Why so few Proton Therapy discussions?

I'm not a medical professional and I really don't know the answer to your question, but here's my guess. According to a recent study of almost 63,000 men, of the roughly 60% of low and intermediate risk patients who chose either radiation or surgery, only 1/3 chose radiation. Assuming most of those are photon radiation patients (since there's a lot less proton machines available), then I suspect the population of proton radiation recipients is small. Considering that generally only a tiny percentage of men undergoing treatment get on this blog, then I conclude that it's just a result of the statistics. Certainly they're welcome here, but since so few undergo proton treatment those that do get on the blog probably don't get a lot of feedback from fellow proton recipients (since there's so few on the blog) so they probably don't stay. As I said, I don't know but that's my guess. I'd encourage you to hang around and continue posting and maybe you can help vitalize that topic on the blog. Best wishes.

I answered this in another thread. I’ve attended at least 3 conferences where they discussed proton versus photon. No studies have demonstrated a clear benefit with protons. The doctors at the conferences did not feel that one was any better than the other.

The lat time I inquired (that's recent) if proton treatment is available in Ontario, Canada the answer was no. If it's not available in Ontario, it's probably not available in all of Canada. Affluent Canadians can get proton treatment in the States but they may not be in this support group.

Interesting. Do you have pointers to the conferences?

I’ve definitely been hanging around as the topics are pertinent. But I have to make a decision next month. My first oncologist wanted IRMT and wouldn’t consider SBRT. Given such a strict position, I looked into a 2nd opinion. The Mayo folks I talked to offered a SBRT trial testing an AI mapping and Proton. Proton being a 5 fraction or 20 fractions. Having been in the AI field and looking at their website, I wasn’t interested in the AI SBRT. I chose Prtoon SBRT. Maybe I should be looking at a 3rd opinion?

Sick Kids and Princess Margaret Hospitals in Toronto announced in 2022 that they're collaborating on a future proton-radiation therapy site in downtown Toronto, with a capacity of 1,500 patients annually. I doubt it would be available to prostate-cancer patients, though. Priority would likely go to pediatric cases and/or those with cancers where pin-point accuracy is critical (like brain cancer).

It's going slowly because

a) PBT facilities are mind-bogglingly expensive, even compared to SBRT machines (which aren't cheap): proton machines are so big that they require specially-constructed buildings with at least a 3-story-high ceiling (!!!), while SBRT machines at least fit into some larger existing hospital wards.

b) There's been no demonstrated overall-survival benefit from proton vs photon, as @jeffmarc mentioned.

c) For those where long-term side-effects are especially concerning (e.g. children with brain cancer, who might live 80+ more years for side-effects to develop), it's a lot cheaper for provincial health ministries just to fly them and a family member to another country (e.g. the U.S. or UK) and pay for their proton therapy there.

d) There's no profit motive: in the States, setting up a proton machine can bringing in huge revenue, with one round of radiation generating US $60–200K in income, so it's a good private-sector business venture (whether it's always strictly necessary or not).

e) Sometimes we don't even want radiation to be pin-point accurate. One of radiation's benefits over surgery (and also one of its disadvantages) is that it keeps spreading outside the prostate for a couple of weeks after treatment, so it can deactivate cancer cells not just in the prostate but undetected ones in the surrounding area as well (the downside is that it can also cause side-effects in those surrounding area, so 🤷).

Also, apparently the cheapest places to get Proton Beam Therapy for prostate cancer include Turkey (US $20K), and the UK (as low as US $35K), so if an affluent Canadian really wants it, they'd be way ahead financially travelling to one of those countries, even if they booked first-class airline tickets.

I try to follow the Canadian conferences. Their medical system is less influenced (or at least I think so) by profits because of the NHS. This also affords them access to a lot of data since it is centralized. From the conferences I watched, it appeared they have been doing Proton therapy for a long time. But if not, I’d like to be corrected.

I live in AZ so Mayo is my best option. The last estimate I rec’d was very reasonable as much will be covered by insurance., so we’ll see.

AI kind of corrects you. Here it is.