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    Old 07-14-2020, 04:02 PM   #1
    RogerF
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    Ebrt

    Greetings all.
    Decided to go with External Beam Radiation Therapy with doc’s approval. Starting hormone therapy first and then 20 sessions of EBRT. Read a lot about it (rods installation, urinary and bowel movement, fatigue side effects). Would love to hear from some who have used EBRT and the worst that can be expected. Thanks.
    Roger

     
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    Old 07-15-2020, 11:29 AM   #2
    guitarhillbilly
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    Re: Ebrt

    Quote:
    Originally Posted by RogerF View Post
    Greetings all.
    Decided to go with External Beam Radiation Therapy with doc’s approval. Starting hormone therapy first and then 20 sessions of EBRT. Read a lot about it (rods installation, urinary and bowel movement, fatigue side effects). Would love to hear from some who have used EBRT and the worst that can be expected. Thanks.
    Roger
    Are you doing Cyberkife [SBRT] - IMRT - or Proton RT?

    My experience is 42 sessions of IMRT + ADT [LUPRON]
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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    Old 07-15-2020, 12:41 PM   #3
    RogerF
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    Re: Ebrt

    Hi. Not sure about IMRT. There are different kinds of EBRT? I’ll inquire.
    I know it’s Lupron though.
    Thanks

     
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    Old 07-16-2020, 01:26 AM   #4
    HighlanderCFH
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    Re: Ebrt

    Hi Roger,

    I'm not that well versed in the RT part of PC treatment, so I'll let the other guys give their expert thoughts & opinions.

    Just wanted to wish you the best and for a complete recovery!

    Take care,
    Chuck

     
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    Old 07-16-2020, 12:53 PM   #5
    DaveinMaryland
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    Re: Ebrt

    I went through IGRT (Image guided radiation - external beam) with a 6 month Lupron shot given 1 month prior.

    I had no serious side effects. I would advise you to get an exercise regimen going even if it is just something like walking. I dropped 10 lbs in preparation for gaining that because of the Lupron. I never gained it back. Had very few warm flashes - not hot, but warm. Hardly noticeable.
    Didn't really have any effects from the Lupron except loss of libido. I joked that they could pass a law that all women could not wear clothes and all I would care about was if they were going to get cold.

    During treatment I had a little fatigue, but didn't really have any other side effects. The fatigue was an energy drain fatigue. I would be doing stuff and then run out of energy so I knew I was done for the day.

    Here's how it will go.

    At the beginning it's all new and somewhat fascinating. The midterm is a grind as day after day you fill your bladder and get your treatment. By then you should pretty much have your timing down. It's great if the treatments are at the same time every day, but if they can't be, it can be a bit of a challenge and a bit annoying as you can't get into a daily rhythm.
    When you get to the final treatments there is light at the end of the tunnel and you know you will soon be done.

    I had 39 sessions over 9 weeks for salvage radiation treatment. For primary treatment it is 44 sessions. You are having only 20 so you are undergoing hypofraction treatment - meaning you get the same amount of radiation as a longer course, just more each treatment. So I don't know what that may mean for side effects. They say the side effects are no worse using hypofractionation.

    Best wishes for you.
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
    November 2018 2 digit .10
    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
    Nov 2019, June 2020 PSA undetectable

     
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    Old 07-16-2020, 03:34 PM   #6
    RogerF
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    Re: Ebrt

    Thank you Dave. Very helpful.

     
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    Old 07-17-2020, 01:20 AM   #7
    guitarhillbilly
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    Re: Ebrt

    https://health.clevelandclinic.org/sbrt-why-more-men-should-know-about-this-treatment-for-prostate-cancer/

    Quote:

    "Considering SBRT?

    Because SBRT is a relatively new treatment, seek help from a center with experience in using this technology to treat prostate cancer, advises Dr. Tendulkar.

    “We think SBRT will overtake IMRT in the next few years for a large number of patients,” he says.

