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  • Not Getting Prognosis

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    Old 10-14-2020, 10:53 AM   #1
    JWPMP
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    Not Getting Prognosis

    Jim's cancer is a T4 tumor.
    It has invaded the anterior rectal wall.
    Also a couple of lymph nodes.
    And seminal vesical.
    Gleason score 5 + 4 = 9
    They say its inoperable.
    Will be referred to radiation oncologist.
    Also of course still waiting for PETscan
    We spoke with Dr Carroll's PA
    She gave us no indication if this is survivable or any type of prognosis.
    She said she just doesn't know.
    The RO will be better to tell us (Osama Mohammad)
    Wouldn't they have some idea by now?
    We are in the depths of despair.
    Feel like they have just given up on us.
    Now another two weeks for RO appointment.
    Maybe we made a mistake going to UCSF.

    Last edited by JWPMP; 10-14-2020 at 04:36 PM. Reason: additional info

     
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    Old 10-14-2020, 11:02 AM   #2
    IADT3since2000
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    Re: Not Getting Prognosis

    I'm sorry for your discouraging news, but be assured you are in good hands, and there is still a solid basis for a good outcome. It's understandable that a PA would defer to the doctor for a discussion at this point.

    I'll get back later.

    Jim

     
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    Old 10-14-2020, 11:58 AM   #3
    JWPMP
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by IADT3since2000 View Post
    I'm sorry for your discouraging news, but be assured you are in good hands, and there is still a solid basis for a good outcome. It's understandable that a PA would defer to the doctor for a discussion at this point.

    I'll get back later.

    Jim
    Thank you for the quick response Jim. Appreciate your vote of confidence in our choice of providers.
    So very lost right now.
    Feel like they've thrown in the towel and moved on to someone they can save.
    I mean he's got an aggressive cancer and now we've got two more weeks while it progresses. Seems like sense of urgency is gone.
    Should have asked how long he can survive without treatment if its too late now.
    Thanks for letting me vent.
    Paula

     
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    Old 10-14-2020, 12:00 PM   #4
    Michael F
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    Re: Not Getting Prognosis

    Hi JMWPMP! Very sorry to read about your challenging diagnosis. At this point, CURE is likely outside the realm of current reality. The clinical objectives now are to:

    - Reduce the total volume of PCa
    - Achieve control
    - Manage it moving forward.

    These objectives are very achievable!

    IMO, UCSF is a top tier institution. Urology Times lists UCSF as a PCa Clinical Center of Excellence. Dr Carroll is regarded as a top Urological Surgeon. He specializes in prostate cancer surgery. To that point, you are no longer a candidate for surgery. Therefore, you are being referred / transferred to the URO specialists who can & will best help you. They will be both Radiation Oncologists (RO) and Medical Oncologists (MO).

    You are at the start of a journey to live for many more years. There have been tremendous recent advances in the treatment and management of PCa and new breakthrough advances continue to evolve.

    The 1st immediate step is: Take the "despair" and toss it out the window. Despair is destructive. Instead, convert it to the positive thoughts, views and actions.

    Starting today, read up on metastatic prostate cancer, androgen deprivation therapy and radiation therapy. Start a list of questions to ask at your upcoming appointments. Be sure that both of you attend every MD consultation. Bring a pad of paper with your questions and write down the MDs answers and take notes.

    When convenient and if willing please include/create a "signature" with the salient info :

    - Age
    - PSA history
    - Was any genomic testing done on the biopsy samples?
    - What symptoms or issues lead to the diagnosis?

    Once treatment is underway, you will feel a positive sense of fighting PCa to achieve a good objective.

    You are not alone in this battle. As you know, we are here every step of the way. Several of your Forum Brothers & Sisters have completed the same journey. Keep us updated.

    Stay optimistic!

    Michael F
    __________________
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free =13%)
    Jan '12: Biopsy: 1/12 = G7 (3+4) & 5/12 = G6
    March '12: Robotic RP: Left: PM + EPE => Surgeon went back and excised additional adjacent tissues on Left side down to (-) Margins
    Pathology: Gleason (3+4) pT3a pNO pMX pRO c tertiary pattern 5 / Prostate Size = 32 grams / Tumor = Bilateral: 20% / PNI: present
    uPSA Range: 0.017 - 0.039 at 105 Months Post Op: Mean = 0.023 (n = 25)
    LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%) ED = present

     
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    Old 10-14-2020, 12:14 PM   #5
    JWPMP
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by Michael F View Post
    Hi JMWPMP! Very sorry to read about your challenging diagnosis. At this point, CURE is likely outside the realm of current reality. The clinical objectives now are to:

    - Reduce the total volume of PCa
    - Achieve control
    - Manage it moving forward.

