Proton Beam....what's up??

Ralphie62
Ralphie62 Member Posts: 61
edited March 2014 in Prostate Cancer #1
Ok, so we are really running down the treatment lists, have sent out for books/lit/etc.....we are really impressed with HIFU and proton beam..i've read all the HIFU posts, and it seems availabilty, cost, and long term studies are the real problems....but, what about the proton beam??? I have been looking at the studies and the pros and cons..........and i don't see that many cons....Lomalinda has been doing it since 1990, they have 10 year studies with good numbers. It seems like the numbers are better or at least equal to surgery and seeds, with no ED, incontinence, or longterm problems. The long time for treatments is our big block. Also, we're waiting to hear on the insurance. I have great respect for all of you..and most of you are not choosing this... we would really like your input, and reasons you chose other paths..are we missing something??..we have not been researching as long as many of you.....Ralphie and wife

Comments

  • lewvino
    lewvino Member Posts: 1,010
    Ralphie, Well as you know
    Ralphie, Well as you know with this cancer you do the research and pick what you hope is best for your situation. My dad had Proton at Loma Linda back around 1996. His cancer was caught very early and he is still doing great now in 2010! Side effects? yes there are a few. I think for most men on the proton route they happen later. They will not treat if over Gleason 7. At least that is what they told me on the phone this summer. My dad has lost his ability to have erections (About 2-3 years after treatment). He still has to urinate frequently and has to go NOW can not wait. This has been ongoing since treatments but then every one is different as you know.

    Numerous of the men that were treated when he was have all ready died. My dad is 78 now.So you can due the math back to 1996. Another friend from the church I attend also went to Loma Linda 2 years ago. He has since developed bladder cancer which he told me he found out later is common after Proton and they are starting to do some studies on this but he still is happy with his treatment.

    For me when I found out about my Prostate cancer last summer at age 54 I immediatelty researched Proton at Loma Linda since that is where my dad went. Facts--the proton beam will kill off the prostate and eventually you end up with No ejaculate over time. Over time the impotance can strike also. After some frank talks with my dad and Loma Linda and finding out that my insurance would not pay for Proton even on appeal I then settled on Davinci. I also am a religious person and believe God was leading me towards DaVinci and the surgeon I picked. I can send you off line a list of all the reasons if interested.

    Also in my mind at 54 I thought I would have a better chance of overcoming the erection issues now rather then later. Monday I will be at 6 months and have my check up then.
    So far I've been very blessed. Have used only 1 pad (Total) the first day the cath came out. Have been 99.99% dry and can not remember the last 'leak' that I had. On the sexual side I have success with Levitra but have to work at it. Hoping it will improve more with time.
    A plus with me was since I was Gleason 7 borderline aggresive I wanted 'facts'. Facts after surgery showed my gleason was downgraded from 4+3(7) to 3+4 (7). Some cancer was found in the nerve bundle. Doc spared 100% on one side and about 60% on the other side. Also found that I did have a positive margin post surgery. So now my backup plan is if the PSA ever hits >.1 I will start radiation. After Proton I'm not sure what the backup plan would be accept perhaps hormones? There can be surgery after Proton but I understand it is a difficult surgery due to the radiation scaring.

    Best wishes to you on this journey.

    Larry at [email protected] (if you want more offline input)
    age 55
    T2B - Positive margin
    Gleason 3+4 (7)
    7 week psa was 0
    6 month PSA will be taken on Monday 2-15-2010
  • Ralphie62
    Ralphie62 Member Posts: 61
    lewvino said:

    Ralphie, Well as you know
    Ralphie, Well as you know with this cancer you do the research and pick what you hope is best for your situation. My dad had Proton at Loma Linda back around 1996. His cancer was caught very early and he is still doing great now in 2010! Side effects? yes there are a few. I think for most men on the proton route they happen later. They will not treat if over Gleason 7. At least that is what they told me on the phone this summer. My dad has lost his ability to have erections (About 2-3 years after treatment). He still has to urinate frequently and has to go NOW can not wait. This has been ongoing since treatments but then every one is different as you know.

    Numerous of the men that were treated when he was have all ready died. My dad is 78 now.So you can due the math back to 1996. Another friend from the church I attend also went to Loma Linda 2 years ago. He has since developed bladder cancer which he told me he found out later is common after Proton and they are starting to do some studies on this but he still is happy with his treatment.

    For me when I found out about my Prostate cancer last summer at age 54 I immediatelty researched Proton at Loma Linda since that is where my dad went. Facts--the proton beam will kill off the prostate and eventually you end up with No ejaculate over time. Over time the impotance can strike also. After some frank talks with my dad and Loma Linda and finding out that my insurance would not pay for Proton even on appeal I then settled on Davinci. I also am a religious person and believe God was leading me towards DaVinci and the surgeon I picked. I can send you off line a list of all the reasons if interested.

