Have any of you considered having a date-specific (e.g., your 80th birthday) cutoff for discontinuing active treatment?
I see this as a philosophical, rather than medically driven, question. It's been on my mind a lot lately and I wondered if others in this community have considered it. I have been growing increasingly unhappy about the prospect of never again having a decent nights' sleep, about continuing to develop heart and metabolic issues due to my drug regimen, about the effect of ADT on my libido, about developing an unsightly and unhealthy girth that I've been unable to reduce--you all know the list. I've been asking myself: at what point will I feel that I have few enough years remaining, that stopping treatment will not result in a dramatically painful end? In other words, if I stop treatment and my cancer (currently pretty much under control) flares up, the cancer growth impact won't be that significant because I'm likely to die before a lot of damage is done.
Part of the motivation for this thinking is that I recently met a physician who was diagnosed with PCa in his 60s, looked at the effects of treatments, and made the decision to not accept conventional treatments. He was a physically active man, who went on long walks daily until the day before his death, at age 92. He said he did develop pain, mostly from bone mets, but felt that avoiding SOC was on the whole much better for him than all the side-effects of treatment he would have endured not only for years, but especially toward end-of-life.
A secondary question, for those of you who have contemplated this approach: What's your personal measurement of the age at which you'd quit treatments? 5 years before your estimated end of life? 10 years? Or some other measurement (perhaps a child's wedding, a grandchild's graduation, or some other event)?
Thank you in advance for your thoughts
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LifeQuality
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What a good question & I look forward to some answers here.Personally my ideal time would be 85 to fade away because I do not want to end up in a nursing home like my mother at 90 years.
Your argument is persuasive. And I wish we all had the knowledge and insight to choose like the doctor did. But we don't. Prostate cancer got me and the treatment got it 18 years ago. But since then three other cancers and lung problems have brought me way down; plus neuropathy and spine problems hurt and limit activity. But as I enter my 83 year I've got so much to do, so many things I enjoy that I just can't contemplate giving in (or giving up). Mother made it to 99 and her mother made it to 104 so I have hope that most of what I plan on doing will get done. When I find time to sit down and start reading all those books I intend to read, maybe I'll be ready to give consideration to your concept.
Your friend was lucky. I've known guys who refused treatment and wound up in excruciating pain. It is a failure of imagination to think that you will always have the same QOL. Those medicines you are thinking of rejecting not only increase survival, they also have been proven to increase QOL.
It’s a tough question . How can someone throw in the towels planning in advance . It’s not possible to see the future . We face it as it comes . I do understand thinking that I’m not going to do any more SOC . I think about that . I’m on adt seven yrs without a break . No pc no Psa .. will this last ? No one knows ! But , we do know that #4 will always return given the time . The doctors story is just one guy. I wouldn’t hinge too much on that now . Maybe hit the adt .? If it works you might slide by again ? That’s what I d do . Nobody wants end stage APC .
I want to thank all of you who commented on my "philosophical question". I especially appreciate the thoughtfulness in each of your replies. My Mother became ill on a Wednesday, and died that Friday, 2 days later. I began to realize how lucky she was/we all were, when I saw more and more of my friends whose parent or other loved one endure a long, and often painful, decline. I am currently 77, and I expect I have a good 15 years more ahead. We'll see how it goes....
Your questions are good... but to give a philosophical question even further of a philosophical bent, why would you even care in chronological terms when the "right time" might be?
The Western mind is totally obsessed with the keeping and measuring of time, and of imparting arbitrary and outsized significance to supposed "milestones" that we always seem to measure in tens. Is there anything objectively significant about the ages of 50, 60, 70, 80 or 90? Of course not! These numbers are imparted a subjective cultural significance, and then we behave rather absurdly as if there is some meaning to them beyond the meaning we ourselves have arbitrarily given. There's not!
But even as I realize this is true, can I myself escape it? Not in the slightest. It's thoroughly ingrained in my thinking as "real."
If one of us were to leave our fat and happy easy-chair lives (aches and pains and insomnia notwithstanding) and live with some tribe in the bush, how strange we would find them if they recorded the "milestone" ages as only 33, 66 and 99 (with nothing else mattering)... or as 52, 65, 78 and 91... or as 8, 16, 24 and 32 but with no other ages having any significance until (and if) an individual reached 96. And to them, how strange would WE be? (Expecting beds and furniture and three meals, no less.)
Now, when we consider the man who was diagnosed with PCa, who looked at the effects of treatments, and made the decision to not accept conventional treatments... what does his chronological age really have to do with such a decision? It is the life events themselves, the perceived present and future well-being, and not the precise age at which these events and perceptions occurred, that matter most. Our mind-made numbers, of time and age and costs and calculations, are just an extraneous overlay on top of the essential reality underneath
My reality: I worked, married, fathered and supported three children, and the youngest just graduated college and is officially out of the nest. Can I be "all done" now, if I have to be? I can.
Would I like to be around to see that youngest daughter marry? Have children? Have her children graduate? Have her children marry and have children? Of course I'd like to be around for all that! But by "I" I'm meaning as the man I still am, more or less: intact, mobile, and relatively pain-free. As an invalid? Probably not... but I can't answer that until I get there. I'm betting I'll end up putting up with more decay than I currently think, or say, that I will.
I see no reason to put a date on it, or on me. I would fear that might be self-defeating. Either I'll get depressed if and when my goal seems too out of reach, or perhaps I'll meet my goal too easily, and wonder, now what?
I will tell you something I've done once or twice that is very satisfying, and that I find very humorous, but totally not sustainable. As a 61-year old last year, I would pretend I was 71, or even 81, and then think to myself how lucky I was to still be alive and be in such good shape. And that is why I bring up the arbitrary nature of our numerical-age expectations. Do we feel like failures if we do not expect to make it to a certain chronological age, or that we are letting our friends and families down by dying "too soon" simply based on the numbers we have in mind? Well, I do! That is, I do if I let myself.
Now excuse me, while I pretend it's my 100th birthday and I pat myself on the back for still, at this ripe old age, being able to stay up 'til midnight and peck away on the desktop keyboard with only a LITTLE bit of pain in my arthritic fingers.
I don't see myself as having in mind a fixed date to stop treatment, or even a preconceived idea of what standard of QOL would trigger such an action.Although I still plan my life ahead like any other 'normal' person, when it comes to my cancer, I just take it one day at a time. I believe there will come a day when I wake up and think 'I don't want to do this anymore', and I won't.
Quit all treatments when they failed to slow down the aPca. Now starting a BAT regiment to see how that works... should feel better even if it doesn't stop the cancer.... Nal has a modified BAT that I want, but haven't talked my MO into it yet... Seeing him soon..... Life Is Good at 72 and I feel better than I have for the last couple of years....
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