Proton Radiation Therapy - any experience?

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)

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

I was diagnosed in 2008. Did watchful waiting until 2014 when I opted for Proton treament at MD Anderson.  It all went well until about 3-4 weeks after finishing treament. The the pain and "other" problems started. I have very strong pain during urination. It was like having a bad UTI 24/7, 365. They did a couple of cystoscopys over the next two years that showed damage to the bladder wall. During a treatment follow up colonoscopy they had to do a little "spot welding" to a place in the rectum. Don't know if they are related but those "other" problems I mentioned, were problems with rectum and sphincter contol. I had several embarrassing experiences where I didn't make it to the toilet in time. For two years I always had to know where the toilets were and could I get there fast enough.  The docs couldn't seem to provide a solution, and seem to infer "Gee, we've not seen this problem before."

I finally went to another urologist and he did another cystoscopy. He used the word "change" instead of damage. He suggested I try Hyperbaric therapy. So in the spring of 2017 I did 8 weeks. and shortly after I had relief. No more embarrassing accidents. No more pain that would wake me up to pee 5 time a night. BUT it only lasted about a year.

The urinary pain has returned in 2018. And its the same again.  I have the pee urge and have to go about every hour. I have to get up 3-5 times every night. The pain is constant, always there, though sometimes on a 1 on a10 scale. But at night sometimes it hits an 8-9 and it takes me 20-30 minutes to pee.  The urologist just did another cystoscopy a few weeks ago and it seems like the "change" is worse than I recall from his first one in 2017.  He has me trying acupuncture treament now. Its used apparently for OAB therapy. He also had me try tamsulosin, but it didn't help.  The pain actually seems to be getting a bit worse over time, not better.

So five years after proton treaments, life is kind of lousy. The constant loss of sleep has had an impact on my memory, as well as being tired a lot.  I'm reaching out here because I don't want to spend the rest of my life with this misery.

ProtonPain said:

Proton Radiation Therapy - any experience?

I was diagnosed in 2008. Did watchful waiting until 2014 when I opted for Proton treament at MD Anderson.  It all went well until about 3-4 weeks after finishing treament. The the pain and "other" problems started. I have very strong pain during urination. It was like having a bad UTI 24/7, 365. They did a couple of cystoscopys over the next two years that showed damage to the bladder wall. During a treatment follow up colonoscopy they had to do a little "spot welding" to a place in the rectum. Don't know if they are related but those "other" problems I mentioned, were problems with rectum and sphincter contol. I had several embarrassing experiences where I didn't make it to the toilet in time. For two years I always had to know where the toilets were and could I get there fast enough.  The docs couldn't seem to provide a solution, and seem to infer "Gee, we've not seen this problem before."

I finally went to another urologist and he did another cystoscopy. He used the word "change" instead of damage. He suggested I try Hyperbaric therapy. So in the spring of 2017 I did 8 weeks. and shortly after I had relief. No more embarrassing accidents. No more pain that would wake me up to pee 5 time a night. BUT it only lasted about a year.

The urinary pain has returned in 2018. And its the same again.  I have the pee urge and have to go about every hour. I have to get up 3-5 times every night. The pain is constant, always there, though sometimes on a 1 on a10 scale. But at night sometimes it hits an 8-9 and it takes me 20-30 minutes to pee.  The urologist just did another cystoscopy a few weeks ago and it seems like the "change" is worse than I recall from his first one in 2017.  He has me trying acupuncture treament now. Its used apparently for OAB therapy. He also had me try tamsulosin, but it didn't help.  The pain actually seems to be getting a bit worse over time, not better.

So five years after proton treaments, life is kind of lousy. The constant loss of sleep has had an impact on my memory, as well as being tired a lot.  I'm reaching out here because I don't want to spend the rest of my life with this misery.

I don't have any useful information for you, but I just want to tell you how sorry I am that you are going through this.  Hopefully the acupuncture will help.

Eric

Steve1961 said:

10 years

So this is confusing ..so since u have a PSA rise this means after surgery there must have been a few cells that escaped , correct ..these few cells just all of a sudden decided to start to multiply after TEN years ..wow seems so strange ..am I correct I'm saying that a few cellls must have escaped ..could if just start to grow out on no where since you have no prostate 

"So this is confusing ..so since u have a PSA rise this means after surgery there must have been a few cells that escaped , correct ..these few cells just all of a sudden decided to start to multiply after TEN years ...."

Is it possible that after surgery a few cells escaped and they produce PSA but that the level of PSA they produce is below the detectable limit for 10 years until the number of cells multiplies beyond a certain amount?

I am 54 and finished my proton therapy 3 weeks ago. My PSA at the start of all this was 17 at the highest. Post proton PSA .3. My case was stage 2 unfavorable so I am on Trelstar for 18 months and that is no fun. However, the proton is a breeze. If you get urine burnig or pressure, they prescribe flowmax. Then you are back to normal. The hardest part for me was drinking and holding the water to keep your bladder full as that is not normal or comfortable. To protect your rectum I would request SpaceOar Gel insertion. At UF Proton in Jacksonville, FL that is mandatory. 

SV said:

According to my doctors they

According to my doctors they cancer never went away, it was just held in check by my immune system. As we age our immune system weakens hence certain cancers can return. The cancer was capsule contained with no margins comprimised. But now it is in my seminal vescicles.

Your case of having a rise in the PSA level after a prostatectomy 10 years ago with the cancer being capsule contained and no margins compromised sounds unusual. Have you already started a forum topic describing your situation in detail?