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    Old 10-21-2020, 04:19 PM   #1
    JWPMP
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    RO Call

    Very informative call with the RO.
    He feels there's a good chance the disease is confined to the prostate area.
    (Said Jim has an enormous amount of disease in his prostate and was just shocked that Jim has had no urinary issues at all.)
    IF thats the case, there is a good chance for curative treatment.
    IF its metastatic to his bones, then its a grim prognosis but told Jim he's still looking at many years and let's not get ahead of ourselves at this point.
    Everything depends on the scan.
    He strongly feels the PSMA is superior to the Auxium and wants the PSMA if any way possible.
    At this point, Jim is looking at 24 months of HT which consists of an injection every 1 to 6 months and a daily pill. No details yet, he said the MO will go into detail.
    RT would then start approx 3 months after HT begins.
    This Dr was thorough, patient, discussed everything and just incredible.
    He was VERY disgusted that Jim had never been advised regarding PSA testing.
    Anyway, feeling better about things than I have in a couple months.
    The side effects and possible complications from RT especially due to Jim's previous RT makes your mouth dry, but sounds like they are all manageable and repairable. Most will resolve after its done.
    Jim is still very very down, and angry, thought he'd feel some small bit of relief, but he's not.
    Thank you all for the input, your experience has been invaluable to getting through the days.
    Paula

    Jim 64 years old
    7/2020 First PSA ever 53.5
    9/2020 66.3
    9/2020 MRI
    T4 Tumor
    Anterior Rectal Wall Inasion
    Two suspicious pelvic nodes
    Seminal Vesicle Invasion
    10/2020 Biopsy
    GS 5+4 = 9
    Waiting for PET scan

    Last edited by JWPMP; 10-21-2020 at 04:20 PM. Reason: additional info

     
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    Old 10-21-2020, 09:30 PM   #2
    Insanus
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    Re: RO Call

    I don’t want to come off wrong, but the RO suggesting a G9 stage 4 is most likely limited to the pelvic area and curable, while not impossible, has very slim odds. Even if the scans do not indicate metastasis outside the pelvic area, the odds are they eventually will.

    “ Treatment of Localized Stage IV or D1 Prostate Cancer Prostate cancer may not be diagnosed until it has invaded adjacent organs, such as the rectum or bladder, or spread to lymph nodes in the pelvis. When this occurs, surgery (radical prostatectomy) is seldom an effective treatment. Current treatment involves a combination of external beam radiation therapy (EBRT) and hormone therapy. In localized stage IV prostate cancer, hormone therapy and radiation therapy are often given together and studies have demonstrated that patients treated with radiation therapy and immediate hormonal therapy are more likely to be alive 5 years from initiation of treatment without evidence of cancer progression or development of distant metastatic disease than patients treated with radiation and delayed hormonal therapy. The combination of radiation and immediate hormonal therapy appear to increase the survival of some patients.”

     
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    Old 10-22-2020, 06:18 AM   #3
    JWPMP
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    Re: RO Call

    Quote:
    Originally Posted by Insanus View Post
    I don’t want to come off wrong, but the RO suggesting a G9 stage 4 is most likely limited to the pelvic area and curable, while not impossible, has very slim odds. Even if the scans do not indicate metastasis outside the pelvic area, the odds are they eventually will.

    “ Treatment of Localized Stage IV or D1 Prostate Cancer Prostate cancer may not be diagnosed until it has invaded adjacent organs, such as the rectum or bladder, or spread to lymph nodes in the pelvis. When this occurs, surgery (radical prostatectomy) is seldom an effective treatment. Current treatment involves a combination of external beam radiation therapy (EBRT) and hormone therapy. In localized stage IV prostate cancer, hormone therapy and radiation therapy are often given together and studies have demonstrated that patients treated with radiation therapy and immediate hormonal therapy are more likely to be alive 5 years from initiation of treatment without evidence of cancer progression or development of distant metastatic disease than patients treated with radiation and delayed hormonal therapy. The combination of radiation and immediate hormonal therapy appear to increase the survival of some patients.”
    Thank you for sharing that.
    The RO is Dr Osama Mohamad so I will do more research on his history.
    I may have misspoke. He said "potentially curative" "good chance".
    He said the prostate was very very large and the disease was just beginning to get out.
    I'm not sure why they are not starting HT and RT concurrently up front.
    He said he wants the HT to shrink the Tumor first. He said this cancer will respond very well.
    He even called again last evening to double check a history as he was meeting with Dr Thomas Hope who runs the PSMA Scan clinical trial about the case.
    He has also been vigorous about speeding things up.
    Thank you
    Paula