    These objectives are very achievable!

    IMO, UCSF is a top tier institution. Urology Times lists UCSF as a PCa Clinical Center of Excellence. Dr Carroll is regarded as a top Urological Surgeon. He specializes in prostate cancer surgery. To that point, you are no longer a candidate for surgery. Therefore, you are being referred / transferred to the URO specialists who can & will best help you. They will be both Radiation Oncologists (RO) and Medical Oncologists (MO).

    You are at the start of a journey to live for many more years. There have been tremendous recent advances in the treatment and management of PCa and new breakthrough advances continue to evolve.

    The 1st immediate step is: Take the "despair" and toss it out the window. Despair is destructive. Instead, convert it to the positive thoughts, views and actions.

    Starting today, read up on metastatic prostate cancer, androgen deprivation therapy and radiation therapy. Start a list of questions to ask at your upcoming appointments. Be sure that both of you attend every MD consultation. Bring a pad of paper with your questions and write down the MDs answers and take notes.

    When convenient and if willing please share some additional info:

    - Age
    - PSA history
    - Was any genomic testing done on the biopsy samples?
    - What symptoms or issues lead to the diagnosis?

    Once treatment is underway, you will feel a positive sense of fighting PCa to achieve a good objective.

    You are not alone in this battle. We are here every step of the way. Several of your Forum Brothers & Sisters have completed the same journey. Keep us updated.

    Stay optimistic!

    Michael F
    Michael thank you so very much.
    I'm sobbing right now.
    Appreciate getting perspective...
    Thank you for hope that he may survive to see next year
    Paula

    Sorry forgot his stats

    Jim is 64
    First PSA test ever 7/14/2020 53.5
    Retest. 9/2020 66.3
    Routine visit to primary care provider.
    Absolutely no symptoms at all.
    MRI 9/18/2020 T4 tumor, anterior rectal wall invasion, 2 lymph nodes, left seminal vesicle
    Biopsy 10/02/2020 Gleason 5+4=9
    Not a candidate for surgery
    PSMA PET scan ordered
    Referred to RO Dr Osama Mohammad
    No genomic testing was mentioned but I will message the PA and ask.

    Last edited by JWPMP; 10-14-2020 at 02:02 PM. Reason: additional info

     
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    Old 10-14-2020, 02:19 PM   #6
    IADT3since2000
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by JWPMP View Post
    ... Thank you for hope that he may survive to see next year
    Paula
    ...
    Hi again Paula and Jim,

    Your reaction and despair reminds me of 2013 shortly after I had completed radiation; I hope our story may help you. My wife felt really odd on a Friday. We considered a stroke, but she did not have symptoms that we recognized. By Monday we both thought she needed to see her doctor. He thought a stroke unlikely but sent her for an MRI. Like your PA, the radiology technician wouldn’t give us her impression, but, formerly cheerful and businesslike, she was holding back tears when she brought my wife back to the waiting room. On our way home my wife and I were both crying (first time that I can remember for myself since childhood). We were convinced she must have a serious brain tumor. We called the doctor when we got home, explained that we were going out of our minds with worry, and asked if he and the radiologist could give the scan a quick look and let us know. Like you, we were in the depths of despair. Well, it turned out late that afternoon that what she had was “just” a stroke, not minor, but not major either. We are still dealing with it, but my wife just prepared our next two dinners, we have enjoyable moments each day, and we are doing okay seven years later.

    What you are dealing with is challenging, a “high-risk” case with local spread. That’s scary, but I suspect at UCSF the MRI may have included a more general body scan. Even if not, that PSMA PET scan has an excellent chance of spotting any metastatic spots. What you need to know is that the prognosis at the ten and fifteen year points for men with regional spread, such as to a couple of lymph nodes and to the rectum, is just about as good as for men with much milder cases. I'm thinking it's close to 100% at ten years and in the mid-90%s at fifteen years, with many of us living a lot of years beyond that. That favorable prognosis applies even to challenging GS9 cases with local spread but no or limited distant spread, at least that's my impression; I hope I am not overstating the favorable odds. Prognosis would be a good question for the radiation oncologist after the PSMA PET scan.

