Proton, Photon, or Cryotherapy?

Posted by abrero1947 @abrero1947, May 29 2:48pm

78 1/2 years old; 4/9 cores involved(adenocarcinoma); R mid gland transitional zone; 4+3 in one(40%); 3+4 in all three others(highest tumor involvement of those 70%);Stage 2C; Grade Group 3; No spread at all.
Firstly, with my wife I have already decided no ADT as I have diagnosed Mild Cognitive Impairment and can’t risk further cognitive decline.
Questions:
1)Does Proton Therapy truly present a better long term outcome and less side effects than Photon SBRT treatments?
2)I’ve been told I’d only need 5 Proton sessions in a two week period. If it recurred some day, might I need more?
3)If I do Photon SBRT, is MRI guided SBRT better than CT guided SBRT(Cyberknife?) as far as long term outcome and side effects?
4)How much CT radiation am I exposed to with CT guided SBRT(Cyberknife)?
5)Might Cryotherapy(with spinal anesthesia not general because of cognitive decline issues) also be an option for me? It was also recommended by my Urologist who does it.
6)How many years is minimally enough experience to be able to trust a Radiation Oncologist? It is hard to know who to trust. If I am referred and consult with the youngest newest doctor in a center, can I schedule and consult also with a more experienced one? Thanks, any thoughts are helpful.

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

@jeffmarc

I think you’re right 4 to 6 months doesn’t matter at all. Those of us who’ve been on ADT for many years are almost universally, saying they have brain fog. I know I sure do struggle with it after eight years of ADT,, I’ll sit here for a minute or two, trying to remember the best word or a word, Sometimes I’ll just go to the web and type in the concept so I can get the word.

Remembering facts about things is pretty easy, but remembering the names of people, drugs, and similar type of things can just be painfully slow. If the name does come to me, finally, then even more facts related to it also come with it. It can be very frustrating, I hear the same complaints from others on the multiple online chats I attend.

I just wonder what group of people they studied to find there wasn’t a definite problem with brain fog.

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I follow your comments and Jc76 studiously so I started a discussion but addressed this question to you and jc.
Why is Proton Therapy almost never discussed. On the PC or Proton Beam forums go back to June at the latest and many are a year or so old. PCRI and YT in general just have dated PT videos. Any idea why this is?

REPLY

I have attended at least three conferences where they discussed proton versus photon. The radiation oncologist just didn’t consider Proton was actually making a difference over photon. No studies have demonstrated a clear benefit with protons And the doctors at conferences have not really come up with a reason to use one over the other.

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@robertov

Hi jc, I follow your comments studiously. Just started a discussion on why Proton Therapy is almost entirely ignored in these discussion. Further looking at PCRI and other YT videos, it probably is the most dated in what is being produced. Do you have any idea why this is? I’m starting next month on that process but am becoming concerned that it is not mentioned any more?

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@robertov
I think why proton radiation treatments is not mentioned as much as RP and photon as it is fairly new compared to photon radiation and not as many medical centers offer it as very expensive.

I think back in 2006 a Loma Lima (not sure of spelling) and UFHPTI were the only major centers doing proton radiation treatments. The numbers of centers now doing them has really expanded. But again, it is expensive and the gantries and treatment rooms are much more expensive and technical than photon.

Most of the discussions here you will see are those who have had RP and, or not, hormone treatments. The second will be SBRT type photon radiation and or not with hormones. Proton centers are just expensive. Both Rochester and Phoenix Mayo have proton radiation and offer patients that type of treatments. Mayo Jacksonville does not have proton just photon radiation. They are building a new cancer center that will open in 2026.

What does Mayo Jacksonville think of proton radiation. Many of the patients referred to UFHPTI are being referred there from Mayo. I was overwhelmed when I went through treatments as UFHPTI seeing all the children that were there. Proton radiation offers the most precise treatments and does not exit body beyond treatment area that photon does. Eye cancers, brain, and of course trying to reduce the amount of radiation damage in children.

There are so many more centers offering photon than proton. I was told UFHPTI when built in 2006 cost 125 million. They just went throught a complete upgrade of their gantries and equipment for 25 million. It is a huge facility. The five gantries they have take up a lot of room.

