Anyone had Proton Beam SBRT radiation at Mayo Clinic?

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

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

@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

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.

REPLY
@waynen

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.

Jump to this post

Thanks, makes sense!

REPLY
@waynen

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.

Jump to this post

I was referring to the varying differences in sessions of IMRT, I had noted. 😉

Liked by cmartin65

REPLY

Thanks Remoteman!

REPLY
@remoteman7

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. 🙂

Jump to this post

I didnt realize that the sessions of treatment varied between patients. I thought that the number was standardized. I was offered 5 sessions, maybe because of my favorable
immediate risk. First impressions of my Dr and Mayo were outstanding.

REPLY
@cmartin65

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!

Jump to this post

@cmartin65 No, for me, a 5 treatment regimen was not discussed. Side effects from the proton beam treat were not really noticeable. The side effects I noticed were the expected ones from Lupron. I think I experienced all of those. 😊

Liked by cmartin65

REPLY
@cmartin65

I didnt realize that the sessions of treatment varied between patients. I thought that the number was standardized. I was offered 5 sessions, maybe because of my favorable
immediate risk. First impressions of my Dr and Mayo were outstanding.

Jump to this post

Yes, it does greatly depend on each patient, for sure, rather thsn a standardized plan. In layman's terms, it's sort of explained better in that the same amount of radiation is basically used in a 5-session time, as it would be within a way longer #-session time, such as my 38 sessions—–it is just that, basically, the intensity is increased during a shorter timeframe of sessions. And, for me, I just chose to go with a longer timeframe, instead.

REPLY
@remoteman7

Yes, it does greatly depend on each patient, for sure, rather thsn a standardized plan. In layman's terms, it's sort of explained better in that the same amount of radiation is basically used in a 5-session time, as it would be within a way longer #-session time, such as my 38 sessions—–it is just that, basically, the intensity is increased during a shorter timeframe of sessions. And, for me, I just chose to go with a longer timeframe, instead.

Jump to this post

Yes, I think you are right. My doses were probably stronger than yours and I had some urinary problems. Quite a bit of pain after my fifth dosage that was controlled with Aleve and Flomax. I'm still on the Flomax. I had the fewest doses of anyone I met. Not everyone had the Lupron shots. I think it depends on how advanced the cancer. I was told that the Lupron would increase my chances of SURVIVAL by 20 percent. Still it's at 80 percent. The key is whether or not it travels to other parts of the body. If it does, it becomes much harder to treat. That's why they keep checking your PSA. The cancer is caused by mutations of genes in your DNA. They can test to see where the problem exists, and for some gene mutations there are alternate treatments just like for breast cancer. They looked at my DNA afterwards to see if it could be Inherited. Fortunately, it wasn't. I wasn't aware of this option before treatment.

REPLY
@waynen

Yes, I think you are right. My doses were probably stronger than yours and I had some urinary problems. Quite a bit of pain after my fifth dosage that was controlled with Aleve and Flomax. I'm still on the Flomax. I had the fewest doses of anyone I met. Not everyone had the Lupron shots. I think it depends on how advanced the cancer. I was told that the Lupron would increase my chances of SURVIVAL by 20 percent. Still it's at 80 percent. The key is whether or not it travels to other parts of the body. If it does, it becomes much harder to treat. That's why they keep checking your PSA. The cancer is caused by mutations of genes in your DNA. They can test to see where the problem exists, and for some gene mutations there are alternate treatments just like for breast cancer. They looked at my DNA afterwards to see if it could be Inherited. Fortunately, it wasn't. I wasn't aware of this option before treatment.

Jump to this post

That was one thing about my sessions…I never had any pain. I, too, had a Lupron shot before the sessions. That cuts down on the testosterone production so that the cancer has a lesser chance of growing. It was for 6 months, although it's side effects can last up to a year or so. Time will tell as to whether they will prescribe another shot. I had more hot flashes with it in the beginning, but it has slowed to just a few each day now….that was first given in early October 2019.
The SpaceOar makes a huge difference, too, in the rectum area of potential problems. That was offered to me when we were first looking at Proton treatment—-but, not when it had to change course to Photon instead, due to my insurance not yet covering Proton treatments. However, having learned all that I had about the SpaceOar, I definitely wanted that and requested it. My oncologist was fine with that, and my insurance did cover that part.

REPLY
@remoteman7

That was one thing about my sessions…I never had any pain. I, too, had a Lupron shot before the sessions. That cuts down on the testosterone production so that the cancer has a lesser chance of growing. It was for 6 months, although it's side effects can last up to a year or so. Time will tell as to whether they will prescribe another shot. I had more hot flashes with it in the beginning, but it has slowed to just a few each day now….that was first given in early October 2019.
The SpaceOar makes a huge difference, too, in the rectum area of potential problems. That was offered to me when we were first looking at Proton treatment—-but, not when it had to change course to Photon instead, due to my insurance not yet covering Proton treatments. However, having learned all that I had about the SpaceOar, I definitely wanted that and requested it. My oncologist was fine with that, and my insurance did cover that part.

Jump to this post

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 have have two separate radiation treatments.

March 2016, 39 IMRT – Rapid Arc, 70.2 Gya. SRT to the prostate bed
July 2017 – 25 IMRT, 45 Gya, PLNs

No SE at this point.

Most nights I get up once, sometimes none to urinate.
No incontinence or problems urinating.

My radiologist here in Kansas City just says "Kevin, never had anyone quite like you…" I continued to drink alcohol, coffee…and exercise while going though the two rounds of radiation.

If (ok, when) my PCa returns we will image using C11 Choline, Aximun or the PMSA and then make e decision about treatment depending on what the imaging shows, PSADT and PSAV. There are many more "radiation" options than just a few years ago.

Liked by cmartin65

REPLY

YES, Finished my Proton treatment JAN 21, Mayo
Rochester. SEE MY RECENT POST.
MWSPRO

REPLY
@mwspro

YES, Finished my Proton treatment JAN 21, Mayo
Rochester. SEE MY RECENT POST.
MWSPRO

Jump to this post

Here is the link to the new discussion created by @mwspro – Follow up after proton beam treatment: GREAT PSA NUMBER:
https://connect.mayoclinic.org/discussion/great-psa-number/

REPLY

Wonderful news! I hope to learn the same thing soon post-treatment. May I ask you how many days after your last radiation treatment did you have your blood drawn to determine your PSA level? Also, were you on hormone deprivation therapy (ADT) prior to and/or after your treatment? Thanks for your response.

REPLY
@bruto1

Wonderful news! I hope to learn the same thing soon post-treatment. May I ask you how many days after your last radiation treatment did you have your blood drawn to determine your PSA level? Also, were you on hormone deprivation therapy (ADT) prior to and/or after your treatment? Thanks for your response.

Jump to this post

I am scheduled to have a blood draw 6 months after completion of radiation treatment. Treatment ended April 3rd. Had ADT treatment for 2 months prior, during treatment, (20 sessions), and for 28 days after treatment. Best of luck to you!

REPLY
Please login or register to post a reply.