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    Old 08-21-2020, 07:23 PM   #1
    JWPMP
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    New to This

    Not sure what I'm looking for, but here is where we are.
    Background first
    We live in Northern California
    My husband is 64.
    He has struggled with gout off and on 20 years.
    He lost a kidney in an accident at 20.
    He had testicular cancer in 1992 and had one testicle removed followed by full pelvic radiation.
    Cancer free ever since.
    He broke his pelvis in 2015 and has a titanium plate.
    In 2011 he had a hip replacement and has a metal joint.
    Otherwise he is completely healthy, very active (we have horses and cattle).
    In July he went to the Dr for his gout. the Dr sent him for bloodwork.
    a week later they call and say a few numbers are not good come in and talk. So we go see him. He says "well your uric acid and cholesterol are a little high but your PSA the worrisome one. (first PSA test ever)
    It is 53.5 and should be under 4.
    You have cancer".
    We almost fell over. Just shock.
    So he sends us to a Urologist.
    The Urologist does a DRE.
    Findings are a multinodular indurated prostate. With elevated PSA probable carcinoma.
    So a transrectal biopsy is scheduled a month out (Aug 27th)
    Massive anxiety and my husband thinks he's terminal and has been totally depressed.
    As we are waiting a friend tells us about a Surgical Prostate Oncologist Dr Peter Carroll at UCSF.
    We spoke with him via Zoom today.
    Wants to do an MRI before the biopsy and asked if we would be willing to have the biopsy done there.
    Of course! He's the first Doctor to actually talk to us. He says Jim is treatable and we'll get through this, but let's get the extent of disease sooner than later.
    So thats our story and any input would be so very appreciated.
    I've been obsessively reading this forum and finally decided to post.
    Thank you for your time.

    No family history of PCA
    No symptoms
    age at first PSA test 64 years old
    7/14/2020 PSA 53.5
    7/23/2020 DRE Indurated multinodular prostate

    Last edited by JWPMP; 08-21-2020 at 08:09 PM. Reason: correct an incorrect term & add location

     
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    Old 08-22-2020, 05:34 AM   #2
    IADT3since2000
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    Re: New to This

    Hi JWPMP and welcome to the Board!

    I'm an East Coaster, but when I first started reading and noticed you were from Northern California, I immediately thought of UCSF as they have a world-class facility and team for assessing and treating prostate cancer. While UCSF has a number of doctors with international reputations, probably the first one that comes to mind for many of us is Dr. Peter Carroll, MD. In short, your husband's case is in very good hands!

    With a PSA of 53.5, most of us would freak out, unless we were too stunned. That was me - too stunned at my own PSA of 113.6 with a "rock hard" prostate. It is very likely, based on the PSA and DRE results, in my layman's view (no enrolled medical education) that your husband has what is termed a "high-risk" case, which essentially means a high risk that surgery will not be able to cure the disease, and it's a definition with technical components regarding PSA, the "Gleason score," and "stage." That does not mean that your husband is incurable, especially these days with all the advances that are being made. (For instance, it appears I am now cured, though all of us need to keep our guard up.) Dr. Carroll is a urologist, but I suspect he may be referring you to one of the outstanding radiation doctors at UCSF. One of them, Dr. Mack Roach, MD, is also a world-class doctor who treats prostate cancer and researcher, and a pioneer in better imaging and treatment. You can look up the very long lists of papers for which Drs. Carroll or Roach were authors/co-authors at www.pubmed.gov, using these search strings:
    carroll pr [au] AND prostate cancer
    roach m [au] AND prostate cancer
    I just did that and got 510 results for Dr. Carroll and 302 for Dr. Roach. Both totals are amazingly high, reflecting the brilliance and energy of these extraordinary physicians. (Dr. Roach is also the nephew of baseball immortal Hank Aaron - quite a family!)