I get Mayo Clinic newsletters. What I read recently was research and trials coming up on a new protein therapy that attacks the prostate cancer cells only and leaves normal cells alone. I don't think it has reached trials yet but if it works would drastically changed treatments.

I really thank Mayo Jacksonville for providing me with the best PCP doctor I have ever encountered who would not ignore my rising PSA levels even though still normal number. It was he that asked me to consider going to UFHPTI for proton radiation treatments because he did a lot of medical research there. It is not that photon radiation does not work. The two types basically (per my PCP not me) have same success rate. The difference is that proton goes in body a lower intensity than photon and stops a treament mark. Those in theory the additional damage to surronding organs and tissues is reduced. It also is a very precise beam. I know at UFHPTI they have a physic department that fine tunes every treatment.

REPLY

UFHPTI was given a 25 million dollar grant to do long term research and study on radiation treatments.

Some poster will post that not any difference. What research has shown per my Mayo PCP, UFHPTI R/O and studies is that the success rate of each time of radiation on prostate cancer are the same. What is not clear is the additional damage to surrounding organs and tissues that photon creates as it passes through body versus proton stopping at the programmed treatment.

As I mentioned at UFHPTI proton radiationis used on children to keep radiation damage down to surrounding organs and tissues as their life span is so long. It is also very precise (I hand pencil beam because I have a ICD/pacemaker and wanted to keep radiation away from device as much a possible.

The usage of drinking water and have SpaceOar is being studied also as to how much it is benefiting the patient. It would seem practical if you can move your bladder and your colon away from the radiation it would benefit. This is again a reason proton radiation does not continue through body like photon does. Thus the same conclusion that it would reduce the secondary damage done ot surrounding organs and tissues NOT the succces rate of treating the prostate cancer as all my doctors have stated the studies reveal same success rate.

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@robertov

Hi jc, I follow your comments studiously. Just started a discussion on why Proton Therapy is almost entirely ignored in these discussion. Further looking at PCRI and other YT videos, it probably is the most dated in what is being produced. Do you have any idea why this is? I’m starting next month on that process but am becoming concerned that it is not mentioned any more?

Jump to this post

Proton regularly comes up. However, what drives the discussion:
> Availability. There are only 46 active Proton centers in the U.S. (https://www.proton-therapy.org/map/)
> Price. Proton radiation treatments cost 3x the price of photon radiation. So, cost vs benefit is why many hospitals/centers don’t offer it and many doctors don’t recommend it.

I had 28 sessions of proton radiation at the University of Cincinnati during April-May 2021. Results have been good and uneventful.

In this 2023 mid-year Prostate Cancer Patient Conference, Dr. Rossi has a lot of information about proton in his presentation: https://www.youtube.com/live/WTqPnSRYtW4?feature=share
—> Starting at 3:38:45

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Thanks jc, I’ll follow that up. Glad to hear you had it and it was uneventful!

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@jc76

@robertov
I think why proton radiation treatments is not mentioned as much as RP and photon as it is fairly new compared to photon radiation and not as many medical centers offer it as very expensive.

I think back in 2006 a Loma Lima (not sure of spelling) and UFHPTI were the only major centers doing proton radiation treatments. The numbers of centers now doing them has really expanded. But again, it is expensive and the gantries and treatment rooms are much more expensive and technical than photon.

Most of the discussions here you will see are those who have had RP and, or not, hormone treatments. The second will be SBRT type photon radiation and or not with hormones. Proton centers are just expensive. Both Rochester and Phoenix Mayo have proton radiation and offer patients that type of treatments. Mayo Jacksonville does not have proton just photon radiation. They are building a new cancer center that will open in 2026.

What does Mayo Jacksonville think of proton radiation. Many of the patients referred to UFHPTI are being referred there from Mayo. I was overwhelmed when I went through treatments as UFHPTI seeing all the children that were there. Proton radiation offers the most precise treatments and does not exit body beyond treatment area that photon does. Eye cancers, brain, and of course trying to reduce the amount of radiation damage in children.

There are so many more centers offering photon than proton. I was told UFHPTI when built in 2006 cost 125 million. They just went throught a complete upgrade of their gantries and equipment for 25 million. It is a huge facility. The five gantries they have take up a lot of room.

I get Mayo Clinic newsletters. What I read recently was research and trials coming up on a new protein therapy that attacks the prostate cancer cells only and leaves normal cells alone. I don't think it has reached trials yet but if it works would drastically changed treatments.

