PC treatment: Prostatectomy or Proton Beam Therapy

@ebooneac
Not too muddy the waters as you seem to have narrowed it down to removal or Proton, but you might also want to consider a Radiation machine that has built-in Mri versus fused images. What they can see they can treat. I had the Mridian machine and the only other machine that has a built-in MRI is the Electa unity. I had five treatments that finished in February 2023. I also had spaceoar inserted. The built-in Mri means that the Health tissue outside of your Prostate is exposed to last Radiation than other forms of radiation. That means there is a difference, side effects and quality of life, according to the Mirage randomized trial. These are not easy decisions but good luck. You are definitely in the right spot to get Information.

@retireditguy
Hello - you are the first to mention "penile rehab." You say your incontinence was OK and restored fairly early. Was that due to what your term "penile rehab", or are you meaning "sexual/erectile" penile rehab? I am not aware that it exists. I went for 8 weeks of "Pelvic Floor Physical Therapy" (PFPT) to help with urinary incontinence, but the therapist did nothing for sexual erectile function. Literally up to the day before my surgery last April, as a 70 year old man, I was fully capable of sexual erectile function, but I have been "dead in the water" down there for 10 months now post-op. If there is a penile rehab therapy or program, please describe it in detail, including how soon after surgery you started that therapy...I want to know of the 15 months you were struggling with ED, how many months prior to the 15th month, you started your penile therapy (in other words: therapy was all 15 months, or just the last 3-4 months of that 15 month period?). Thank you in advance for your reply.

@rlpostrp -- Hello. I'm not an expert on penile rehab, but I'll happily share my experience. First of all, as far as I know my penile rehab had little or nothing to do with my continence. For continence I did Kegals before surgery for about 3 weeks, and then resumed after the catheter came out and my care team said I could start Kegals again (I don't remember exactly how soon). But I was never incontinent, so I really don't know how much the Kegals contributed. That said, I think they did help and (on advice of my care team) I continue doing 2 sets a day and intend to never stop. Regarding penile rehab, I did a daily low dose 5mg cialis (generic), on demand 100mg viagra (generic), and for several months a vacuum pump (although I never figured out how to make it work to help the sex act). I also took L-Citrulline, but don't how much it helped. Frankly, since I understood it was a “use it or lose it” situation, I forced myself to try even though (especially early on) it was very frustrating and a bit humiliating. That’s where the vacuum pump came in, as it gave me a chance to give it a workout alone. I also experienced a significant drop in penis sensitivity, so masturbation didn’t work well for me. But I was trying to do everything I could to “use it”. I should mention that my wife was unbelievably understanding and supportive and I couldn’t have asked for a better partner in my rehabilitation. I also exercised, took vitamins and magnesium, and tried to give my body every chance to recover. It was a slow grind. It’s hard to remember exactly, but at about 2 months we started trying to have sex. I was maybe at 65% (if I responded at all). Also very poor sensitivity, and the first few times I had some urine releases. By about 4 or 5 months I was maybe up to 75% or 80%. Progress proceeded as a step function (ie. no gain for a while, then a “jump” to a higher level). At 15 months I believe I achieved full return to pre-operative capability. My extended care team (both Mayo and my local urologist) were advising me, giving me prescriptions, and managing the process. I never got to taking the shots, but that would have been the next step. In hindsight, I've since read that the shots can help with rehab, but I don't have any experience with that. Feel free to message me directly if you have any details you’d like to discuss. You might want to also click on my old comments as a lot of it’s detailed there. Best wishes. Here’s some good reference materials others have posted that I found useful:
https://www.ucsfhealth.org/conditions/erectile-dysfunction

@charlesprestridge Dr. Cooperberg actually said: "God forbid we would do proton therapy for prostate cancer which should basically never...."

But he clarified this a sentence or two later: "Jason actually ran honest to god RCT of proton versus photon which showed very little difference."

This is what all the experts I've heard who are not enthusiastic about protons say, i.e. the literature so far shows very little difference in outcomes in patients treated with photons or protons.

So the complaint is, the docs see all this money going into building facilities to administer proton therapy, and they see other needs that could have been addressed with that money.

Cooperberg blames the situation on the fact that "We are one of only two countries on the planet that allows direct to consumer advertising in healthcare. It's a travesty. It drives up costs. It drives confusion. It is an absolute mess."