    When I first learned my own first ever PSA (113.6), also feeling perfectly healthy and with no symptoms, I too felt I had just months to live, and I wasn’t even thinking of a cure. Now it is nearly 21 years later, and the odds are strong that I have actually been cured, though continued regular monitoring for the rest of my life is essential. The cases that really shorten life, at least based on recent assessment and treatment technology, typically show distant spread, often widespread distant spread. Even for those men, there has been some progress, and there is a good basis for hope of substantial improvement in coming years as new technologies come online.

    There is a fairly good chance that your husband will not be cured, but that does not mean you both will be deprived of a quality life. It may be that your goal will be to turn the disease into a "chronic" but not "deadly" threat that you will outlive. That’s what my wife and I were doing for more than a decade, believing that a cure was out of the question. But there is a favorable “on the other hand.”


    Actually, there is also a fairly good chance of a cure, in my layman’s opinion. Just because a prostate cancer is “inoperable,” meaning that there is not a good chance that surgery will cure the cancer, that doesn’t mean that radiation and drugs are also limited. This is a situation made for radiation, and UCSF has some of the best expertise for prostate cancer radiation in the world! Radiation can deal with all of the locations where cancer is now seen for you with a good shot at wiping it out. For the rectal wall, that means that both cancerous and healthy wall cells will receive radiation, but the healthy cells may be able to recover, as I understand it as a layman. This would be an excellent question for the radiation oncologist. I'm thinking that rather than "throw[ing] in the towel and mov[ing] on to someone they can save," UCSF has just shifted gears based on what they now know about the case. Believe me, they are very used to making these shifts and achieving good results much of the time.

    Did you get to see the presentation by UCSF radiation oncologist Dr. Mack Roach, MD, at last month’s 2020 Prostate Cancer Conference? It is available for viewing for free at pcri.org, under the conference tab, under the 2020 conference tab, Day 2. He is one of the foremost radiation oncologists specializing in prostate cancer in the world, and he has been a pioneer in a number of areas involving prostate cancer radiation. If you view his presentation and have questions, I or others here may be able to answer them.

    Also, you need to keep in mind that technology is improving at a rapid pace for prostate cancer. What is not possible now in 2020 may be possible in the near future. A great many of us, including me, are now either alive or in much better shape than we would have been, thanks to great advances over the past three decades that occurred in years after we were diagnosed.

    Keep your spirits up!

    ….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 10-14-2020, 03:00 PM   #7
    Southsider170
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by JWPMP View Post
    Maybe we made a mistake going to UCSF.

    No, its a smart idea to be at UCSF. Your husband has a challenging diagnosis, but its nothing that they haven't seen there and they have the top doctors and top equipment there.

    Its not time to panic and its not time to despair. New treatments and strategies to deal with PC are being developed all the time.

     
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    Old 10-14-2020, 05:21 PM   #8
    JWPMP
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    Join Date: Jul 2020
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    Re: Not Getting Prognosis

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

    Your reaction and despair reminds me of 2013 shortly after I had completed radiation; I hope our story may help you. My wife felt really odd on a Friday. We considered a stroke, but she did not have symptoms that we recognized. By Monday we both thought she needed to see her doctor. He thought a stroke unlikely but sent her for an MRI. Like your PA, the radiology technician wouldn’t give us her impression, but, formerly cheerful and businesslike, she was holding back tears when she brought my wife back to the waiting room. On our way home my wife and I were both crying (first time that I can remember for myself since childhood). We were convinced she must have a serious brain tumor. We called the doctor when we got home, explained that we were going out of our minds with worry, and asked if he and the radiologist could give the scan a quick look and let us know. Like you, we were in the depths of despair. Well, it turned out late that afternoon that what she had was “just” a stroke, not minor, but not major either. We are still dealing with it, but my wife just prepared our next two dinners, we have enjoyable moments each day, and we are doing okay seven years later.

    What you are dealing with is challenging, a “high-risk” case with local spread. That’s scary, but I suspect at UCSF the MRI may have included a more general body scan. Even if not, that PSMA PET scan has an excellent chance of spotting any metastatic spots. What you need to know is that the prognosis at the ten and fifteen year points for men with regional spread, such as to a couple of lymph nodes and to the rectum, is just about as good as for men with much milder cases. I'm thinking it's close to 100% at ten years and in the mid-90%s at fifteen years, with many of us living a lot of years beyond that. That favorable prognosis applies even to challenging GS9 cases with local spread but no or limited distant spread, at least that's my impression; I hope I am not overstating the favorable odds. Prognosis would be a good question for the radiation oncologist after the PSMA PET scan.

