Going with Proton Treatment after 3 months of research, consults and tests

SantaZia
SantaZia Member Posts: 67

After a very short AS (3 months) I started hormone treatment last week at MD Anderson Proton Center in Houston (3 month shot of Lupron and 50 mg Bicalutamide). During that time I was able to read most research and could write a short book on PC. I will have to do 48 Proton treatments with a low dose proton to protect the bladder. They will also be using the SpaceOar (Epoxy) to reduce damage to rectum.  I am increasing my exercise and sex to counter side effects. Following up with a PSA on June 18 to determine when Proton Treatment will begin (end of July or Aug.).  Dr. Choi with MD Anderson Proton Center also required a Colonoscopy, although it wasn’t due for a couple of years. They seem to have a very coordinated team approach. We were impressed. The Navigators handle everything for scheduling and will follow-up with anything you need.  I was not a candidate for shorter course of treatments (Hypofractionated).  I really would have liked that very effective results, but more damage to bladder due to high doses. Due to my TURP in 2002 which caused scaring to the bladder neck and neurogentic bladder RT was recommended by my UNM Cancer surgeon Dr. Shah.   I am 68 a runner in good health 3+4=7 <15% 2 cores one core 3+3= 6 and another suspect. MD Anderson review of biopsy images upped it to 4+3=7 Of course subjective but Dr. Choi recommended using the higher.  Prolaris results 3.7 were consistent (their rating) for intermediate PC (0n the high side). PTEN genpath test normal.  PSA 12.7 May 21, 2018 Jan. 18 PSA 13.7.  I have been taking Finaseride for past 15 years it may have suppressed my PSA which MD Anderson considers and UNM Cancer doubles. Crazy how much controversy is around every prostate cancer test and therapy.   Also received a clear Bone Scan and MRI results - (MRI prostate gland is relatively small, measures 3.1 cm cephalocaudal by 2.2 cm AP by 3.9 cm transversely for an estimated volume 14 mL. With diffusion-weighted imaging and ADC map a focal lesion within the mid gland extending to adjacent base and apex measures 1.8 cm largest transaxial plane. Lesion involves the peripheral zone of the mid gland anteriorly extending to adjacent apex and base and into the adjacent transition zone.)

Comments

  • Grinder
    Grinder Member Posts: 487 Member
    Thanks SZ

    Thanks man for all the details. If you chronicle your experience that will be a great help to anyone who may visit this site in the future. I have learned so much from this site, only because guys like you are willing to share.

    As you go through the chronicling of your treatments, there will be key words like "Proton" and "Finaseride" that newbies can search to learn from your experience, I did a lot of that when I first came here. It may have helped if I had come here long before my prostate issues got out of hand, but I can't complain about the eventual results.

     God bless you as you go forward. 

  • SantaZia
    SantaZia Member Posts: 67
    Grinder said:

    Thanks SZ

    Thanks man for all the details. If you chronicle your experience that will be a great help to anyone who may visit this site in the future. I have learned so much from this site, only because guys like you are willing to share.

    As you go through the chronicling of your treatments, there will be key words like "Proton" and "Finaseride" that newbies can search to learn from your experience, I did a lot of that when I first came here. It may have helped if I had come here long before my prostate issues got out of hand, but I can't complain about the eventual results.

     God bless you as you go forward. 

    Learning Experience

    Grinder you are correct. I too have learned so much from this site and others. This is really important and I will continue to share my experiences and research. I write a monthly article for my local paper on Understanding Disability. As soon as I learned I had PC and the stupid recommendation not to do PSA testing (which prevented me from being tested for 6 years) and many others I wrote an article http://www.santafenewmexican.com/news/health_and_science/for-prostate-cancer-older-men-should-consider-test/article_2ab52365-b10d-5252-bb6a-4aa4eb0003b4.html

  • 1005tanner
    1005tanner Member Posts: 29
    Wishing you the best on your

    Wishing you the best on your journey and best of luck in the future. Sounds like you and your Doctors

    are on point with your treatment, As you have come off Active Survellance within 3 months as your Gleason score

    was high. Please let us know of your outcme. Godspeed my brother.

  • Grinder
    Grinder Member Posts: 487 Member
    map of available proton therapy centers

    proton map

  • VascodaGama
    VascodaGama Member Posts: 3,525 Member
    Good news

    I hope all goes smoothly in the treatment. Remmenber to drink water before any section. I will be waiting for the word ZERRRRRRROssssssssss in the future.

    Best wishes,

    VG

  • Dino_F
    Dino_F Member Posts: 15 Member
    SantaZia said:

    Learning Experience

    Grinder you are correct. I too have learned so much from this site and others. This is really important and I will continue to share my experiences and research. I write a monthly article for my local paper on Understanding Disability. As soon as I learned I had PC and the stupid recommendation not to do PSA testing (which prevented me from being tested for 6 years) and many others I wrote an article http://www.santafenewmexican.com/news/health_and_science/for-prostate-cancer-older-men-should-consider-test/article_2ab52365-b10d-5252-bb6a-4aa4eb0003b4.html

    you're in good hands

    Andy,

    It sounds like the proton therapy staff really have their act together at MD Anderson.  I remember my own 44 treatments at Penn 6 years ago and there were times when I though they would never end.  As I have mentioned before I was (and still am) a complicated case and either I was incorrectly evaluated as a suitable candidate for protons or the treatments themselves were screwed up.  I'll never know.  My own experience has not soured my belief that proton therapy can be extremely effective under the right conditions, which seems to be what you will be getting at MD Anderson.  I will be following your reports and hope for the best possible outcome.

     

    Dino

  • SantaZia
    SantaZia Member Posts: 67
    Dino_F said:

    you're in good hands

    Andy,

    It sounds like the proton therapy staff really have their act together at MD Anderson.  I remember my own 44 treatments at Penn 6 years ago and there were times when I though they would never end.  As I have mentioned before I was (and still am) a complicated case and either I was incorrectly evaluated as a suitable candidate for protons or the treatments themselves were screwed up.  I'll never know.  My own experience has not soured my belief that proton therapy can be extremely effective under the right conditions, which seems to be what you will be getting at MD Anderson.  I will be following your reports and hope for the best possible outcome.

     

    Dino

    Proton Treatment

    So Sorry to hear that Dino. I hope you things go well for you. I appreciate your comments. 

     

  • SantaZia
    SantaZia Member Posts: 67

    Wishing you the best on your

    Wishing you the best on your journey and best of luck in the future. Sounds like you and your Doctors

    are on point with your treatment, As you have come off Active Survellance within 3 months as your Gleason score

    was high. Please let us know of your outcme. Godspeed my brother.

    Proton Treatment

    Thanks 1005 I will keep everyone updated. 

  • SantaZia
    SantaZia Member Posts: 67

    Good news

    I hope all goes smoothly in the treatment. Remmenber to drink water before any section. I will be waiting for the word ZERRRRRRROssssssssss in the future.

    Best wishes,

    VG

    Proton Treatment

    Thanks Vascoda good advice I never drink enough water. I am into zeros and working body parts too. 

  • SantaZia
    SantaZia Member Posts: 67
    Grinder said:

    map of available proton therapy centers

    proton map

    Proton

    Grinder you and others on this site are great. I think the best we can do is help others. I am glad to see so many folks doing just that. Best wishes.