Third SBRT Opinion Worth It?

Posted by psychometric @psychometric, Mar 3 7:25pm

Paging Dr. Google...

Me:
Age 50, Gleason 7 (3 + 4), 0.56 intermediate risk, 6/12 cores, PSA 6.68, PSMA showed no metastasis to lymph nodes or bones, cystoscopy showed no obvious issues.

My dilemma:
The surgeon who did my biopsy recommended treatment (RP or RT), as did two separate ROs, all local to me in Louisville, KY. I'm leaning ever so slightly towards radiation but it's not a done deal.

The first RO suggested a 9-week course and the second RO recommended a 4-week course, both with 6 mos. testosterone blocker. Both ROs recommended against SBRT/Cyberknife due to existing issues (frequent urination, weak stream). Before seeing the second RO, the urologist at that center suggested that I might be a candidate for Cyberknife. Based on that, I decided to initiate a visit to MD Anderson for a tie-breaker, mainly thinking the MR-Linac might be an even better option than Cyberknife.

Now that both ROs here have frowned on SBRT, I'm not sure about traveling to Houston. I don't think it would be feasible for me to get a 'regular' course of treatment (RT or RP) there, but I guess it might be worth having them tell me for sure MR-Linac is not a good option.

I'm open to wisdom, experience, and informed opinions. Thanks.

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@brianjarvis

The answer to your question is “what do you want?” You’ve probably reviewed all treatment options, success rates, side-effects, quality-of-life expectations during and after treatments, etc. What is your treatment preference?

With prostate cancer, the choice of treatments is totally up to the patient (& the insurance company, of course!). Prostate cancer treatment is one of self-advocacy and shared-decision-making. You are the one driving this vehicle; doctors are there to provide medical advice and recommendations. They’re not likely to give you a firm, absolute decision like “That treatment method is best and will work.”

This is yours; you have to live with the results; you know yourself better than anyone else; you will have to make the final call. (You say that you’re leading towards radiation. Why? Understanding that will help you come to a final treatment decision.)

(With a localized, 7(3+4), PSA of 7.976. I had all the same options and after a thorough and in-depth analysis, I chose radiation and informed my urologist of my decision. Working with my radiologist, I chose 28 sessions of proton radiation. Prior to starting treatment, a second opinion on the biopsy slides increased the Gleason to 7(4+3), so we added 6 months of Eligard (and brought on a medical oncologist to manage that). I had treatments during April-May 2021. PSA now hovers between 0.35-0.55.)

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@brianjarvis Your numbers are very close to mine Gleason 3+4, PSA 7.67, prostate size 103 cc. Decipher was .045. I'm 78 and otherwise in good health. Glad you had a good outcome. Based on the decipher score which puts me at the top of the "low risk" area, my urologist is suggesting we consider another biopsy in 5 months (instead of a year), as part of active surveillance. I'm thinking about how to proceed.

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@tdgillett

@brianjarvis Your numbers are very close to mine Gleason 3+4, PSA 7.67, prostate size 103 cc. Decipher was .045. I'm 78 and otherwise in good health. Glad you had a good outcome. Based on the decipher score which puts me at the top of the "low risk" area, my urologist is suggesting we consider another biopsy in 5 months (instead of a year), as part of active surveillance. I'm thinking about how to proceed.

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Has the doctor discussed giving you an MRI, Or did you already get one? That at least can see whether or not there are any growth(s) inside the prostate, And also target where to do the biopsy. A transrectal biopsy can’t get to as much of the prostate as a transperennial biopsy.

At 78 SBRT radiation will probably kill it off, surgery usually wouldn’t make sense.

My brother at 76, with a 4+3 had SBRT and it seemed to have killed it off, with six months of ADT included. You could find yourself an MRI guided SBRT machine, Much more accurate less tissue damaged.

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@jeffmarc

Has the doctor discussed giving you an MRI, Or did you already get one? That at least can see whether or not there are any growth(s) inside the prostate, And also target where to do the biopsy. A transrectal biopsy can’t get to as much of the prostate as a transperennial biopsy.

At 78 SBRT radiation will probably kill it off, surgery usually wouldn’t make sense.

