Treatment options: radiation without ADT?

Posted by jcultra @jcultra, Jul 2, 2024

Researching treatment options.
79 yr old, sexually active, good health
Gleason 4+3, PSA 12.91 (tripled within last yr), Testosterone 435, PSMA PetScan No metastases, Decipher .95
Radiation oncologist recommended radiation with 6 months ADT.
Is there data or anyone who has not taken the ADT?

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

Profile picture for coloradoboy @coloradoboy

I appreciate any intel on my current situation. First some background then my question:

I am a 67 year old athletic and otherwise healthy cyclist - and eat an organic diet with regular exercise. Diagnosed in Sept 2024 with a Gleason of 4+3, 3+3, and 3+4. Urologist who did the biopsy called with the results and immediately suggested surgery. I needed more data. PSMA scan in November 2024 showed no cancer anywhere including the prostate. Hmm. PSA has never been above 1.7 the past 9 years.

My family history is what gets everyone's attention - paternal grandfather died of prostate cancer, middle brother also started with prostate cancer then metastasized and he passed at age 71. Oldest brother who is 75 has prostate cancer and has abandoned medical treatment after chemo kicked his ass.

Along with my diagnosis my wife of 22 years wanted a separation and is now asking for a divorce. It would have been nice to go through this with a partner yet not the case so I'm navigating as best I can. My children ( 34, 18, and an 11 year old daughter) are supportive as best they can.

I consulted with a different urologist about having 4 months to try a supplement and dietary protocol to see if there might be a change in my status. All this while navigating some heavy emotional challenges plus financial as I was not actively making money at the time and instead I was in the role of stay at home dad running the household the past 9 years. When my wife decided to separate our joint finances it forced me to start to make money again. I had been a successful builder a decade earlier so went back to work as a carpenter. I was pleased how my body responded to hard physical labor.

I decided surgery was out and am choosing SBRT radiation with one of the best docs in Denver. At the end of my 4 month reprieve a second biopsy revealed nothing had changed regarding my Gleason score and my PSA remained the same. So off to have a second PSMA which also revealed no cancer outside the prostate or in it. This has confounded my doc so now I am going for a PET scan next week. BTW my Decipher was high enough to be a concern which is why the PET scan was ordered.

Along with SBRT my doc is insisting that I use ADT in conjunction with radiation. So here's my question: I work 35-40 hours a week as a carpenter - hard physical labor, carrying building materials, up and down ladders and staging, climbing on roofs - all things I easily did in my 30's and 40's. I'm concerned that Orgovyx will take away my ability to earn a living as I am currently working on two large projects that would take me into the winter. When I press my doc about that I get some decent pushback that it would not be hitting the cancer as hard a I could be by using Orgovyx. Would SBRT alone be sufficient?

Any insight is much appreciated.

My five SBRT treatments are scheduled for the middle of October.

Thanks again!

Jump to this post

Not Everybody produces PSMA, So the pet scan may not show anything. The thing is your biopsy definitely shows cancer. People who have no PSMA frequently have very low PSA scores because they also don’t produce PSA either.. About 10% of the prostate cancer patients have this problem.

The highest Gleason score is what is counted by the doctors, Yours is a 4+3 (7). The lower numbers don’t really matter When it comes to treatment options,, but how much cancer is in the 3+4 is important.

You didn’t include the detailed biopsy information, That is really critical to tell you what the best options are. What percentage of four was found in the core that had 4+3 also, how much of it had cancer?. Same with the 3+4. Are there any other things in the biopsy that are dangerous to leave alone? Were any of the following found in the biopsy, intraductal, cribriform, Seminal vesicle invasion, EPE or ECE.

In some cases, an FDG scan will show cancer that doesn’t produce PSMA.

Yes, ADT may cause fatigue. I’ve been on it for nine years and never had the problem, but a lot of people do. The thing is, you can overcome the fatigue by exercise and being active, which you will be doing if you’re working as a carpenter. With a 4+3 ADT is really important for long-term progression free survival.