    So your family is in good hands, but what about the odds of success? Back in the 70s the odds were not good for prostate cancer patients, and your family may include relatives treated back then or while odds were improving in the following decade or two. But there has been enormous progress since that time, with odds of surviving any kind of prostate cancer the best of any major cancer (not counting testicular, once deadly as it was for my well-known classmate Brian Piccolo, now highly survivable as you know). As of now, almost all patients - 98%, even where there is regional spread (99% at 5 years)- survive at least to the 5 year point after diagnosis (https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/survival-rates.html - updated in 2020), but, more impressive, according to a 2014 document, the 10 year survival rate was 99% and the 15 year rate was 94%! When I was diagnosed, I thought I had only months to live, so figures like these would have been very encouraging. Keep in mind that most patients will live a lot longer than 15 years after diagnosis (as I am doing, now at 20 years). Also, be aware that technology has improved a lot since those 15 year figures were published in 2014. (All these figures are for survival compared to age-matched peers who do not have prostate cancer.) On the other hand, prostate cancer is no cake walk, and it is very important for patients like your husband to get expert treatment, and prayer and a little luck don't hurt.

    That's it for now. I hope this has helped.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.


     
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    Old 08-22-2020, 06:34 AM   #3
    guitarhillbilly
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    Re: New to This

    JWPMP:
    "As we are waiting a friend tells us about a Surgical Prostate Oncologist Dr Peter Carroll at UCSF.
    We spoke with him via Zoom today.
    Wants to do an MRI before the biopsy and asked if we would be willing to have the biopsy done there.
    Of course! He's the first Doctor to actually talk to us. He says Jim is treatable and we'll get through this, but let's get the extent of disease sooner than later."


    You have an excellent choice in Dr. Carroll as a UR! The fact that he wants to do the MRI before a Biopsy tells me a whole lot about him and his knowledge.

    Be patient because we on this forum know first hand the time involved from diagnosis to treatment can cause anxiety.
    I had to be ADT- Lupron for at least 2 months before my Radiologist would start the IMRT [Radiation]. 3 weeks before I started IMRT my UR did the Fiducial Markers and SpaceOAR Gel Procedure under General Anesthesia. It was almost 4 months from Biopsy and Diagnosis to my first IMRT session. Some of this time involved was waiting for Insurance Approval at various stages.

    I wish the both of you the very best success in the treatment of the PCa.
    __________________
    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 08-22-2020, 07:43 AM   #4
    JWPMP
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    Join Date: Jul 2020
    Location: Oakdale CA
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    Re: New to This

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi JWPMP and welcome to the Board!

    I'm an East Coaster, but when I first started reading and noticed you were from Northern California, I immediately thought of UCSF as they have a world-class facility and team for assessing and treating prostate cancer. While UCSF has a number of doctors with international reputations, probably the first one that comes to mind for many of us is Dr. Peter Carroll, MD. In short, your husband's case is in very good hands!

    With a PSA of 53.5, most of us would freak out, unless we were too stunned. That was me - too stunned at my own PSA of 113.6 with a "rock hard" prostate. It is very likely, based on the PSA and DRE results, in my layman's view (no enrolled medical education) that your husband has what is termed a "high-risk" case, which essentially means a high risk that surgery will not be able to cure the disease, and it's a definition with technical components regarding PSA, the "Gleason score," and "stage." That does not mean that your husband is incurable, especially these days with all the advances that are being made. (For instance, it appears I am now cured, though all of us need to keep our guard up.) Dr. Carroll is a urologist, but I suspect he may be referring you to one of the outstanding radiation doctors at UCSF. One of them, Dr. Mack Roach, MD, is also a world-class doctor who treats prostate cancer and researcher, and a pioneer in better imaging and treatment. You can look up the very long lists of papers for which Drs. Carroll or Roach were authors/co-authors at www.pubmed.gov, using these search strings:
    carroll pr [au] AND prostate cancer
    roach m [au] AND prostate cancer
    I just did that and got 510 results for Dr. Carroll and 302 for Dr. Roach. Both totals are amazingly high, reflecting the brilliance and energy of these extraordinary physicians. (Dr. Roach is also the nephew of baseball immortal Hank Aaron - quite a family!)

