Gleason7(3+4) - treatment options recommendation

I suspect a (marginal) benefit of photon over proton would be that if the cancer has spread a bit more than detected, the radiation spreads a bit more too, and might just attack it anyway.

For most people, though, I agree that proton would be more desirable if available, especially for cancer that's in a very early stage and clearly isolated in one or two spots in the prostate. Radiation cystitis (bladder damage) and proctitis (rectal damage) — even when extremely mild, like mine — are annoying, though you learn to live with them.

Still, even if it had been available, I probably wouldn't have gone for proton in my case, because my cancer had already spread non-locally to my spine, so there was a non-trivial chance there might be some hanging around near the prostate as well that didn't show up in the scans. They told me that even though it's fairly precise, the SBRT (CyberKnife) photon radiation I received continues working and spreading for quite a few weeks after treatments end.

Because of the fact that you are a Gleason 9 I think it would benefit you greatly if you attend Ancan webinars. They are held once a week and people who are new get priority and can get recommendations for treatment from doctors and lay people with a lot of experience.

Go to Ancan.org and sign up for the advanced prostate cancer group. You can actually watch their past webinars on YouTube and you will immediately find out that the information you will get there exceeds what you’re getting now. You can speed up the playback to up to double normal time.

The next meeting is Tuesday at 3 PM Pacific time. They are two hour meetings. The following Monday the meeting is at 5 PM Pacific time. You need to install. GoTo Meeting to attend, not zoom. They also have phone in capability if you would prefer.

@northoftheborder
When I had my consultations with Mayo R/O and UFHPTI R/O both said they treatment I would receive would be to entire prostrate and margins.

Why I asked? Answer there is NO guarantee that the biopsies taken show all areas that can have cancer. If we miss an area, even minute the cancer will still grow and could spread. So both radiate all the prostrate AND margins outside the prostrate.

With your case yes if outside the prostrate a very different situation. Mine was confirmed inside prostrate from the PSMA and bone scans. It was determined I was in the very early stages of the cancer and Decipher came back low risk. But they still did margins.

Yes the damage to prostrate by either contiues for several weeks. I had to wait 4 weeks until could take supplements again. There are some new radiation treatments actual designed to kill the cancer but my concern with that unless you treat all you can miss a cell here or there. Most photon and proton radiation is designed to damage the cancer cells. When damaged the cancer cells cannot reproduce and eventually die. The radiation also damages the regular prostrate cells but they can reproduce and heal themselves.

It is why I was taken of all supplements that are designed to protect cells and antioxidants. I was adivsed research has shown those supplements help protect the cells but they also protect the cancer cells.

That makes a lot of sense. Like you, I was happy to risk some mild irritation in the areas surrounding my prostate, like the bladder and rectum in return for having a better chance of capturing any stray cancer cells.

One thing I'm curious about: after SBRT (photon beam), I was told I can never go shirtless outside again during the day because my skin (at both radiation sites) will be ultra-sensitive to U/V.

Does the same apply to proton-beam radiation, or is the skin unaffected because the radiation beam delivers its highest load internally rather than at the surface?

Have you investigated any of the Monotherapy Treatments ( no ADT Shit ) ?
Ask your Radiation Oncologist about SBRT - 5 Treatments Mon-Wed-Fri and Mon - Wed the following week or HDR Brachytherapy ( Monotherapy . 2 doses 2 weeks apart or sometimes only 1 dose .

I have same Gleason score as you. I’m 59. My urologist here in SF is recommending prostatectomy also. Got a second opinion from Dr. Humphrey at Mayo in Scottsdale and he concurred. Have two more appointments one with oncologist and another with a HIFU specialist (high intensity focused ultrasound). I’ll decide by end of month. Hope all goes well for you. For me it’s been helpful just participating in communities like this for support. It’s not fun to get this diagnosis but I keep telling myself it’s better than the alternative.

@northoftheborder (how is Canada these days)
Never heard of the photo (SBRT) causing the inability to ever take shirt off. But I am not as familiar with photon as I am with proton. Did the photon radiation subject your entire chest area to significant radiation?

It would make sense if it had because photon radiation burn on skin is like a bad repeated sun burn so could make it sensitive to sun burns. But why so much in chest area and not just around entry sites.

I had pencil beam proton. It is a very precise beam and depth of release radiation. My areas of skin tanning were on the top of each side of hips but only a couple of inches. I have a ICD/Pacemaker and UFHPTI physics department recommend the pencil beam proton for me to keep radiation away from my ICD/pacemaker.

You are right on proton. R/O expalined the intensity of proton radiation going in is very much lower than the intensity of the radiation at the programmed release depth.

My R/Os explained (like yours did) why they don't just radiate biopsied areas, or MRI areas, as take a chance of a cancer cells being missed in prostrate or in the margins ouside the prostrate.

I worry sometimes when I read radiation treatments directly targeting the MRI confirmed cancer areas only or biopsied confirmed cancer areas only. You would think this would increase the chances of missing cancer cells.

There's no visible skin damage, but the SBRT machine circles around delivering radiation to the same place from different angles and directions, so I have two sensitised areas: one around my middle chest (from the radiation to the metastasis/surgery site) and one around my lower abdomen/groun (from the radiation to my prostate).

@northoftheborder
I was briefed on the SBRT moving around and directed radiation from different angles into body.

With the proton radiation they do a low dose xray to see your markers and prostrate and then make any adjustments before treatments. The 1st treatment comes from a specific entry poin on one side first. The beam is moving over the programmed area. Then the entire machine beam shuts down and moves over you to the other side of your body. You then get another low dose xray to line up your markers and prostrate and they make any adjustments before you get your treatment from that side.

This keeps the amount of radiation you get minimal to the specific areas of treatment both entry and directed areas. As you know proton radiation when it enters is low and the full energy is released only at a specific programmed depth and does NOT proceed out body.

When I first went for treatment I had a gantry that did not move over you but the entire bed you were laying on would turn 180 degrees. Really unique to be moved around automatically. But them I moved to a gantry that moves over you and was much faster.

I can see from your description you were getting far more radiation coming from many different and angles than proton beam radiation requires. But yours unlike mine was treating more areas than just the prostrate and margins. The middle chest you mentioned would confirm getting radiaton in chest areas and their concern for sun radiation to those areas of the skin.

Have you investigated NanoKnife . It's being used worldwide and is preferred in many cases to HIFU .
If you consult with a "Surgeon ",as the name implies they want to operate and remove -- NOT TREAT . Focal Therapy is a bad word for them .