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  • Not Getting Prognosis

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    Old 10-16-2020, 04:54 PM   #16
    Insanus
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    Re: Not Getting Prognosis

    You are expecting a prognosis before the testing is completed? That is an impossible request.

    After you get the PET scan a Decipher test may give some further clues as to the aggressiveness of the cancer.

    Prostate cancer is a strange animal. Men who expected to live a few years are alive 20 years later and Men who thought they had a descent prognosis are dead in 10 years.

     
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    Old 10-17-2020, 06:30 AM   #17
    JWPMP
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by Insanus View Post
    You are expecting a prognosis before the testing is completed? That is an impossible request.

    After you get the PET scan a Decipher test may give so,e further clues as to the aggressiveness of the cancer.

    Prostate cancer is a strange animal. Mem who expected to live a few years are alive 20 years later and Men who thought they had a descent prognosis are dead in 10 years.
    Thank you for that.
    You are absolutely correct...
    The no surgery and Gleason 9 made us immediately panic and want to know if he could survive for a while longer. I totally know he's not curable, just was hoping that it could be managed for a few years at least.
    BUT wanting that answer before the PET scan was unreasonable.
    Paula

     
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    Old 10-17-2020, 09:31 AM   #18
    IADT3since2000
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by JWPMP View Post
    Thank you for that.
    ... I totally know he's not curable, just was hoping that it could be managed for a few years at least.
    Paula
    Hi Paula and Jim,

    Actually, while it's completely understandable that you feel the disease is "not curable" now, that is not certain at this time! It is certain that it is not curable with surgery, but the combination of radiation, ADT and supportive care is at least as good as surgery at wiping out cancer in the prostate, with a few exceptional circumstances, and the beauty of radiation is that it wipes out cancer in many areas which surgery cannot reach. That includes the sites you are concerned about. Sometimes it is not possible for radiation and ADT, etc., to cure the cancer, but it is usually possible in those cases to set the cancer way back, for many making prostate cancer an incurable but survivable, chronic disease that still allows some quality of life and joy.

    You both are where I was in the first years after diagnosis: my wife and I were pretty sure I would die in the next few years. A few years passed, and I gained some confidence that prostate cancer for me could be a chronic disease that I could outlive. Finally, around year 8, I began to think I might have a shot at a cure. I took that shot at year 13, and now, at nearly year 21, I seem to have been cured, though I will never know for certain. It is possible that technology now available may be able to achieve a cure. It is possible that that will not be sufficient, and that you will need to benefit from technology that is not yet available for a second shot at a cure. Just know that the book is not closed at this point.

    You have probably forgotten the information about prognosis from earlier on this thread. In brief, based on solid, reliable research, almost all of us will make it at least to the 15 year point after diagnosis. The 10 year prognosis is nearly 100%, even for men with regional metastases, such as spread to the rectum. You can view the five year statistics for yourself at an American Cancer Society website: https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/survival-rates.html . Most of the exceptions are men with widespread distant metastases at the time of diagnosis, and the PET scan will probably rule that situation in or out for you. Another exception that has come to light in recent years is men with certain mutations, particularly the BRCA2 mutation, where their treatment was not well matched for such cases. Prediction of survival has become much more accurate in recent years as research, including genetic research, has accumulated.

    I'm really curious how that meeting with the RO went.

    ….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 PSA as of 9/4/2020). (Current T 128 9/4/20.) 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.

    Last edited by IADT3since2000; 10-17-2020 at 09:33 AM. Reason: Added one sentence right after posting.

     
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    Old 10-17-2020, 01:49 PM   #19
    JWPMP
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi Paula and Jim,

    Actually, while it's completely understandable that you feel the disease is "not curable" now, that is not certain at this time! It is certain that it is not curable with surgery, but the combination of radiation, ADT and supportive care is at least as good as surgery at wiping out cancer in the prostate, with a few exceptional circumstances, and the beauty of radiation is that it wipes out cancer in many areas which surgery cannot reach. That includes the sites you are concerned about. Sometimes it is not possible for radiation and ADT, etc., to cure the cancer, but it is usually possible in those cases to set the cancer way back, for many making prostate cancer an incurable but survivable, chronic disease that still allows some quality of life and joy.

    You both are where I was in the first years after diagnosis: my wife and I were pretty sure I would die in the next few years. A few years passed, and I gained some confidence that prostate cancer for me could be a chronic disease that I could outlive. Finally, around year 8, I began to think I might have a shot at a cure. I took that shot at year 13, and now, at nearly year 21, I seem to have been cured, though I will never know for certain. It is possible that technology now available may be able to achieve a cure. It is possible that that will not be sufficient, and that you will need to benefit from technology that is not yet available for a second shot at a cure. Just know that the book is not closed at this point.