My brother at 76, with a 4+3 had SBRT and it seemed to have killed it off, with six months of ADT included. You could find yourself an MRI guided SBRT machine, Much more accurate less tissue damaged.

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Already had the MRI--showed a lesion. When the urologist did the biopsy, the lesion came back as benign but 2 of the other samples had cancer cells yielding the 4+3.

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@gsd

Brian, thanks for contributing your experience! It's always helpful to listen to someone that has experienced a treatment you are considering. If you don't mind me asking, where was your treatment delivered and did you experience any side-effects during the treatment or 3 years after the treatment?

Thanks and best wishes!

Guy

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I had the SpaceOAR Vue injection and the proton radiation treatments at the University of Cincinnati; the Eligard injections were done at the Kettering Cancer Center.
The proton radiation treatments were relatively uneventful. I only had 1 day of adverse side-effects during my 28 sessions of proton beam radiation treatments (during April-May 2021). On the 3rd day of treatment, I had urinary issues. My RO told me that with some men there’s an inflammatory response to the radiation, and if that inflammation is near the urethra can cause the issues that I was experiencing. He recommended that I take 2 Tamsulosin/day for the remainder of the treatments. Everything cleared up by the next day; I haven’t had any issues from the radiation since.

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@psychometric

I don't recall either RO using the exact "grade 3 late stage GU toxicity reaction" language. However, they both expressed concern that SBRT specifically could greatly exacerbate my existing urinary issues, up to and including catheterization. The first recommended 45 RT sessions and the second 20 RT sessions.

I'm pretty sure I'd forgotten to mention the post-cystoscopy Oxybutynin prescription to the second RO, so I did follow up with him to ask if my outlook for Cyberknife would change if I see positive effects from the medicine. He replied, "if you have a significant, sustained improvement in your urinary symptoms, we could consider CyberKnife SBRT. It may take a couple weeks to notice a difference. If you do not experience any benefit with the Oxybutynin, then I would still prefer the 20 treatment course."

@brianjarvis Given that the expected outcomes for RP and RT are essentially the same, my main concern is immediate and long-term quality of life, especially incontinence, although long-term salvage options are also fairly important.

RT seems favorable for incontinence whereas RP leaves more salvage options open. RP recovery would have a more immediate disruption to my active lifestyle (the surgeon said 6 weeks lifting no more than 10lbs - not sure how that's even possible). RT doesn't really have any physical restrictions but the concurrent hormone therapy will likely result in at least some limitations based on fatigue, etc. So I'm basically doing what everyone else has to do - weighing knows vs. kinda knows vs. unknowns.

Based on everyone's feedback, I'm going to keep the MD Anderson appointments. They are going to re-analyze my biopsy slides, which could result in a different recommendation. No harm, no foul if not. That also gives me several weeks to gauge Oxybutynin effects.

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That was my thinking as well. There are many long-term treatment options with RT, depending on the nature of the recurrence. The recurrence may be distant from or very near the prostate, for which there are many treatment options; the recurrence may be local to the prostate, bringing treatment options like focal therapies (because the dose can be specifically targeted), brachytherapy, SBRT, and sometimes even re-radiation. (There is rarely a medically-necessary reason for surgery. Most men do surgery only because they “can’t bear the thought of….”)

Side-effects from hormone therapy have been demonstrated to be minimized by rigorous resistance-training exercise. Following what I read and heard about resistance-training exercise, I hit the gym immediately after every radiation session (and for as long as I was on ADT) for weightlifting, as well as alternating days of running 5Ks or swimming laps for 35-45 minutes. I never experienced fatigue; my only side-effects from the hormone therapy were mild warm flashes, muscle atrophy, and zero libido (but never experienced ED).

My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. The short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go shopping or to the gym.

Today, almost 4 years later, everything has gone as hoped. We’ll see what the future brings…….

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@brianjarvis

That was my thinking as well. There are many long-term treatment options with RT, depending on the nature of the recurrence. The recurrence may be distant from or very near the prostate, for which there are many treatment options; the recurrence may be local to the prostate, bringing treatment options like focal therapies (because the dose can be specifically targeted), brachytherapy, SBRT, and sometimes even re-radiation. (There is rarely a medically-necessary reason for surgery. Most men do surgery only because they “can’t bear the thought of….”)

