PC treatment: Prostatectomy or Proton Beam Therapy

@readandlearn
The thing is with all the online advanced prostate cancer meetings I go to. the people that die in five years are a different type of patient..

They almost always have a lot of metastasis to start off with and a very high PSA and Gleason scores. They start right off with triplet therapy ADT an ARPI and chemo. They don’t get much comfort for five years. They have serious cases the whole way. Some of them have genetic problems that cause it to come back quickly as well. Sure, some people in this situation do live many years and do recover for years, but even then they worry about the future.

I chose surgery over radiation because of the statements that you can always follow up with radiation if needed but cannot go in the reverse direction. Proton, however, was not an option at that time. As I understand it, the surrounding tissue is not as adversely affected as with radiation. Looks like Carbon Ion will offer an even better solution, when available in the states. Unfortunately, and for various reasons, we seem to be frequently behind other countries (like we were with PSMA PET/CT scans).

@zmarkv
You point up a real problem and what people are being told. After radiation, the prostate only shrinks 30 to 40%. There are a number of surgeons that will remove the remaining tissue. So after radiation surgery is possible.

@jeffmarc True. Also, I'd guess that many (most?) of the cases where PSA starts rising after radiation are caused by undetected cancer that had already escaped the prostate (just like a PSA rise after a radical prostatectomy), so removing the prostate after radiation might not be helpful anyway.

Compared notes with a friend that at proton and I had EBRT. Night and day difference as far as side effects go. Proton is more precise and harms less tissue than EBTR. I regret having EBRT for salvage as they destroyed my rectum and urinary continence. Showed up 10 months afterwards. On to a GI to see if they can get my bowels right in a couple of weeks.

I received BX report & have left apex 3/3 lesion & right mid base transitional zone 3/4 lesion. MRI indicated all contained in prostate so I am scheduling RARP. I considered proton, but I like idea of having more options in case of recurrence. I just turned 69, healthy & athletic, so best for me.

I was recently diagnosed September 2025 . Drs and research studies all said the same thing - survival rates are statistically the same with all modes: photon, proton, or surgery. The big difference is in the side effects and quality of life. For me, my priority consideration for choosing a treatment was long-term quality of life, particularly given the difficult struggles my dad had with debilitating urinary strictures from his prostate radiation - didn't show up until 20 years after his treatment. (I know times are different and much more advanced, but that surplus radiation dose to normal cells is on all our minds)

I did a lot of deep research, as many of you have, and was 100% settled on Proton Therapy. It made intuitive sense to me, if you cut out the exit dose, you are cutting out half the risk to normal tissue. The predictable distance that protons travel surely makes it more precise. I followed up with visits to three different proton centers: Mayo Phoenix and Wash U St. Louis have all modes of RT; and I also visited a private Proton Center. Neither Wash U nor Mayo recommended Proton Beam for me. I leaned in to each and told them I was specifically looking for Protons, why didn't they want to sell them to me? I'm not a doctor and this is my own interpretation of what I heard:

Proton Beams are very precise in the maximum distance they travel before releasing all their energy. However, not all protons travel the maximum and may not reach that target, leaving unanswered questions about the evenness of the treatment exposure and the actual dose received in any one specific spot. Second, when a Proton release its energy, it releases it in a little cloud, the behavior and width of which is still unknown. Proton therapy has been around since the 60s I believe, but the actual physics of protons in the body is still a bit of a mystery. By comparison, the physics and behavior of light waves (Photons, X-rays, EBRT) has been studied for centuries and its behavior is well known. The edges of the radiation beam are very precise and there is no scatter from release because they pass completely through your body. The radiation energy is relatively low risk from any single one of the EBRT beams, but they are quite potent where the multiple beams all intersect at a pinpoint, and this point of intersection is painted in 3D throughout the Prostate similar to how Proton Therapy is described. Again, I am not a doctor or physicist, just a guy doing his own research.

Studies show that side effects, curability, and longevity are similar for all modes of treatment and I may place the above discussion into the category of me over-thinking and over-analyzing. However, in my case where my lesion is very close to my bladder sphincter, I ended up choosing the precise edge of a photon beam over the the precise distance a photon can travel. With the relatively recent introduction of adaptive therapy techniques, I felt that achieving my goal of reducing risk to my long-term quality of life would be better with photons and adaptive therapy. I start my IMRT treatments in a couple of weeks.

Everyone is different, every situation is different, everybody's goals and priorities are different. I hope I'm not preachy, just trying to share my personal experience. We are lucky to live in a time that can offer a wide variety of treatments with high success rates, but it is unfortunate that us non-doctors are left to make our own treatment decision. There is no wrong decision, only what's right for you. I hope you find this useful.