IMRT/VMAT Radiation with 6 months of ADT - anyone??

Posted by johnsonjn @johnsonjn, Apr 28 8:27am

- Is there anyone in this forum that has completed or is currently taking radiation with ADT - how are you doing after treatment? I would be grateful for any insight.
My treatment options range from RP to radiation IMRT/VMAT with 6 months of ADT (Lupron injection) and radiation without any ADT. I am inclined to avoid surgery. My case; 58 years old physically fit (swim, bike, run and sexually active)
PET/PSMA is clear
Current PSA 5.83
Clinical Stage - T2a
Gleason 7 (3+4) Seven of 19 samples were positive bilaterally
Decipher Score .9 (high risk)

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

Profile picture for pesquallie @pesquallie

@narus

A study at Duke indicated that high testosterone is better if you have aggressive prostate cancer. Their initial study indicated that ADT only helps about 5% of men while 100% suffer from side effects. They have an ongoing program using AI to determine the characteristics of the 5% so they can limit ADT to only those who would benefit.

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@pesquallie I have heard of Androgen resistant prostate cancer and it was one of the arguments I used with my Urologists who was skeptical about prescribing testosterone. My PSA goes down every time I do blood work so he has given up complaining.
That testosterone is rocket fuel for prostate cancer is something they came up with in the 1950's. Our medical system is slow to change when they are making money and those 3 month Lupron shots are over $5k. It's like Colonoscopy's, need it or not we will give you on because it is a big part of their profit.

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Profile picture for rtmcknight @rtmcknight

I did 28xIMRT + Camcevi (Leuprolide) and I'm as happy with my decision as you can be with two awful choices. I had my last shot in December and my Zitiga is running out in 3 weeks!

The most common comments I read here about RP are about what I thought when I researched and personally I'm happy not to have chosen it. The IMRT/ADT approach is definitely not a walk in the park and is also very likely to have sexual side effects. In my experience these are barely mentioned in the original Doctor meetings which probably shows just how likely they are.

As an aside, my (youngish) Radiologist (who I met first) recommended IMRT/ADT and the (older, very experienced) Urologist recommended RP. He also dissed her experience a little. For my second, pick-one meeting with him I had firmly decided to go with her recommendation and I went to him prepared with a lot of information and statistics. He walked in and after the preamble, said: "I think, in your case, we should go with radiation..." I laughed and showed him my now unnecessary preparation notes.

RP is certainly very immediate and afterwards you are effectively "cured" but the effects are nasty and I keep hearing recurrence stories on here (comparison statistics must be easily available but I haven't looked). I know if I have a recurrence my options will be much more limited but I'm ignoring that for now.

I laugh at myself and talk about my 2 years [chemically] identifying as a woman. It really has given me a lot of insights that I didn't have before. Sexuality is very strange, I still love women (and I have a new, super-understanding girlfriend) but you simply don't get that familiar chemical reaction to sexy situations. Seeing a hot girl isn't hugely different to me as seeing a very interesting car - but I do like cars 🙂

We're waiting patiently for my T to come back and I'll do whatever it takes for a practical approach to penetration. But our sex life has been excellent, rewarding, frequent, and lengthy even if it is 95% concentrated on her for now. From right here right now, I feel like penetration will be a bit of a side show when I do manage it. Her pleasure is very rewarding to me (and it is the number one thing that will lead to a 3/4 Viagra erection) but it's a little detached as if she was really enjoying something I had cooked for her.

Knowing that there's a 99% chance I will never ejaculate again makes me sad (that was never mentioned in my doc meetings nor did I find it during research) but I will adapt and there will be all kinds of benefits for ease of clean-up 🙂 I am also hoping to be multi-orgasmic as is sometimes reported here.

No-one can really help you with this decision. It will be full of your and our conformation bias. Good luck!

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@rtmcknight Radiation was right for me as I was single and my family lived out of state so there was no one to take care of me. My problem was six months after my Lupron shot my Testosterone was still at 140 and never significantly came back.
No I don't ejaculate but other than that I am 95% sexually functional while on T, but sex is not what it used to be before prostate cancer

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Profile picture for pesquallie @pesquallie

@narus

A study at Duke indicated that high testosterone is better if you have aggressive prostate cancer. Their initial study indicated that ADT only helps about 5% of men while 100% suffer from side effects. They have an ongoing program using AI to determine the characteristics of the 5% so they can limit ADT to only those who would benefit.

Jump to this post

@pesquallie
"A study at Duke indicated that high testosterone is better if you have aggressive prostate cancer."

I got a little concerned when I read this as I am on a T-Blocker to reduce a recurrence of my cancer. Here is some context on the Duke study:

Yes, that is correct based on a September 2024 study from the Duke Cancer Institute, but with important context: it applies to specific advanced stages, not early-stage disease.

Key details:
The Mechanism: While low testosterone is used to slow early prostate cancer, Duke researchers found that in later stages, high-dose testosterone can force cancer cells to differentiate (mature) and stop dividing, reversing the growth stimulated by low-testosterone environments.
Bi-Polar Androgen Therapy (BAT): This approach, often called bipolar androgen therapy, involves rapidly cycling between very low and very high testosterone levels to treat castration-resistant prostate cancer (mCRPC).

Context: This is a therapeutic strategy for advanced, therapy-resistant cancer, not a general suggestion that high testosterone is "better" for all prostate cancer patients

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Profile picture for rtmcknight @rtmcknight

I did 28xIMRT + Camcevi (Leuprolide) and I'm as happy with my decision as you can be with two awful choices. I had my last shot in December and my Zitiga is running out in 3 weeks!

