My father didn't make the 5 year target for other reasons (he had 3 quite good years) but I could see that the bowel cancer (a polyp) was going to be more problematic and I expect things would have got a lot more stressful for him & the family. So in a way it was a relief that he didn't go that way....although I would still want him back.

    Only the consultant can give you a guesstimate on how long without surgery. There are different locations and types of cancer....some are less aggressive than others.

    I hope things go well for you.
  20. carpe diem

    carpe diem Registered User

    Nov 16, 2011
    Hi, I'm really pleased you got a sensible answer from the anaesthetist.
    I had colon cancer when I was 43. I believe I had had the symptoms for 4 years before I went to the doctors.
    As my tumour grew it twisted my gut and caused a lot of pain, especially when going to the loo. So surgery became necessary. I couldn't eat for about 3 months and there were times I wishes I was dead. My recovery was slow and exhausting. I can't imagine someone older with dementia getting through what I did and that was without chemotherapy.
    From my point of view I would just say try not to force food into your mum and look out for signs she may be in pain. I do believe there are fates much worse than death.
    I do wish you all the best. X

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