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I had a similar score plus IDC, cribriform and other negative factors. Opted for SBRT no ADT. Quoting MD “ I’m not recommending ADT because the probable side effects are not worth the possible benefits”. I appreciated the brute honesty from a very well respected MD while all others were pushing ADT.

REPLY
Profile picture for coloradoboy @coloradoboy

I appreciate any intel on my current situation. First some background then my question:

I am a 67 year old athletic and otherwise healthy cyclist - and eat an organic diet with regular exercise. Diagnosed in Sept 2024 with a Gleason of 4+3, 3+3, and 3+4. Urologist who did the biopsy called with the results and immediately suggested surgery. I needed more data. PSMA scan in November 2024 showed no cancer anywhere including the prostate. Hmm. PSA has never been above 1.7 the past 9 years.

My family history is what gets everyone's attention - paternal grandfather died of prostate cancer, middle brother also started with prostate cancer then metastasized and he passed at age 71. Oldest brother who is 75 has prostate cancer and has abandoned medical treatment after chemo kicked his ass.

Along with my diagnosis my wife of 22 years wanted a separation and is now asking for a divorce. It would have been nice to go through this with a partner yet not the case so I'm navigating as best I can. My children ( 34, 18, and an 11 year old daughter) are supportive as best they can.

I consulted with a different urologist about having 4 months to try a supplement and dietary protocol to see if there might be a change in my status. All this while navigating some heavy emotional challenges plus financial as I was not actively making money at the time and instead I was in the role of stay at home dad running the household the past 9 years. When my wife decided to separate our joint finances it forced me to start to make money again. I had been a successful builder a decade earlier so went back to work as a carpenter. I was pleased how my body responded to hard physical labor.

I decided surgery was out and am choosing SBRT radiation with one of the best docs in Denver. At the end of my 4 month reprieve a second biopsy revealed nothing had changed regarding my Gleason score and my PSA remained the same. So off to have a second PSMA which also revealed no cancer outside the prostate or in it. This has confounded my doc so now I am going for a PET scan next week. BTW my Decipher was high enough to be a concern which is why the PET scan was ordered.

Along with SBRT my doc is insisting that I use ADT in conjunction with radiation. So here's my question: I work 35-40 hours a week as a carpenter - hard physical labor, carrying building materials, up and down ladders and staging, climbing on roofs - all things I easily did in my 30's and 40's. I'm concerned that Orgovyx will take away my ability to earn a living as I am currently working on two large projects that would take me into the winter. When I press my doc about that I get some decent pushback that it would not be hitting the cancer as hard a I could be by using Orgovyx. Would SBRT alone be sufficient?

Any insight is much appreciated.

My five SBRT treatments are scheduled for the middle of October.

Thanks again!

Jump to this post

@coloradoboy
Wow, You are going through a lot. I had 30 rounds of proton radiation and no hormone treatment. Those who had hormone treatments would be best to help you with their experience with hormone treatments and the questions you had on that.

Just be aware we are all different in what we experience from hormone treatments, radiation treatments and surgery. What one will suffer with another won't.

From my R/Os the hormone treatments don't kill cancer cells. What they do is starve them on testortorone (spell). Thus gives what ever your treatments you get a better chance of success as the cancer is being starved from growing.

If your Decipher was high then you have a intermediate or high risk and that usually sees a urologist and/or R/O recommend hormone treatments. I was originally set to have hormone treatments with my radiation treatments but my Decipher came back low risk and they dropped the need for Decipher.

What you are having to go through at this stage of your life, going through divorce, and have prostate cancer can be overwhelming. Reach out to your health care providers for both medical and mental health. Us on MCC are here all the time to give you our experience.

Just know I have been through a couple of divorces with my last one over 40 years ago was horrible stress. I have been happily married since 2001. Having prostate cancer at 76 was hard enough without divorce and financials issues.

I wish I could give you my experience with hormone treatments but did not get them. I do know I had very mild side affects from radiation but it never affected my lifestyle.

