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Thread: I don't see a sticky for Proton Beam Therapy...

  1. #11
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Quote Originally Posted by Nonquixote View Post
    Fair enough. But I see that you have a sticky for HIFU which, compared to PBT is barely out of diapers with FDA approval coming only 3 years ago.

    I'm not trying to be contentious, just trying to understand the reasoning.

    Technically, PBT has been around since the 50's. The PBT center at Loma Linda has been treating cancer patients since 1990. The Mayo Clinic has had a PBT center for several years as well (for which they charge IMRT rates). By 2006 there were 6 PBT centers in the US. Now there are 28.

    Can you recommend any reading that expands on the lack of evidence regarding PBT? So far everything that I've read has been overwhelmingly positive, and the science seems to make sense. I'd be interested in hearing from the detractors and reading their take on PBT.

    I did read the posted debate that you recommended and found it interesting, although honestly I always sour when a healthcare provider mentions "cost-effectiveness".

    I do agree that there is a wealth of effective treatments available for prostate cancer, especially early stage. However, that means wading through each one, trying to find the treatment option that is the best for me.

    It's probably been there for years. Actually, you present a good case for eliminating HIFU from the stickies. I'll have to give that some thought.
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  2. #12
    Senior User
    Join Date
    Jan 2019
    Quote Originally Posted by Nonquixote View Post
    and I was wondering why. Is it not a therapy that anyone on the boards opted for?

    Hi! Recently got my Dx of PCa with a Gleason score of 3+3, 6 of 12 needles showing abnormal cells (restricted to one hemisphere) PSA of 2.7, and all at age 56.

    I've been researching treatment options and boy, are there a lot of them. The only real decision that I've made so far is that surgery is not an option for me. Other than that it would appear that RT and HIFU offer comparable results and the only real criteria for selection are quality of life issues. Having said that, Stereotactic ablative body radiotherapy also looks promising, although there is so far not a wide collection of data to consider. Also weighing in, albeit at a lesser degree of importance, is whether or not the treatment is covered by Tricare Select (Humana Military).

    I'm currently leaning toward Proton Beam Therapy, which is covered by Tricare. I'm impressed by the history of this therapy and the anecdotal evidence which has been overwhelmingly positive. The QoL appears to be very good post treatment, and the side effects during treatment are minimal. Happily there is a treatment facility (UF PBTI) a couple of hours from me so I can at least come home for the weekends.

    Thank you for providing a place for all of us to come and compare treatments and to tell our stories, it is much appreciated! I'm sure that I will be asking a lot of hopefully not so dopey questions!
    There are only about 40 proton locations in the US. Travel and insurance may be prohibitive for some.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk. 38% risk 5 year metastasis.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT started 6/3/2019

  3. #13
    Quote Originally Posted by Duck2 View Post
    There are only about 40 proton locations in the US. Travel and insurance may be prohibitive for some.

    Not to mention the fee for the treatment itself. Proton therapy is considerably more expensive that photon radiation and may not be covered by every patient's health plan
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3

  4. #14
    Quote Originally Posted by Southsider View Post
    Not to mention the fee for the treatment itself. Proton therapy is considerably more expensive that photon radiation and may not be covered by every patient's health plan
    Right you are, PBT is much more expensive than other types of EBRT. Happily my insurance covers the treatment and there is a PBT treatment center about an hour from me, which is why I am considering it along with other therapies.

  5. #15
    Quote Originally Posted by Duck2 View Post
    There are only about 40 proton locations in the US. Travel and insurance may be prohibitive for some.
    More like 30 at present according to the National Association for Proton Therapy website. There is one about an hour away from me in Orlando.


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