I really thank Mayo Jacksonville for providing me with the best PCP doctor I have ever encountered who would not ignore my rising PSA levels even though still normal number. It was he that asked me to consider going to UFHPTI for proton radiation treatments because he did a lot of medical research there. It is not that photon radiation does not work. The two types basically (per my PCP not me) have same success rate. The difference is that proton goes in body a lower intensity than photon and stops a treament mark. Those in theory the additional damage to surronding organs and tissues is reduced. It also is a very precise beam. I know at UFHPTI they have a physic department that fine tunes every treatment.

Jump to this post

Again, thanks jc!
Always informative and helpful. Reducing toxicity is a key for me. I started down the PT path based on results being so similar but reduced toxicity. Whatever is published, I realize there is always some noise in studies, even randomized ones, long term ones, etc.

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@brianjarvis

Proton regularly comes up. However, what drives the discussion:
> Availability. There are only 46 active Proton centers in the U.S. (https://www.proton-therapy.org/map/)
> Price. Proton radiation treatments cost 3x the price of photon radiation. So, cost vs benefit is why many hospitals/centers don’t offer it and many doctors don’t recommend it.

I had 28 sessions of proton radiation at the University of Cincinnati during April-May 2021. Results have been good and uneventful.

In this 2023 mid-year Prostate Cancer Patient Conference, Dr. Rossi has a lot of information about proton in his presentation: https://www.youtube.com/live/WTqPnSRYtW4?feature=share
—> Starting at 3:38:45

Jump to this post

@brianjarvis
Good information. It is why proton is not as widely available as photon.

I think but not sure that Medicare at one time was not approving proton but changed and is now covered. Mine treatments were covered by Medicare.

I was not aware that there were only 46 active proton centers in U.S. That really explains that most radiation offered to patients is photon.

I think those reading these posts can see that medical experts are not saying that proton carries a higher success rate of treatment of prostate cancer than photon. Per my PCP, R/O at Mayo, R/O as UFHPTI all said the same. The biggest difference told to me by all my medical specialist is that proton does not proceed past the target area and out through body.

Studies are going on and on about this and just how much advantage this gives long term for radiation damage and secondary cancers caused by radiation treatments. I know my Mayo R/O said to me when trying to seel Photon SBRT was, "Oh the secondary cancers caused by radiation you would not have to deal with them for 10 years." I said to myself wow. And that is when I made up my mind to do as much a possible to prevent any further damage than necessary to other organs and tissues.

My PCP (Mayo) and I sat for an hour consultation going over all the two opinions I got and we both decided what was best for me was the low dose, 30 rounds of proton radiation at UFHPTI.

Each person though needs to do same thing. Do what is best for them both mentally and physically and not what another did as may not be the best for you as an individual.

REPLY
@jc76

@brianjarvis
Good information. It is why proton is not as widely available as photon.

I think but not sure that Medicare at one time was not approving proton but changed and is now covered. Mine treatments were covered by Medicare.

I was not aware that there were only 46 active proton centers in U.S. That really explains that most radiation offered to patients is photon.

I think those reading these posts can see that medical experts are not saying that proton carries a higher success rate of treatment of prostate cancer than photon. Per my PCP, R/O at Mayo, R/O as UFHPTI all said the same. The biggest difference told to me by all my medical specialist is that proton does not proceed past the target area and out through body.

Studies are going on and on about this and just how much advantage this gives long term for radiation damage and secondary cancers caused by radiation treatments. I know my Mayo R/O said to me when trying to seel Photon SBRT was, "Oh the secondary cancers caused by radiation you would not have to deal with them for 10 years." I said to myself wow. And that is when I made up my mind to do as much a possible to prevent any further damage than necessary to other organs and tissues.

My PCP (Mayo) and I sat for an hour consultation going over all the two opinions I got and we both decided what was best for me was the low dose, 30 rounds of proton radiation at UFHPTI.

Each person though needs to do same thing. Do what is best for them both mentally and physically and not what another did as may not be the best for you as an individual.

Jump to this post

Medicare paid 80% of the cost of my proton radiation treatments (my supplement plan covered the 20% that Medicare didn’t).