    Last edited by JWPMP; 10-22-2020 at 07:11 AM. Reason: additional info

     
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    Old 10-22-2020, 07:31 AM   #4
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    Re: RO Call

    Quote:
    Jim is still very very down, and angry, thought he'd feel some small bit of relief, but he's not. Thank you all for the input, your experience has been invaluable to getting through the days.
    We've all been through the rough ups and downs of mentally and emotionally dealing with this disease. There are so many complexities, unknowns, and things unique to each of our situations that I found it very hard, very frustrating, and enormously stressful trying to make objective decisions based on, what I hoped, were facts and hard data.

    You guys are working with some of the best doctors and scientists and will receive the best possible advice and guidance. I too had great confidence in my doctors...BUT I had no way to express my deep emotional stress and frustration.

    I was very fortunate to meet a PhD psychologist/counselor and RN who dealt with the emotional aspects of cancer diagnosis, decision making, and treatment. She was intimately familiar with prostate cancer because it had killed her father and she had been the primary care giver during the end stages.

    It was a terrific freeing of my mind and private voice to be able to talk with her, one on one, about all the technical and emotional aspects of my PCa just after my RALP and during my early ART/SRT/ NO RT decision making. She knew ALL the technical details, knew the right questions to ask, and was able to provide extensive practical guidance. I was able to explore my feelings in depth and release / free myself from many of my somewhat irrational thoughts, fears, and plans.

    I highly recommend finding a professional mental health person with an in depth knowledge and experience dealing with PCa. You are both on a hard road with a lot of twists, turns and pot holes in front of you. An emotional guide / safety pilot to help you down that road will make a world of difference.

    I think the most important thing I learned about dealing with PCa during the last 30-months is to take the disease, decision making, and treatment a day at a time. We can only choose based on what we know and what we know changes / progresses dramatically as we travel the road from Diagnosis / Fear / Confusion to Treatment and Understanding. Trying to figure out what is around that corner, a mile down the road is not helpful when you have to decide what to do at the next corner, which is just in front of you.

    My best wishes to you.
    __________________
    DOB: July 1947
    RALP 8/23/18 pT3a, G7 (3+4), 20% involvement, SM+ (Focal 2mm G6), EPE(Focal G6)+, PNI+, LNI-, SVI-, LVI-
    7g Tumor 20x size in MRI & biopsy report & in BOTH lobes not just L as biopsy reported
    Decipher RP = 0.47, which is .01 above a LOW risk of metastasis (4% chance in 5-years)

    Post-RP PSA
    10/3/18 0.021 01/4/19 0.018 04/03/19 0.022 06/26/19 0.028 10/1/19 0.035 3/14/20 0.050 4/16/20 0.055 7/8/20 0.060 10/6/20 0.069
    01/06/21 0.052

     
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    Old 10-22-2020, 07:43 AM   #5
    Insanus
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    Re: RO Call

    Quote:
    Originally Posted by JWPMP View Post
    Thank you for sharing that.
    The RO is Dr Osama Mohamad so I will do more research on his history.
    I may have misspoke. He said "potentially curative" "good chance".
    He said the prostate was very very large and the disease was just beginning to get out.
    I'm not sure why they are not starting HT and RT concurrently up front.
    He said he wants the HT to shrink the Tumor first. He said this cancer will respond very well.
    He even called again last evening to double check a history as he was meeting with Dr Thomas Hope who runs the PSMA Scan clinical trial about the case.
    He has also been vigorous about speeding things up.
    Thank you
    Paula
    Be patient, the medical wheels turn much slower than we would all like when we are first diagnosed. Your husband will likely be put on an oral medication such as Casodex for 2 weeks prior to the ADT injection. This is to counteract a testosterone flare that occurs with the injection.

