PC spread to some lymph nodes; radiation, ADT. intermittent ADT

Posted by gkgdawg @gkgdawg, Oct 4 12:08pm

My husband has Prostate Cancer. PSMA showed microscopic spread to some lymph nodes near the prostate. He had 5 weeks radiation August 2025, and has had 17 months of ADT. HIs PSA has shown less than .1 since Sept 2025. He had a CTscan of his chest, abdomen and pelvis on Sept 14 2026. No pathologically enlarged pelvic lymph nodes , no suspicious nodules or metastatic spots in lungs or abdominal organs. He had a prostate MRI in September , 2026. No suspicious regional lymph nodes , no visible sins of tumour recurrence or spread. I have asked my husband's oncologist if he can stop his ADT for now and be monitored every 6 weeks or so. She was hesitant. She has never introduced intermittent ADT to a patient. Once they are on ADT they stay on ADT. He will have a baseline blood test this coming week and then go off the ADT. Has anyone else ever done this?

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

Profile picture for eky @eky

I’ve done a lot of research and it seems there is an unhealthy link between the pharmaceutical companies’ profits and the doctors and clinics’ unending use of HDT. What I can’t find is a legitimate study of the efficacy and outcome of HDT long term use versus short term or intermittent use and life span. Does anyone else harbor doubts about this? My husband’s oncologist said he would be on HDT for three months then, if his numbers dropped, he’d have five radiation treatments and then monitor every 6 months. His numbers dropped from 13 to .027 but she now says he needs to be on HDT for at least a year. My husband hates the medication’s side effects and wants off it. He’ll take himself off it if he doesn’t see some hard data. He is 73 and says he’d rather have a few good years than be miserable all the time for longer.

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@eky
I personally do not think that there is push in that direction since actually there are new announcements done in medical community and new research done about deescalation of ADT and even ARSI .

There are new recommendations for intermediate cancer patients (3+4 and even 4+3 without aggressive features ) and ADT during RT . New guidelines suggest that no ADT is necessary.

There are new studies done now for aggressive cancers and even metastatic ones where intermittent ADT is considered.

So I do not believe in any conspiracies.

At the end , every patient can accept or refuse taking ADT - it is definitely individual choice. Doctors are there to suggest and explain the reasoning and studies that show better results but patient can always say , no thanks , I will take my chances OR no thanks, I would rather die than take ADT 🤷‍♀️ OR I will take it 6 mos and see how it goes.

Doctors have to follow "standard of care" and standard of care is based on studies.

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Profile picture for surftohealth88 @surftohealth88

@soli
You are very welcome Soli and thanks so much for those most wonderful wishes for us - your words really warmed my heart today 💖🤗

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@surftohealth88

You are most welcome @surftohealth88 . We are so fortunate we are a community, warming each other’s hearts as we battle a challenging, but manageable disease.

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Profile picture for soli @soli

@surftohealth88
Thank you so much, @surftohealth88, for taking the time to share such a detailed response. I am truly happy that you were able to get both the consultations and treatment at some of the very best medical institutions.

Most of all, I am especially happy to hear that your husband received the treatment he needed and came through it without significant urinary or other adverse side effects. I know how important quality of life can be when making these difficult treatment decisions, and I am sure it was an important consideration for both of you.

I sincerely wish your husband continued excellent results, good health, and many healthy and happy years ahead for both of you.

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@soli
I am chiming in because Mrs. Surf's husband and I have shockingly similar stories and timing.
I ended up choosing the Estradiol Patch instead of Orgyvx or another ADT because I wanted to avoid the ADT side effects. I also chose Abiraterone/Prednisone instead of Nubeqa because STAMPEDE trial (men with high-risk, node positive, non-metastatic cancer) showed a benefit of adding Abi/Pred to ADT for 2 years.
Like her husband, I do lots of exercise (biking, weights) and feel very good. The only side effect I have is my incontinence (which was almost totally eliminated), has come back a bit, but it's not a big deal.
I consider both of us lucky and the beneficiaries of high quality medical personnel and treatment.
I thought you might appreciate hearing that there are many men with good outcomes. I hope that no matter which treatment you/your husband choose that you have minimal side effects and good outcomes.

