Why so few Proton Therapy discussions?

Posted by robertov @robertov, Jul 12 12:09pm

Planning on Proton Therapy next month. Yet as I follow this Mayo Clinic forum, which has proton therapy, I see almost NO discussion. Has it become something no one wants to talk about. Is it becoming not common any longer. The latest comment is from mid June and many go back over a year ago. What gives?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for robertov @robertov

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.

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Thanks for the kind words about the Canadian healthcare system. Unfortunately, we're not as centralised as we could be: healthcare is a provincial jurisdiction, so while the federal government offers funding in exchange for meeting the requirements of the Canada Health Act, most of the cost and all of the final policy decisions happen at the provincial level.

That means that while all provinces and territories meet minimum requirements, you will often get better and more advanced cancer treatment in a richer province (e.g. Ontario, BC, Alberta) than you will in a poorer one (e.g. New Brunswick, Saskatchewan). In Toronto, Ottawa, or Calgary, you can often get (free) oncology care comparable to that at Mayo or the Cleveland Clinic in the U.S.; in Saskatoon or Fredericton (or even Montreal), not so much. 😕

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Profile picture for northoftheborder @northoftheborder

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 🤷).

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I admit that I am concerned that using PT for prostate cancer when so many pediatric patients need it’s benefits for brain cancers, concerns me. My assumption is that if they are offering it to PC patients, they are not doing it instead of real need. But I don’t know that, really. The cost quoted to me is not so high, in the 10K-20k range because Medicare covers it.
I am not entirely convinced of it’s pinpoint accuracy in the prostate. As you point out, you want to irradiate more than just the identified lesion.
The lack of evidence for better outcomes doesn’t concern me as much. My PC is localized, not large, not cribiform, clean PSMA scan, and I partly don’t trust doctors that want to go beyond what’s there. That could be a mistake I know. I am concerned about incontenence and rectal problems more than anything else.
Finally, I have always lived life as fully as I can. I have stopped drinking wine or weed and fully hope to die with it than from it :0. My granddaughters need me now. I only want to last until their into late high school.
I really shouldn’t post after champagne by the ocean in Portugal on my 49th anniversary 🙂

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Profile picture for robertov @robertov

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.

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Less influenced by profits- you hit the nail on the head!!

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Profile picture for robertov @robertov

Interesting. Do you have pointers to the conferences?

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Here is something from one conference. I just attended so many I cannot separate it out which one’s discussed that issue.

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Profile picture for robertov @robertov

I admit that I am concerned that using PT for prostate cancer when so many pediatric patients need it’s benefits for brain cancers, concerns me. My assumption is that if they are offering it to PC patients, they are not doing it instead of real need. But I don’t know that, really. The cost quoted to me is not so high, in the 10K-20k range because Medicare covers it.
I am not entirely convinced of it’s pinpoint accuracy in the prostate. As you point out, you want to irradiate more than just the identified lesion.
The lack of evidence for better outcomes doesn’t concern me as much. My PC is localized, not large, not cribiform, clean PSMA scan, and I partly don’t trust doctors that want to go beyond what’s there. That could be a mistake I know. I am concerned about incontenence and rectal problems more than anything else.
Finally, I have always lived life as fully as I can. I have stopped drinking wine or weed and fully hope to die with it than from it :0. My granddaughters need me now. I only want to last until their into late high school.
I really shouldn’t post after champagne by the ocean in Portugal on my 49th anniversary 🙂

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Yes, I was quoting the full cost for an uninsured patient, not the out-of-pocket co-pay.

When we do get proton-beam therapy in Canada, it will be free, but triaged by need rather than insurance or other financial means. Still, as others have written, a wealthy Canadian can always skip the queue by travelling abroad somewhere like the UK, Turkey, India, or the U.S. (though the latter is very expensive).

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@robertov, If you do a search of Connect for "Proton Therapy" it shows 114 different discussions in several different health support groups. It looks like quite a few members have already replied to your discussion but I thought I would share the search link that lists the other discussions where Proton Therapy is mentioned - https://connect.mayoclinic.org/search/discussions/?search=Proton%20Therapy

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Thanks for the reply John! I do go to that support group, but it seems that most of those discussions are not quite dated. My concern was why so few, so recently. But maybe I’m missing something, so I’ll go back and check!
Roberto

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Profile picture for northoftheborder @northoftheborder

Thanks for the kind words about the Canadian healthcare system. Unfortunately, we're not as centralised as we could be: healthcare is a provincial jurisdiction, so while the federal government offers funding in exchange for meeting the requirements of the Canada Health Act, most of the cost and all of the final policy decisions happen at the provincial level.

That means that while all provinces and territories meet minimum requirements, you will often get better and more advanced cancer treatment in a richer province (e.g. Ontario, BC, Alberta) than you will in a poorer one (e.g. New Brunswick, Saskatchewan). In Toronto, Ottawa, or Calgary, you can often get (free) oncology care comparable to that at Mayo or the Cleveland Clinic in the U.S.; in Saskatoon or Fredericton (or even Montreal), not so much. 😕

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Very good to know. I will use that as a search parameter. There was a request about which conferences I was referring to, so I need to go back anyway.

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Profile picture for robertov @robertov

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?

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I believe that you have chosen the correct path.

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Profile picture for harvey44 @harvey44

I believe that you have chosen the correct path.

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I agree. In fact, the "correct" path is always the one someone has actually chosen and lived. The others are unknowable (perhaps they exist in some quantum-mechanics parallel universe). Or to put it more bluntly, you can't drive by fixating on the rear-view mirror.

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