Third SBRT Opinion Worth It?

The surgeon who did my biopsy has remarked several times that my prostate isn't very large (I don't know the exact dimensions). He also did a cystoscopy last Friday and didn't see anything major. He wrote me a prescription for overactive bladder but I haven't had a chance to pick it up. I probably drink too much coffee/tea, and I run, so I drink a lot of fluids in general, which I'm sure contributes to the frequency issues. I've been on Flomax several times in the past and am currently on Silodosin. I've seen maybe minor improvements at best.

I have about a month until the appointment in Houston. It is probably worth cutting down on (or out...ack!) caffeine and trying the bladder medicine to see if the issues improve drastically.

@psychometric, first, I'm a PCa patient, like you, sorting through treatment decisions, so my opinion doesn't mean as much as the people who have walked ahead of us on the PCa treatment trail. However, your diagnostic situation and mine seem very similar. In your shoes, I would go (and have gone) for multiple opinions about different treatments from various providers. Each time I did so I learned something helpful.

Based on your comment that both RO's now disfavor SBRT and the fact that your surgeon did a cystoscopy, I'm wondering if we are not in a similar position: trying to select between treatments with a pre-treatment risk of a grade 3 late stage GU toxicity reaction to radiation therapy because of pre-existing lower urinary tract symptoms (LUTS). Have they talked to you about that? My understanding is there are several possible reasons: obstructive, neurological, and functional/medication, each with a different solution. Sounds like your surgeon ruled out the internal obstructive causes. The Rx for 'over-active bladder' is attempting to address one functional possibility. Heavyphil is right, in most cases the cause of LUTS can be addressed before the RT, making you a better candidate for RT, if that were your preference.

In my particular case, I think early on in my diagnosis and treatment discussions I was too overwhelmed with the larger picture to pick up on the nuances of the discussion. For me, one of the greatest values of talking to several providers about several different treatment approaches was that I was a better listener and I asked better questions at the later diagnosis and treatment discussions. One question I didn't ask is: Is there a difference in how much each type of RT affects the GU system?

Please follow up and let us know the outcomes of your discussions and decisions. It will certainly help me and others!

Best wishes!
Guy

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.)

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.

The surgeon who did my biopsy has remarked several times that my prostate isn't very large (I don't know the exact dimensions). He also did a cystoscopy last Friday and didn't see anything major. He wrote me a prescription for overactive bladder but I haven't had a chance to pick it up. I probably drink too much coffee/tea, and I run, so I drink a lot of fluids in general, which I'm sure contributes to the frequency issues. I've been on Flomax several times in the past and am currently on Silodosin. I've seen maybe minor improvements at best.

I have about a month until the appointment in Houston. It is probably worth cutting down on (or out...ack!) caffeine and trying the bladder medicine to see if the issues improve drastically.

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.

@psychometric, regardless of your decision, visiting with the folks at MD Anderson will give you confidence in your choice.

For my benefit, did you happen to answer a questionnaire about lower urinary tract symptoms? It goes by two names, but its the same questions: AUA Prostate Symptom Score or International Prostate Symptom Score (IPSS). It's a 7 question quiz concerning urinary symptoms that allows the patient to rate the level of severity of the particular symptom from 0 (None or Never) to 5 (Almost Always). Your answers give a composite score of 0 - 35. If you did take that quiz and know the outcome, would you mind sharing it? In several radiation studies I've read, they use that composite score as one determining factor in deciding whether that particular radiation treatment would be a good or poor choice for a patient. I will add that the IPSS threshold was not the same in all studies I reviewed.

Thanks and keep in touch!

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.