Anyone had Proton Beam SBRT radiation at Mayo Clinic?

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?

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!”

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?

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.

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.

I can understand your concern. Mayo has published a report on their research comparing urinary and bowel issues from Hypofractionated proton beam therapy with 5 administrations to a larger number of administrations of typical strength proton beams. They found no differences in effects. They followed up for 18 to 25 months.

I have to mention that the choice is not between 5 and 39. My Gleason score was 4+4 or 8. It was at advanced stage. My treatment included 3 shots of Antigen Deprivation Therapy and 20 proton beam sessions. I was told that the number of radiation sessions was dependent on the containment of the cancer and health of patient. I had some urinary issues, pain and frequency. With medications the problem was controlled.

The guidelines for treating PCa also recommends that ADT is used concurrently with the radiation treatment, especially for patients with more advanced cancer like mine. I met other patients with lower Gleason scores who didn't need ADT. ADT has its own side effects that were manageable. Your oncologist should be able to tell you what treatment is best for you. I learned that one size doesn't fit all. Mayo doctors are really on top of the issues that affect treatments. In my case they had 13 doctors consult on the case.

I can understand your concern. Mayo has published a report on their research comparing urinary and bowel issues from Hypofractionated proton beam therapy with 5 administrations to a larger number of administrations of typical strength proton beams. They found no differences in effects. They followed up for 18 to 25 months.

I have to mention that the choice is not between 5 and 39. My Gleason score was 4+4 or 8. It was at advanced stage. My treatment included 3 shots of Antigen Deprivation Therapy and 20 proton beam sessions. I was told that the number of radiation sessions was dependent on the containment of the cancer and health of patient. I had some urinary issues, pain and frequency. With medications the problem was controlled.

The guidelines for treating PCa also recommends that ADT is used concurrently with the radiation treatment, especially for patients with more advanced cancer like mine. I met other patients with lower Gleason scores who didn't need ADT. ADT has its own side effects that were manageable. Your oncologist should be able to tell you what treatment is best for you. I learned that one size doesn't fit all. Mayo doctors are really on top of the issues that affect treatments. In my case they had 13 doctors consult on the case.

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. 🙂