REPLY
Profile picture for billkmed @billkmed

I had a similar score plus IDC, cribriform and other negative factors. Opted for SBRT no ADT. Quoting MD “ I’m not recommending ADT because the probable side effects are not worth the possible benefits”. I appreciated the brute honesty from a very well respected MD while all others were pushing ADT.

Jump to this post

How long ago did you have this treatment? ADT can prevent reoccurrence for a couple of years if you have a high Gleason score, especially.

Was this MD that told you that you didn’t need ADT a Genito urinary oncologist? Having only SBRT with all of things you mentioned almost guarantees you will have reoccurrences. Progression free survival is greatly extended by having ADT.

REPLY
Profile picture for jeff Marchi @jeffmarc

How long ago did you have this treatment? ADT can prevent reoccurrence for a couple of years if you have a high Gleason score, especially.

Was this MD that told you that you didn’t need ADT a Genito urinary oncologist? Having only SBRT with all of things you mentioned almost guarantees you will have reoccurrences. Progression free survival is greatly extended by having ADT.

Jump to this post

SBRT was only 6 weeks ago. Treated by former Chief Resident of Radiation Oncology Mayo. I’ve researched the heck out of this and fully understand the risk. SBRT was MRI guided also utilizing Barrigel which I’ve learned is far superior to the old Spaceor. Read everything written here by you and others regarding the challenges but ultimately decided my body my choice.

REPLY
Profile picture for billkmed @billkmed

I had a similar score plus IDC, cribriform and other negative factors. Opted for SBRT no ADT. Quoting MD “ I’m not recommending ADT because the probable side effects are not worth the possible benefits”. I appreciated the brute honesty from a very well respected MD while all others were pushing ADT.

Jump to this post

When I was in your position I asked to have the various treatment options and likely outcomes explained to me. I was given links to the NCCN Guidelines and recent studies supporting each of the treatment options available for someone my age in a similar physical condition/life expectancy having the same NCCN category/Gleason score and confounding risk factors (IDC, Cribriform, EPE and .52 Decipher score, in your case). This made it possible to evaluate, for each treatment option, the median time to biochemical recurrence, cancer specific mortality and overall survival data. I could then weigh potential short term side effects during and/or after each treatment option and compare it to life without short term side effects due to treatment, but a much shorter time to the side effects which would likely result from untreated biochemical recurrence or the treatment of biochemical recurrence.

I walked in your shoes nearly 4 years ago when diagnosed with Gleason 9, EPE and cribriform. It was a frightening time to have to reach decisions that would dictate the quality, potentially both short and long term, and duration of life. The multidiciplinary team of doctors I met with at Fred Hutch/UW in Seattle provided the studies, data and links I needed to reach my decision to have RT (I chose to have proton) with 2 years of lupron + abiraterone. I had side effects many of which lasted approximately a year after completing ADT, but they certainly weren't debilitating. I continued to work as a contractor and we hiked, xc skied, mountain biked and kayaked with friends through the two years of treatment, although somewhat less frequently.

In the absence of comorbidities that would complicate your treatment decision, I hope that you have the data the doctor used to reach the conclusion that "the probable side effects and not worth the potential benefits." It is your body, your life and your choice. I hope you will continue to post so we can all continue to learn from and support each other. Wishing you continued success and happiness on your PCa journey!
Bill

REPLY
Profile picture for coloradoboy @coloradoboy

I appreciate any intel on my current situation. First some background then my question:

I am a 67 year old athletic and otherwise healthy cyclist - and eat an organic diet with regular exercise. Diagnosed in Sept 2024 with a Gleason of 4+3, 3+3, and 3+4. Urologist who did the biopsy called with the results and immediately suggested surgery. I needed more data. PSMA scan in November 2024 showed no cancer anywhere including the prostate. Hmm. PSA has never been above 1.7 the past 9 years.

My family history is what gets everyone's attention - paternal grandfather died of prostate cancer, middle brother also started with prostate cancer then metastasized and he passed at age 71. Oldest brother who is 75 has prostate cancer and has abandoned medical treatment after chemo kicked his ass.