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Profile picture for eky @eky

I’ve done a lot of research and it seems there is an unhealthy link between the pharmaceutical companies’ profits and the doctors and clinics’ unending use of HDT. What I can’t find is a legitimate study of the efficacy and outcome of HDT long term use versus short term or intermittent use and life span. Does anyone else harbor doubts about this? My husband’s oncologist said he would be on HDT for three months then, if his numbers dropped, he’d have five radiation treatments and then monitor every 6 months. His numbers dropped from 13 to .027 but she now says he needs to be on HDT for at least a year. My husband hates the medication’s side effects and wants off it. He’ll take himself off it if he doesn’t see some hard data. He is 73 and says he’d rather have a few good years than be miserable all the time for longer.

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@eky

I understand what you are saying. I found it frustrating when our doctor said, what is wrong with the ADT? I mentioned muscle loss, bone loss, potential cardiovascular concerns. She said His PSA is down, everything is in control. You have to take the bad with the good. " It was like saying to us. what are you complaining about? I have seen PCRI videos suggesting shorter time frames for ADT and they list studies below the videos. In one video, I believe Dr. Scholz said that there have been studies showing that the long term use of ADT's can be harmful to life expectancy. For certain, it impacts quality of life.

REPLY
Profile picture for surftohealth88 @surftohealth88

@eky
I personally do not think that there is push in that direction since actually there are new announcements done in medical community and new research done about deescalation of ADT and even ARSI .

There are new recommendations for intermediate cancer patients (3+4 and even 4+3 without aggressive features ) and ADT during RT . New guidelines suggest that no ADT is necessary.

There are new studies done now for aggressive cancers and even metastatic ones where intermittent ADT is considered.

So I do not believe in any conspiracies.

At the end , every patient can accept or refuse taking ADT - it is definitely individual choice. Doctors are there to suggest and explain the reasoning and studies that show better results but patient can always say , no thanks , I will take my chances OR no thanks, I would rather die than take ADT 🤷‍♀️ OR I will take it 6 mos and see how it goes.

Doctors have to follow "standard of care" and standard of care is based on studies.

Jump to this post

@surftohealth88

Well, we made the decision and yesterday, October 7, was my husband's first day without ADT. We will monitor and pray.

Glenda

REPLY
Profile picture for eky @eky

I’ve done a lot of research and it seems there is an unhealthy link between the pharmaceutical companies’ profits and the doctors and clinics’ unending use of HDT. What I can’t find is a legitimate study of the efficacy and outcome of HDT long term use versus short term or intermittent use and life span. Does anyone else harbor doubts about this? My husband’s oncologist said he would be on HDT for three months then, if his numbers dropped, he’d have five radiation treatments and then monitor every 6 months. His numbers dropped from 13 to .027 but she now says he needs to be on HDT for at least a year. My husband hates the medication’s side effects and wants off it. He’ll take himself off it if he doesn’t see some hard data. He is 73 and says he’d rather have a few good years than be miserable all the time for longer.

Jump to this post

@eky
You have some people that have very aggressive cases and in those situations someone may need to stay on ADT for longer periods of time, some even a lifetime. I have BRCA2 and I’ve been on it for nine years because without it, my cancer can grow even though some of it is castrate resistant.

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Profile picture for gkgdawg @gkgdawg

@surftohealth88

Well, we made the decision and yesterday, October 7, was my husband's first day without ADT. We will monitor and pray.

Glenda

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@gkgdawg

I’ll be thinking of you and your husband. My husband feels like the doctors haven’t been upfront about the indeterminate time needed on HDT and the subsequent lowered quality of life and overall health impacts. He won’t do HDT indefinitely regardless of the outcome of stopping it. He says it’s not worth it. We are waiting on his latest PET-scan. At 73 it’s sort of a damned if you do and damned if you don’t type of decision. We are in agreement the tipping point in his decision is quality of life over just checking days off a calendar.

