Anyone had Proton Beam SBRT radiation at Mayo Clinic?

Posted by cmartin65 @cmartin65, Apr 10 3:13pm

Has anyone recently had SBRT/PBT (5 treatments) done at Mayo for PCa?

Hi @cmartin65
As you likely already know, proton beam (charged particle) is the newest type of stereotactic radiotherapy and is available in only a few research centers in the U.S., although the number of centers offering proton beam therapy has increased in the last few years. It can use fractionated stereotactic radiotherapy to treat body tumors over several sessions. Proton beam SBRT may be used to treat tumors that have previously received radiation therapy, or those that are near critical organs.

I'm bringing in @bseibel @dandl48 @remoteman7 @sannira @paul805 @ronan2011 @horace1818 @waynen @403211th @kujhawk1978 @vernonkent @ken82 and @hodagwi into this discussion as I believe they have all received treatment at Mayo Clinic and may or may not have had radiation.

Chuck, what questions do you have about protom beam SBRT? Are you being offered different options? Have you already had radiation?

REPLY
@colleenyoung

Hi @cmartin65
As you likely already know, proton beam (charged particle) is the newest type of stereotactic radiotherapy and is available in only a few research centers in the U.S., although the number of centers offering proton beam therapy has increased in the last few years. It can use fractionated stereotactic radiotherapy to treat body tumors over several sessions. Proton beam SBRT may be used to treat tumors that have previously received radiation therapy, or those that are near critical organs.

I'm bringing in @bseibel @dandl48 @remoteman7 @sannira @paul805 @ronan2011 @horace1818 @waynen @403211th @kujhawk1978 @vernonkent @ken82 and @hodagwi into this discussion as I believe they have all received treatment at Mayo Clinic and may or may not have had radiation.

Chuck, what questions do you have about protom beam SBRT? Are you being offered different options? Have you already had radiation?

Jump to this post

I personally did not want radiation treatments, so went ahead with prostate surgery on 2/28. I did talk to Mayo about treatments, but did it in my home state of VT which was great to be 6 miles from homes instead of 1000 miles away and all that would entail………

REPLY
@colleenyoung

Hi @cmartin65
As you likely already know, proton beam (charged particle) is the newest type of stereotactic radiotherapy and is available in only a few research centers in the U.S., although the number of centers offering proton beam therapy has increased in the last few years. It can use fractionated stereotactic radiotherapy to treat body tumors over several sessions. Proton beam SBRT may be used to treat tumors that have previously received radiation therapy, or those that are near critical organs.

I'm bringing in @bseibel @dandl48 @remoteman7 @sannira @paul805 @ronan2011 @horace1818 @waynen @403211th @kujhawk1978 @vernonkent @ken82 and @hodagwi into this discussion as I believe they have all received treatment at Mayo Clinic and may or may not have had radiation.

Chuck, what questions do you have about protom beam SBRT? Are you being offered different options? Have you already had radiation?

Jump to this post

I had protein beam radiation treatment at the Mayo Clinic in Phoenix January 2019. I had 20 treatments and don't think the 5 treatment option was available to me. I did talk to a man who had 5 treatments at the Rochester Mayo Clinic in 2018. He was part of a trial to see how severe were the side effects. I saw a study report that the side effects were no greater than with the 20 treatments that I had. The person I talked to was pretty satisfied with the 5 treatments. He had to travel several hours each day to get the treatments, so he appreciated only needing 5 treatments.

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I had radiation at Sloan Kettering in New York City in 2005 and don't believe it was this new treatment. The 25 radiation treatments ended up weakening a lot of my bladder and colon tissues so now have frequent infections. Anything more focused should minimize side effects and still be effective

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(Edited, to add info) To answer the original question, –I am not one that had Proton Beam SBRT. I did go to the Mayo PHX during Sept-Dec 2019. My oncologist first suggested the PB SBRT. but as Colleen stated, it is new enough that it is still only available at a few centers (but, expensive, including even the cost of having built any center for it.), and despite several efforts by some, my insurance would not cover it at the time. So, we went with the IMRT, and hsd 38 sessions. (I am aged 67, as well. My PC was contained within the prostate, and the IMRT had multiple modulations to it, in order to avoid the nearby organs. I also had the SpaceOar put in there, prior to the radiation treatments, to protect the rectum.)
There was also the offer of the 5 visit type, but in researching it, I just felt better about having more sessions, rather thsn fewer. We had a friend's home to rent for a fair price, and so we were able to stay in the area. I had plenty of Sick Leave time w/work, and used FMLA. I was very satisfied with my oncologist there, the entire cancer center workers, and my prognosis.
Many in our family have been patients at both Mayos in Rochester and Phoenix, for a multitude of issues. We love that records can be viewed by all the depts, as needed, even in different locations, and that once you are a patient there, all depts are available to you, and there are not Multiple charges for "new patient fees" every time you have to be seen at a different dept. They ALL work as a Team. We highly recommend the Mayo.

