Proton therapy: Why there are different numbers of treatments?

Posted by kkp10 @kkp10, Jan 16, 2023

My husband is considering proton beam radiation at the Jacksonville center. Do the number of treatments vary by location? Can anyone explain why there are different numbers of treatments?

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I am not a doctor so I can't give you a definitive answer.
My own experience with PBT was that I had prep and then five treatments spread over 2 weeks (early 2020). I was at the Mayo Clinic in Rochester. My prostate cancer was an anterior tumor (front) with little or no involvement of the prostate out covering.
In subsequent conversations I have discovered that the Mayo in Scottsdale (in 2020) was doing (I think) five treatments per week for five weeks. In conversation with my radiation oncologist at M/Rochester he said that more of the doctors in Scottsdale have taken up the five treatment total.
I am aware of other (non Mayo) Proton Beam facilities that use the longer protocol. I don't have the information about whether these facilities have the same equipment to deliver in the same way.
AND, of course what is appropriate is patient and disease dependent.
Its my understanding that the total amount of radiation received is the same with either protocol.
Theoretically, the longer protocol might cause less damage to incidental tissue.
New delivery technologies and the use of the SpaceOar separator (pushes the bowel and prostate apart) may mitigate any advantage to the longer protocol.
A shorter protocol also makes the protocol more accessible to people who can't mange the extended time away from home. In some settings (I think not Mayo) a longer protocol is a 'reason' for larger charges for treatment.

KKP10 I think you and your husband could reasonably ask:
Do any Jacksonville doctors give any patients the shorter protocol? (be pushy about this )
If they do, what is the reason that your husband is scheduled for the longer protocol. (I'm assuming)
What is the current data that supports the longer protocol vs the shorter (i.e. less damage, more efficacious, etc/
Remember that you could reasonably ask for a video consult with radiation oncology doc at Rochester for their opinion about your husbands suitability for the shorter protocol. I could private message you a contact phone number.

and as I wrote elsewhere in connect recently Rochester in the winter is more than OK. Especially if only 2.5 weeks.

Best of luck.

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Welcome @kkp10, I hope you saw the helpful reply from @jimcinak. I'm also tagging fellow members like @dandl48 @gregorylynn @jrhamp @joenfl2017 @bens1 to share their experiences.

In the meantime, I think you'll find the information shared in these 2 related discussions to be useful:
- Anyone had the 5 treatment proton therapy for prostate cancer? https://connect.mayoclinic.org/discussion/anyone-had-the-5-treatment-proton-therapy-for-prostate-cancer/
– Starting Proton Treatments for Prostate Cancer: Any experiences? https://connect.mayoclinic.org/discussion/starting-proton-treatments/

When does your husband start treatment?

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KKP10,
Just finished 5 dose regimen at Mayo Rochester. Last treatment was 1/19. Mayo Clinic Rochester is an amazing place. People are extraordinarily nice, supportive, understanding, knowledgeable and professional. My treat ment started with first two days in prep and consultation. Blood work was done, CT scan, short MRI, followed by insertion of 4 carbon markers in prtostate gland along with Spaceoar Hydrogel between rectum and prostate. These were the ONLY invasive activities associated with entire process. Lidocaine is used to reduce pain during procedures. If you handled the biopsy without significant pain, you will likely experience even less with the prep proceudres for proton beam radiation.

The next step is the 5 days of radiation treatments which are painless, and simple... just lay still and wait for The Beam. The treatments are more wait time than actual radiation. I tried to determine the total radiation time and estimated 5 minutes total. That's it.

Given the winter I considered Scottsdale but made the choice of Rochester due to experiece, total staff and the reviews that I read on boards like this and elsewhere. Would also recommend reading Dr. Walsh's "Surviving Prastate Cancer" which is very reassuring especially for one with Gleason 6 level cancer.

Best wishes,

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Can't add anything to @jb2buckwater above post; Mayo Rochester is an amazing and wonderful place to be treated for prostate cancer. I had the 5 treatments over 10 days back in 9/2020 and my PSA has remained at <.01. Next blood work will be done in April.

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@jimcinak

I am not a doctor so I can't give you a definitive answer.
My own experience with PBT was that I had prep and then five treatments spread over 2 weeks (early 2020). I was at the Mayo Clinic in Rochester. My prostate cancer was an anterior tumor (front) with little or no involvement of the prostate out covering.
In subsequent conversations I have discovered that the Mayo in Scottsdale (in 2020) was doing (I think) five treatments per week for five weeks. In conversation with my radiation oncologist at M/Rochester he said that more of the doctors in Scottsdale have taken up the five treatment total.
I am aware of other (non Mayo) Proton Beam facilities that use the longer protocol. I don't have the information about whether these facilities have the same equipment to deliver in the same way.
AND, of course what is appropriate is patient and disease dependent.
Its my understanding that the total amount of radiation received is the same with either protocol.
Theoretically, the longer protocol might cause less damage to incidental tissue.
New delivery technologies and the use of the SpaceOar separator (pushes the bowel and prostate apart) may mitigate any advantage to the longer protocol.
A shorter protocol also makes the protocol more accessible to people who can't mange the extended time away from home. In some settings (I think not Mayo) a longer protocol is a 'reason' for larger charges for treatment.

