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Proton Radiation Therapy - any experience?

jeneric82
Posts: 18
Joined: Jan 2018

Have any of you had any Proton Radiation Therapy for PCa and if so, what were your outcomes? Also, if any of you have had consultatations about it, what were your thoughts? 

I have posted before, but as a refresher, I have Gleason 6(3+3) in 3 cores with 2%, 2% and 5% tissue involved. Stage T1c with PSA of a little over 10 (10.6). I was diagnosed January 4th and have had 1 radiological oncology consult so far (plus a worthless "consult" at MD Anderson that is a long, frustrating story).  I don't want to rehash all of the possible treatment options because I am still evaluating. However, I am considering going to the Mayo Clinic here in Phoenix for a consultation for the Proton Radiation. Since we are on a high deductible plan it would be mostly out of pocket so I am on the fence about making the appointment. I have done a lot of research on it, but I would like to see if any of you fine gentlemen have any experience or positions on it. Thanks in advance for all your insight!!  Eric

Old Salt
Posts: 720
Joined: Aug 2014

No experience myself (had SBRT + IMRT), but I have read plenty. Patients seem to like it, but there appears to be no clinical advantage over other, less expensive, radiation therapies. My opinion is just that of course, but it is greatly strengthened by the recommendation from a panel of specialists from the American Urological Association. Here is the one that is relevant:

Clinicians should inform localized prostate cancer patients who are considering proton beam therapy that it offers no clinical advantage over other forms of definitive treatment. (Moderate Recommendation; Evidence Level: Grade C)

Bill91101
Posts: 59
Joined: Apr 2009

Hi Eric,

Ditto to Old Salt's comments.

When I was initially diagnosed with PCa I looked at Proton Beam as well as IMRT. (Surgery was not an option for my advanced condition).

The research I did at the time indicated similar results from the radiation types.

I went with the IMRT because: it was conveniently located between work and home, I could get treated sooner (the Beam Center had a waiting list) and the 'person' I spoke with at the Proton Beam center told me ‘they probably couldn’t help me’ – because of my PSA of 89. I was a little shocked by that response to my phone questions, but I didn’t complain about her – I was pretty stressed about the diagnosis. And someone else called back from Beam Center several weeks later to set up a consultation, but I was already starting IMRT.

Also, IMRT was a lot cheaper than Proton Beam. This was in 2009.

My father had Proton Beam in the early 1990s. I have no information about his staging, PSA, Gleason, etc. He opted for the Beam instead of surgery. I don’t know if he looked at anything else. He was in his early 70s at that time.

He did very well: daily sessions for about a month, I think. No idea if he had issues with ED. He said he had a little trouble with diarrhea, but that was it. And he lived for another 20 years, with no recurrence, and passed from something other than PCa. He was good about PSA and finger checks and recommended getting a doctor with small fingers.

I did well with the IMRT (and Degarelix/Vantas), slightly modified diet for the treatments, some occult blood in urine on rare occasions over the past nine years. Maybe some minor diarrhea. The most challenging thing was keeping a full bladder during the sessions (very important).
But the bandit is still hanging around – so, I’m on Zoladex and Casodex right now.

I hope some of the above info helps!
Take care, good luck and keep us posted.

Bill

jeneric82
Posts: 18
Joined: Jan 2018

Thank you for the input! My first oncologist is recommending VMAT, which is arc IMRT along with cone beam CT IGRT image guidance. All of the information I have seen shows it having lower chances for the side effects. However, most of the Proton information says that there theoretically is much less secondary tissue radiation and lower chances for radiation side effects to the tissue in front of and behind the prostate versus other methods of radiation. Unfortunately, other than general clinical trial information, I have found no others who have actually recently had the procedure to get their input, hence my inquiry here. I'll be sure to keep you posted on here.  Thanks again

Eric

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

see below

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Eric,

You may find details on Proton on their site knowned as the Brotherhood Of The Balloon.

We have discussed here about the pros and cons on the proton vz photon types and ways of delivering the radiation. However, recent data (after many years of treatment) on the benefits vz outcomes in both types, the advantage of hypofractionation seems to be better than proton, even if the risks of collateral damage are higher. The trust is that the "Bragg peak" feature claimed in proton treatment does not stop exactly where it should be. The tolerances on the limits to be irradiated are millimetric in both types. Proton wins in regards to extended areas beyond this established limit as photons continue its path. SBRT is trying to solve this problem in protecting the zones away from the planned field with newer procedures and shieldingproducts such as the SpaceOAR, a natural hydrogel.

https://csn.cancer.org/node/309948

Please read the following links to check details;

https://www.livescience.com/52184-novel-gel-protects-colon-from-radiation-treatment.html

https://www.mdtmag.com/news/2016/04/five-year-study-shows-98-prostate-cancer-cure-rate-stereotactic-body-radiation-therapy

Brotherhood Of The Balloon;

http://www.protonbob.com/

http://www.protonbob.com/about-proton-therapy/proton-therapy-myths

Surely one needs to check firstly if his status is due for radiation therapy. Patients should also be acquainted with the side effects and risks they may be confronting along their lives.

Best wishes,

VGama

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi,

If I ever need radiation treatments I would be looking into Proton due to the fixed focal length.  I feel the fixed focal length means some damage on the way in but none past the intended target, I like that concept.  The less radiation the better is the way that I feel.

Dave

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