    So your family is in good hands, but what about the odds of success? Back in the 70s the odds were not good for prostate cancer patients, and your family may include relatives treated back then or while odds were improving in the following decade or two. But there has been enormous progress since that time, with odds of surviving any kind of prostate cancer the best of any major cancer (not counting testicular, once deadly as it was for my well-known classmate Brian Piccolo, now highly survivable as you know). As of now, almost all patients - 98%, even where there is regional spread (99% at 5 years)- survive at least to the 5 year point after diagnosis (https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/survival-rates.html - updated in 2020), but, more impressive, according to a 2014 document, the 10 year survival rate was 99% and the 15 year rate was 94%! When I was diagnosed, I thought I had only months to live, so figures like these would have been very encouraging. Keep in mind that most patients will live a lot longer than 15 years after diagnosis (as I am doing, now at 20 years). Also, be aware that technology has improved a lot since those 15 year figures were published in 2014. (All these figures are for survival compared to age-matched peers who do not have prostate cancer.) On the other hand, prostate cancer is no cake walk, and it is very important for patients like your husband to get expert treatment, and prayer and a little luck don't hurt.

    That's it for now. I hope this has helped.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

    What encouraging news Jim! (also my husband’s name), and so amazing that you've heard of this Dr!!
    I will check out the links you gave. Been scaring myself with the internet especially since I understand very little and have limited information so far.
    Thank you so much for taking the time to reply, I am grateful.

    Last edited by JWPMP; 08-22-2020 at 08:31 AM. Reason: correct an incorrect word

     
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    Old 08-22-2020, 07:58 AM   #5
    JWPMP
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    Join Date: Jul 2020
    Location: Oakdale CA
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    Re: New to This

    Quote:
    Originally Posted by guitarhillbilly View Post
    JWPMP:
    "As we are waiting a friend tells us about a Surgical Prostate Oncologist Dr Peter Carroll at UCSF.
    We spoke with him via Zoom today.
    Wants to do an MRI before the biopsy and asked if we would be willing to have the biopsy done there.
    Of course! He's the first Doctor to actually talk to us. He says Jim is treatable and we'll get through this, but let's get the extent of disease sooner than later."


    You have an excellent choice in Dr. Carroll as a UR! The fact that he wants to do the MRI before a Biopsy tells me a whole lot about him and his knowledge.

    Be patient because we on this forum know first hand the time involved from diagnosis to treatment can cause anxiety.
    I had to be ADT- Lupron for at least 2 months before my Radiologist would start the IMRT [Radiation]. 3 weeks before I started IMRT my UR did the Fiducial Markers and SpaceOAR Gel Procedure under General Anesthesia. It was almost 4 months from Biopsy and Diagnosis to my first IMRT session. Some of this time involved was waiting for Insurance Approval at various stages.

    I wish the both of you the very best success in the treatment of the PCa.
    Thank you for the insight and perspective. We weren't sure if this is normal. The waiting has been excruciating. Patience will be the keyword going forward.
    When my husband was diagnosed with Testicular cancer in 1992 they did surgery the same week.
    Of course I do see Insurance approval seems much slower these days and the Covid issue has also reduced the number of patients being seen per day/week.

    Thank you also for the MRI statement. I was unsure the reasoning until Dr Carroll explained. then it made so much sense i wondered why our urologist didn't order that while we're waiting around for a month. (He said the wait is due to the fact they only do the procedure two days a week, why I'm not sure)

    Our friend who suggested Dr Carroll was diagnosed 15 years ago with a PSA of 29 at 54 years old. And it was from a blood draw at a health faire in a little town called Sonora. It was just by chance that his urologist had mentored under Dr Carroll and sent our friend there.
    He has been cancer free and continuing his active outdoor lifestyle without problems and is now 69.
    We spend many hours horseback nearly daily and are hoping to not have to sell our animals and make dramatic changes to our lifestyle, although survival is the number one concern of course.

