Weighing the cancer risk reduction & quality-of-life cost of ADT?

My case is somewhat comparable to yours: I'm 75. GGIII, (4+3), cT3b, SVI, Decipher score on order. I would have said I'm in excellent physical shape and excellent health. The RO is ordering RT. I don't know exactly what he's going to fry. The medical oncologist I saw recommends ADT for 2 years.

I'm agreeing to the radiation and starting on ADT. The oncologist seemed about to suggest Lupron, but I expressed enthusiasm for Relugolix (Orgovyx®). He agreed, saying something about he tends to suggest what he's been using for years as opposed to the latest shiny new drug. My drug insurance will very likely approve.

(I keep in mind that when I'm participating in one of these "shared decision making" treatment decisions, I am by far, the least informed person in the room. I wouldn't doubt that is the case here as well).

My thinking on the orgovyx is that it is a daily dose pill as opposed to an injection that lasts for months. So I can start on it and if I decide I'd rather face whatever increased risk is associated with only getting 1 month, or 6 months compared to 2 years of ADT in my case rather than live with whatever side effects I can't overcome somehow, I'll just stop taking the pills. I also liked the indications that it can be a much quicker recovery coming off orgovyx than recovering from the injections.

Whatever my fears about ADT are, I'm willing to go on it and see how it goes.

I like the aspect of ADT that it can stop prostate cancer from developing. I don't like hearing things, from one nationally known urologist for instance, who said: "ADT wrecks old men's lives. We all know that", when he was addressing an audience of urologists. I do like hearing about guys who are living with it and surviving well.

My husband still struggles with this, his was much worse stage 4 all over his body, PSA almost 300 back in February, he didn't want to do ADT but doctors (and me) convinced him, it was his manhood! He'd rather die, he said. But I pleaded that he's doing it for me, for the kids! I'd cut off my left arm to have him with me 10 more years! (and we're sort of anti medical stuff and have been for years and years so it's a lot to give up and trust the medical establishment)
He finally relented and goes to the gym every day, eats right but he's very tired and gets hot flashes and night sweats, like me- a late 40s perimenopausal woman! He did chemo over the summer too and if you look at him, you'd never know he had cancer, let alone terminal cancer "they" said 30% make it 3-5 years!
at the end of the chemo before his second pet scan, this pharmacist lady came into the room and said, if he hadn't done ADT and everything, he'd be dead by now!
I think the sweats and mood swings are actually "not a big deal" it's all mentally!
Just knowing he's medically castrated is a terrible thing for a man! Meanwhile I got my tubes tied and got over that quickly after having our last child, if I got breast cancer and had to cut off my breasts, I'd do it! It would be sad but I'd do it for the family!
Women's bodies change, they grow babies inside of them, then go thru monthly pains and mood swings and eventually can't have children anymore, the guys are worried about their manhood! It seems "silly" to me, I get it, but I don't get it.

@jrddaigle
Unfortunately, you are in a situation where your cancer may be worse than any treatment.

My father died of prostate cancer at 88. When I was a teenager, he had his teeth ground down and crowned without Novacaine, He had an incredible amount of pain tolerance. The last few weeks before he died, he was in so much pain that he had to be on enough morphine to make him incapable of communicating with other people.

That is what you’re facing since you have prostate cancer in bones and tissue. You may not like chemo, but you are not going to like dying from prostate cancer, Definitely worse than chemo or Lupron.

If you want to give yourself a chance to at least hold off the worst for a little while, you could ask your doctor about getting Nubeq alone. It works real well to hold down the prostate cancer, even if you have a lot of testosterone, and it has almost no side effects. I know a lot of people on their late 70s and 80s that are on it alone, And it works very well for them

I’ve been on it for three years and it works great. I have had prostate cancer for 16 years and have the genetic problem of BRCA2. My cancer has come back four times but Nubeqa Has kept me undetectable for the last two years. It doesn’t pass the blood brain barrier like Lupron So it doesn’t cause brain fog.

You tried it with Lupron And the side effects from that could be overwhelming, Nubeqa Doesn’t have those same side effects, It has very few if any. Maybe it can keep you alive until the next drug comes out.

Another choice you could make is to get on estradiol patches. The patch studies showed that estradiol patches work just as as well as ADT. They keep the testosterone down, but there are many fewer side effects. That would give you another option to allow you to live longer.

I’ve been on ADT for eight years, I’m 78 and have very few side effects from it. I took Lupron for six years And I’ve been on Orgovyx For 2.5 years. It has fewer side effects than Lupron.

One thing you have to know if you are on any drug that lowers testosterone is that you must exercise in order to keep the side effects for affecting you. I run on a track twice a day for 1 mile each and go to the gym three days a week. I never had fatigue and it keeps me in good shape preventing the side effects from getting to me.

It’s up to you, face an extremely painful death or get treated. You are so advanced that serious pain is not far away. That’s not what I would call “quality of life”.

@jrs619
I run on a track across the street, in a park, 1 mile twice a day every day. I go to the gym three times a week and spend an hour exercising pretty continuously with weights for arms and legs. I also do about 60 to 70 sit up every time I go to the gym.

For a long time, I could not run without falling. I had my left knee replaced about 18 months ago and after a year of recovery, I was finally able to run. I found running the quarter mile track Pretty much impossible, I could run halfway around and then had to walk halfway around, etc.. Then I started drinking electrolytes in the morning. I use liquid IV sugar-free right now, I found I could immediately run the whole mile without stopping. After doing that for about three months I found I could run around the track without stopping without the electrolytes because I built up my stamina, I wasn’t winded or tired when I was done. I sweated an awful lot, Almost definitely due to the temperature control problems with ADT drugs. Had To sit in front of a fan for about 10 minutes, with a towel around my head because I was dripping wet.
After going to the gym and spending an hour doing pretty heavy exercises, I would come home rest for about 15 minutes and then go to the track and run.

I have been on ADT for eight years and also take Nubeqa daily. I am 78 and have had PC for 16 years.

@jeffmarc Hi Jeff
I was wondering how have you been on adt so long. Doesn’t that usually wear off in 3 years or so ? I have stage 4 prostate cancer psa was 600. Started adt and zytiga 14 months ago. Psa has been 0.1 for the last 9 months
Thank you in advance