I've seen this in Seattle, the big city nearest where I live. The NCI designated cancer center there invested more than $100 million in a proton facility years ago. It is proven to be better for pediatric cancers among others. But to keep the machine busy, they flood the regional sportscasts with ads touting protons for prostate cancer. When you see a doc there about your prostate cancer they are definitely unenthusiastic about it. Its not that protons are not a good therapy for many cancers, including prostate.

Meanwhile, the RO I see there at my latest appointment replied to my question as to why they don't have an MRI-Linac machine by saying the center won't allocate the $5 million for it.

@bens1 I am impressed by what I've read and heard about MRI-Linac. In this interview on the Dr. Geo podcast, Dr. Zelefsky discusses his use of the machine, around minute 40: https://www.youtube.com/watch

His stated reason is the confidence the practitioner can have when using the machine, because it allows them to specify where the prescribed dose of radiation will be applied to a much tighter area than other machines. If the prostate moves when the beam is on, due to gas or stool moving in the rectum or as the bladder fills, the MRI sees that the beam will then be hitting an unintended area and the software automatically shuts off the beam.

I discussed this with my RO. He isn't so sure that if he had his hands on an MRI-Linac that he would be touting its use to his prostate patients. He is confident that his methods using the external beam he has access to can do as good a job, subject to seeing more data. He's using CT to monitor prostate movement when his beam is on, following gold markers he plants in the protate pre procedure. He was enthusiastic about MRI-Linac for cancers in organs that move much more than prostates i.e. liver cancers. He pointed out critiques of the MIRAGE trial which is the trial that most advocates of MRI-Linac point to. But he wants to get his hands on an MRI-Linac, that was for sure.

I don't know enough to know. Zelefsky is known as one of the best of the best, who has been doing state of the art research and treatment for decades.

@climateguy
Proton radiation costs are going down, and the affects will be felt over the next few years. Instead of having to build buildings for them, they’ve come up with much smaller systems that can fit into one or two rooms. As a result, it’s expected that in a few years (who knows) Proton will be as cheap as photon.

@jeffmarc

Thanks Jeff. From what I understand Dr Cooperberg is stating Proton therapy is not as good as other therapies for prostate cancer. This is aside from the cost and availability (from what I undersrand from him). I do not understand any of the reasons. I have seen him on a few podcasts/videos, sharing this sentiment.

Best Wishes.

@charlesprestridge
I would be interested in seeing something more specific than this.

While Dr. Cooperberg's stance isn't fully detailed in the snippets, the general consensus from major studies, including those he's commented on (like Dana-Farber and The Oncology Pharmacist), suggests that for localized prostate cancer, Proton Beam Therapy (PBT) isn't definitively better than standard Intensity-Modulated Radiation Therapy (IMRT) in terms of long-term cancer control, but it can reduce doses to nearby organs like the rectum and bladder, potentially lowering side effects like gastrointestinal (GI) or urinary (GU) toxicity, though some trials show similar toxicity levels.

Surgeons will always say surgery is better. The only advantage I can see is that if the surgery doesn’t work out then you can get it with radiation again later. And it seems like I’ve read way too many times that the surgery doesn’t work out unfortunately. And by that I mean that not only did they have to deal with side effects of urinary and erectile dysfunction but the disease came back as well so it’s almost like a three strike out thing. Myself I had Gleason eight. Just three core positive for Gleason eight out of 15 with a PSA of 6.2. I elected for the proton SBRT treatment. Don’t let anyone tell you that there are no side effects from it because they’re certainly was for me. Starting with the second treatment, I had what I would call urinary discomfort. And this kind of peaked about two weeks after the last treatment. It took a lot of Advil and a lot of Tylenol and another drug called AZO and Flomax to manage my symptoms. But as of today, I’m about one month from the last treatment. And things are getting better for me. No bowel issues. Space Oar did well in that regard. I am taking Firmagon and the doctor and I are arguing about the duration. Best of luck to you, my friend!

@climateguy Yes, they are planning proton facilities in a couple of Canadian provinces, but they likely won't be available for prostate-cancer patients — they'll be for situations like brain cancer in children, where small margins can have devastating life-long effects (right now, provinces pay to send some of those kids to the U.S. for proton-beam radiation).

As with PSMA-PET scans, there's no evidence that proton-beam radiation improves overall survival or quality of life for prostate-cancer patients: they haven't been able to show that the enhanced technical capabilities actually produce better human outcomes (at least, not yet).

Note that we do have PSMA-PET, but reserve it for exceptional situations, not routine scans.