Side-effects from hormone therapy have been demonstrated to be minimized by rigorous resistance-training exercise. Following what I read and heard about resistance-training exercise, I hit the gym immediately after every radiation session (and for as long as I was on ADT) for weightlifting, as well as alternating days of running 5Ks or swimming laps for 35-45 minutes. I never experienced fatigue; my only side-effects from the hormone therapy were mild warm flashes, muscle atrophy, and zero libido (but never experienced ED).

My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. The short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go shopping or to the gym.

Today, almost 4 years later, everything has gone as hoped. We’ll see what the future brings…….

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Brian I like your post. It is very inspiring. I to did radiation 2 years ago & hormone therapy for 18 months. I do worry about a recurrence. I don’t know if that is on your mind or not.
If not what is your secret ? lol also, do you still have dry ejaculations after 4 years ?
I don’t think it’s really a hugh deal. Just wondering.
Nice post.
Bob

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@rparsons

Brian I like your post. It is very inspiring. I to did radiation 2 years ago & hormone therapy for 18 months. I do worry about a recurrence. I don’t know if that is on your mind or not.
If not what is your secret ? lol also, do you still have dry ejaculations after 4 years ?
I don’t think it’s really a hugh deal. Just wondering.
Nice post.
Bob

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I spent 9 years on active surveillance. During that time I studied and evaluated all treatment options, had referrals to specialists, put together a treatment plan, and finally executed accords to that plan. All of that built confidence in successful results. But even with all that due diligence, recurrence is always a possibility.
How I do it? —> I never dwell on failure. When I had successful knee surgery in 1995, I didn’t dwell on failure (even though it did in 2018). When I had a microdiscectomy in 2012, I didn’t dwell on failure; so far it has not. When I had a cholecystectomy in 2023, I didn’t dwell on failure; so far it has not.
Statistically, I’m more likely to die of cardiovascular disease than I am of prostate cancer. (They say that a heart healthy diet is a prostate healthy diet.) My thinking is that my PSA tests are the best ways to determine if there is recurrence and, unless I see a bad PSA trend, I have no reason to seriously consider recurrence; it isn’t even on my mind at all.
Dry ejaculate is an absolute certainly for anyone getting surgery, and a high likelihood for anyone getting external radiation; due to the location of the seminal vesicles, hitting them with radiation is almost unavoidable. In the grand scheme of things though, that’s a minor after-effect that comes with successful treatment.

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@brianjarvis

That was my thinking as well. There are many long-term treatment options with RT, depending on the nature of the recurrence. The recurrence may be distant from or very near the prostate, for which there are many treatment options; the recurrence may be local to the prostate, bringing treatment options like focal therapies (because the dose can be specifically targeted), brachytherapy, SBRT, and sometimes even re-radiation. (There is rarely a medically-necessary reason for surgery. Most men do surgery only because they “can’t bear the thought of….”)

Side-effects from hormone therapy have been demonstrated to be minimized by rigorous resistance-training exercise. Following what I read and heard about resistance-training exercise, I hit the gym immediately after every radiation session (and for as long as I was on ADT) for weightlifting, as well as alternating days of running 5Ks or swimming laps for 35-45 minutes. I never experienced fatigue; my only side-effects from the hormone therapy were mild warm flashes, muscle atrophy, and zero libido (but never experienced ED).

My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. The short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go shopping or to the gym.

Today, almost 4 years later, everything has gone as hoped. We’ll see what the future brings…….

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Brian thank-you for your reply. I like how you look at things. You must be a motivational speaker. Lol I am going to work on adapting your philosophy .
We need more positive spins & stories. It is good for the psyche. This journey can bring you down. It’s good to hear positive feedback. It really does bring you up. I have always been a worrier which is a burden at times. Keep posting.
Thanks

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@rparsons Always think of James Dean's thoughts :
DREAM THAT YOU WILL LIVE FOREVER -- LIVE EACH DAY AS THOUGH YOU WILL DIE TOMORROW .
Or : TODAY''S THE DAY YOU WORRIED ABOUT YESTERDAY .
Enjoy life , It's the best health medicine .

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Kudos to all the respondents taking the time to share. And, best of luck (and good decisions!) to all of us!

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