    Also in my mind at 54 I thought I would have a better chance of overcoming the erection issues now rather then later. Monday I will be at 6 months and have my check up then.
    So far I've been very blessed. Have used only 1 pad (Total) the first day the cath came out. Have been 99.99% dry and can not remember the last 'leak' that I had. On the sexual side I have success with Levitra but have to work at it. Hoping it will improve more with time.
    A plus with me was since I was Gleason 7 borderline aggresive I wanted 'facts'. Facts after surgery showed my gleason was downgraded from 4+3(7) to 3+4 (7). Some cancer was found in the nerve bundle. Doc spared 100% on one side and about 60% on the other side. Also found that I did have a positive margin post surgery. So now my backup plan is if the PSA ever hits >.1 I will start radiation. After Proton I'm not sure what the backup plan would be accept perhaps hormones? There can be surgery after Proton but I understand it is a difficult surgery due to the radiation scaring.

    Best wishes to you on this journey.

    Larry at [email protected] (if you want more offline input)
    age 55
    T2B - Positive margin
    Gleason 3+4 (7)
    7 week psa was 0
    6 month PSA will be taken on Monday 2-15-2010

    proton
    Thanks Larry. I haven't read anything about the bladder cancer issue; i guess it's not in the literature from the treatment center:( Also, i thought later impotency was only in external beam and seeds, because of the nature of the beam.........i really appreciate your candor and knowledge. I need to really push on my research. Congratulations on your success!! I am also looking into DaVinci....have a great evening...ralphie
  • Trew
    Trew Member Posts: 931 Member
    Loma Linda
    You can go on the Loma Linda web page and get a host of testimonials of happy proton patients. During treatment they go out to eat, play golf, use the fitness center, swim, do all kinds of stuff and then 5 and 10 years later they are posting good testimonials. Good staff- very kind and friendly. I just wish I had caught my PC earlier and gone the whole proton route.
  • Trew
    Trew Member Posts: 931 Member
    lewvino said:

    Ralphie, Well as you know
    Ralphie, Well as you know with this cancer you do the research and pick what you hope is best for your situation. My dad had Proton at Loma Linda back around 1996. His cancer was caught very early and he is still doing great now in 2010! Side effects? yes there are a few. I think for most men on the proton route they happen later. They will not treat if over Gleason 7. At least that is what they told me on the phone this summer. My dad has lost his ability to have erections (About 2-3 years after treatment). He still has to urinate frequently and has to go NOW can not wait. This has been ongoing since treatments but then every one is different as you know.

    Numerous of the men that were treated when he was have all ready died. My dad is 78 now.So you can due the math back to 1996. Another friend from the church I attend also went to Loma Linda 2 years ago. He has since developed bladder cancer which he told me he found out later is common after Proton and they are starting to do some studies on this but he still is happy with his treatment.

    For me when I found out about my Prostate cancer last summer at age 54 I immediatelty researched Proton at Loma Linda since that is where my dad went. Facts--the proton beam will kill off the prostate and eventually you end up with No ejaculate over time. Over time the impotance can strike also. After some frank talks with my dad and Loma Linda and finding out that my insurance would not pay for Proton even on appeal I then settled on Davinci. I also am a religious person and believe God was leading me towards DaVinci and the surgeon I picked. I can send you off line a list of all the reasons if interested.

    Also in my mind at 54 I thought I would have a better chance of overcoming the erection issues now rather then later. Monday I will be at 6 months and have my check up then.
    So far I've been very blessed. Have used only 1 pad (Total) the first day the cath came out. Have been 99.99% dry and can not remember the last 'leak' that I had. On the sexual side I have success with Levitra but have to work at it. Hoping it will improve more with time.
    A plus with me was since I was Gleason 7 borderline aggresive I wanted 'facts'. Facts after surgery showed my gleason was downgraded from 4+3(7) to 3+4 (7). Some cancer was found in the nerve bundle. Doc spared 100% on one side and about 60% on the other side. Also found that I did have a positive margin post surgery. So now my backup plan is if the PSA ever hits >.1 I will start radiation. After Proton I'm not sure what the backup plan would be accept perhaps hormones? There can be surgery after Proton but I understand it is a difficult surgery due to the radiation scaring.

    Best wishes to you on this journey.

    Larry at [email protected] (if you want more offline input)
    age 55
    T2B - Positive margin
    Gleason 3+4 (7)
    7 week psa was 0
    6 month PSA will be taken on Monday 2-15-2010

    Larry
    I just want you to know, I hate PC. I wish it was better for all of us. In the end, we pretty much just make a choice and no one is home free no matter which route you go.
  • lewvino
    lewvino Member Posts: 1,010
    Trew said:

    Loma Linda
    You can go on the Loma Linda web page and get a host of testimonials of happy proton patients. During treatment they go out to eat, play golf, use the fitness center, swim, do all kinds of stuff and then 5 and 10 years later they are posting good testimonials. Good staff- very kind and friendly. I just wish I had caught my PC earlier and gone the whole proton route.