    When I first learned my own first ever PSA (113.6), also feeling perfectly healthy and with no symptoms, I too felt I had just months to live, and I wasn’t even thinking of a cure. Now it is nearly 21 years later, and the odds are strong that I have actually been cured, though continued regular monitoring for the rest of my life is essential. The cases that really shorten life, at least based on recent assessment and treatment technology, typically show distant spread, often widespread distant spread. Even for those men, there has been some progress, and there is a good basis for hope of substantial improvement in coming years as new technologies come online.

    There is a fairly good chance that your husband will not be cured, but that does not mean you both will be deprived of a quality life. It may be that your goal will be to turn the disease into a "chronic" but not "deadly" threat that you will outlive. That’s what my wife and I were doing for more than a decade, believing that a cure was out of the question. But there is a favorable “on the other hand.”


    Actually, there is also a fairly good chance of a cure, in my layman’s opinion. Just because a prostate cancer is “inoperable,” meaning that there is not a good chance that surgery will cure the cancer, that doesn’t mean that radiation and drugs are also limited. This is a situation made for radiation, and UCSF has some of the best expertise for prostate cancer radiation in the world! Radiation can deal with all of the locations where cancer is now seen for you with a good shot at wiping it out. For the rectal wall, that means that both cancerous and healthy wall cells will receive radiation, but the healthy cells may be able to recover, as I understand it as a layman. This would be an excellent question for the radiation oncologist. I'm thinking that rather than "throw[ing] in the towel and mov[ing] on to someone they can save," UCSF has just shifted gears based on what they now know about the case. Believe me, they are very used to making these shifts and achieving good results much of the time.

    Did you get to see the presentation by UCSF radiation oncologist Dr. Mack Roach, MD, at last month’s 2020 Prostate Cancer Conference? It is available for viewing for free at pcri.org, under the conference tab, under the 2020 conference tab, Day 2. He is one of the foremost radiation oncologists specializing in prostate cancer in the world, and he has been a pioneer in a number of areas involving prostate cancer radiation. If you view his presentation and have questions, I or others here may be able to answer them.

    Also, you need to keep in mind that technology is improving at a rapid pace for prostate cancer. What is not possible now in 2020 may be possible in the near future. A great many of us, including me, are now either alive or in much better shape than we would have been, thanks to great advances over the past three decades that occurred in years after we were diagnosed.

    Keep your spirits up!

    ….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.
    What an incredible journey you and your wife have been on! So glad to hear she is doing okay and your able to enjoy your days.
    And your prostate cancer battle is nothing short of phenomenal.
    I will find that video of Dr Roach this evening.

    I'm terrified, but feeling much less hopeless than earlier today.
    Trying to outguess the medical profession while letting the imagination run wild is not productive as I found out today.
    Very much appreciate the reality check.
    We were just dumbfounded that this woman, although being very nice, had no information to offer and did not explain anything other than the Gleason score. She did ask if we had questions, but the only one was if this is survivable and she didn't know, she couldn't even tell us as much as you did. Not a confidence in your medical team builder.... Our first conversation with Dr Carroll was very encouraging, but not getting to speak with him personally since has been discouraging.. Being told you have an inoperable, T4 tumor that is very aggressive, your PET scan still isn't scheduled so more waiting, and we'll refer you to RO who can tell you more, and you have to wait a couple more weeks again, was just too much. Especially when we were expecting some outline of a treatment plan.
    So deep breath. Can't have both of us panicking. Jim looks like a zombie and said that alls he's gotten all these months is false hope and thats worse.
    Thank you again so much
    Paula

    Last edited by JWPMP; 10-14-2020 at 05:26 PM. Reason: correct a word

     
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    Old 10-15-2020, 06:19 AM   #9
    JWPMP
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by Southsider170 View Post
    No, its a smart idea to be at UCSF. Your husband has a challenging diagnosis, but its nothing that they haven't seen there and they have the top doctors and top equipment there.

