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    Old 03-16-2021, 05:47 PM   #1
    JWPMP
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    RO Appointment

    We met Jim's "local" RO.
    Boy are we fortunate. He works very closely with UCSF. He talked to Dr Mohamad and Dr Roach.
    So they are going to leave Jim on HT ( Lupron / Abiraterone) for 5 to 7 months before RT. Then he will have Brachytherapy() at UCSF and External Beam Radiation locally, only 25 treatments.
    They say Jim's case is very complex because of his titanium plate and screws in his pelvis and metal hip replacement. He also said Jim's Gleason 9 was heavier on the 5's than the 4's and he's very doubtful for curative treatment. He said the HT can work anywhere from a few months to many years no way to tell. He said as healthy as Jim is, that Jim will likely eventually die from cancer as opposed to people that eventually die from heart disease or other conditions before the cancer kills them. He said Jim will be on HT the rest of his life. He said UCSF is the best place we could be and we are very fortunate to have access to that great team of doctors. And the treatment is evolving so quickly that over time there should be new combinations to try when Jim's current combination stops working.
    So after he told Jim he had the most aggressive cancer, an extremely complex case, no way to know how long he HT will work, and he'll probably die of it eventually...he said to live your life and don't focus on the cancer. The HT works great at first.
    Don't get me wrong, this doctor was terrific and we have great confidence.
    We're just less optimistic about long term survival than before.
    We have an mpMRI scheduled at UCSF April 6th, so hoping for good results. Insurance has not approved PSMA scan yet, so may just have a PET scan locally.
    Anyway, any input or experience with the two radiation types along with any high risk long term survival experience would be welcome.
    Thank you for listening
    Paula

    No symptoms of any kind.
    Routine visit for gout meds refill with new PCP.
    7/14/2020 First ever PSA 53.5
    9/2020 PSA 66.3
    12/2020 (no treatment started) PSA 51.3
    9/2020 MRI UCSF
    T4 Tumor. 8x8cm. Entire prostate.
    Two suspicious nodes.
    Seminal Vesicle Invasion
    Beginning Anterior Rectal wall invasion
    10/2020. Biopsy UCSF G9
    Dr Carroll says not a candidate for surgery.
    11/2020. Bone Scan UCSF
    No evidence or suspicion of Bone metastases
    12/2020 CT Scan Modesto Radiology
    "CT Scan Looks Good"
    12/09/2020 Casodex
    1/11/2021 4 Month Lupron Injection
    3/09/2021 Abiraterone

     
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    Old 03-17-2021, 06:40 AM   #2
    guitarhillbilly
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    Re: RO Appointment

    I have no experience with this kind of diagnosis and don't even know what to say.
    Wish the both of you the very best possible outcome of the treatments selected by you and your MD's.
    __________________
    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 03-17-2021, 12:55 PM   #3
    IADT3since2000
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    Re: RO Appointment

    Hi Paula,

    It's so good to hear that your team will work well together!

    I can understand the doctor's pessimism about your husband's outliving his Gleason 9 disease, but my hunch is that he will after the combo of ADT plus seeds and radiation have done their work, with future advances likely available to do any mopping up that is needed.

    Part of my optimism may be bias from my own experience. Until at least the five year point I believed I probably would not last much beyond that point. By the ten year point I was pretty sure those early prognoses of five years were wrong. Future developments play such a large role in prostate cancer, and you and your husband are ideally positioned to take advantage of them.

    Good luck, and ask your husband not to max out his credit cards any time soon!

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. 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 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 03-17-2021, 01:27 PM   #4
    JWPMP
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    Re: RO Appointment

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi Paula,

    It's so good to hear that your team will work well together!

    I can understand the doctor's pessimism about your husband's outliving his Gleason 9 disease, but my hunch is that he will after the combo of ADT plus seeds and radiation have done their work, with future advances likely available to do any mopping up that is needed.

    Part of my optimism may be bias from my own experience. Until at least the five year point I believed I probably would not last much beyond that point. By the ten year point I was pretty sure those early prognoses of five years were wrong. Future developments play such a large role in prostate cancer, and you and your husband are ideally positioned to take advantage of them.

    Good luck, and ask your husband not to max out his credit cards any time soon!

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. 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 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.
    Thank you for that perspective Jim.
    Why would they give you a 5 year prognosis with only a Gleason 7 and no distant metastases?
    I was confident in at least 10 to 15 years once we found out Jim's was local. But now I'm praying for 5.
    Very discouraged.
    He had his first PSA since December this morning. I'm afraid to look tomorrow...
    Anyway, appreciate your response Jim. Feeling lost.
    Paula

     
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    Old 03-17-2021, 01:29 PM   #5
    JWPMP
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    Join Date: Jul 2020
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    Re: RO Appointment

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi Paula,

    It's so good to hear that your team will work well together!

    I can understand the doctor's pessimism about your husband's outliving his Gleason 9 disease, but my hunch is that he will after the combo of ADT plus seeds and radiation have done their work, with future advances likely available to do any mopping up that is needed.

    Part of my optimism may be bias from my own experience. Until at least the five year point I believed I probably would not last much beyond that point. By the ten year point I was pretty sure those early prognoses of five years were wrong. Future developments play such a large role in prostate cancer, and you and your husband are ideally positioned to take advantage of them.

    Good luck, and ask your husband not to max out his credit cards any time soon!