Along with my diagnosis my wife of 22 years wanted a separation and is now asking for a divorce. It would have been nice to go through this with a partner yet not the case so I'm navigating as best I can. My children ( 34, 18, and an 11 year old daughter) are supportive as best they can.

I consulted with a different urologist about having 4 months to try a supplement and dietary protocol to see if there might be a change in my status. All this while navigating some heavy emotional challenges plus financial as I was not actively making money at the time and instead I was in the role of stay at home dad running the household the past 9 years. When my wife decided to separate our joint finances it forced me to start to make money again. I had been a successful builder a decade earlier so went back to work as a carpenter. I was pleased how my body responded to hard physical labor.

I decided surgery was out and am choosing SBRT radiation with one of the best docs in Denver. At the end of my 4 month reprieve a second biopsy revealed nothing had changed regarding my Gleason score and my PSA remained the same. So off to have a second PSMA which also revealed no cancer outside the prostate or in it. This has confounded my doc so now I am going for a PET scan next week. BTW my Decipher was high enough to be a concern which is why the PET scan was ordered.

Along with SBRT my doc is insisting that I use ADT in conjunction with radiation. So here's my question: I work 35-40 hours a week as a carpenter - hard physical labor, carrying building materials, up and down ladders and staging, climbing on roofs - all things I easily did in my 30's and 40's. I'm concerned that Orgovyx will take away my ability to earn a living as I am currently working on two large projects that would take me into the winter. When I press my doc about that I get some decent pushback that it would not be hitting the cancer as hard a I could be by using Orgovyx. Would SBRT alone be sufficient?

Any insight is much appreciated.

My five SBRT treatments are scheduled for the middle of October.

Thanks again!

Jump to this post

Your story is an interesting one and I think you would get better replies if it was in a dedicated thread.
That said, very low PSA, pc in your history and a twice-confirmed 4+3 Gleason would indicate to me that it is serious. If you are super fit, 6 months of ADT seems to be quite doable just based on posts by folks on this forum who are physically active.

REPLY
Profile picture for ozelli @ozelli

Your story is an interesting one and I think you would get better replies if it was in a dedicated thread.
That said, very low PSA, pc in your history and a twice-confirmed 4+3 Gleason would indicate to me that it is serious. If you are super fit, 6 months of ADT seems to be quite doable just based on posts by folks on this forum who are physically active.

Jump to this post

Agree with you ozelli. A contractor hauling building materials up ladders and doing physical labor is BETTER than going to the gym. It’s a total body workout 5 days a week.
Coloradoboy, you will definitely feel some fatigue, some hot flashes too but it’s not that bad.
You sound like a guy (avid cyclist) who is used to pushing thru physical barriers; your ability to cope with your emotional and family issues also indicates a strong mental core.
So I would definitely go for 6 months of ADT (the least you should do) to help you fight the cancer. Also, as jeffmarc mentioned, the other factors in your biopsy - and a Decipher Test - are VERY important before you do any treatment. Cyberknife is great but it doesn’t always work with cribriform/IDC - even with ADT.
You may need a ‘brachy-boost’ where a powerful radioactive seed is placed in your prostate for an hour or so to really blast the most aggressive cells….
…or surgery, which is effective, sometimes ‘curative’ (we use that term very ironically here!) but a very good first step nonetheless.
Sorry to muck up things since your main question was about ADT, but your low PSA with a 4+3 Gleason score is somewhat atypical and you may need a lot more info before pulling the trigger on treatment. Best,
Phil

REPLY
Profile picture for dailyeffort @dailyeffort

When I was in your position I asked to have the various treatment options and likely outcomes explained to me. I was given links to the NCCN Guidelines and recent studies supporting each of the treatment options available for someone my age in a similar physical condition/life expectancy having the same NCCN category/Gleason score and confounding risk factors (IDC, Cribriform, EPE and .52 Decipher score, in your case). This made it possible to evaluate, for each treatment option, the median time to biochemical recurrence, cancer specific mortality and overall survival data. I could then weigh potential short term side effects during and/or after each treatment option and compare it to life without short term side effects due to treatment, but a much shorter time to the side effects which would likely result from untreated biochemical recurrence or the treatment of biochemical recurrence.

