Wheelchair user and ADT

[SimMartin]

ADTI have Gleason 9 which is organ confined and a PSMA showing no spread. Has anyone had radiotherapy but then also managed ADT but as a disabled person and wheelchair user with a lifetime of low muscle strength from polio or similar?The recurring theme is that without ADT the risk of recurrence is very high if not certain. At 70 and currently on bicalutimide 150mg for last 6 weeks (PSA now 2 down from 7)  but the decision around adding an LHRH prior and post radiotherapy is in question. Everyone seems to say the side effects re muscle loss etc is bad and only vigorous exercise can combat it. Obviously I am keen to act on best advice but it seems an unusual situation even for clinicians and I want at least as good a chance as anyone else without being reckless.

[Tall_Allen]

You are mistaking the side effects from long-term use from the side effects from short term (adjuvant) use.

[SimMartin in reply to Tall_Allen]

OK I was under the impression that with Gleason 9 18months to 2 years was the accepted ADT option and shorter term such as 6 months had a much poorer outcome than 2 years for recurrence and disease free survival.

[Tall_Allen in reply to SimMartin]

I am responding your comment: "Everyone seems to say the side effects re muscle loss etc is bad and only vigorous exercise can combat it. "

[jazzy53]

I am sorry that you haven't received informed advice about your situation. I had two years of ADT along with two months of radiation for my GL 9 diagnosis. I experienced quite a bit of muscle loss, but it all came back in the year after I was done with ADT. (It took about that long.) But I exercised vigorously and am not disabled. Polio may have compromised your pelvic muscles -- putting you at a disadvantage for the return of muscle tone. I don't know this to be true, but it's a valid question to ask and can understand why this figures into your treatment decision. I would consult a specialist at an academic medical center who really understands polio and its implications. I doubt your urologist or oncologist does.

[SimMartin in reply to jazzy53]

thanks for your reply jazzy … it’s not unusual for me to not get responses, even when they come they are well meaning but not cognisant of my issues.

I am afraid polio is now a rare condition so very few specialists in know more than me (without being boastful !) - so it’s down to me to research and present to the oncologist and the treating physicians. So I guess I was hoping to get an idea of the mechanism of the risks especially in the areas where I am less able - ie I have much less muscle, but I can walk short distances even though in wheelchair - but is walking effective enough as most mention weights ( out of the question as my arms and upper body have minimal muscles) or o here some say / I can’t do my 2K run only half …

Also I know that ADT has cardiac risks but not many report this or is they have cardiac or respiratory issues before treatment . Same with osteoporosis impact (though I’m not sure where I am yet as awaiting DEXA scan)

So thanks you’re right about discussing with physician but it is complex - I’d be more laid back if it hadn’t turned into Gleason 9.

[jazzy53 in reply to SimMartin]

It did occur to me that finding a physician who is knowledgeable about polio could be difficult given the rarity of the disease in the U.S. today. You might look for physicians who treat patients with post-polio syndrome, since that afflicts people who contracted polio decades ago before vaccination was widespread. An alternative might be a really good neurologist. I feel for you. Good luck with everything.