Need some help with making a decision on treatment IMRT (Calypso) or PBT

krukpe
krukpe Member Posts: 1
in Prostate Cancer #1

I was diagnosed with prostate cancer in May 2014.  Gleason of 6, PSA 4 with one biopsy core at ~5% out of 12 positive.  I know that this is a very early stage and I often feel like I am the exception in being diagnosed this early.  I am 50 so I don't think watchful waiting is really the right course of action to take since my PSA has risen from 1.2 in 2009 to now 4.  So my guess is that within 1-2 years it will be closer to 10 and be considered in stage 2.  I have ruled out surgery.  I don't think that it is neccesary in my case.  I don't want to become incontinet and impotent at this point in life.  The only other option is radiation.  I have visited two treatment centers. One using IMRT with the Calypso markers and Proton beam.  I am going to visit a Cancer Treatment Center of America that is near my home which is the Chicago area.  My worry with radiation is the long term risk of secondary cancers. I am leaning toward PBT but want to make sure that I haven't misssed anything with photon therapy.  Can anyone give me some advice on either treatment.  Does anyone have any experience with Cancer Treatment Centers?  When I setup a consult they immediately want to run a Bone Scan, CT and MRI.  I didn't have that happen with the other two centers. I understand that a CT will be done once the fiduciary markers are placed in the prostate.  Any advice would be appreciated.

Comments

  • Timlong
    Timlong Member Posts: 42
    #2
    CTC is run like a car dealer.

    CTC is run like a car dealer. They load on the options. Learned this from an Oncoligist who quit there and went to Fox Chase.

  • Yank31
    Yank31 Member Posts: 46 Member
    #3
    Timlong said:

    CTC is run like a car dealer.

    CTC is run like a car dealer. They load on the options. Learned this from an Oncoligist who quit there and went to Fox Chase.

    Scans Provide Baseline

    When I was diagnosed with PCa in November 2013, they started with the tests the same day. First, it was x-ray then CRT. The bone scan was done later the next week.

    The doctor did not really expect to find cancer in the scans but wanted a good set of early scans to establish a baseline for reference farther down the road. My cancer was thought to be contained in the capsule but was scored as a Gleason 8 (high risk). Perhaps the higher GL score prompted the scans upon diagnosis? I am not sure.

    Your numbers are lower, so you should ask the doctor if the tests are absolutely necessary at this stage. I was under the impression that they are always done upon a positive diagnosis, regardless of the stats.

    Good luck.

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #4
    1. PBT is radiation as well

    1. PBT is radiation as well (with protons); long-term side effects are not known at this time

    2. PBT is sort of the latest, but quality clinical studies to show that this method is better (or equivalent) to IMRT or brachytherapy (other potential options) are lacking, AFAIK

    3. PBT is much more expensive than IMRT or brachytherapy; you may want to find out how much will be reimbursed by your insurance company

    4. Have you considered Cyberknife (officially, Stereotactic Body Radiation Therapy; SBRT). Although I am by no means a medical professional, your status seems to indicate that that method might be an option as well.

     

    Good luck on your journey; there's no need to make hasty decisions in your situation.

  • Ralphie62
    Ralphie62 Member Posts: 61 Member
    #5
    Better late than never

    My husband did amazingly well with proton therapy. No incontinence/no impotence/no neg side effects 5 yrs out>>here is the link>> http://www.floridaproton.org/ppc/proton-top?ppc_campaign=Georgia Proton Therapy&ppc_adgroup=Top Performers

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #6
    Late responding

    I know that your question is several months old now, Krukpe, but I just read it (it went back to the top of the threads, due to a new response).  I guess I was just welcomed to your world, since my Biopsy results, which I got last month, were literally identical to yours (3+3=6, PSA 4.6, 5% on one of twelve cores). I am slightly older, at 58 years of age.

    If you check back in here I am curious as to what you chose for treatment, and how it went.

    I have met with the urologist who did my biopsy and a radiation oncologist thus far. Both have stated that a bone scan would be a waste of money in my case, but are willing to order it.  I have not yet met with a urologic surgeon (the urologist who did my biopsy does not herself perform RP), but see one next week to get his sales pitch for RP.   I am heavily leaning toward IGRT ("Image Guided" radiation that incorportates IMRT in its system), but am still open to surgery (no pun intended). 