Liked by cmartin65

REPLY
@colleenyoung

Hi @cmartin65
As you likely already know, proton beam (charged particle) is the newest type of stereotactic radiotherapy and is available in only a few research centers in the U.S., although the number of centers offering proton beam therapy has increased in the last few years. It can use fractionated stereotactic radiotherapy to treat body tumors over several sessions. Proton beam SBRT may be used to treat tumors that have previously received radiation therapy, or those that are near critical organs.

I'm bringing in @bseibel @dandl48 @remoteman7 @sannira @paul805 @ronan2011 @horace1818 @waynen @403211th @kujhawk1978 @vernonkent @ken82 and @hodagwi into this discussion as I believe they have all received treatment at Mayo Clinic and may or may not have had radiation.

Chuck, what questions do you have about protom beam SBRT? Are you being offered different options? Have you already had radiation?

Jump to this post

Colleen,
Thanks for your reply! I was offered SBRT/PBT at Mayo for my PCa. It appears that this is a study (new research) with 5 treatments vs 39 treatments. I was wondering about short and long term side effects and cure rates compared to conventional IMRT and SBRT/Cyberknife.

REPLY
@ronan2011

I personally did not want radiation treatments, so went ahead with prostate surgery on 2/28. I did talk to Mayo about treatments, but did it in my home state of VT which was great to be 6 miles from homes instead of 1000 miles away and all that would entail………

Jump to this post

Dave, thanks for your reply!

REPLY
@waynen

I had protein beam radiation treatment at the Mayo Clinic in Phoenix January 2019. I had 20 treatments and don't think the 5 treatment option was available to me. I did talk to a man who had 5 treatments at the Rochester Mayo Clinic in 2018. He was part of a trial to see how severe were the side effects. I saw a study report that the side effects were no greater than with the 20 treatments that I had. The person I talked to was pretty satisfied with the 5 treatments. He had to travel several hours each day to get the treatments, so he appreciated only needing 5 treatments.

Jump to this post

Thanks Waynen for your reply!

REPLY
@hodagwi

I had radiation at Sloan Kettering in New York City in 2005 and don't believe it was this new treatment. The 25 radiation treatments ended up weakening a lot of my bladder and colon tissues so now have frequent infections. Anything more focused should minimize side effects and still be effective

Jump to this post

Thanks Hodagwi for your reply!

REPLY
@remoteman7

(Edited, to add info) To answer the original question, –I am not one that had Proton Beam SBRT. I did go to the Mayo PHX during Sept-Dec 2019. My oncologist first suggested the PB SBRT. but as Colleen stated, it is new enough that it is still only available at a few centers (but, expensive, including even the cost of having built any center for it.), and despite several efforts by some, my insurance would not cover it at the time. So, we went with the IMRT, and hsd 38 sessions. (I am aged 67, as well. My PC was contained within the prostate, and the IMRT had multiple modulations to it, in order to avoid the nearby organs. I also had the SpaceOar put in there, prior to the radiation treatments, to protect the rectum.)
There was also the offer of the 5 visit type, but in researching it, I just felt better about having more sessions, rather thsn fewer. We had a friend's home to rent for a fair price, and so we were able to stay in the area. I had plenty of Sick Leave time w/work, and used FMLA. I was very satisfied with my oncologist there, the entire cancer center workers, and my prognosis.
Many in our family have been patients at both Mayos in Rochester and Phoenix, for a multitude of issues. We love that records can be viewed by all the depts, as needed, even in different locations, and that once you are a patient there, all depts are available to you, and there are not Multiple charges for "new patient fees" every time you have to be seen at a different dept. They ALL work as a Team. We highly recommend the Mayo.

Jump to this post

Thanks Remoteman for your very informative reply. Like you, I'm somewhat hesitant about the 5 treatments with SBRT PBT, without any studies demonstrating short or long term effects with this newer treatment, not to mention cure rates. IMRT appears to be the standard of care for radiation treatment. I can imagine 5 treatments of protons vs 39 treatments of photons brings the cost to each comparable.

REPLY
@colleenyoung

Hi @cmartin65
As you likely already know, proton beam (charged particle) is the newest type of stereotactic radiotherapy and is available in only a few research centers in the U.S., although the number of centers offering proton beam therapy has increased in the last few years. It can use fractionated stereotactic radiotherapy to treat body tumors over several sessions. Proton beam SBRT may be used to treat tumors that have previously received radiation therapy, or those that are near critical organs.

I'm bringing in @bseibel @dandl48 @remoteman7 @sannira @paul805 @ronan2011 @horace1818 @waynen @403211th @kujhawk1978 @vernonkent @ken82 and @hodagwi into this discussion as I believe they have all received treatment at Mayo Clinic and may or may not have had radiation.