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. 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 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.
    One more thing Jim, and I know I'll need to ask the RO's....but
    If Jim's Radiation is complex and they cannot be as thorough as necessary, is the RT in vain?
    Thanks

     
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    Old 03-17-2021, 02:45 PM   #6
    Prostatefree
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    Re: RO Appointment

    Quote:
    Originally Posted by JWPMP View Post
    One more thing Jim, and I know I'll need to ask the RO's....but
    If Jim's Radiation is complex and they cannot be as thorough as necessary, is the RT in vain?
    Thanks
    It will debulk the cancer. It's a technique sometimes used with surgery. Think management. Better you hear this from the doctor, but cancer cells may already be in other parts of the body. Scans can only detect these distant locations once they reach a certain size.

    The ADT will impact these distant mets as long as the ADT remains effective. Radiating the cancer at the source, as carefully as they can, may help reduce/slow the metastisis. It is using every available resource to manage the disease.

    You ask a good question; are the side effects of the radiation worth the time it may gain? The prostate site has a lot of plumbing running through and around it. Successfully knocking it back hard at the source may maintain quality of life for urinary and bowel function.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    1-15-21 PSA less than 0.02; zero club 4.5 yrs

     
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    Old 03-17-2021, 06:03 PM   #7
    JWPMP
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    Re: RO Appointment

    Quote:
    Originally Posted by Prostatefree View Post
    It will debulk the cancer. It's a technique sometimes used with surgery. Think management. Better you hear this from the doctor, but cancer cells may already be in other parts of the body. Scans can only detect these distant locations once they reach a certain size.

    The ADT will impact these distant mets as long as the ADT remains effective. Radiating the cancer at the source, as carefully as they can, may help reduce/slow the metastisis. It is using every available resource to manage the disease.

    You ask a good question; are the side effects of the radiation worth the time it may gain? The prostate site has a lot of plumbing running through and around it. Successfully knocking it back hard at the source may maintain quality of life for urinary and bowel function.
    Thank you PF for the perspective on the Radiation. That makes so much sense, appreciate it.
    Also, the doctor did tell us the very thing you brought up about the distant mets. I believe that is part of the reason they would really like to get that PSMA scan approved.
    So, for now all we can do is hope the ADT remains effective for several years...
    Appreciate the insight and honesty.
    So thankful to have a place to vent with such excellent experience and feedback. My heart is heavy but we're no different than anyone else facing this diagnosis.

    Paula

     
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    Old 03-18-2021, 07:28 AM   #8
    Steve135
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    Re: RO Appointment

    JWPMP, From strickly a patients view, starting with my URO they live around this 5 year survial number as if its a badge. If they keep you alive 5 years they have done there job. I heard this all through out my 6 years being treated! Quite frankly it scared the hell out of us every visit. I met a great bunch of guys along my way getting treatments, one shared a story that said not one big name cancer center would see him because of the this magic 5 year number? Some doctors in the field are more concern of low PSA with high gleason score than high PSA with high gleason scores? Again I'll state every single one of us is going to come thought this differntly reguardless of numbers.
    My URO held onto me too long before handing me off to a MO, this is something they tend to do. Only after my second BCR did he send me to a MO and I thought at least he agree's what he's doing didn't work! Noo! That wasn't it at all he did not have the credentials to prescribe the next medications!
    My URO said nearing the 4th year said I'm doing so well not to worry about anything you got 10 years of no concerns. Then 3 months later the Pca had spread the second time now to the iliac bone?
    Remembering that I had a 2.4 psa when a biopsy showed gleason 8 later to be found to be 4+3 7's
    Whats really kept me going is IADT3since2000 (Jim) having such geat results for over 20 years so why not me too! Hold on to any good news.
    steve

     
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    Old 03-18-2021, 08:28 AM   #9
    JWPMP
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    Re: RO Appointment

    Quote:
    Originally Posted by Steve135 View Post
    JWPMP, From strickly a patients view, starting with my URO they live around this 5 year survial number as if its a badge. If they keep you alive 5 years they have done there job. I heard this all through out my 6 years being treated! Quite frankly it scared the hell out of us every visit. I met a great bunch of guys along my way getting treatments, one shared a story that said not one big name cancer center would see him because of the this magic 5 year number? Some doctors in the field are more concern of low PSA with high gleason score than high PSA with high gleason scores? Again I'll state every single one of us is going to come thought this differntly reguardless of numbers.
    My URO held onto me too long before handing me off to a MO, this is something they tend to do. Only after my second BCR did he send me to a MO and I thought at least he agree's what he's doing didn't work! Noo! That wasn't it at all he did not have the credentials to prescribe the next medications!
    My URO said nearing the 4th year said I'm doing so well not to worry about anything you got 10 years of no concerns. Then 3 months later the Pca had spread the second time now to the iliac bone?
    Remembering that I had a 2.4 psa when a biopsy showed gleason 8 later to be found to be 4+3 7's
    Whats really kept me going is IADT3since2000 (Jim) having such geat results for over 20 years so why not me too! Hold on to any good news.
    steve
    Thank you Steve, very much!

     
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    Old 05-01-2021, 02:37 PM   #10
    JD2823
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    Re: RO Appointment

    Hi, I have been searching on here today trying to find someone with similar diagnosis to my husband: Gleason 5+4=9, 11.8 psa, seminal vesicle invasion, nerve bundle... removed prostate and the above this week, took out lymph nodes around prostate and six were positive. That is where we are at. I have no idea what is next. We were just called with news that lymph nodes were positive and now to wait another 4-6 weeks for follow up from surgery. I would love to know what treatments have been most successful.

     
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    Old 05-01-2021, 03:00 PM   #11
    JD2823
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    Re: RO Appointment

    These acronyms are killing this newby. Is there a cheat sheet somewhere?

     
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