3 ms·

Good read. Been through exactly this with my father. Obviously no causality, he could have started dementia without the treatment, but gives some backstory to w

by wjnc 10y ago

Good read. Been through exactly this with my father. Obviously no causality, he could have started dementia without the treatment, but gives some backstory to what my family went through. One important point is that the hormones probably add more life than they take. You don't start on hormones AFAIK before they figure they can't cure you anymore. It's then about prolonging life. First to admit that dementia is horrible as well, but for most patients a risk worth taking. Further reading: -99% survival in 10 yrs regardless of initial treatment in the dataset (in article)? -It seems there is a subset where ADT is first treatment. That is at odds with what our oncologist told us iirc. ADT prolonges, but does not cure. Makes some sense to prescribe ADT if alternatives are too heavy, but that is at odds with the 99% 10 yr survival. As an actuary: only children have 99% 10 yr survival (guesstimate). Went to the article. Not paywalled (nice). They include common logic comparisons and stuff. Love the approach to text processing. But no basic data tables? Death should be really common when studying 60-70-80 yr olds. Gleason score mostly 6 or higher. That gives you a 30%+ baseline of dying (ballpark, Google). Next thought: data gathering conditional on survival. Only if there is a follow-up, you can be included. That still makes sense re the study (relative chance of dementia), but makes interpretation harder. It's an analysis in one branche of the probability tree. ADT might make your dementia chance 100% if nothing else kills you first. Still a nice study. Just don't think of this if you've just been diagnosed. Draw the entire tree. You need to survive first.

pfarnsworth 10y ago
My mother is suffering from dementia right now and my family is trying to deal with it. One of my closest friends is also dealing with this with his mother, who was just put into an institution where she can't leave the floor because she wanders. It's the cruelest disease, cancer is more merciful at this age.
- anigbrowl 10y ago
  I could not agree more. Not only is dementia horribly corrosive for the family, it's frightening and confusing for the patient in most circumstances. By far the most depressing cases I dealt with as a nurse's aide were those patients who were still physically healthy and strong but suffering from dementia, because they were the most likely to need to be manhandled if they wandered away or got into an altercation with the nurses. I still remember the fear and confusion in some patients' eyes 30 years later and have no desire to experience that.
pbhjpbhj 10y ago
>Draw the entire tree. You need to survive first. // Depends how soon the dementia follows. I'm not sure if living is so good with severe dementia. Actually, if it's very severe then you're probably OK - my mother has a complex dementia and her medical team have now found a drug regime that "works", unfortunately that makes her more lucid and aware, enough that she has become severely depressed. Looking in on her condition I think I'd find death a welcome end if it were me; there's a strong sense of being locked in. Whilst our instinct is to live on I'm not convinced that is always right.
- pavel_lishin 10y ago
  My wife and I disagree about what we'd prefer near the end of our life. I would much rather be physically infirm, but mentally lucid. She would prefer to be mentally gone, but physically capable. We both have family members who are suffering from one, or the other, or both at once; it's weird that we've come to such different conclusions.
  - mablap 10y ago
    A family member died from Alzheimers last year. She was both physically and mentally gone. If I had to choose, I'd go out swiftly like my dog, whose spleen fissured from cancerous growth and was put to sleep in the hour. Slow, agonizing death is horrible.
wavegeek 10y ago
The 99% 10 year survival would be disease specific. This is pretty normal for a cohort first diagnosed with PCa. Most are low risk low grade cases and survival is good. Other causes of death are usually orders of magnitude higher e.g 10-20% over 10 years at age 60-70+. Hormone ablation is mostly to buy you maybe a couple years of 'life'. I put 'life' in quotes because having experienced it I found it more like a living death - but your mileage may vary. People differ in how they prioritize length versus quality of life. Most people cling to life at almost any price, perhaps until the last few weeks they stop treatment. People even cling to the hope of life at almost any price. I have friends enrolling in "cancer trials" of some slight variation of a chemo drug that has very little if any chance of curing them. A recent study found that most men who died of PCa had some major, invasive, 'unpleasant', difficult, futile treatment in the last six months of life. The price of 'hope' can be high. People dying with cancer or other diseases often come under enormous pressure from the people around them to survive as long as possible. I have experienced this myself.
anigbrowl 10y ago
I'd rather die a bit earlier than lose my mind. I reject this fetishization of prolonging life at all costs, including dignity and autonomy. A good death is far preferable to a shitty life in my view; an ideology of survival at all costs is only suitable for slaves. Frankly I don't care for the notion of an autopsy either since my body is not anyone else's property, and if that seems a likely outcome I plan to take steps to prevent my own body being recovered. My first interesting job was in a nursing home so I've had ample exposure to end-of-life situations and living conditions. I've also had a disproportionate number of near-death experiences so this is a considered position rather than a mere posture.
- Dylan16807 10y ago
  > I'd rather die a bit earlier than lose my mind. That's a bit ambiguous. I assume you reject extra years that entirely consist of dementia. But what if you can have extra years, and only some of them will have dementia? > Frankly I don't care for the notion of an autopsy either since my body is not anyone else's property I don't understand what you mean by this at all. Doctors have looked and poked inside my body many times, and that never made me feel like property.