    Its not time to panic and its not time to despair. New treatments and strategies to deal with PC are being developed all the time.
    Thank you.
    Jim is unhappy with UCSF right now, having another delay in treatment on an aggressive cancer. I actually think he's more disappointed with the PA as she is hurried and no explanation or context. Have gotten much much more information from this forum.
    Anyway, I'm sure it will be worth it once treatment commences.
    Appreciate your input
    Paula

     
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    Old 10-15-2020, 06:51 AM   #10
    Steve135
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    Re: Not Getting Prognosis

    JWPMP, while I don't post much on this new PCa site I do read all the post and will chime in from time to time.
    The above post should be so helpful to you and Jim. Its been the worst thing to have been dealt. This PCa has been there many many years, and when we find out we want it gone! We have all gone through what your going through just at different levels! Nothing ever seems to move fast enought when your waiting. I've had PCa for just over 5 years so many things have changed so much for the better. So far my PCa has had a BCR every two years, 2017,2019 and you know 2021 is around the corner? The first notice was devistating to us the second even more! The third time WTH and who's care's who do I see next for treatments. Try and keep busy it really helps!

    _________________
    Diag. 56 DOB 2/59 PSA Base 1.5 01/14 2.0 6/15 2.4
    Biopsy 6/15 5 Gleason Score 8
    RP 10/15 Path 54g 5x4.2x2.8cm 4+3=7 Tumor location quadrants Bilateral
    Extra-capsular extensions present,SV no invasion
    Vascular invasion none, PNI ,Multicentricity multifocal
    Margins No tPresent inked margins 5 neg pT3a,N0
    PSA 10/16 <0.1 02/7/17 1st BCR 0.4 02/15/17 0.5
    Pet Scan 2/17 Neg PSA 03/17 0.6 Axumin trial 17.4mm tumor rt. SVB Casodex + Trelstar
    04/17 SRT (42) to include location of tumor
    08/17 PSA 0.1 Last 6 uPSA 0.006 uPSA 2/19 0.030 2nd BCR 5/19 0.235 5/30 0.32 6/19 0.34
    7/19 0.06 8/19 0.08 9/19 0.05610/190 0.08 11/19 0.07 12/19 0.07
    7/19 Trelstar, Xtandi, Zoledronic Acid
    12/19 (3) SBRT Iliac bone liasion post SBRT 1/ 20 0.06 2/20 0.04 3/20 0.02 4/20 <.02 5/20 <0.02 6/20 <.02 7/20 <0.014 8/20 <0.014 9/20 <0.014

     
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    Old 10-15-2020, 02:22 PM   #11
    JWPMP
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by Steve135 View Post
    JWPMP, while I don't post much on this new PCa site I do read all the post and will chime in from time to time.
    The above post should be so helpful to you and Jim. Its been the worst thing to have been dealt. This PCa has been there many many years, and when we find out we want it gone! We have all gone through what your going through just at different levels! Nothing ever seems to move fast enought when your waiting. I've had PCa for just over 5 years so many things have changed so much for the better. So far my PCa has had a BCR every two years, 2017,2019 and you know 2021 is around the corner? The first notice was devistating to us the second even more! The third time WTH and who's care's who do I see next for treatments. Try and keep busy it really helps!

    _________________
    Diag. 56 DOB 2/59 PSA Base 1.5 01/14 2.0 6/15 2.4
    Biopsy 6/15 5 Gleason Score 8
    RP 10/15 Path 54g 5x4.2x2.8cm 4+3=7 Tumor location quadrants Bilateral
    Extra-capsular extensions present,SV no invasion
    Vascular invasion none, PNI ,Multicentricity multifocal
    Margins No tPresent inked margins 5 neg pT3a,N0
    PSA 10/16 <0.1 02/7/17 1st BCR 0.4 02/15/17 0.5
    Pet Scan 2/17 Neg PSA 03/17 0.6 Axumin trial 17.4mm tumor rt. SVB Casodex + Trelstar
    04/17 SRT (42) to include location of tumor
    08/17 PSA 0.1 Last 6 uPSA 0.006 uPSA 2/19 0.030 2nd BCR 5/19 0.235 5/30 0.32 6/19 0.34
    7/19 0.06 8/19 0.08 9/19 0.05610/190 0.08 11/19 0.07 12/19 0.07
    7/19 Trelstar, Xtandi, Zoledronic Acid
    12/19 (3) SBRT Iliac bone liasion post SBRT 1/ 20 0.06 2/20 0.04 3/20 0.02 4/20 <.02 5/20 <0.02 6/20 <.02 7/20 <0.014 8/20 <0.014 9/20 <0.014
    Thank you Steve for taking the time to comment...really appreciated.
    What a roller coaster you've been living! So impressed with your positive spin on things.
    Thank you for sharing whats possible
    Paula

     
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    Old 10-15-2020, 02:25 PM   #12
    JWPMP
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    Re: Not Getting Prognosis