REPLY
Profile picture for eky @eky

@gkgdawg

I’ll be thinking of you and your husband. My husband feels like the doctors haven’t been upfront about the indeterminate time needed on HDT and the subsequent lowered quality of life and overall health impacts. He won’t do HDT indefinitely regardless of the outcome of stopping it. He says it’s not worth it. We are waiting on his latest PET-scan. At 73 it’s sort of a damned if you do and damned if you don’t type of decision. We are in agreement the tipping point in his decision is quality of life over just checking days off a calendar.

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@eky
Totally understand your reasoning. Quality of Life is so often left off the table when many Doctors go over treatment options. Even when studies are completed, all the discussions go over Progression free survival (PFS), Overall survival (OS), Disease free survival, etc. A study might show a better percentage in a study say better OS or PFS of 93% to 86%, so clinicians say the new protocol is clearly better, however what they might not say is for those 7 additional people that benefit (in just their measurement terms) we will switch the protocol for all 100 percent of people we recommend this new protocol to, regardless of the hypothetical increases they may see in urinary incontinence or fecal incontinence as the Doctors see those as all manageable side effects that can be dealt with regardless of the impact on quality of life on all those supposedly now getting the better overall PFS or OS, even if it amounts to only one additional year of someone getting much older. These Quality of Life side effects get hidden down in the fine print of clinical studies and what gets in the summaries and conclusions and highlighted and talked about are those statistics . This is not to criticize anyone clearly wanting even one additional day , but for a loved one , one does want to take in a Quality of life in the golden years and not just also accept the Doctor saying yes, but if he experiences depression we can give him more pills for this and diapers for that and pills for this. My beef is unless you bring these quality of life issue's up and the importance to you, many are very content to just prescribe protocols that at a person’s age may not be what the person want’s, but clearly what the medical profession wants because it says OS and PFS is better by a small percentage

REPLY
Profile picture for eky @eky

@gkgdawg

I’ll be thinking of you and your husband. My husband feels like the doctors haven’t been upfront about the indeterminate time needed on HDT and the subsequent lowered quality of life and overall health impacts. He won’t do HDT indefinitely regardless of the outcome of stopping it. He says it’s not worth it. We are waiting on his latest PET-scan. At 73 it’s sort of a damned if you do and damned if you don’t type of decision. We are in agreement the tipping point in his decision is quality of life over just checking days off a calendar.

Jump to this post

@eky
Estradiol can be used instead of ADT and gets the same results but has a fraction of the side effects. I know a lot of people that have switched to it and they have felt so much better on estradiol.

You can go to the estradiolinitiative.org to get more information about it.

There’s a lot of videos about using it because it’s so much better for people with prostate cancer.

REPLY
Profile picture for wheel1 @wheel1

@eky
Totally understand your reasoning. Quality of Life is so often left off the table when many Doctors go over treatment options. Even when studies are completed, all the discussions go over Progression free survival (PFS), Overall survival (OS), Disease free survival, etc. A study might show a better percentage in a study say better OS or PFS of 93% to 86%, so clinicians say the new protocol is clearly better, however what they might not say is for those 7 additional people that benefit (in just their measurement terms) we will switch the protocol for all 100 percent of people we recommend this new protocol to, regardless of the hypothetical increases they may see in urinary incontinence or fecal incontinence as the Doctors see those as all manageable side effects that can be dealt with regardless of the impact on quality of life on all those supposedly now getting the better overall PFS or OS, even if it amounts to only one additional year of someone getting much older. These Quality of Life side effects get hidden down in the fine print of clinical studies and what gets in the summaries and conclusions and highlighted and talked about are those statistics . This is not to criticize anyone clearly wanting even one additional day , but for a loved one , one does want to take in a Quality of life in the golden years and not just also accept the Doctor saying yes, but if he experiences depression we can give him more pills for this and diapers for that and pills for this. My beef is unless you bring these quality of life issue's up and the importance to you, many are very content to just prescribe protocols that at a person’s age may not be what the person want’s, but clearly what the medical profession wants because it says OS and PFS is better by a small percentage

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@wheel1
You clarified exactly what our concern is and how quality of life is rarely addressed in treatment plans. QOL should be a parameter much like the other statistics. They are all variables. Thank you.

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