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    Old 03-12-2021, 03:30 PM   #1
    JWPMP
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    Strange Prostate Cancer Story

    If anyone has an idea about what's going on, I would really like to point our friend in the right direction.
    Our friend's 65 year old father was "diagnosed" with aggressive prostate cancer which has spread to the spine in January.
    His complaint was back pain and stomach pain.
    The treating doctor also treated this man's wife's breast cancer (first oddity)
    They have started him on infusion chemotherapy every three weeks. He also had a shot in the abdomen,
    don't know what but assume Lupron. (second oddity)
    They have not discussed radiation (third oddity)
    The son did not know what testing his father had, but is it possible to have a biopsy, mri, bone scan, and CT in less than two months?
    And the doctor told this man he has a very aggressive type but because of that it was easier to treat???
    Nothing about this makes sense and I was wanting to scream take him to UCSF. They say the doctor they are dealing with came from Stanford.
    I do not have any type of numbers to provide. But of my short time and the forum, the Dr Walsh & Dr Sholtz books, and our personal experience, none of this sounds right.
    Anyone ever heard of this course of treatment up front?

     
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    Old 03-12-2021, 04:36 PM   #2
    Prostatefree
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    Re: Strange Prostate Cancer Story

    I hear no oddities. I'm curious. Sounds dire.

     
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    Old 03-12-2021, 05:00 PM   #3
    IADT3since2000
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    Re: Strange Prostate Cancer Story

    Quote:
    Originally Posted by JWPMP View Post
    ... Anyone ever heard of this course of treatment up front?
    Just at a quick glance, for very high risk cases with a “high burden” of mets at the start, the thinking now is to start chemo at about the same time as ADT, so that makes sense. Zoladex, which is virtually equivalent to Lupron, is given as a shot in the stomach muscles. Firmagon/degarelix, a more potent (quicker acting, more profound suppression of testosterone) drug than Lupron or Zoladex, is also given in the stomach muscles, and it makes sense that that was the drug he got.

    It is quite possible to have the MRI, scans and biopsy within a very short time frame.

    It could be he had a very high PSA, like mine and Jim’s, and they tend to be aggressive but with an Achilles heel: cut off the testosterone and DHT fuels, and they are knocked way back, typically. That could be what the doctor was getting at.

    Bottom line: yes, if this is what I think it is, it does make sense. Your friend’s father should get almost immediate bone pain relief due to the ADT. But he has a challenging case. I wish him luck.

    ….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 03-12-2021, 05:02 PM   #4
    JWPMP
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    Re: Strange Prostate Cancer Story

    Quote:
    Originally Posted by Prostatefree View Post
    I hear no oddities. I'm curious. Sounds dire.
    Thank you PF!
    Yes dire is a good word, but the doctor said they can't cure it but can put it in remission (now that sounds familiar)
    Maybe we should have skipped UCSF, we'd be 4 months ahead in diagnosis and treatment!! Jim hates going there. Oh well, no point looking back now.
    I didn't know an aggressive cancer was easier to treat, so maybe there's something good about Jim's
    Gleason 9!
    I didn't know the same doctors that treat breast cancer also treat prostate cancer.
    I feel less freaked out now, I was thinking it was all odd.

    Appreciate your time very much
    I'll keep you updated down the road.

     
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    Old 03-12-2021, 05:12 PM   #5
    JWPMP
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    Re: Strange Prostate Cancer Story

    Quote:
    Originally Posted by IADT3since2000 View Post
    Just at a quick glance, for very high risk cases with a “high burden” of mets at the start, the thinking now is to start chemo at about the same time as ADT, so that makes sense. Zoladex, which is virtually equivalent to Lupron, is given as a shot in the stomach muscles. Firmagon/degarelix, a more potent (quicker acting, more profound suppression of testosterone) drug than Lupron or Zoladex, is also given in the stomach muscles, and it makes sense that that was the drug he got.

    It is quite possible to have the MRI, scans and biopsy within a very short time frame.

    It could be he had a very high PSA, like mine and Jim’s, and they tend to be aggressive but with an Achilles heel: cut off the testosterone and DHT fuels, and they are knocked way back, typically. That could be what the doctor was getting at.

    Bottom line: yes, if this is what I think it is, it does make sense. Your friend’s father should get almost immediate bone pain relief due to the ADT. But he has a challenging case. I wish him luck.

    ….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 also Jim!
    I feel ssooo much better that this is not odd! I was screaming inside.
    Just wish we would have stuck around here local and got quicker treatment.
    He just went to the doctor sometime in January and started treatment last week.
    I was thinking only a urologist could treat prostate cancer, but sounds like there are other oncologists just as capable!
    Since we've started down our trail this far, we'll stick with our current team...but gosh Jim hates going to San Francisco and I pushed him into it.
    Thank you so much again.
    Really appreciate the info!

