Hello, fellow warriors. Advanced, metastatic, Gleason 9, all cores, diagnosed 2 years ago but symptoms long before. High burden of mets everywhere (I think over 25). Only treatment to date is ADT with Zytiga. Close to 80 years old. PSA started rising a few months ago, and I'm now starting to have bone pain (and will have the painful mets zapped).
I'm beyond miserable on ADT and curious how much time I'd have left if I stopped treatment? (I know all the options for other treatments, but they all involve total suppression of testosterone, and I'm 'sick and tired of being sick and tired':-). Any idea of the typical progression for my stats? With no treatment other than for painful mets, how fast will this go? Are we talking years or months or weeks? Not looking for cheering (though I appreciate all the wonderful positivity here and respect those who mount a fierce battle) - just a realistic assessment so I can evaluate my options. Makes me feel better to know I COULD decide to stop, and to know what that might look like. Thanks, guys!
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jersy
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There are a lot of variables obviously, but a doctor told me you can generally live 1-2 years if you stop treatment. I would doubt you'll feel better with testosterone if the cancer is growing along with the pain. The problem is the quality of life with that level of bone pain is severely diminshed, and that time could be really bad like it was for me before I started treatment. All of the treatments we are doing are essentially palliative anyway so it's always a balancing act between side effects and benefits of treatment.
I listened to a discussion with several doctors and they were saying that the idea is to try to create as much quality of life for as long possible and have a fairly short time of decline at the end rather than a long, slow decline. This is what most patients prefer.
So I think if you take that approach and just try to find the treatments that will offer the best quality of life for the time you have left, that's all any of us can do.
Yes, live one or two years. But my specialist told me if i refused treatments I’d die soon a brutally painful death all in the pelvis like a woman giving birth. No thanks .
Thank you. I appreciate the response and suggestion. Will check it out.
If you are fit enough, I would also look into chemotherapy. I got decent pain reduction and improved quality of life overall during chemo. The side effects are mainly just the first week and tolerable for most. When I did it, I felt better after each cycle. You only have to commit to one cycle at a time so you could give it a shot and quit after one if you don't think it's worth it. It's not a big commitment. Just something to consider.
I turn 65 this mo. And am tired of being sick and tired too....i like you also waited too long..but got lucky with titan trial....fir now.. just want to say that spending what time we have in a constant search for " more time" ...can take away from the good days we have left...if youve done evrything you want in life...then chasing treatments could result in time well spent...but if theres stuff you want to do or see...i myself dont want to leave with any regrets..but sending you good vibes either way..cancer sux...b.w.
Like millions of other people around the world each year, we have experienced a life changing event ... i.e. paralysis, loss of limb, stage 4 cancer diagnosis, etc. We will never be able to go back to the life we knew before cancer so there is no point comparing that life with today. The best we can do is embrace our current situation (lack of energy, etc), adapt, and carry on. There is still lots of joy to be found in life. It's just not what we expected our later years to be like.
thanks. I respect your view, and we each must decide what is right for ourselves, but I believe every life has a natural end point, and prolonging that point at all cost is something I saw both my parents do, and I want no part of that. My parents' prolonged illnesses left the kids traumatized after putting their own lives on hold for years to care for them (physically and financially), totally drained their own finances so they were unable to leave anything for their grandchildren, and all for a little extra pain-filled time during which they were anxious and angry and underwent severe personality changes. There was no joy. I want my kids to remember me better than that.
I respect your views as well. My experience with elderly relatives was not as difficult as yours. Do you have medically assisted suicide available where you live? I am grateful that it is a legal option here in Canada for those who want it.
Hard to tell you when you let go. I figure hospice would let you feel good but leading up to that point might still be rough. The lesser of two evils might still be fighting.
Holey Moley jersy! I started this at 53 and I’m limping along six years later. I won’t see 80 my friend. In my early 50 it was a struggle .I can’t imagine at bear 80 the struggle. Your years of wisdom will lead you . I Say do whatever you want . Stopping adt will
Put the beast back
On your neck.. We will also reach the point of relenting yo nature’s course. Me personally I’ll try to stay out of end stage APC at all cost . Nobody wants to go there. Waking up on the wrong side of the bed for six years is I guess better than
Pushin daisies.. I don’t want to leave my loving wife alone..
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Thought I was holding it together 
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Just some thoughts - ugghh!