    Thank you again for taking the time to respond!

     
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    Old 08-22-2020, 08:30 AM   #6
    GuyBMeredith
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    Re: New to This

    Welcome to the forum, it's a good place to be. There is quite a range of experience here and we all benefit from that. Yours will be warmly welcomed as well.
    __________________
    Diagnosed at age 73 Feb 2019 DRE indicates nodule PSA 2.8 Aug 2019 PSA 3.1 Urologist suggests biopsy in Oct Results of biopsy: 2 of 12 cores positive. Low volume T2b, intermediate risk, GS 3+4, PSA 3.10, prostate cancer, perineural invasion. Followed up with MRI to help decide between surgery and IMRT. MRI shows suspicious PIRADS 5 lesion measuring 2.cm in diameter, with associated left neurovascular bundle involvement. Started 6 month lupron series Feb 2020, 28 sessions of high dose IMRT Apr 15, 2020. Sexual functions okay except ejaculate has changed. Without libido it is an academic process that requires much focus. July 27 first measure of PSA and total testosterone. PSA: .13 ng/dl Total testosterone is less than 12 ng/dl.

     
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    Old 08-22-2020, 11:34 AM   #7
    IADT3since2000
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    Re: New to This

    Hi again JWPMP.

    You wrote:
    Quote:
    Originally Posted by JWPMP View Post
    What encouraging news Jim! (also my husband’s name), and so amazing that you've heard of this Dr!!
    I will check out the links you gave. Been scaring myself with the internet especially since I understand very little and have limited information so far.
    Thank you so much for taking the time to reply, I am grateful.
    What you wrote brings back memories. It is difficult for all of us to get up to speed and oriented when we or a loved one has just been diagnosed with prostate cancer. (I know a lot now, but when we started out, I thought the max score for a PSA was 10, so you can imagine how shocked I was to see a score over 100 , and I had never heard of a DRE - that changed the next day.) Part of the problem is that there is so much information. Also, quite a bit of it is obsolete as there has been and continues to be so much progress, and associated imaging, which is a very nice "problem" to have. Further, some information is just downright false or misleading.

    PubMed is a wonderful source as it is the same information upon which doctors base their thinking. However, unless you have somehow acquired a medical or statistical background, it can be hard to understand. At least much of the time it is clear from the "conclusion" section what the paper is basically saying, and if you are trying to learn about a prominent doctor, you can get an idea what he likes to focus on, who he works with, and his level of prominence in the field. I and others here can help interpret what papers are saying if you have specific questions.

    Fortunately, there are some outstanding books on prostate cancer. It's wise to stick with books (and newsletters) that are fairly recent as things are advancing so rapidly. For instance, the kind of radiation I rejected in 2000 is now not offered in most places, and the kind I actually had in 2013 has now been improved, in most places, by a version with far fewer radiation sessions but effectiveness and safety that are at least equal. I particularly recommend the 2018 book "The Key to Prostate Cancer", by Dr. Mark Scholz, MD, a prominent medical oncologist heading a practice dedicated solely to prostate cancer in Marina del Rey, plus many chapters by 29 other authors, most of them with national or international reputations. The book is efficient as it offers a short quiz to sort your kind of case, then allows you to focus on those chapters, plus a few common chapters, instead of reading everything. While the authors are experts, they write in a style and with language that is easy to read.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 08-22-2020, 11:53 AM   #8
    IADT3since2000
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    Re: New to This

    Quote:
    Originally Posted by JWPMP View Post
    ...
    We spend many hours horseback nearly daily and are hoping to not have to sell our animals and make dramatic changes to our lifestyle, although survival is the number one concern of course....
    Hi again.

    I'm responding to your response to guitarhillbilly, above.

    Care can be expensive, but if you have decent insurance, you should be able to do okay financially. There are also some support programs that often help when the financial burden is high. I thought we would have to sell our home to pay for my care when we started out after diagnosis, but we have done fine - not as many vacations, but well overall, and my impression is that that is typical.

