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    Old 12-30-2020, 06:08 PM   #1
    dan3853
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    proton therapy vs cleveland clinic

    Thank you for past responses to newbie.... Here's a new one relating to radiation therapy.
    Cleveland clinic is listed as #4 for great prostate cancer care. University Hospital of Cleveland is listed at #24. But, University Hospital has proton radiation therapy that looks VERY good for effectiveness and lower side effects. Do you go for the best dr's or the latest, greatest technology?

     
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    Old 12-30-2020, 08:18 PM   #2
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    Re: proton therapy vs cleveland clinic

    #24 in the country is an excellent rating you know.

    If you have reviewed proton therapy and have come to the conclusion that its the best way to go with your cancer- and there will be no problem paying for it (it is a lot more expensive and some insurance concerns might balk) - you have to go for it.

    But be aware that not everyone is convinced that protons are any better than other radiation for prostate cancer. It isn't undisputed.

    But its "your prostate and your decision" as Hall of Fame catcher Joe Torre says on the radio commercial.

     
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    Old 12-31-2020, 05:49 AM   #3
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    Re: proton therapy vs cleveland clinic

    Best doctor and best technology. I didn't say new.

    Assuming you already have the best doctor what do they recommend?

    New and best are not the same. Ask all the prostate surgery patients that were first in line for the Da Vinci machine. They paid the price for the experience we all now benefit from. But, a bad doctor will always be a bad doctor.

    Experience and success is what you may be looking for. This is usually not broadly available with new technology. I prefer the best of the tried and true. An important consideration about existing technology, if it is proven then it is constantly improving.

     
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    Old 12-31-2020, 11:05 AM   #4
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    Re: proton therapy vs cleveland clinic

    Quote:
    Originally Posted by Prostatefree View Post
    ....I prefer the best of the tried and true. An important consideration about existing technology, if it is proven then it is constantly improving.
    Exactly!!

    Quantifying who is the best physician, and what is the most effective technology is, for the most part, a leap of faith. Doctors don't publish their 'real' numbers, and labs have to market their latest expensive equipment with glowing, but usually unsubstantiated, claims.

    Research as much as you can. Take our biased reports with a grain of salt, then go with your gut.

    Cleveland Clinic in Ohio is 'tried and true' and top notch. Good luck!
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    Old 12-31-2020, 08:52 PM   #5
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    Re: proton therapy vs cleveland clinic

    University Hospitals spent $30 million for Proton.

    Cleveland's other large health system, the Cleveland Clinic, has no plans to obtain proton therapy technology, said Dr. John Suh, chairman of the Department of Radiation Oncology at the Clinic's Taussig Cancer Center.

    "The reason we have not actively pursued proton beam therapy is that the number of indications and the evidence for the use of proton beam therapy is still lacking," he said.

    Although Suh believes the technology could benefit some specific populations of patients, especially younger patients, he said there are not enough clinical studies at this time proving the superiority of proton therapy for the Clinic to invest in it.

     
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    Old 01-01-2021, 02:36 AM   #6
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    Re: proton therapy vs cleveland clinic

    I met a man last year whose prostate cancer was treated with protons at Loma Linda in 1993. Yes, he was an early patient at the first US proton center. No recurrence and no side effects.

    I participate in many forums, and have never seen any man who had protons say that he regretted it.

     
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    Old 01-01-2021, 09:35 AM   #7
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    Re: proton therapy vs cleveland clinic

    ASA, In your experience have you ever heard about someone regretting SBRT as a monotherapy treatment choice? Just curious.
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    Old 01-01-2021, 09:54 AM   #8
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    Re: proton therapy vs cleveland clinic

    Quote:
    Originally Posted by Terry G View Post
    ASA, In your experience have you ever heard about someone regretting SBRT as a monotherapy treatment choice? Just curious.
    Terry
    In a word, no.

    Every six months or so, I post a comment on various forums that I have never heard/read a first-hand account of any man who had PBT for prostate cancer who regretted doing it. I have never received a contrary response.

    That is remarkable.

    Is PBT better than other radiation, especially SBRT? Possibly not, but nobody seems to think it was their mistake.

    I think that PBT is mostly used as a monotherapy for prostate cancer. The usage with ADT, or for salvage treatment, seems to be recent.
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    Old 01-02-2021, 11:38 AM   #9
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    Re: proton therapy vs cleveland clinic

    Quote:
    Originally Posted by ASAdvocate View Post
    ....I participate in many forums, and have never seen any man who had protons say that he regretted it.
    There are, as I'm sure you realize, many reasons other than the efficacy of the treatment, that would keep men from admitting they regret it.
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    Old 01-02-2021, 11:59 AM   #10
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    Re: proton therapy vs cleveland clinic

    Quote:
    Originally Posted by Gary I View Post
    There are, as I'm sure you realize, many reasons other than the efficacy of the treatment, that would keep men from admitting they regret it.
    Without question. Nobody wants to admit a mistake. But, I do see negative comments about some other treatments, just never protons.