Chuck, what questions do you have about protom beam SBRT? Are you being offered different options? Have you already had radiation?

Jump to this post

In reply to @coleenyoung @cmartin65 and others, I just finished four weeks ago with 39 daily proton beam treatments at Mayo Phoenix. The entire experience was excellent.
I had read of potential side effects, including urinary and bowel issues. For me, any side effects were minor and did not include any urinary or bowel issues at all. Throughout treatment, I felt very good was able to continue essentially the same routine as before treatment — except of course, carving out the time to go to and from Mayo for treatment. I even got in a couple rounds of golf. The doctors, nurses and techs were excellent as well.
I give much credit for my good experience to the proton beam technology, that minimizes extraneous radiation that could impact the colon, urethra, bladder, etc.
I am grateful proton beam therapy was available for my treatment at Mayo, that my insurance and Medicare would cover it, and that I now consider myself a “cancer survivor!”

Liked by cmartin65

REPLY
@vernonkent

In reply to @coleenyoung @cmartin65 and others, I just finished four weeks ago with 39 daily proton beam treatments at Mayo Phoenix. The entire experience was excellent.
I had read of potential side effects, including urinary and bowel issues. For me, any side effects were minor and did not include any urinary or bowel issues at all. Throughout treatment, I felt very good was able to continue essentially the same routine as before treatment — except of course, carving out the time to go to and from Mayo for treatment. I even got in a couple rounds of golf. The doctors, nurses and techs were excellent as well.
I give much credit for my good experience to the proton beam technology, that minimizes extraneous radiation that could impact the colon, urethra, bladder, etc.
I am grateful proton beam therapy was available for my treatment at Mayo, that my insurance and Medicare would cover it, and that I now consider myself a “cancer survivor!”

Jump to this post

Thanks Vernonkent for your reply. Were you offered the 5 treatment SBRT PBT? Did you say you had some minor side effects? I glad to hear Medicare covered the treatment, hopefully my tricare will cover the rest!

REPLY
@colleenyoung

Hi @cmartin65
As you likely already know, proton beam (charged particle) is the newest type of stereotactic radiotherapy and is available in only a few research centers in the U.S., although the number of centers offering proton beam therapy has increased in the last few years. It can use fractionated stereotactic radiotherapy to treat body tumors over several sessions. Proton beam SBRT may be used to treat tumors that have previously received radiation therapy, or those that are near critical organs.

I'm bringing in @bseibel @dandl48 @remoteman7 @sannira @paul805 @ronan2011 @horace1818 @waynen @403211th @kujhawk1978 @vernonkent @ken82 and @hodagwi into this discussion as I believe they have all received treatment at Mayo Clinic and may or may not have had radiation.

Chuck, what questions do you have about protom beam SBRT? Are you being offered different options? Have you already had radiation?

Jump to this post

Hi Colleen,
I just want to clarify the fact that I am neither being treated nor have I received any treatment at Mayo. I am getting my treatment at the University Of Iowa, Holden Cancer Center. Initially, I was considering Mayo. They looked at the treatment options presented by the UI clinic and indicated that they would not be offering anything different so I started my treatment at the University clinics.
While I was waiting for the second opinion from Mayo, I joined this support group.
My current treatment plan includes radiation after I complete my chemo. I will see if Proton beam radiation is an option.

REPLY
@cmartin65

Thanks Remoteman for your very informative reply. Like you, I'm somewhat hesitant about the 5 treatments with SBRT PBT, without any studies demonstrating short or long term effects with this newer treatment, not to mention cure rates. IMRT appears to be the standard of care for radiation treatment. I can imagine 5 treatments of protons vs 39 treatments of photons brings the cost to each comparable.

Jump to this post

In comparison, Proton treatments are much more than photons, costwise…. even with much lesser numbers of the former. But, if one's insurance or Medicaid will cover the Proton treatments, I do feel it's definitely a choice still. Even with Proton treatments, they are sometimes done with more treatments than 5. I've discovered that different oncologists, even when they're all located at the Mayo clinics, all still have varying #'s of sessions they prescribe, no matter the type of radiation. All of that is determined, too, of course, to each patient's evaluations individually. My wife and I met a number of patients, even in the IMRT treatment section, that would have varying amounts of prescribed sessions from 5 to 42. One thing you can trust, tho, that each is doing the Best for that particular PC patient. 🙂

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This is a good group/newsletter I found out about when we first arrived at Phx Mayo last Sept, to meet with the Urology and Oncology depts there. In this particular newsletter from March this year, there is an article that is about an ongoing 5-yr study of about 3000 participants, who were treated at varying facilities, that is comparing different results, side effects, futures, etc., of PC patients involved with IMRT vs. Proton treatments. It is not about batting one over the other, but is just a study that is comparing the two. I thought you and some others might be interested in it. https://protonbob.com/2020-03-protonbobtales

Liked by cmartin65

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