    SBRT doesn’t work for everyone, he notes. Men with very large prostate glands can experience more side effects from the very high doses. And when prostate cancer spreads beyond the prostate – into the seminal vesicles or pelvic lymph nodes, for example — IMRT is the better option.

    “But SBRT is a great option for most men with early-stage prostate cancer, and we hope more and more patients will take advantage of it,” Dr. Tendulkar concludes." - End Quote-
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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    Old 07-17-2020, 04:30 AM   #8
    DaveinMaryland
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    Re: Ebrt

    I forgot to mention that your time on the table every day is about 10 minutes. For me it was about an hour out of my day total and that includes time to get to and from the center. I was about 10 minutes from the center.

    The total radiation I received was 70 grays over the 39 sessions.
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
    November 2018 2 digit .10
    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
    Nov 2019, June 2020 PSA undetectable

     
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    Old 07-17-2020, 05:33 AM   #9
    IADT3since2000
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    Re: Ebrt

    Hi Roger, and welcome to the Board!

    There is quite a variety of EBRT treatments, these days very likely to be Image Guided (IG) Intensity Modulated Radiation Therapy (IG/IMRT, or IGRT). You are getting a shorter course, 20 sessions instead of about 39 or 40, with a somewhat higher dose per session but somewhat lower total dose, which seems to be somewhat more biologically effective in treating the cancer and with about the same side effects. I too was on the table for about 10 minutes as I recall, with some time just for positioning and checking for 39 sessions, but you will likely be on the table for somewhat longer due to the higher dose (but no personal experience so not sure).

    An outstanding book for orienting patients is "The Key to Prostate Cancer" by Dr. Mark Scholz, MD, and 29 others, including several chapters on radiation and hormonal therapy, including Lupron, which Dr. Scholz refers to as TIP.

    Good luck.

    That's it for now.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    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 T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs
    .

     
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    Old 07-17-2020, 09:13 AM   #10
    RogerF
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    Re: Ebrt

    Thanks Jim
    Thank you all
    Great forum!!

     
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    Old 07-17-2020, 09:58 AM   #11
    Gary I
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    Re: Ebrt

    Do yourself a favor, and get the Bible on Prostate Cancer, 'Surviving Prostate Cancer, 4th edition', by Dr. Patrick Walsh of Johns Hopkins. It's as close to an easily readable text on all aspects of prostate cancer, as you'll find.


    Dr. Mark C. Scholz, is director of Prostate Oncology Specialists, a very expensive boutique practice in Marina del Rey, CA, that focuses on prostate cancer. He is strongly opinionated, knows the subject well, and also authored 'Invasion of the Prostate Snatchers'. Some believe his publications read more like infomercials.

    Get both, and you decide. Good luck!
    __________________
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    pT2 pNO pMn/a Grade Group 2
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    SRT, 2ADT, IMGT 70.2 Gy, complete 5/18
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    Old 07-19-2020, 05:24 AM   #12
    IADT3since2000
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    Re: Ebrt

    Hi again Roger,

    I believe you are already on a good course, but as you seek more information, it may help if you know more about some of the recommended sources.

    I have met and conversed with both Dr. Walsh and Dr. Scholz and have followed key aspects of their research for years. (This was as a patient and patient advocate; I have had no enrolled medical education.) Here are my observations as a survivor of nearly 21 years.

    Dr. Walsh, whom I believe has now retired from surgery, is a brilliant and highly talented pioneering researcher who made surgery much safer and more effective in the last century. He is expert in comments about surgery, and his updated books have other valuable information as well.

    However, expert radiation doctors are very likely superior sources of information about radiation, which continues to advance from highly impressive safety and effectiveness levels that have been achieved now for some years. Part of this advance involves drugs like Lupron, which is in a class of drugs known as hormonal therapy, androgen deprivation therapy (ADT), or Testosterone Inactivating Pharmaceuticals (TIP), a term mostly used by Dr. Scholz but meaning the same thing. (There’s a back story, but probably just a distraction at this point.)

