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

Posted by soli @soli, Nov 7 12:26pm

My first post-prostatectomy PSA test this week came at < .02 as expected. I will meet with my urologist next week. Given my high risk profile (T3b stage+ SVI+ Decipher score of .75) I expect my urologist to propose adjuvant radiation treatment of the prostate bed plus ADT. I have been thinking a lot about this and I would definitley agree with the adjuvant radiation treatment, but I am not yet convinced that the incremental cancer control benefits of ADT outweigh its potential harms (metabolic, cardiovascular, bone health etc) . I am weighing this in the context of my value system at my age (in the 70's): moving forward, quality of life is much more important to me than the absolute length of life. To put it differently - if say given the following two options : 7 or 10 more years with quality of life vs 15 or more years with debilitating side effects that diminish my quality of life - I would choose the former.

How did folks in similar situations weigh the potential incremental cancer contral costs of ADT vs its potential harmful side effects? Are you happy with your decision or is there anything that you regret? How bad and long lasting are the side effects of ADT?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for jeff Marchi @jeffmarc

@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”.

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@jeffmarc I absolutely appreciate your advice. I guess I do need to consider Nubeqa again. I was on it but stopped that as well…..

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Profile picture for jrddaigle @jrddaigle

Hello
I am 64, stage 4B, metastatic prostate cancer. I did 1 round of chemo (horrible), decided it wasn’t worth it and stopped. I recently made the decision to also stop Lupron and Nubeqa after 1 year.
So tired of hot flashes and feeling weak/unwell. I too prefer quality of life over longevity…..

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@jrddaigle

These are the question that we all face:

Do you maximize longevity at any cost of quality of life? Or do you maximize quality of life at any cost including suffering and death? Or is there some happy medium where you will seek to prolong your life but with manageable side effects ?

I believe these are very difficult questions with no one size fits all answer. The answers are very personal and depend on one’s life stage, goals, obligations and priorities.

I hope the discussions in this forum will help you make the best decision for you (or what I sometimes sarcastically call “the least bad decision”.)

I wish you all the best.

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Profile picture for soli @soli

Here is an update on my situation.
I met with my surgeon yesterday, and given my high-risk disease profile, we made a joint decision to monitor my currently undetectible PSA every three months and initiate an EARLY salvage radiation treatnent if the PSA exceeds a certain threshold. The other option also supported by the 2025 NCCN gudeline given my high risk disease profile (T3b, SVI, Decipher scorfe of .75 etc) was to do adjuvant radiation therapy soon. Each approach has its pros and cons, and we chose the former option to minimize the potential chance of unecessary treatment, to avoid subjecting a still-healing pelvic floor to radiation which will exacerbate incontinence and other urinary symptoms, and to preserve quality of life as long as possible based on my life priorities. The potential downside of the option we chose is to miss the "window of cure" by delayiing treatment, but we will try to mitigate that by chosing the right PSA threshold for triggering EARLY salvation radiation treatment.

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@soli My situation is very similar to yours. Since my PSA has been < 0.01 for two years straight since my RP, my surgeon and regular physician both believe in holding off on any additional treatments until my PSA goes up. Hoping and praying it doesn’t! Best wishes to you as well🤞🙏

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Got it! Since I have very high risk pathological (e.g. SVI, ECE etc) and genomic (GPS=47 & Decipher=.75) features, I have several options based on various standards that have not yet converged. Even though my first post-prostatectomy PSA is "undetectible", I am a candidate for adjuvant radiation and ADT treament within months according to some of the standards, or EARLY salvage radiation at a very low PSA increage threshold, or the normal salvage radiation approach after a substatnial PSA rise, scan validation etc. For now, I have chosen the EARLY salvage radiation approach, if and when it is needed.

I too wish you all the best which will include no BCR!

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Profile picture for scottbeammeup @scottbeammeup

@jeffmarc Can Fosamax be taken with food or beverages, i.e. my morning coffee with milk?

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@scottbeammeup
I was alendronate, the generic of Fosamax, for a short period. The directions I received were only water for two hours after taking the pill on an empty stomach. I cheated a bit by having tea at an hour and a half. I had no digestive problems with Alendronate. Due to poor results after a year of oral medication, my oncologist switched me to Prolia, an injection every 6 months.

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Profile picture for overage @overage

@scottbeammeup
I was alendronate, the generic of Fosamax, for a short period. The directions I received were only water for two hours after taking the pill on an empty stomach. I cheated a bit by having tea at an hour and a half. I had no digestive problems with Alendronate. Due to poor results after a year of oral medication, my oncologist switched me to Prolia, an injection every 6 months.

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@overage
I took Fosamax for six years. Would wake up a half an hour early in the morning and take it without anything but a little water. It worked quite well for that whole time. You take it once a week,

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Profile picture for jeff Marchi @jeffmarc

@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”.

Jump to this post

@jeffmarc
Hi Jeff not being too nosey I like to find out more about your exercise routine. Exactly what is your regiment. I’m about the same age also stage 4. If don’t mind maybe you could share Thanks

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Profile picture for jrs619 @jrs619

@jeffmarc
Hi Jeff not being too nosey I like to find out more about your exercise routine. Exactly what is your regiment. I’m about the same age also stage 4. If don’t mind maybe you could share Thanks

Jump to this post

@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.

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Jeff thanks for your quick response to my question. I have to say impressed and not just your physical accomplishments at your age but most your no quiting attitude. Keep up the fight. Thanks and God Bless

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Profile picture for jeff Marchi @jeffmarc

@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.

Jump to this post

@jeffmarc

Hi Jeff. This is very impressive given your age and long, successful fight against cancer. I believe this requires grit and determination and I hope it will inspire others like me who are at the starting gate of the long journey.

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