    Most of us need to get exercise, which is likely not an issue for you or your husband, so the horses may be helping (I'm envious.), and also may be helping to keep stress in check, which is difficult right after diagnosis, but gets easier. Many of us should eat a healthier diet, so that may mean some changes. A popular diet for prostate cancer patients that is fairly easy to adopt and tasty, once you get used to it, is the Mediterranean diet. Another is the vegan diet, though that can be tough to maintain for many of us. I've heard one leading doctor claim that the diet that is best is the one that works for you. My own judgement is that there is a lot of evidence that supports the Mediterranean diet, but it is not conclusive that it is a great diet for all patients. What seems not to be so great is the typical Western diet that features a lot of red meat. If you run a cattle ranch, it's probably best to let the customers eat the beef and find something else to eat, at least for your husband. My wife loves her beef, but I have eaten almost none since shortly after my diagnosis.

    You will probably be able to maintain much of your lifestyle, though there will likely be at least a year or so when side effects of treatment will require temporary adjustments. While that can be a burden for a while, as you put it so well, survival is the main concern.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 08-22-2020, 12:26 PM   #9
    JWPMP
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    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by GuyBMeredith View Post
    Welcome to the forum, it's a good place to be. There is quite a range of experience here and we all benefit from that. Yours will be warmly welcomed as well.
    thanks so much
    amazing support here already!

     
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    Old 08-22-2020, 06:54 PM   #10
    JWPMP
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    Join Date: Jul 2020
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    Re: New to This

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi again.

    I'm responding to your response to guitarhillbilly, above.

    Care can be expensive, but if you have decent insurance, you should be able to do okay financially. There are also some support programs that often help when the financial burden is high. I thought we would have to sell our home to pay for my care when we started out after diagnosis, but we have done fine - not as many vacations, but well overall, and my impression is that that is typical.

    Most of us need to get exercise, which is likely not an issue for you or your husband, so the horses may be helping (I'm envious.), and also may be helping to keep stress in check, which is difficult right after diagnosis, but gets easier. Many of us should eat a healthier diet, so that may mean some changes. A popular diet for prostate cancer patients that is fairly easy to adopt and tasty, once you get used to it, is the Mediterranean diet. Another is the vegan diet, though that can be tough to maintain for many of us. I've heard one leading doctor claim that the diet that is best is the one that works for you. My own judgement is that there is a lot of evidence that supports the Mediterranean diet, but it is not conclusive that it is a great diet for all patients. What seems not to be so great is the typical Western diet that features a lot of red meat. If you run a cattle ranch, it's probably best to let the customers eat the beef and find something else to eat, at least for your husband. My wife loves her beef, but I have eaten almost none since shortly after my diagnosis.

    You will probably be able to maintain much of your lifestyle, though there will likely be at least a year or so when side effects of treatment will require temporary adjustments. While that can be a burden for a while, as you put it so well, survival is the main concern.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.
    I'll sure get that book you mentioned in your previous reply...thanks so much for the recommendation!

    We have excellent insurance so thankful. If we got in a bind we have some downsizing we could do.

    We actually have what is considered a "hobby farm". 10 horses and 40 head of longhorn cattle. no profit in any of it. Downsizing our cattle herd wouldn't be the end of the world, but would hurt some as we've raised 90% of them and we get "attached". But my concern was if Jim would be able to continue to ride as our horses are our life so to speak.
    A year of feeling "under the weather" is doable as I've had to take over the riding and heavy chores in the past due to other surgeries/injuries hes been through. Light at the end of the tunnel is a great motivator to keep going.
    Yes, these animals and riding are a tremendous stress reliever and you actually forgoet about everything else for a while.
    Your comments about diet are right on! My husband has drastically changed his diet and is eating what is called "lean and green". He actually started a bit before we found out about the cancer as his weight was creeping up there, a life long battle. You're correct about the red meat, hard to get him to move away from daily beef, but I've been getting the chicken, fish, and some lean ham.
    Lots of vegetables
    We will continue to make dietary changes a priority.