Technically, Proton with its Bragg-Peak characteristic (“…proton does not proceed past the target area and out through body.”), should provide fewer QOL side-effects than standard IMRT/photon. (That is ultimately why I chose Proton.)

There are two clinical trials looking into this; COMPPARE and PARTIQoL.
> The PARTIQoL trial’s interim results indicate that both therapies achieved similar tumor control rates and patient-reported quality of life outcomes. Specifically, there was no significant difference in progression-free survival or patient-reported outcomes like urinary, bowel, and sexual function. (These results are interesting. If proton performs better than photon for brain, liver, and other cancer tumors, are the rad oncs not doing the complicated calculations correctly for prostate, or are other factors at play? Hopefully, the laws of physics still apply to prostate cancer……?)

> The COMPPARE trial is another large-scale study also comparing proton therapy and IMRT, but with a different focus on patient-reported outcomes. The COMPPARE trial is still ongoing.

See the attached Bragg-Peak characteristics graphic.

As for secondary cancers, those occur when radiation overshoots the prostate and hits otherwise healthy organs and tissues. So, the better the radiation accurately and precisely hits only the prostate, the lower the risk of secondary cancers. (I did use SpaceOAR Vue, just in case…..). . Just as important, not only the accurate/precise radiation, but also the dosimetrist (who calculates the correct biological effective dose), the physicist (who designs and shapes the beam, ensuring the tumor is targeted while minimizing exposure to surrounding healthy tissue), the radiation technicians (who are truly hands-on the radiation system), and of course the radiation oncologist (who I liken to a team manager). If they all do their jobs right, we come out with no side/after-effects!

With my proton treatments, they gave me three options:
> 20 sessions at 3.0 Grays per session,
> 28 sessions at 2.5 Grays per session, or
> 39 sessions at 2.0 Grays per session.
(As is typical for me, I picked Door #2.)

Finally, with all the research that I did, I overlooked one thing —> I was caught by surprise on the last day as I was leaving the proton radiation treatment facility. The entire radiation team was gathered around with a Certificate of (proton radiation treatment) Completion that they had all signed, as well as a bell for me to ring. Somehow, In all my studying up on various treatments, I missed that protocol for completion of radiation treatment. Still, that day was as much for them (as a team) as it was for me, so I completed that final task just before I left.

REPLY

If you watch the 2023 PCRI Video and see Dr. Carl Rossi talking about radiation you find some interesting things. For one he’s been doing Proton radiation treatments since 1994 when they built a building for the machine in San Diego. The first patient was the person that invented it, He lived to over 100. He has done Proton radiation on over 13,000 prostate cancer patients.

That video link is in the @brianjarvis message a few messages above this one.

Proton therapy definitely causes less secondary cancers than other radiation therapies. They prefer to use it in children to avoid secondary cancer risk over their lifetime. Proton therapy machines have been extremely expensive to build or treat patients, which is why it is so much more expensive and less used. They have finally been able to get a proton machine built in one and two rooms, which will greatly reduce the expense. Eventually, it seems proton, will probably be equal in priced to other techniques and will be used much more often.

Some information about secondary cancer risk

Stanford Edu
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.

Here is a link to the full study from Stanford

Prostate radiation only slightly increases the risk of developing another cancer, Stanford researchers find
https://med.stanford.edu/news/all-news/2022/070/prostate-radiation-slightly-increases-the-risk-of-developing-ano.html
The question with proton therapy is how long will you live? For somebody in their 60s desiring to live Another 20-40 years, it’s nice not to worry about secondary cancers. For somebody who is 75 the risk of a secondary cancer is very low so the lesser expensive therapies make more sense, or do they.

While we’re talking about it, here’s some info about the secondary Cancer risk of different types of radiation.

Studies suggest that SBRT may be associated with a lower risk of developing a second malignancy compared to other radiation modalities like conventionally fractionated intensity-modulated radiotherapy (CF-IMRT) and brachytherapy (BT), according to ScienceDirect.com. Another study found that SBRT's probability of causing secondary cancers was similar to that of radical prostatectomy (surgery), according to ScienceDirect.com.

I had salvage radiation at 67 and 10 years later no secondary cancers.

And lastly, here is a map of where the proton centers are located, it doesn’t show the exact location. Mayo in Scottsdale has one apparently. Surprising how most of them are on the eastern side of the USA.

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