     
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    Old 03-13-2021, 04:44 AM   #6
    Steve135
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    Re: Strange Prostate Cancer Story

    JWPMP, I think at the start of your posting it was pointed out that what was a good treament for me might not be the same for Jim. Even if our age and PSA biopsy results seemed the same. The first thing I learn is eveyones different, and whats good for me isn't for anyone else. This is why doctors are continually fighting with insurers for treatments. The insurance companies have grouped eveyone as the same. They place us formularies and treat us all the same, with a broad stoke pencil.
    While they have come a long way in the last 20 years of treament of Pca, the treatment hasn't change all that much but the science and medications has, they still haven't a clue why some do better than others.
    The PET/bone scan/CT scans so close or fast really isn't surprizing. What generally slows these down is insurance and getting an appointment on a table. Many private doctors that only do PET/CT/MRI have high end machines not found in everywhere. Nowadays they do both scans at once to compare results for better findings.

     
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    Old 03-13-2021, 05:32 AM   #7
    IADT3since2000
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    Re: Strange Prostate Cancer Story

    Hi Steve, you wrote:

    Quote:
    Originally Posted by Steve135 View Post
    ... While they have come a long way in the last 20 years of treament of Pca, the treatment hasn't change all that much but the science and medications has, they still haven't a clue why some do better than others....
    There are a lot of doctors who would agree with your first thought that treatment has come a long way, but not that it hasn't changed that much. And it's not just treatment, but "management", like active surveillance, that wasn't even considered by the vast majority of doctors two decades ago. While it is still surgery or radiation for most of the rest of us who need treatment, there have been some changes in surgery (especially the laparoscopic and robotic options), and numerous major changes in radiation and supporting technology. I can point to some of them if you would like me to.

    Also, doctors and other researchers now have many good, sound ideas, backed by research why some patients do better than others. It's pretty well understood, but still evolving. The book "The Key to Prostate Cancer," 2018 by Dr. Mark Scholz, MD as lead author and 29 others breaks prostate cancer down into five main situations and three subsets for each of those, explaining why prostate cancer patients do very well overall, with a few exceptions, but have different outcomes. Basically several factors come to mind affecting why some do better than others: whether the cancer is detected earlier or later; how aggressive the patient's particular cancer is; the patient's own genetics and other biology; the patient's diet and other lifestyle influences; and of course the suitability and competence of treatment, including monitoring and other follow up. Perhaps others might add to that list. If you have a specific concern, I or others here may be able to address it.

    ….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.

    Last edited by IADT3since2000; 03-13-2021 at 07:33 AM. Reason: Added some detail why some patients do better.

     
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    Old 03-13-2021, 05:45 AM   #8
    Prostatefree
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    Re: Strange Prostate Cancer Story

    Measure twice, cut once. Prostate cancer is slow growing. Better to take your time diagnosing and consulting before a rush to treatment.

    One can rush to treatment when it's so severe few treatment options remain and the goal is simply relief from pain. But even then, speed doesn't change the outcome. I would not want to change places with your friend's father.

    In general, urban healthcare will be more available, professional, current and effective than rural healthcare.

     
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    Old 03-13-2021, 07:31 AM   #9
    JWPMP
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    Re: Strange Prostate Cancer Story

    Quote:
    Originally Posted by Prostatefree View Post
    Measure twice, cut once. Prostate cancer is slow growing. Better to take your time diagnosing and consulting before a rush to treatment.

    One can rush to treatment when it's so severe few treatment options remain and the goal is simply relief from pain. But even then, speed doesn't change the outcome. I would not want to change places with your friend's father.

    In general, urban healthcare will be more available, professional, current and effective than rural healthcare.
    Thank you for that perspective PF, really appreciate it.
    Wow, sounds like our friend's Dad is in a bad spot, worse than Jim.
    I appreciate the reassurance we went the correct route.
    Our friend said his Dad is willing to go elsewhere if he feels the need, but is comfortable with his care at this time.
    This boy's Uncle (Dad's brother) also has had it and is still around, at least 10 years and doesn't know the details.
    This boy who is 37 is going to start testing at 40 now that this has happened. He is angry, like all of us, that the doctor never brought testing up with his Dad.
    Thank you again

     
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    Old 03-15-2021, 07:51 AM   #10
    CuriousCharles
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    Re: Strange Prostate Cancer Story

    You and the patient and caregivers may want to read this first.

    https://www.nccn.org/patients/guidelines/content/PDF/prostate-advanced-patient.pdf

    The people at UCSF are also excellent. They do Zoom appointments once you are set up with them.

    https://www.ucsfhealth.org/clinics/genitourinary-medical-oncology

    https://cancer.ucsf.***/research/programs/prostate

     
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    Old 03-15-2021, 02:38 PM   #11
    JWPMP
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    Re: Strange Prostate Cancer Story

    Quote:
    Originally Posted by CuriousCharles View Post
    You and the patient and caregivers may want to read this first.

    https://www.nccn.org/patients/guidelines/content/PDF/prostate-advanced-patient.pdf

    The people at UCSF are also excellent. They do Zoom appointments once you are set up with them.

    https://www.ucsfhealth.org/clinics/genitourinary-medical-oncology

    https://cancer.ucsf.***/research/programs/prostate
    Thank you for the links Charles.
    My husband is being treated by the UCSF Prostate Cancer staff.
    I feel good when we get reassurance that the "inconvenience " is well worth it;
    as some people we know have been/are being treated locally, and the process is much quicker.