    I agree with you Trew that
    I agree with you Trew that there are great testimonials on Proton...I was shocked when I found out about my Cancer since I had been getting PSA tests frequently since my dad had the cancer. Then wow there it is at a 7. While my dad was at Loma Linda (back in the early days) they were treating Gleason's 8 & 9. I believe they were 'reseaching' and that is when they came up with the rule to have a cut off at gleason 7. In some of the more advanced cases they use Proton and traditional radiation.

    If my insurance would have paid I might have ended up chosing Proton since it was my first thought.

    Swimming, eating, playing golf, fitness center are great PR but on the other hand after My Davinci and getting the Cath out I then started getting my strength back. At 6 weeks post surgery I was walking 2 or more miles per day and went to Bermuda on a cruise. Rented Mopeds a rode them all over the island.

    I think the BIG BIG BIG Difference when any one chooses DaVinci is the Surgeons Skill level.
    If anyone is thinking Davinci make sure you can get the most skilled surgeon you can find.
    My Doc at Vanderbilt has performed over 2000. I could have got in sooner with a local Doc that trained with my Doc but he only had perfomed about 200 so I waited 9 weeks and went with the skill.

    Larry
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    lewvino said:

    I agree with you Trew that
    I agree with you Trew that there are great testimonials on Proton...I was shocked when I found out about my Cancer since I had been getting PSA tests frequently since my dad had the cancer. Then wow there it is at a 7. While my dad was at Loma Linda (back in the early days) they were treating Gleason's 8 & 9. I believe they were 'reseaching' and that is when they came up with the rule to have a cut off at gleason 7. In some of the more advanced cases they use Proton and traditional radiation.

    If my insurance would have paid I might have ended up chosing Proton since it was my first thought.

    Swimming, eating, playing golf, fitness center are great PR but on the other hand after My Davinci and getting the Cath out I then started getting my strength back. At 6 weeks post surgery I was walking 2 or more miles per day and went to Bermuda on a cruise. Rented Mopeds a rode them all over the island.

    I think the BIG BIG BIG Difference when any one chooses DaVinci is the Surgeons Skill level.
    If anyone is thinking Davinci make sure you can get the most skilled surgeon you can find.
    My Doc at Vanderbilt has performed over 2000. I could have got in sooner with a local Doc that trained with my Doc but he only had perfomed about 200 so I waited 9 weeks and went with the skill.

    Larry

    Good Decision to Wait Larry
    Smith is one of the best around from my research and considered driving south for him but I instead stayed local with a team that had done over 1200 da vinci's. I am still not all the way continent but getting closer as time passes..only 1/2 pad per day and virtually dry at night...I only leak a bit when getting out of bed every 3-4 hours to use the bathroom. I am getting to the point of thinking I need to start pushing myself to go without pads to see if I can do it. ED function is coming along but now waiting for my drugs from India to arrive.

    I will be visualizing a ZERO on your blood test Monday!

    Randy in Indy - the Hoosier boy - you are spot on as I graduated from IU in Bloomington.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    lewvino said:

    I agree with you Trew that
    I agree with you Trew that there are great testimonials on Proton...I was shocked when I found out about my Cancer since I had been getting PSA tests frequently since my dad had the cancer. Then wow there it is at a 7. While my dad was at Loma Linda (back in the early days) they were treating Gleason's 8 & 9. I believe they were 'reseaching' and that is when they came up with the rule to have a cut off at gleason 7. In some of the more advanced cases they use Proton and traditional radiation.

    If my insurance would have paid I might have ended up chosing Proton since it was my first thought.

    Swimming, eating, playing golf, fitness center are great PR but on the other hand after My Davinci and getting the Cath out I then started getting my strength back. At 6 weeks post surgery I was walking 2 or more miles per day and went to Bermuda on a cruise. Rented Mopeds a rode them all over the island.

    I think the BIG BIG BIG Difference when any one chooses DaVinci is the Surgeons Skill level.
    If anyone is thinking Davinci make sure you can get the most skilled surgeon you can find.
    My Doc at Vanderbilt has performed over 2000. I could have got in sooner with a local Doc that trained with my Doc but he only had perfomed about 200 so I waited 9 weeks and went with the skill.

    Larry

    Larry good decision to wait and do with Smith
    My research put J. smith as one of the premier surgeons on Da Vinci and I was seriously considering going south to have it done but instead used a team here that had over 1,200 and had very successful results. I am getting more and more continent as time passes...useing only 1/2 pad per day and virtually no leaking at night except when rolling out of my high bed at night every 3-4 hours to empty the full bladder. I am thinking I soon will be testing without pads during the day around home to see if I can master no leaking. The ED is coming along as well but currently waiting for my meds from India.