KKP10 I think you and your husband could reasonably ask:
Do any Jacksonville doctors give any patients the shorter protocol? (be pushy about this )
If they do, what is the reason that your husband is scheduled for the longer protocol. (I'm assuming)
What is the current data that supports the longer protocol vs the shorter (i.e. less damage, more efficacious, etc/
Remember that you could reasonably ask for a video consult with radiation oncology doc at Rochester for their opinion about your husbands suitability for the shorter protocol. I could private message you a contact phone number.

and as I wrote elsewhere in connect recently Rochester in the winter is more than OK. Especially if only 2.5 weeks.

Best of luck.

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I am at Mayo in Scottsdale and have not started yet. I have the marker implants and SpaceOar scheduled for 3/24/23. My oncologist originally wanted 6 month ADT but at my age of 73.5 studies have shown almost no difference at all in reoccurrence and survival for men over 70. Under 70 you should get the ADT. I have been on T replacement since 2008 and stopped twice for bloodwork and went castrate in 60 hours. My oncologist test me since I stopped just to cover my bet and I got a reading of 12 ng/dl and I think he was surprised that I was correct. He also wanted the 28 radiation treatments until I consulted a Cyberknife facility here in Phoenix and all of a sudden he could do 5 treatments. I know they have been doing 5 in Rochester so I will do 5 here. 5 80 minute round trips vs 28 with Biden's gas prices is way cheaper.

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MikeWo, if it makes any sense to not shuttle back and forth every other day (of the three treatment week) you might look at staying at the Hope Lodge. I don't know much about it but there are Hope Lodges in multiple cities (including Rochester, MN). Might be an inexpensive alternative to the drive. You could use your no-appointment days to see what's around. When I took my 'no appointments week) we went to AZ and among other things we went to the Frank Lloyd Wright Taliesin West in Scottsdale.

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It is/was my understanding after a recent consultation that Mayo in Jacksonville was not offering Proton treatments as they will not have the equipment for a few years. Meaning no disrespect to the forum we are on, UF Jacksonville does offer Proton radiation with excellent reviews. Has something changed?

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@michael219

It is/was my understanding after a recent consultation that Mayo in Jacksonville was not offering Proton treatments as they will not have the equipment for a few years. Meaning no disrespect to the forum we are on, UF Jacksonville does offer Proton radiation with excellent reviews. Has something changed?

Jump to this post

@michael219 is right. Mayo Clinic's proton beam facility at the Jacksonville campus is currently under construction.

If proton beam therapy is recommended by Mayo experts, then the team can work with University of Florida department or Florida patients can choose to have proton beam therapy at the Rochester, Minnesota campus.

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@jimcinak

MikeWo, if it makes any sense to not shuttle back and forth every other day (of the three treatment week) you might look at staying at the Hope Lodge. I don't know much about it but there are Hope Lodges in multiple cities (including Rochester, MN). Might be an inexpensive alternative to the drive. You could use your no-appointment days to see what's around. When I took my 'no appointments week) we went to AZ and among other things we went to the Frank Lloyd Wright Taliesin West in Scottsdale.

Jump to this post

Thanks, but 40 minutes each way on the 101 door to door for 5 treatments was way better than for 28 treatments and all that driving. I just find it interesting that when I mentioned getting 5 treatments from a CyberKnife facility all of a sudden, we can do 5 here too. I have already been to Frank's place as I live in Phoenix and I am waiting till Spring Training baseball is over to get my implants and SpaceOar Gel. Can't stop living life.

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Kkp10: Generally, nccn.org, created by dr’s for dr’s and patients provides a full complement of radiation therapy recommendations. Radiation treatments from machine to machine are different. Part of that is the issue of the mm’s of margins used in the machine type that can have a HUGE impact on how much healthy tissue gets radiated and therefore quality of life.

I did 5 treatments with the MRIdian Viewray machine at Orlando health. They also have the proton therapy machine. After discussions with 5 radiation oncologists mostly from different institutions, I was able to choose the MRIdian. There is a reason that new technology gets offered and in this case it was because of reduced margins, automatic shutoff and one unit MRI/Radiation combo.
Spaceoar made sense to me but the urinary issues were more vulnerable with wider radiation margins so again, the narrower margins made a difference for me.
Cornell Weill/Colombian Presbyterian in NYC is doing a one treatment clinical study vs the 5 treatments with the MRIdian. Generally, I found that the radiation oncologists did not really discuss the differences in one machine versus another even when they owned more than one type of radiation machine. The fallback seemed to be the outcomes were the same without really talking about the subtleties related to quality of life.

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