by wjnc 10y ago

pfarnsworth 10y ago

My mother is suffering from dementia right now and my family is trying to deal with it. One of my closest friends is also dealing with this with his mother, who was just put into an institution where she can't leave the floor because she wanders. It's the cruelest disease, cancer is more merciful at this age.

anigbrowl 10y ago
I could not agree more. Not only is dementia horribly corrosive for the family, it's frightening and confusing for the patient in most circumstances. By far the most depressing cases I dealt with as a nurse's aide were those patients who were still physically healthy and strong but suffering from dementia, because they were the most likely to need to be manhandled if they wandered away or got into an altercation with the nurses. I still remember the fear and confusion in some patients' eyes 30 years later and have no desire to experience that.

pbhjpbhj 10y ago

>Draw the entire tree. You need to survive first. // Depends how soon the dementia follows. I'm not sure if living is so good with severe dementia. Actually, if it's very severe then you're probably OK - my mother has a complex dementia and her medical team have now found a drug regime that "works", unfortunately that makes her more lucid and aware, enough that she has become severely depressed. Looking in on her condition I think I'd find death a welcome end if it were me; there's a strong sense of being locked in. Whilst our instinct is to live on I'm not convinced that is always right.

pavel_lishin 10y ago
My wife and I disagree about what we'd prefer near the end of our life. I would much rather be physically infirm, but mentally lucid. She would prefer to be mentally gone, but physically capable. We both have family members who are suffering from one, or the other, or both at once; it's weird that we've come to such different conclusions.
- mablap 10y ago
  A family member died from Alzheimers last year. She was both physically and mentally gone. If I had to choose, I'd go out swiftly like my dog, whose spleen fissured from cancerous growth and was put to sleep in the hour. Slow, agonizing death is horrible.

wavegeek 10y ago

The 99% 10 year survival would be disease specific. This is pretty normal for a cohort first diagnosed with PCa. Most are low risk low grade cases and survival is good. Other causes of death are usually orders of magnitude higher e.g 10-20% over 10 years at age 60-70+. Hormone ablation is mostly to buy you maybe a couple years of 'life'. I put 'life' in quotes because having experienced it I found it more like a living death - but your mileage may vary. People differ in how they prioritize length versus quality of life. Most people cling to life at almost any price, perhaps until the last few weeks they stop treatment. People even cling to the hope of life at almost any price. I have friends enrolling in "cancer trials" of some slight variation of a chemo drug that has very little if any chance of curing them. A recent study found that most men who died of PCa had some major, invasive, 'unpleasant', difficult, futile treatment in the last six months of life. The price of 'hope' can be high. People dying with cancer or other diseases often come under enormous pressure from the people around them to survive as long as possible. I have experienced this myself.

anigbrowl 10y ago

I'd rather die a bit earlier than lose my mind. I reject this fetishization of prolonging life at all costs, including dignity and autonomy. A good death is far preferable to a shitty life in my view; an ideology of survival at all costs is only suitable for slaves. Frankly I don't care for the notion of an autopsy either since my body is not anyone else's property, and if that seems a likely outcome I plan to take steps to prevent my own body being recovered. My first interesting job was in a nursing home so I've had ample exposure to end-of-life situations and living conditions. I've also had a disproportionate number of near-death experiences so this is a considered position rather than a mere posture.

Dylan16807 10y ago
> I'd rather die a bit earlier than lose my mind. That's a bit ambiguous. I assume you reject extra years that entirely consist of dementia. But what if you can have extra years, and only some of them will have dementia? > Frankly I don't care for the notion of an autopsy either since my body is not anyone else's property I don't understand what you mean by this at all. Doctors have looked and poked inside my body many times, and that never made me feel like property.