    Again, appreciate your insight and suggestions!! Thank you

     
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    Old 08-23-2020, 07:54 AM   #11
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi again JWPMP.

    You wrote:

    What you wrote brings back memories. It is difficult for all of us to get up to speed and oriented when we or a loved one has just been diagnosed with prostate cancer. (I know a lot now, but when we started out, I thought the max score for a PSA was 10, so you can imagine how shocked I was to see a score over 100 , and I had never heard of a DRE - that changed the next day.) Part of the problem is that there is so much information. Also, quite a bit of it is obsolete as there has been and continues to be so much progress, and associated imaging, which is a very nice "problem" to have. Further, some information is just downright false or misleading.

    PubMed is a wonderful source as it is the same information upon which doctors base their thinking. However, unless you have somehow acquired a medical or statistical background, it can be hard to understand. At least much of the time it is clear from the "conclusion" section what the paper is basically saying, and if you are trying to learn about a prominent doctor, you can get an idea what he likes to focus on, who he works with, and his level of prominence in the field. I and others here can help interpret what papers are saying if you have specific questions.

    Fortunately, there are some outstanding books on prostate cancer. It's wise to stick with books (and newsletters) that are fairly recent as things are advancing so rapidly. For instance, the kind of radiation I rejected in 2000 is now not offered in most places, and the kind I actually had in 2013 has now been improved, in most places, by a version with far fewer radiation sessions but effectiveness and safety that are at least equal. I particularly recommend the 2018 book "The Key to Prostate Cancer", by Dr. Mark Scholz, MD, a prominent medical oncologist heading a practice dedicated solely to prostate cancer in Marina del Rey, plus many chapters by 29 other authors, most of them with national or international reputations. The book is efficient as it offers a short quiz to sort your kind of case, then allows you to focus on those chapters, plus a few common chapters, instead of reading everything. While the authors are experts, they write in a style and with language that is easy to read.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.
    Hi Again
    I ordered the book this morning.
    It was a bit scary as it makes this more real, very odd feeling.
    It does seem though, that as frightening as this is, the unknown is even more so. And the information is overwhelming.
    Thank you for pointing the right direction.

     
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    Old 08-23-2020, 09:50 AM   #12
    guitarhillbilly
    Senior Member
    (male)
     
    Join Date: Jan 2020
    Posts: 231
    guitarhillbilly HB Userguitarhillbilly HB Userguitarhillbilly HB User
    Re: New to This

    Please watch this video.

    https://www.*******.com/watch?v=Pya8N78bR7s

    These Videos are found on YT.
    __________________
    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 08-23-2020, 10:15 AM   #13
    OldTiredSailor
    Junior Member
    (male)
     
    Join Date: Dec 2019
    Location: Punta Gorda
    Posts: 45
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    Re: New to This

    Quote:
    We spend many hours horseback nearly daily and are hoping to not have to sell our animals and make dramatic changes to our lifestyle, although survival is the number one concern of course.
    robot assisted surgery to remove prostate in late August 2018 when I was just past 71st birthday.

    3-months later I was back to long hard bicycle riding on both the street and in nasty dirt. I've been a very serious rider for 50-years and by 6-months post surgery I could feel no impact of any kind from the surgery while riding many hours at a time.

    5-months after the surgery I was back to sailing my 40-foot sailboat by myself in serious winds. Again, I felt no negative impact from my surgery.

    10-months after the surgery, as my 72nd birthday loomed on the calendar - I was playing very serious pickleball 3-hours a day, 6-days a week with no thoughts about the long past surgery.

    Today is the 2nd-annual anniversary of my prostatectomy and my life goes on as if it never happened.

    You will have a lot to learn over the next few months but the outcomes are typically quite positive and you are being seen at one of the best prostate cancer facilities in the world.