The most common comments I read here about RP are about what I thought when I researched and personally I'm happy not to have chosen it. The IMRT/ADT approach is definitely not a walk in the park and is also very likely to have sexual side effects. In my experience these are barely mentioned in the original Doctor meetings which probably shows just how likely they are.

As an aside, my (youngish) Radiologist (who I met first) recommended IMRT/ADT and the (older, very experienced) Urologist recommended RP. He also dissed her experience a little. For my second, pick-one meeting with him I had firmly decided to go with her recommendation and I went to him prepared with a lot of information and statistics. He walked in and after the preamble, said: "I think, in your case, we should go with radiation..." I laughed and showed him my now unnecessary preparation notes.

RP is certainly very immediate and afterwards you are effectively "cured" but the effects are nasty and I keep hearing recurrence stories on here (comparison statistics must be easily available but I haven't looked). I know if I have a recurrence my options will be much more limited but I'm ignoring that for now.

I laugh at myself and talk about my 2 years [chemically] identifying as a woman. It really has given me a lot of insights that I didn't have before. Sexuality is very strange, I still love women (and I have a new, super-understanding girlfriend) but you simply don't get that familiar chemical reaction to sexy situations. Seeing a hot girl isn't hugely different to me as seeing a very interesting car - but I do like cars 🙂

We're waiting patiently for my T to come back and I'll do whatever it takes for a practical approach to penetration. But our sex life has been excellent, rewarding, frequent, and lengthy even if it is 95% concentrated on her for now. From right here right now, I feel like penetration will be a bit of a side show when I do manage it. Her pleasure is very rewarding to me (and it is the number one thing that will lead to a 3/4 Viagra erection) but it's a little detached as if she was really enjoying something I had cooked for her.

Knowing that there's a 99% chance I will never ejaculate again makes me sad (that was never mentioned in my doc meetings nor did I find it during research) but I will adapt and there will be all kinds of benefits for ease of clean-up 🙂 I am also hoping to be multi-orgasmic as is sometimes reported here.

No-one can really help you with this decision. It will be full of your and our conformation bias. Good luck!

Jump to this post

@rtmcknight

I have read that more than 50% of ADT patients never recover their testosterone level. After 9 months mine recovered to 122 and then fell to 115 after 3 more months. It looks like I will not recover enough to have any libido or erections. I am 83 years old which is part of the equation. My ADT side effects were the worst I have heard from anyone and they are still present after one year but at a diminished level.

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I am 67 and about 1.5 years ago I was:

- PSA 7.1
- clear MRI
- no visible lesions in prostate
- two positive biopsy cores 3 +4 and 4 +3

I was treated at a major SE multi-disciplinary university cancer center with 5 weeks daily IMRT + 6 months Orgoyx ADT + one HDR "boost" brachytherapy session.

All radiation treatments highly tolerable. ADT did cause me minor weight gain, some emotional moments, elevated blood sugar and triglycerides and intermittent bouts of fatigue (short lived). But, I did not find the ADT that difficult to tolerate at least in my six-month protocol.

From what I've read, Orgovyx is highly effective at lowering testosterone quickly and also has the least side effects

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@capatov - thanks so much for sharing your story! -Your treatment is almost exactly what I will have and I am hoping the side effects are limited like yours. I am struggling trying to get the ADT Orgoyx approved by my insurance. What are your post treatment PSA numbers?

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Profile picture for johnsonjn @johnsonjn

@capatov - thanks so much for sharing your story! -Your treatment is almost exactly what I will have and I am hoping the side effects are limited like yours. I am struggling trying to get the ADT Orgoyx approved by my insurance. What are your post treatment PSA numbers?

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@johnsonjn 13 months post treatment PSA @ 0.1. No real lingering side effects. Never had any incontinence, impotence or other common issues often associated with surgery

Good luck to you. I will keep you in my thoughts for a positive outcome

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At 73, I was diagnosed Gleason 7. PSMA PET scan showed three lesions in prostate and likely activity in both iliac lymph nodes. I was prescribed 24 months of ADT (Orgovyx), later reduced to 18, and 44 IMRT treatments, 26 to pelvis generally and 18 to prostate only. Mine has been an exceptional case, experiencing all the side effects on the Orgovyx.com website and developing radiation proctitis even though a SpaceOar gel was inserted prior to radiation as protection. No sex since starting ADT, and I have about six weeks left. Cancer has seemed to have been completely subdued, but life is different when your testosterone is maintained at < 10. You're considerably younger, but your cancer is judged to be aggressive. You might try radiation alone, followed by ADT only as backup. I have a 53 yo friend, though, who had a radical prostectomy. Nerve sparing was successful, and he is doing great with no radiation and no ADT. He's also an exception. Saying a prayer and wishing you well as you choose.

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I am almost 6 month into ADT. I did have a lupron shot as well. PSA now at a healthy level. So the meds are working. Fatigue, hot flashes, and loss of sex drive are the side effects for me. It's been a tough adjustment for sure. I start radiation end of May and get another Lupron shot. What your experience will be like is hard to say as everyone reacts differently to treatment. In general I'd say be prepared for some changes and have a solid support system of friends and family. If you're sexually active, your libido will mostly take a big hit. So talk to your doc about possible treatment options to address sexual side effects.

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Profile picture for capatov @capatov

@johnsonjn 13 months post treatment PSA @ 0.1. No real lingering side effects. Never had any incontinence, impotence or other common issues often associated with surgery

Good luck to you. I will keep you in my thoughts for a positive outcome

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@capatov You are blessed with a truly wonderful outcome !!!

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