RP vs Phonton vs Proton

As a Gleason seven, your cancer grows very slowly. You are a 4+3 The lower number doesn’t matter, that’s what the doctors go by.

I had a prostatectomy at 62 almost 16 years ago. Back then, they didn’t spare the nerves. These days they can, so you need to ask the doctor if with your cancer case can they spare the nerves? If so, that gives you a better chance of getting an erection after surgery. If you have radiation you usually don’t have ED issues right away, but it usually becomes a problem after a few years.

Before my prostatectomy, the Biopsy showed 3+4, after surgery they told me it was a 4+3. I have a genetic problem BRCA2, which causes my cancer to keep coming back. I’ve had four reoccurrences and one metastasis since surgery. I am still here 16 years later. I’ve been undetectable for two years. I’ve had a variety of treatments and drugs, but I’m still around. You don’t have a genetic issue so your life expectancy is even better.

With your low-grade prostate cancer, you’re going to be around for a long time. I remember when I was first diagnosed I wondered if I’d be alive in five years, That’s just the kind of things you think about when you don’t know how good the treatments are.

Photon radiation has a low chance of spreading cancer to other organs, I had over eight weeks of it almost 13 years ago and I’ve had no other side effects besides some incontinence after 5 years. See the below study for more information about that.

In a study of about 145,000 men with prostate cancer, the team found that the rate of developing a later cancer is 0.5% higher for those who received radiation treatment than for those who did not. Among men who received radiation, 3% developed another cancer, while among those who were treated without radiation, 2.5% developed another cancer.
https://med.stanford.edu/news/all-news/2022/070/prostate-radiation-slightly-increases-the-risk-of-developing-ano.html
Proton Radiation does have a tighter beam and spreads to other organs much less because it can stop at the targeted organ unlike photon radiation but the chance of other cancer is very low as you can see from the above study.

If you can get your nerves, spared than having surgery, can be a good option since you can get radiation after, if it comes back. If you have proton or photon radiation, you cannot depend on having surgery, Though there are a few doctors that will do it, there are very few.

Thanks @jeffmarc for your time and thoughtful insight. I feel as though I have to make a decision today but in reality I still need a couple of other data points. The PETScan and getting a radiation oncology opinion based on my biopsy and pathology report. The urologist is a robotic surgeon so that’s their confirm zone. Plus if you are in the camp of just get it out and save radiation for later surgery even with the recovery and possible long term side effects makes sense. On the other hand Photon or Proton seems to have the same 7-10 year survival rate. But cancer has its own mind especially at the cellular level. I’m glad you are healthy and still here. It’s a very emotional junction. So any input is very much appreciated.

@bdouglas67
I had a prostatectomy at 62, 16 years ago I ran a Computer consulting business and was out at client’s offices four days after the surgery. I only went to three offices and took it easy but four days later I went to work full-time. The catheter didn’t bother me and I had the Bag attached to my ankle. Is it got full I’d go into a bathroom and empty it..

All I needed was Tylenol for the pain, There wasn’t much since it was done arthroscopically. You would be hard pressed to find a surgeon that didn’t use Robotics.

With a Gleeson seven there’s no such thing as a 7 to 10 yard survival rate. Expect to be around for decades. I know people that are Gleason nine that are having their first reoccurrence at 20 and 30 years. I know many of them that have lived for well over 10 years. The guy who runs ancan.org was a Gleason eight and 17 years ago had radiation and he still alive and cancer free.

Even with my genetic problem that causes my cancer to keep coming back. I’m still here after 16 years and I had a 4+3. For the last two years My cancer has been undetectable.

❝Proton beam therapy on paper sounds like in the short run has less side effects but limits or rules out RP in the future if re occurrence.❞

Yes, it's a hard choice.

One extra consideration: if there's a recurrence after radiation, I believe there's a good chance (not a guarantee, of course) that it's because some of the cancer was *outside* the prostate (which is pretty-much fricasseed to a nice crisp), so an RP at that point might not make much sense anyway. They'll have to track down where the new activity is becoming detectable (lymph nodes? bones? bladder?) and treat accordingly.

I think that Decipher will be useful for making a decision, so wait for that. Also - if you see IDC or cribriform in your pathology report, you might have somewhat better results with RP first and keeping radiation as a reserve if you have BCR. Sometimes cribriform and IDC can show resilience and survive radiation if it was not long or strong enough. Unfortunately biopsy can miss those features because biopsy examines only about 1% of total volume of a gland. My husband was 4+3 on biopsy but was upgraded to 4+5 after RP and detailed examination of the gland.

If you do not have high Decipher, cribriform or IDC, radiation and RP would give you same results with a caveat of not having RT as possibility later since you can irradiate the same area only once. Also, RP does not require ADT which was for my husband important factor. It comes really to personal preference IF you do not have highly aggressive cancer.

Wishing you the best of luck with whatever you decide.

Thank you all for your insights. Waiting on results of Decipher. Will have to look at or ask re cribriform. Opted in to receive a complimentary Genetic test kit via a project by Color. I’m interested in Decipher and results of a PETscan. Is anyone have experience with Proton Bean Therapy PBT either the short regimen or longer / more treatments?

My urologist was not as familiar with PBT but did refer me to a colleague Radiologist Oncologist for another opinion. The recommendation there would be to add brachytherapy with Photon EBRT. Hit it with a hammer upfront either RP or EBRT + Brachytherapy.

To all those who have had to make this live changing decision, I now understand how challenging it is on many levels. And everyone’s situations, labs and what’s most important is different. And there seems to be pluses and minuses of the different treatment options. I value all the comments and questions posted. They each help me gain insight into a pathway. Thank you.

@bdouglas67
I was treated with the Mridian radiation machine, which is photon with MRI integration in real time. What they see, they can treat. There is a HUGE difference from one radiation machine to another. The study presented on this website does not talk about that at all. If you Google the Mirage study, you will see that there are significant differences in side effects and quality of life between a machine that has a built-in Mri and those that don’t. The two machines on the market that do have a built-in MRI, versus fused images and everything else, are the Mridian and the Elekta Unity.

So far, my side effects, which was after the third, of my five Mridian treatments, were restricted urine flow, which was taken care of overnight with Flomax. I asked my doctor for a prescription ahead of time. I had a PSA of 10.2 and 3+4 Gleason’s. I had five opinions from Radiation oncologists after ruling out, proton and removal. The key for me, was the built in MRI. I was 69 at the time.

Private message me if you want to drill down on my experience.