    You have probably forgotten the information about prognosis from earlier on this thread. In brief, based on solid, reliable research, almost all of us will make it at least to the 15 year point after diagnosis. The 10 year prognosis is nearly 100%, even for men with regional metastases, such as spread to the rectum. You can view the five year statistics for yourself at an American Cancer Society website: https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/survival-rates.html . Most of the exceptions are men with widespread distant metastases at the time of diagnosis, and the PET scan will probably rule that situation in or out for you. Another exception that has come to light in recent years is men with certain mutations, particularly the BRCA2 mutation, where their treatment was not well matched for such cases. Prediction of survival has become much more accurate in recent years as research, including genetic research, has accumulated.

    I'm really curious how that meeting with the RO went.

    .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 PSA as of 9/4/2020). (Current T 128 9/4/20.) 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.
    Thank you Jim. Yes my retention is not good this week and thanks for the reminder and especially for your personal experience.
    The RO had to reschedule our appointment to next Wednesday.
    Jim had radiation 28 years ago for testicular cancer and the RO wanted the records. They are in storage and won't get to him until Monday.
    Its interesting, I called that Radiation Center back in August in anticipation of Jim's new Doctors needing that.
    The Radiation Center told me they only keep records 10 years and couldn't help us. Dr Carroll said since it was so long ago it probably wouldn't be an issue and anyway they could find out what the protocol was at that time.
    Fast forward to Friday.
    Dr Mohammad's office was able to get those people to retrieve the records I thought didn't exist.
    A bit frustrating that it caused another delay, but am happy they can get the records. Hoping his past Radiation doesn't impact the treatment available going forward.
    The RO who actually called us himself, also asked about the PET scan. He was not happy it wasn't scheduled and said he'd take care of it himself. So feeling much better about treatment getting closer.
    Thank you
    Paula

     
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    Old 10-18-2020, 05:26 AM   #20
    IADT3since2000
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    Re: Not Getting Prognosis

    Hi Paula and Jim,

    I'm glad to hear that the RO is taking charge here.

    In the online conference in September, Dr. Roach talked about prior prostate radiation and how it affects planning for prostate cancer radiation, which would also apply to prior testicular cancer radiation. What they do is sculpt the radiation field so that the same tissue is not radiated again, which can cause a "fistula", which is basically a hole where you don't want one, in this context - not a good thing to have. Dr. Roach also said that he was taught years ago that about 10% of the radiation impact disappears each year, so little remains after the passage of a number of years. (However, for a guy who has facts to back up almost everything he says, he stated that he did not have any solid research to back up that point.) I'm thinking that this is why the doctor was not very concerned about finding the record of the earlier radiation.

    Good luck!

    .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 PSA as of 9/4/2020). (Current T 128 9/4/20.) 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.

     
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    Old 10-18-2020, 11:04 AM   #21
    guitarhillbilly
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    Re: Not Getting Prognosis

    Please note that this is a marathon race and not a 100 yard dash. Got to conserve your energy for the long haul.
    Paula and Jim: Any kind of support system you can get is very helpful.
    If you have any close friends, close family members, close co-workers that you can confide in this will be helpful. Do not be afraid to talk with these folks about the diagnosis. I was blown away by the concern of folks that I never even suspected once they found out about my PCa.
    Someone else's story may take your mind off of your own situation. After I found out my diagnosis I was talking with a co worker who then opened up about his wife and her health. It was clear there was pain and concern in his eyes as he told me the story about how they were just about to complete all her pre-testing to get her liver transplant and then COVID came along and temporarily stopped everything. The timing of the testing in relation to the actual transplant is critical so they experienced a setback for a few MONTHS and had to do some of the tests all over again. They are back on track now.
    All I have to do is look around me and I can find someone who has a worse situation than me.
    I wish the very best possible outcome for Jim and as a man of faith I will pray for the both of you. God Bless.
    __________________
    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 10-18-2020, 07:38 PM   #22
    JWPMP
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by guitarhillbilly View Post
    Please note that this is a marathon race and not a 100 yard dash. Got to conserve your energy for the long haul.
    Paula and Jim: Any kind of support system you can get is very helpful.
    If you have any close friends, close family members, close co-workers that you can confide in this will be helpful. Do not be afraid to talk with these folks about the diagnosis. I was blown away by the concern of folks that I never even suspected once they found out about my PCa.
    Someone else's story may take your mind off of your own situation. After I found out my diagnosis I was talking with a co worker who then opened up about his wife and her health. It was clear there was pain and concern in his eyes as he told me the story about how they were just about to complete all her pre-testing to get her liver transplant and then COVID came along and temporarily stopped everything. The timing of the testing in relation to the actual transplant is critical so they experienced a setback for a few MONTHS and had to do some of the tests all over again. They are back on track now.
    All I have to do is look around me and I can find someone who has a worse situation than me.
    I wish the very best possible outcome for Jim and as a man of faith I will pray for the both of you. God Bless.
    Thank you GH.
    I absolutely agree a support system would make a huge difference if he'd just talk about it with someone besides me.
    And yes hearing that others are facing their own struggles can really put things in perspective. And it does pull the focus from poor me, to, can I do anything to help.
    Appreciate your insight.

     
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