Proton Radiation Therapy - any experience?

jeneric82
jeneric82 Member Posts: 18
in Prostate Cancer #1

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

Comments

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #2
    Eric,

    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
    Bill91101 Member Posts: 81 Member
    #3
    Hi Eric,
    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
    jeneric82 Member Posts: 18
    edited March 2018 #4
    Bill91101 said:

    Hi Eric,
    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

    IMRT

    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
    VascodaGama Member Posts: 3,701 Member
    #5
    Brotherhood Of The Balloon

    see below

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #6
    Brotherhood Of The Balloon

    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
    Clevelandguy Member Posts: 1,180 Member
    #7
    Proton?

    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

  • ProtonPain
    ProtonPain Member Posts: 5
    edited March 2020 #8
    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.

  • SV
    SV Member Posts: 183 Member
    #9
    After a recent PSA rise post

    After a recent PSA rise post DaVinci surgery ten years ago, I am scheduled for Proton this June at MD Anderson Cancer Center. Drs there said either Photon or Proton was fine with them. Three month wait for Proton though. In the meantime I'm on 90-day Lupron shots for a total of one year.

  • eonore
    eonore Member Posts: 185 Member
    #10
    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.

    Proton

    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
    Steve1961 Member Posts: 618 Member
    edited March 2020 #11
    SV said:

    After a recent PSA rise post

    After a recent PSA rise post DaVinci surgery ten years ago, I am scheduled for Proton this June at MD Anderson Cancer Center. Drs there said either Photon or Proton was fine with them. Three month wait for Proton though. In the meantime I'm on 90-day Lupron shots for a total of one year.

    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 

  • Flyer83948
    Flyer83948 Member Posts: 34
    edited March 2020 #12
    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 

    PSA

    "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?

  • Grinder
    Grinder Member Posts: 487 Member
    #13
    I have questions...

    Very sorry to hear of the PSA rise after 10 years. I was yold 5 years is usually the limit testing PSA after RP.

    Did tissue with cancerous cells get left behind, was there localized escape before the surgery, or is this metastasized cancer and the bandit got out before the surgery? Or any combination? Did they tell you where the "bandit" is located?

    If you don't feel comfortable answering these questions, that's cool.

  • Gforce
    Gforce Member Posts: 21 Member
    #14
    I am 54 and finished my

    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
    SV Member Posts: 183 Member
    #15
    Flyer83948 said:

    PSA

    "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?

    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.

  • Flyer83948
    Flyer83948 Member Posts: 34
    edited April 2020 #16
    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.

    Unusual

    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? 

  • Ralphie62
    Ralphie62 Member Posts: 61 Member
    edited May 2020 #17
    PROTON!!!

    So, I opted for proton therapy at UF Shands hospital in Jacksonville, FL. It was my first line of treatment in the spring/summer of 2010. I had absolutley no negative side effects. My wife anad i had/have a very active sex life> I had absolutely no negative side effects, except for being more tired at the end of the treatment. No pain. No incontinence. I did the 6 week treatment regime. we feel like it was the very best treatment availabel. There were many men there that had surgery, robotic and other treatment and they all had incontinenece and impotence issues. I am so blessed to be part of "the BOB" men.

    The brotherhood of the balloon is a website that has men who have had proton and their experiences>>I also read the book "you can beat prostate cancer" which was very helpful to me. Good luck!

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