I walked in your shoes nearly 4 years ago when diagnosed with Gleason 9, EPE and cribriform. It was a frightening time to have to reach decisions that would dictate the quality, potentially both short and long term, and duration of life. The multidiciplinary team of doctors I met with at Fred Hutch/UW in Seattle provided the studies, data and links I needed to reach my decision to have RT (I chose to have proton) with 2 years of lupron + abiraterone. I had side effects many of which lasted approximately a year after completing ADT, but they certainly weren't debilitating. I continued to work as a contractor and we hiked, xc skied, mountain biked and kayaked with friends through the two years of treatment, although somewhat less frequently.

In the absence of comorbidities that would complicate your treatment decision, I hope that you have the data the doctor used to reach the conclusion that "the probable side effects and not worth the potential benefits." It is your body, your life and your choice. I hope you will continue to post so we can all continue to learn from and support each other. Wishing you continued success and happiness on your PCa journey!
Bill

Jump to this post

Thanks for your response. Coincidentally Fred Hutch was one of the centers of excellence I sought treatment from and they were fantastic! I ended up at Providence in Portland mainly because they offered MRI guided SBRT vs MRI informed. Additionally, I felt the radiologist in PDX had more experience coming from Mayo…..but certainly nothing negative about Fred Hutch at all. Bottom line came down to risk vs reward and I’m still OK with my decision but understand time will tell. Thanks again for your very well written and informed reply. Bill

REPLY
Profile picture for billkmed @billkmed

SBRT was only 6 weeks ago. Treated by former Chief Resident of Radiation Oncology Mayo. I’ve researched the heck out of this and fully understand the risk. SBRT was MRI guided also utilizing Barrigel which I’ve learned is far superior to the old Spaceor. Read everything written here by you and others regarding the challenges but ultimately decided my body my choice.

Jump to this post

@billkmed
Sounds like you have an experienced and excellent R/O.

When we have prostate cancer the bottom line is you do what is best for you. What is best for someone else does not mean best for you. When you research and have an experience R/O and you trust that medical provider that is your choice. You are correct it is your body your choice.

You did not mentioned Decipher test or PSMA. Were they done? They are very precise test to help you and your doctor know more accurately risks and status of your cancer.

I had 30 rounds of Proton Radiation with no hormone treatments. I was originally going to have hormone treatments but my Decipher came back low risk and hormone treatment recommendation was removed. I did go through a second opinion and got same diagnosis and treatment.

The decision to have hormone treatment is a personal one to make for yourself with consultation with your doctors. I was told by my Mayo R/O the increase in risks if I did not have hormone treatment was around 20% higher with an intermediate risk. That R/O said it is your decision. As I mentioned the hormone treatment recommendation was removed after Decipher test.

Hormone treatments don't kill (Mayo and UFHPTI R/Os) prostate cancer. What they do is rob the prostate cancer of testostorone which feeds the prostate cancer. Thus it retards the growth which allows the radiation or other treatments time to treat disease that is being kept at bay by the hormone treatments. If you have surgery it will help keep in from getting a tumor larger or help retard spreading until your surgery is done. Note I said help.

I am not familiar with Barrigel but you posted far superior than Space/Oar. I had Space/Oar to help move colon away from prostate. My Mayo PCP said studies are underway to see if having the Space/Oar provided significantly additional help with lessoning side affects of radiation or not significant enough to justify the procedure.

I was gald to do it as I wanted to do everything I could to lesson side affects of radiation. That is why I chose proton over photon. They both have the same successful outcomes of treatments. It was the possible benefit of lessoning of damage of radiation to surrounding organs and tissues is what I wanted.

Good luck on your journey.

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