    I have been using as a reference Dr. Peter Scardino's Prostate Book (Updated Edition, Avery Press, 2010). Dr Scardino is Chairman of the Departmment of Surgery at Sloan-Kettering.  He states on page 336 that many of the claims made by Proton Beam Radiation are unsubstantiated, and mentions that it has limited availability and is very expensive, adding that "Experts question whether proton beam therapy offers any advantage over modern high-dose IMRT for treating prostate cancer."

    Who knows. Everyone has a cash cow on the one hand, but does not want their ox goared, on the other.

    He concludes with: ".....I would not travel to get proton beam therapy if IMRT is available."  Both quotes are also from p. 336  I hope that whatever you decided on went well, and proves 100% successful.

    max

    .

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #7
    Old Post

    Obviously, a very old post that didn't get much of a response when originally posted in July and no further posts by the OP, Krukpe, since then.  

    I'm sure the lack of response was not intentional; just got lost in the mix, I guess.  I certainly would have made my standard pitch for CK, if I'd seen it but am not sure if such a response is warranted at this point.

    If you're still around Krukpe, let us know what you finally decided to do.  If you still haven't made a treatment choice, let us know that too and, if you haven't figured it out for yourself already, there still more than enough info from a variety of viewpoints that we'd be happy to overwhelm you with.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #8
    Swingshiftworker said:

    Old Post

    Obviously, a very old post that didn't get much of a response when originally posted in July and no further posts by the OP, Krukpe, since then.  

    I'm sure the lack of response was not intentional; just got lost in the mix, I guess.  I certainly would have made my standard pitch for CK, if I'd seen it but am not sure if such a response is warranted at this point.

    If you're still around Krukpe, let us know what you finally decided to do.  If you still haven't made a treatment choice, let us know that too and, if you haven't figured it out for yourself already, there still more than enough info from a variety of viewpoints that we'd be happy to overwhelm you with.

     

    So well put, SSW.

    "...we'd be happy to overwhelm you..."

    In a good way, of course.  I can relate.  I meet a very experienced RP surgeon Tuesday (Nov 11) who operates only laproscopically, unless there is a compelling reason for open technique (he has done both, but states that he has done "hundreds" laproscopically).  

    I will decide Tuesday night.   This does not constitute "rushing," since I have read so much and already spoken to so many of you great guys  over the last two months or thereabout.    Way tougher deciding this than choosing Door #1, Door #2, or Door #3, on The Price is Right.

    max

  • CowboyBob
    CowboyBob Member Posts: 31
    #9
    Max Former Hodgkins Stage 3 said:

    So well put, SSW.

    "...we'd be happy to overwhelm you..."

    In a good way, of course.  I can relate.  I meet a very experienced RP surgeon Tuesday (Nov 11) who operates only laproscopically, unless there is a compelling reason for open technique (he has done both, but states that he has done "hundreds" laproscopically).  

    I will decide Tuesday night.   This does not constitute "rushing," since I have read so much and already spoken to so many of you great guys  over the last two months or thereabout.    Way tougher deciding this than choosing Door #1, Door #2, or Door #3, on The Price is Right.

    max

    Opting for surgery?

    Max,

     

    Good luck with your decision.  From what you have written, it seems you have low risk disease. I am surprised you are even considering RP. The quality of life changes associated with ED and incontinence which are not infrquent make me question this approach for myself (I am your age with a rising PSA likely heade for a 3T multiparametric MRI with biopsy if indicated). Mydad elected to have RP and is plagued with incontinence and zero sexual function. I would love to hear your thought process.

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #10
    CowboyBob said:

    Opting for surgery?

    Max,

     

    Good luck with your decision.  From what you have written, it seems you have low risk disease. I am surprised you are even considering RP. The quality of life changes associated with ED and incontinence which are not infrquent make me question this approach for myself (I am your age with a rising PSA likely heade for a 3T multiparametric MRI with biopsy if indicated). Mydad elected to have RP and is plagued with incontinence and zero sexual function. I would love to hear your thought process.

     

    Cowboy Bob

    The  MRI is excellent for identifying suspicious areas. It takes a Guided Biopsy with pathology and second opinion to know what is PCa and what is not a problem.

    I suggest that you find a place that does both; a MRI T-3 and three dimensional biopsy capability, or using the same MRI machine in real time to biopsy the suspicious areas.

    Best,

    Hopeful

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