    I will be visualizing a BIG FAT ZERO on your blood test Monday!

    Randy in indy - Hoosier boy - you're spot on as I graduated from IU in Bloomington!
  • bdhilton
    bdhilton Member Posts: 803 Member
    Ralphie62 said:

    proton
    Thanks Larry. I haven't read anything about the bladder cancer issue; i guess it's not in the literature from the treatment center:( Also, i thought later impotency was only in external beam and seeds, because of the nature of the beam.........i really appreciate your candor and knowledge. I need to really push on my research. Congratulations on your success!! I am also looking into DaVinci....have a great evening...ralphie

    Once having chosen, go forward with confidence
    It is a beautiful day here in Atlanta…we had 4 inches or so of snow that stuck and just got back from a 5+ mile walk with the wife….Anyway I thought of you for a few minutes on my walk today…

    First, best wishes to you on this journey…your clinical stats seem to be the least aggressive clinically that I have seen since joining this site. Be careful separating facts from marketing hype or wishful thinking with your final selection. In the end the skill set of your doctor, surgeon, cancer center, et al…. As someone else said to me earlier this month here “Once having chosen, go forward with confidence, knowing that it is being done by one of the widely acknowledged "best", and realizing that NO ONE can ever know what the result of any alternative decision would have been…”

    Easy for me to say pre surgery but I pray that I deal with whatever the post surgery results are good, bad or complicated but more importantly (for me anyway) keep living…. As Dylan Thomassaid so many years ago… DO NOT GO GENTLE INTO THAT GOOD NIGHT

    DO NOT GO GENTLE INTO THAT GOOD NIGHT

    Do not go gentle into that good night,
    Old age should burn and rave at close of day;
    Rage, rage against the dying of the light.

    Though wise men at their end know dark is right,
    Because their words had forked no lightning they
    Do not go gentle into that good night.

    Good men, the last wave by, crying how bright
    Their frail deeds might have danced in a green bay,
    Rage, rage against the dying of the light.

    Wild men who caught and sang the sun in flight,
    And learn, too late, they grieved it on its way,
    Do not go gentle into that good night.

    Grave men, near death, who see with blinding sight
    Blind eyes could blaze like meteors and be gay,
    Rage, rage against the dying of the light.

    And you, my father, there on the sad height,
    Curse, bless me now with your fierce tears, I pray.
    Do not go gentle into that good night.
    Rage, rage against the dying of the light.

    The best to you all
  • lewvino
    lewvino Member Posts: 1,010
    Ralphie62 said:

    proton
    Thanks Larry. I haven't read anything about the bladder cancer issue; i guess it's not in the literature from the treatment center:( Also, i thought later impotency was only in external beam and seeds, because of the nature of the beam.........i really appreciate your candor and knowledge. I need to really push on my research. Congratulations on your success!! I am also looking into DaVinci....have a great evening...ralphie

    Ralphi - I saw my friend
    Ralphi - I saw my friend this morning that had gone out to Loma Linda about 2-3 years back for the Proton treatments and now has the bladder cancer. He stated that his last bladder cancer check was clean but ....his PSA is now on a slow rise...He told me that he is know up to .4 from a .2 on the last check. There are no promises with any treatment option that we choose.

    Larry
  • Ralphie62
    Ralphie62 Member Posts: 61
    my cure

    I just am amiss at never really followning up on this board, yet it gave us all the answers to make our good decisions>>WE chose Proton at Shands hospital in Jacksonville>> It was an amazing experience> My husband was there 5 days/week for 8 weeks and he has been clear ever since. He had no neg SE/no incontinence and no impotence>> he was only a little tired the last 1-2 weeks>> his PSA dropped slowly and he is considered cured now>His treatment was in JUne 2010. SInce then, we have sent a cousin and 3 friends for treatment with good results and no complaints. They were so good to us there, and the comraderie at the center was amazing. I just  want you to know, this board, and some posts from Trew and Bulldog were what led us there. You meet a lot of other patients there, and over and over there were surgery patients back for more treatment in 1-2 years, with tons of negative side effects. Men with tears in their eyes, almost broken by the problems they suffered following the other treatments. They all told us how lucky we were to have come their first. I spoke to many of their wives as well. AS a healthcare provider, I just want to urge anyone who is a candidate to consider proton. Our urologist made fun of it, and pushed us toward surgeryu. No one had really heard of it. But it is a wonderful option to consider. In some cases all of that pain and compromise is not necessary. We are a old happy couple to this day, without negative side effects. we ARE SO THANKFUL FOR THIS BOARD AND ALL OF THE INFORMATION WE RECIEVED FROM ALL OF YOU> GOD BLESS YOU ALL AND PLAN TO BE HEALED, NOT TREATED:)