     
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    Old 10-22-2020, 09:42 AM   #6
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    Re: RO Call

    Quote:
    Originally Posted by OldTiredSailor View Post
    We've all been through the rough ups and downs of mentally and emotionally dealing with this disease. There are so many complexities, unknowns, and things unique to each of our situations that I found it very hard, very frustrating, and enormously stressful trying to make objective decisions based on, what I hoped, were facts and hard data.

    You guys are working with some of the best doctors and scientists and will receive the best possible advice and guidance. I too had great confidence in my doctors...BUT I had no way to express my deep emotional stress and frustration.

    I was very fortunate to meet a PhD psychologist/counselor and RN who dealt with the emotional aspects of cancer diagnosis, decision making, and treatment. She was intimately familiar with prostate cancer because it had killed her father and she had been the primary care giver during the end stages.

    It was a terrific freeing of my mind and private voice to be able to talk with her, one on one, about all the technical and emotional aspects of my PCa just after my RALP and during my early ART/SRT/ NO RT decision making. She knew ALL the technical details, knew the right questions to ask, and was able to provide extensive practical guidance. I was able to explore my feelings in depth and release / free myself from many of my somewhat irrational thoughts, fears, and plans.

    I highly recommend finding a professional mental health person with an in depth knowledge and experience dealing with PCa. You are both on a hard road with a lot of twists, turns and pot holes in front of you. An emotional guide / safety pilot to help you down that road will make a world of difference.

    I think the most important thing I learned about dealing with PCa during the last 30-months is to take the disease, decision making, and treatment a day at a time. We can only choose based on what we know and what we know changes / progresses dramatically as we travel the road from Diagnosis / Fear / Confusion to Treatment and Understanding. Trying to figure out what is around that corner, a mile down the road is not helpful when you have to decide what to do at the next corner, which is just in front of you.

    My best wishes to you.
    WOW!
    Incredible insight!
    Just chilling how you know exactly...
    I am feeling a lot how you described but my fear etc, doesn't even begin to touch the fringes of how Jim's feeling.
    I will continue to try to get Jim to get support and will research for a counselor with PCa experience
    Thank you so much for sharing.
    Paula

     
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    Old 10-22-2020, 09:48 AM   #7
    JWPMP
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    Re: RO Call

    Quote:
    Originally Posted by Insanus View Post
    Be patient, the medical wheels turn much slower than we would all like when we are first diagnosed. Your husband will likely be put on an oral medication such as Casodex for 2 weeks prior to the ADT injection. This is to counteract a testosterone flare that occurs with the injection.
    Thank you again.
    The patience thing is the hardest, but we have been repeatedly told it is critical.
    Appreciate the additional information about treatment as we have at least 4 weeks until the Medical Oncologist begins to explain things.
    We certainly need to sit still and not try to 2nd guess what's next.
    One Day At A Time does not just work in AA, I think its a life mantra.
    Thank you for taking your time of the weeks ive been posting to respond
    Paula

     
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    Old 10-22-2020, 12:54 PM   #8
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    Re: RO Call

    The Five Stages of Grief

    Hi Paula and Jim. You wrote:

    Quote:
    Originally Posted by JWPMP View Post
    ...
    Jim is still very very down, and angry, thought he'd feel some small bit of relief, but he's not....
    You are mentioning depression and anger. I'm no psychologist, but this sounds a lot like the famous five stages of grief as presented by the late Elisabeth Kübler-Ross. She was focused on those dying or grieving for the death of a loved one, which is not the case for you, but there is applicability of her thinking to other kinds of grief, I believe. For us patients with challenging cases, we are abruptly faced with the severing of many mental ties to our assumed futures, and that can trigger grief. Those mental ties to the future could be anticipation of things we enjoy doing, being able to do our jobs and support our families financially, travel plans, plans for blessed events in our family, or living a long and joyous life with our mate, all seemingly about to be cut off by cancer. I'm glad others are already sharing their own experience with you.

    Her five stages of grief were: denial, anger, bargaining, depression, and acceptance. I suppose the order and depth of each vary a bit for each of us, and, when you have a challenging case, i'ts pretty hard to be in denial, so we may skip that; I did. One comforting thought from her research is that grief is a process that most of us are going to get through successfully. Another comforting thought is that such a grief process is normal.