     
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    Old 01-02-2021, 12:09 PM   #11
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    Re: proton therapy vs cleveland clinic

    There are only 38 proton centers in the US, 63 worldwide. Thatís why you arenít reading many negative reports - not many patients.

     
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    Old 01-02-2021, 12:24 PM   #12
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    Re: proton therapy vs cleveland clinic

    I considered Proton Therapy but would have had to move out of town for about 10 weeks to complete my 42 treatments. I am not retired and the family isolation and the marathon treatment plan help make my decision to stay at my home and do IMRT + ADT in my area.My UR and RT MD follow Memorial Sloan Kettering and Johns Hopkins Protocols. I'm satisfied that I'm receiving good care in my area.
    Some Insurance Companies still balk at the cost of Proton RT.
    The reality is that most of us would like to have treatment at one of the top Centers in the Country BUT Economics and Logistics do have an effect on our decisions.
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    Old 01-09-2021, 08:16 PM   #13
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    Re: proton therapy vs cleveland clinic

    Good to hear that one proton therapy patient had no problems afterward. I didn't realize that proton therapy is almost 30 years old.

    On the other hand, if iconic medical facilities, such as Cleveland Clinic, have reasons to NOT begin employing this therapy, that would be good enough for me to seek more familiar & conventional means of treatment.

    Anyway, that is my humble opinion.

    Last edited by HighlanderCFH; 01-09-2021 at 08:18 PM.

     
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    Old 01-10-2021, 06:34 AM   #14
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    Re: proton therapy vs cleveland clinic

    Proton therapy has notched some excellent results for avoiding recurrence of prostate cancer as well as limiting side effects. You can look at the same research that doctors look at by going to our taxpayer supported site (open to the world) www.pubmed.gov, sponsored by the NIH, and searching for - prostate cancer AND proton beam radiation . I just did that and got a list of 389 papers mentioning protons, the vast majority of them since 2009. You can filter the list, using the buttons on the left. Using the clinical trials filter reduces the list to 24 papers. If you click on the hypertext of any paper, you get to see an abstract, if there is one, which is typical.

    That said, modern IMRT is also looking excellent.

    I do know of one proton beam veteran who had a high-risk recurrence, I believe Gleason 8 or 9, in 2019 after proton therapy in the early 2000s.

    Ö.Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
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    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 01-10-2021, 10:02 AM   #15
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    Re: proton therapy vs cleveland clinic

    A recent review concluded there is "equipoise" between the efficacy of PBT and conventional RT. Here is a recent study:

    Comparative Analysis of 5-Year Clinical Outcomes and Patterns of Failure of Proton Beam Therapy Versus Intensity Modulated Radiation therapy for Prostate Cancer in the Postoperative Setting (2020)

    https://pubmed.ncbi.nlm.nih.gov/33242634/

    "Abstract

    Purpose:
    Although proton beam therapy (PBT) is a rapidly expanding modality to treat prostate cancer compared with intensity modulated radiation therapy (IMRT), data comparing disease control outcomes and patterns of failure in the postprostatectomy setting remain substantially limited.

    Methods and materials: All patients who underwent postoperative IMRT or PBT to the prostate bed only at a single institution were included (2009-2017). Endpoints included biochemical failure (BF; using institutional and recent cooperative group trial definitions), local failure (LF), regional failure (RF), distant failure (DF), and all-cause mortality. A case-matched cohort analysis was performed using 3-to-1 nearest-neighbor matching; multivariable Cox proportional hazards modeling (MVA) estimated hazard ratios for disease-related outcomes by treatment modality.

    Results: Of 295 men, 260 were matched (n = 65 PBT, 195 IMRT); after matching, only age at diagnosis (P < .01) significantly differed between cohorts. At a median follow-up of 59 months, BF (institution-defined), LF, RF, DF, and mortality rates were 45% (n = 29), 2% (n = 1), 9% (n = 6), 9% (n = 6), and 2% (n = 1) for PBT, and 41% (n = 80), 3% (n = 5), 7% (n = 13), 9% (n = 18), and 5% (n = 9) for IMRT (all P > .05). RT modality was not significantly associated with BF on MVA using institutional or cooperative group definitions (all P > .05), nor with LF (P = .82), RF (P = .11), DF (P = .36), or all-cause mortality (P = .69). Patterns of failure were qualitatively similar between cohorts (DF: bone, retroperitoneal nodes, lung).

    Conclusions: In this single institution, case-matched analysis, PBT yielded similar long-term disease-related outcomes and patterns of failure to IMRT in the postprostatectomy setting."

    [Emphasis mine]

    I will repeat what I often point out: we have to be very careful in using BCR-free stats as a stand-in for overall or prostate-cancer-free survival. It is not the gold standard and should be de-emphasized as OS and PCFS data comes in.

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