    Feel free to ask us what ever comes to mind. This is a huge learning experience and there is a vast amount of experience here that will gladly answer all your questions.
    __________________
    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 08-23-2020, 10:52 AM   #14
    DjinTonic
    Veteran
    (male)
     
    Join Date: Dec 2019
    Location: NC
    Posts: 452
    DjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB User
    Re: New to This

    For the benefit of newbies reading the Forum posts, I have to point out that someone 64 years, obviously under medical care for a chronic condition, should have had his first PSA test well before the age of 64. PSA screening is not something you should keep to yourself, but rather discuss and calmly encourage with friends and family members. It's just another blood test to add on to your annual physical. Not all prostate cancer needs to be treated, and no one will force you treat. "Only" about 15-20% of prostate cancer is of the more serious high-grade variety, but PSA screening helps catch that early.
    ________________________________

    While only a prostate biopsy can diagnose prostate cancer, I would point out the phrase used for your husband was "probable carcinoma" and you should be prepared. Here are the major events coming up, as I see them:

    An MRI can identify suspicious areas that may be PCa lesions and, if it is an mpMRI (multiparametric MRI), the radiologist will grade each suspicious area on a 1-5 PRIADS scale, where PIRADS 1-2 are probably not malignant, 3 is an intermediate gray area, and 4-5 are suspicious for being high-grade lesions.

    The MRI can also give some indication as to whether the cancer appears to have grown out from the prostate locally, for example, piercing the prostate capsule or growing into the seminal vesicle(s). Enlarged lymph nodes may indicate metastases.

    Given your husband's PSA and DRE exam, your doc will want a prostate biopsy even in the event that the MRI is very favorable.

    If PCa is confirmed by the biopsy, the next step may be further imaging, such as CT scans and (usually only for the higher Gleason Grades) a bone scan.

    There two major pieces of information a PCa workup provides:

    (1) The Gleason Grade. Cancer is graded on the Gleason scale in a biopsy. The Gleason Grades for cancer go from 6 to 10, where 6 is the "best" to have. While each lesion identified is graded separately, the biopsy grade is that of the highest (worst) lesion identified, because that goes a long way in determining whether treatment is needed.

    (2) Your husband's entire workup (history, PSA, biopsy, all imaging, etc.) will let your doc form an opinion as to the cancer's location, i.e., whether it (a) is currently confined to the prostate; (b) has grown locally out from the prostate, e.g. through the prostate capsule and/or into the seminal vesicle(s); (c) has locally invaded other organs, e.g., the bladder or bowel; (d) has metastasized to local (pelvic) lymph nodes; (e) has metastasized to other organs (bone, liver, lungs) and/or distant nodes. So you see this runs the gamut in seriousness.

    Note that a pre-treatment PSA of >20 is usually considered an added risk factor in one's post-treatment prognosis.

    Depending on the above, you can consult with surgeons and radiation oncologists to help you decide on your treatment. Depending on the outcome of the above workup, you may be told that either surgery or radiation has a slight advantage, but that does not mean you must choose that treatment -- treatment is a personal decision, and two men with identical situations can choose different treatments for different reasons. (In some cases a man may be advised why either surgery or radiation is not a good choice.)

    As difficult as it now seems, if you get a diagnosis of prostate cancer, stay calm! You will have time to digest the findings in the cancer workup, read up on treatments and treatment outcomes, and make a decision that works best for you.

    Make sure you both go to all visits, go with any questions prepared and written, and take notes. If you trust your memory, it will fail you -- when you and your doc start discussing a topic, you'll need to rely on your notes to get back on track so you cover everything you wanted.

    As you get answers to your initial questions, you'll have plenty of others! Please keep us posted, and all the best!

    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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    Old 08-23-2020, 11:32 AM   #15
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: New to This

    Quote:
    Originally Posted by guitarhillbilly View Post
    Please watch this video.

    https://www.*******.com/watch?v=Pya8N78bR7s

    These Videos are found on YT.
    Found it! Thank you

     
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    Reply Reply




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