     
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    Old 05-05-2021, 09:18 PM   #12
    JWPMP
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    Re: Strange Prostate Cancer Story

    Talked to our friend again today.
    Another hard to fathom number.
    Supposedly his Dad had his PSA tested a year before the cancer was found...it was 0.4
    1 year later its 700+ and two weeks after that 1400?? Is that possible?
    The doctors started chemo infusions and brought it down to 50 something. The doctor told him that good response bought him at least 3 more years, probably much more. They took a break on the chemo due to excessive hand swelling. Don't know when they'll restart.
    I'm worried if they are getting accurate information and treatment.
    Thank you
    Paula

     
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    Old 05-06-2021, 11:33 AM   #13
    IADT3since2000
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    Re: Strange Prostate Cancer Story

    Hi Paula,

    Wow!

    Yes that's quite possible and makes sense. Two weeks is the shortest PSA doubling time that I've heard experts describe as the shortest end of the range, and you can see that you can jack up the PSA pretty fast: in reverse, from 1,400, in two weeks to 700, in two weeks to 350, in two weeks to 175, in two weeks to 87.5, in two weeks to 43.3, in two weeks to 21.6, in two weeks to 10.8, in two weeks to 5.4, in two weeks to 2.7, in two weeks to 1.3, in two more weeks to .65. If I've counted right, that's 22 weeks to get from .65 to 1,400, or five and a half months. It's rare, but the docs who specialize in prostate cancer, especially the medical oncologists, do see it.

    There are a number of approaches for such patients that I've heard about. For the right such patient getting the right such treatment, life could be extended for years if not indefinitely.

    Quite a story!

    ….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 05-06-2021, 12:06 PM   #14
    JWPMP
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    Re: Strange Prostate Cancer Story

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi Paula,

    Wow!

    Yes that's quite possible and makes sense. Two weeks is the shortest PSA doubling time that I've heard experts describe as the shortest end of the range, and you can see that you can jack up the PSA pretty fast: in reverse, from 1,400, in two weeks to 700, in two weeks to 350, in two weeks to 175, in two weeks to 87.5, in two weeks to 43.3, in two weeks to 21.6, in two weeks to 10.8, in two weeks to 5.4, in two weeks to 2.7, in two weeks to 1.3, in two more weeks to .65. If I've counted right, that's 22 weeks to get from .65 to 1,400, or five and a half months. It's rare, but the docs who specialize in prostate cancer, especially the medical oncologists, do see it.

    There are a number of approaches for such patients that I've heard about. For the right such patient getting the right such treatment, life could be extended for years if not indefinitely.

    Quite a story!

    ….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.
    Amazing math Jim! I just couldn't wrap my mind around that.
    Well good to know his life expectancy could be indefinite. He's getting his treatment in Modesto, have no idea where, but I am very skeptical of the availability of qualified oncologists for complicated cases.
    Maybe my Jim will have "indefinite " life expectancy also, since his case is much less advanced than our friend's. Hoping for good results from the PSMA scan Monday. His last PSA was 0.8 on March 17th, so should be enough PSA left for a "somewhat" accurate assessment, at least as good as a regular PET scan I hope.
    Thanks for your time as always Jim.
    Paula

     
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    Old 05-07-2021, 10:46 PM   #15
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    Re: Strange Prostate Cancer Story

    Quote:
    Originally Posted by JWPMP View Post
    Thank you for that perspective PF, really appreciate it.
    Wow, sounds like our friend's Dad is in a bad spot, worse than Jim.
    I appreciate the reassurance we went the correct route.
    Our friend said his Dad is willing to go elsewhere if he feels the need, but is comfortable with his care at this time.
    This boy's Uncle (Dad's brother) also has had it and is still around, at least 10 years and doesn't know the details.
    This boy who is 37 is going to start testing at 40 now that this has happened. He is angry, like all of us, that the doctor never brought testing up with his Dad.
    Thank you again
    PSA Testing has helped save many men and yet still about 1/2 of MD's do NOT do it. Men have to be educated very young to demand PSA testing.

    Prostate Cancer and Breast Cancer are both Hormone based Cancers and have a direct relationship.

    Quote :
    https://pubmed.ncbi.nlm.nih.gov/20147902/

    "Breast cancer and prostate cancer are the two most common invasive cancers in women and men, respectively. Although these cancers arise in organs that are different in terms of anatomy and physiological function both organs require gonadal steroids for their development, and tumours that arise from them are typically hormone-dependent and have remarkable underlying biological similarities. Many of the recent advances in understanding the pathophysiology of breast and prostate cancers have paved the way for new treatment strategies. In this Opinion article we discuss some key issues common to breast and prostate cancer and how new insights into these cancers could improve patient outcomes."
    __________________
    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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