    I'm thinking that a fortunate outcome for the PET scan would help a lot. I believe that becoming informed and empowered is helping you yourself with these stages, Paula. I hope so.

    I never sought counseling, other than informal support at my church and from friends, but for some of us counseling is probably a great idea. Dr. Kübler-Ross's book(s) may help.

    There can be an up side to this. For those of us who go down to the depths after diagnosis but then beat cancer, or at least think we have, that's a pretty good feeling! I hope it is one you will both enjoy!

    ….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; 10-22-2020 at 12:55 PM. Reason: Added a sentence right after posting.

     
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    Old 10-22-2020, 01:15 PM   #9
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    Re: RO Call

    Quote:
    Originally Posted by JWPMP View Post
    ...
    At this point, Jim is looking at 24 months of HT which consists of an injection every 1 to 6 months and a daily pill....
    That program in support of radiation is what I expected. The pill I had was Casodex, an "antiandrogen", which makes it hard for any androgen fuel to reach the cancer. Casodex basically blocks the fuel ports.

    However, it does not do the greatest job of blocking (though good enough for me). Fortunately, several new antiandrogen drugs, which are far superior in blocking ability - really excellent, are now available to men who have metastatic but "hormone sensitive" prostate cancer, which is likely your husband's case.

    In the past there has been doubt whether the antiandrogen was just needed for a short time up front or throughout the ADT therapy. (I had triple ADT throughout, which involved two additional drugs each day, plus supportive bone medication, which your husband will also need.) I hope to post shortly a new lesson learned from the conference about this. Dr. Mack Roach of UCSF said at the conference that two drugs as ADT in support of radiation throughout the whole course of ADT should be the new norm, and based on other comments and context, I think he meant one of the new super antiandrogens, if the patient qualifies under the approval rules, and maybe even if the patient doesn't qualify, if the doctor is able and willing to fight for special approval. Dr. Mohammed no doubt knows Dr. Roach well. You might want to give Dr. Mohammed's office a call about this if you are curious. (I'm curious myself.)

    ….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 10-22-2020, 03:03 PM   #10
    JWPMP
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    Re: RO Call

    Quote:
    Originally Posted by IADT3since2000 View Post
    That program in support of radiation is what I expected. The pill I had was Casodex, an "antiandrogen", which makes it hard for any androgen fuel to reach the cancer. Casodex basically blocks the fuel ports.

    However, it does not do the greatest job of blocking (though good enough for me). Fortunately, several new antiandrogen drugs, which are far superior in blocking ability - really excellent, are now available to men who have metastatic but "hormone sensitive" prostate cancer, which is likely your husband's case.

    In the past there has been doubt whether the antiandrogen was just needed for a short time up front or throughout the ADT therapy. (I had triple ADT throughout, which involved two additional drugs each day, plus supportive bone medication, which your husband will also need.) I hope to post shortly a new lesson learned from the conference about this. Dr. Mack Roach of UCSF said at the conference that two drugs as ADT in support of radiation throughout the whole course of ADT should be the new norm, and based on other comments and context, I think he meant one of the new super antiandrogens, if the patient qualifies under the approval rules, and maybe even if the patient doesn't qualify, if the doctor is able and willing to fight for special approval. Dr. Mohammed no doubt knows Dr. Roach well. You might want to give Dr. Mohammed's office a call about this if you are curious. (I'm curious myself.)

    ….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.
    I will definitely ask about that next call.
    Dr Mohamad actually said that the tumor will respond "like magic" to the Hormone Therapy and they would get into details later.
    Maybe since Jim is now enrolled in one clinical trial and Dr Carroll's office is willing to fight to fight for the scan, hopefully this other Dr will fight for the Hormone Therapy if necessary and if that's what he was referring to.
    He did actually say "like magic" two times during the call when referring to tumor response.
    The PA said Dr Mohamad is the Radiation Oncologist that Dr Carroll is working the most with at this time, so I'm certain Dr Mohamad must be well acquainted with Dr Roach.
    Thank you for the info
    Paula

     
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    Old 10-22-2020, 03:15 PM   #11
    JWPMP
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    Re: RO Call

    Quote:
    Originally Posted by IADT3since2000 View Post
    The Five Stages of Grief

    Hi Paula and Jim. You wrote:



    You are mentioning depression and anger. I'm no psychologist, but this sounds a lot like the famous five stages of grief as presented by the late Elisabeth Kübler-Ross. She was focused on those dying or grieving for the death of a loved one, which is not the case for you, but there is applicability of her thinking to other kinds of grief, I believe. For us patients with challenging cases, we are abruptly faced with the severing of many mental ties to our assumed futures, and that can trigger grief. Those mental ties to the future could be anticipation of things we enjoy doing, being able to do our jobs and support our families financially, travel plans, plans for blessed events in our family, or living a long and joyous life with our mate, all seemingly about to be cut off by cancer. I'm glad others are already sharing their own experience with you.

    Her five stages of grief were: denial, anger, bargaining, depression, and acceptance. I suppose the order and depth of each vary a bit for each of us, and, when you have a challenging case, i'ts pretty hard to be in denial, so we may skip that; I did. One comforting thought from her research is that grief is a process that most of us are going to get through successfully. Another comforting thought is that such a grief process is normal.

    I'm thinking that a fortunate outcome for the PET scan would help a lot. I believe that becoming informed and empowered is helping you yourself with these stages, Paula. I hope so.

    I never sought counseling, other than informal support at my church and from friends, but for some of us counseling is probably a great idea. Dr. Kübler-Ross's book(s) may help.

    There can be an up side to this. For those of us who go down to the depths after diagnosis but then beat cancer, or at least think we have, that's a pretty good feeling! I hope it is one you will both enjoy!

    ….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 again Jim for your incredible insight into the psychological dynamic at work here.
    Yes, a positive result from the scan will definitely help. But im actually less afraid of the "physical " implications of of positive bone findings than the "psychological " effect it will have on Jim, and in turn his ability to fight this beast to the best of his ability.
    In the meantime, I'm thankful for the sliver of hope as we wait, and for the fact that even an unwanted outcome can still give us many years.
    I'm exhausted
    Thank you again
    Paula

     
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    Old 10-23-2020, 01:19 AM   #12
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    Re: RO Call

    Denial is always present. It shows up as not accepting full responsibility for what happens. No blame and no fault towards others and ourself for whatever we are grieving. It's the the most challenging of all the stages and requires work. It's reward is peace.

     
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    Old 10-23-2020, 06:18 AM   #13
    IADT3since2000
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    Re: RO Call

    Quote:
    Originally Posted by Prostatefree View Post
    Denial is always present. It shows up as not accepting full responsibility for what happens. No blame and no fault towards others and ourself for whatever we are grieving. It's the the most challenging of all the stages and requires work. It's reward is peace.
    I too believe that denial is typical, but it is not universal. I know that because I was not in denial myself, and I have talked with others whom I believe did not experience denial. I recognized the seriousness of the threat right from the start, and I recognized that I had neglected medical appointments that would have given me a better shot at a successful outcome. I was at peace with that and am comfortable with the fact that I had and have imperfections.

    That said, I've interacted with many men who clearly were in denial about both the seriousness of their cases, the importance of putting certain medical and lifestyle tactics to work, and their own role in setting themselves up for more serious cases.

    ….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 10-23-2020, 06:32 AM   #14
    Prostatefree
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    Re: RO Call

    Your reference to yourself being imperfect is a form of denial. You are perfect in the root meaning of the word, whole and complete. We all are.

    For those of us who set aside the caring part of our healthcare there is no excuse, explanation, or inherent imperfection that relieves us of this responsibility. It's simply a choice and it didn't work. No fault. No blame.

     
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    Old 10-23-2020, 06:37 AM   #15
    DjinTonic
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    Re: RO Call

    Jim's last point is one reason I so strongly disagree with the current attitude toward PSA testing in general. The emphasis should be on the early diagnosis of those cases of PCa that poses a serious risk, so that these men have the full benefit of early diagnosis and treatment. Unfortunately, this "good" is played off against the perceived "evil" of diagnosing cases of what are probably indolent cases that may not need treatment for fear they will be treated. This means sacrificing much of the early-detection benefit by pussyfooting around the invented "delicate" problem of negotiating PSA testing with the patient. Rather backassward.

    Doctors don't negotiate fasting glucose, BP, and a slew of standard panel tests.

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
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