    Unfortunately, I am convinced that Dr. Walsh has not offered expert advice on ADT, which he (and much, but not all, of Johns Hopkins surgery community where he practiced) tended to use as a second to last resort before chemo after symptoms of metastases developed, the result of which is that he did not gain experience with well-monitored patients who were on ADT early in the course of disease and during attempts to cure with radiation. That contrasts with leading medical oncology practices dedicated to prostate cancer; they gained a lot of experience with ADT.

    Dr. Scholz, a medical oncologist, is highly experienced in using ADT, often in conjunction with radiation, but also alone; he not only gained in-depth experience with ADT because he and his practice partners did unusually detailed lab testing and imaging to track progress over more than two decades, but he and his partners have contributed valuable research published in highly regarded, peer-reviewed medical journals. Dr. Scholz is held in high esteem by distinguished colleagues who specialize in treating prostate cancer. That is obvious to anyone who has attended the annual prostate cancer conventions for patients that he basically produces in September each year. It is also evidenced by the 29 others, mostly distinguished experts, who were co-authors of his most recent book, “The Key to Prostate Cancer.” He is not so popular among some surgeons because he played a leading role in piercing the misconception that men with favorable risk characteristics and especially “low-risk” prostate cancer needed treatment, particularly surgery. As noted earlier, that absence of a need for surgery in those men, but with active surveillance instead, was the main theme of his book “Invasion of the Prostate Snatchers.”

    Hope this helps.


    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    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 T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 07-19-2020, 07:07 AM   #13
    guitarhillbilly
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    Re: Ebrt

    "Dr. Scholz, a medical oncologist, is highly experienced in using ADT, often in conjunction with radiation, but also alone; he not only gained in-depth experience with ADT because he and his practice partners did unusually detailed lab testing and imaging to track progress over more than two decades, but he and his partners have contributed valuable research published in highly regarded, peer-reviewed medical journals. Dr. Scholz is held in high esteem by distinguished colleagues who specialize in treating prostate cancer. That is obvious to anyone who has attended the annual prostate cancer conventions for patients that he basically produces in September each year. It is also evidenced by the 29 others, mostly distinguished experts, who were co-authors of his most recent book, “The Key to Prostate Cancer.” He is not so popular among some surgeons because he played a leading role in piercing the misconception that men with favorable risk characteristics and especially “low-risk” prostate cancer needed treatment, particularly surgery. As noted earlier, that absence of a need for surgery in those men, but with active surveillance instead, was the main theme of his book “Invasion of the Prostate Snatchers.”

    Thanks for posting this.

    Although I was diagnosed with High Risk Disease this just validates that I have an excellent UR who also does robotic RP's and my UR never once pushed me in that direction but did offer me that choice. It was my UR that prescribed the Lupron [nurse gave the shot] once I chose IMRT . I was on Lupron for almost 3 months before I started IMRT. My UR does work very closely with the Radiology Center that I used which also made it much easier.
    After talking to other men and reading stories on these forums I received excellent care and did not realize it at the time.
    I almost made the choice to travel out of state for care to MD Anderson in Houston. Now I'm glad that I did not do that.

    I cannot place enough emphasis on the importance of having a UR that also specializes in PCa.

    My UR also is one of only a few in the area that also specializes in the HoLEP procedure for BPH.
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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    Old 07-19-2020, 01:06 PM   #14
    IADT3since2000
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    Re: Ebrt

    You're welcome. You wrote in part:

    Quote:
    Originally Posted by guitarhillbilly View Post
    ... I have an excellent UR who also does robotic RP's and my UR never once pushed me in that direction but did offer me that choice. It was my UR that prescribed the Lupron [nurse gave the shot] once I chose IMRT ....
    I'm glad you got such excellent support from your urologist.

    There are many excellent urologists out there. Finding them and avoiding the ones that are poor is the trick for us patients who lack medical training.

    Jim

     
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