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

    Your reaction and despair reminds me of 2013 shortly after I had completed radiation; I hope our story may help you. My wife felt really odd on a Friday. We considered a stroke, but she did not have symptoms that we recognized. By Monday we both thought she needed to see her doctor. He thought a stroke unlikely but sent her for an MRI. Like your PA, the radiology technician wouldn’t give us her impression, but, formerly cheerful and businesslike, she was holding back tears when she brought my wife back to the waiting room. On our way home my wife and I were both crying (first time that I can remember for myself since childhood). We were convinced she must have a serious brain tumor. We called the doctor when we got home, explained that we were going out of our minds with worry, and asked if he and the radiologist could give the scan a quick look and let us know. Like you, we were in the depths of despair. Well, it turned out late that afternoon that what she had was “just” a stroke, not minor, but not major either. We are still dealing with it, but my wife just prepared our next two dinners, we have enjoyable moments each day, and we are doing okay seven years later.

    What you are dealing with is challenging, a “high-risk” case with local spread. That’s scary, but I suspect at UCSF the MRI may have included a more general body scan. Even if not, that PSMA PET scan has an excellent chance of spotting any metastatic spots. What you need to know is that the prognosis at the ten and fifteen year points for men with regional spread, such as to a couple of lymph nodes and to the rectum, is just about as good as for men with much milder cases. I'm thinking it's close to 100% at ten years and in the mid-90%s at fifteen years, with many of us living a lot of years beyond that. That favorable prognosis applies even to challenging GS9 cases with local spread but no or limited distant spread, at least that's my impression; I hope I am not overstating the favorable odds. Prognosis would be a good question for the radiation oncologist after the PSMA PET scan.

    When I first learned my own first ever PSA (113.6), also feeling perfectly healthy and with no symptoms, I too felt I had just months to live, and I wasn’t even thinking of a cure. Now it is nearly 21 years later, and the odds are strong that I have actually been cured, though continued regular monitoring for the rest of my life is essential. The cases that really shorten life, at least based on recent assessment and treatment technology, typically show distant spread, often widespread distant spread. Even for those men, there has been some progress, and there is a good basis for hope of substantial improvement in coming years as new technologies come online.

    There is a fairly good chance that your husband will not be cured, but that does not mean you both will be deprived of a quality life. It may be that your goal will be to turn the disease into a "chronic" but not "deadly" threat that you will outlive. That’s what my wife and I were doing for more than a decade, believing that a cure was out of the question. But there is a favorable “on the other hand.”


    Actually, there is also a fairly good chance of a cure, in my layman’s opinion. Just because a prostate cancer is “inoperable,” meaning that there is not a good chance that surgery will cure the cancer, that doesn’t mean that radiation and drugs are also limited. This is a situation made for radiation, and UCSF has some of the best expertise for prostate cancer radiation in the world! Radiation can deal with all of the locations where cancer is now seen for you with a good shot at wiping it out. For the rectal wall, that means that both cancerous and healthy wall cells will receive radiation, but the healthy cells may be able to recover, as I understand it as a layman. This would be an excellent question for the radiation oncologist. I'm thinking that rather than "throw[ing] in the towel and mov[ing] on to someone they can save," UCSF has just shifted gears based on what they now know about the case. Believe me, they are very used to making these shifts and achieving good results much of the time.

    Did you get to see the presentation by UCSF radiation oncologist Dr. Mack Roach, MD, at last month’s 2020 Prostate Cancer Conference? It is available for viewing for free at pcri.org, under the conference tab, under the 2020 conference tab, Day 2. He is one of the foremost radiation oncologists specializing in prostate cancer in the world, and he has been a pioneer in a number of areas involving prostate cancer radiation. If you view his presentation and have questions, I or others here may be able to answer them.

    Also, you need to keep in mind that technology is improving at a rapid pace for prostate cancer. What is not possible now in 2020 may be possible in the near future. A great many of us, including me, are now either alive or in much better shape than we would have been, thanks to great advances over the past three decades that occurred in years after we were diagnosed.

    Keep your spirits up!

    ….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.
    Hi Again
    I feel in my self absorbed pity yesterday that I did not properly acknowledge all the information you took the time to share with us.
    It's truly truly appreciated.
    I didnt get a chance to watch that presentation last night, but will make it a point to this evening.
    Thank you again
    Paula

     
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    Old 10-15-2020, 02:30 PM   #13
    JWPMP
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by Southsider170 View Post
    No, its a smart idea to be at UCSF. Your husband has a challenging diagnosis, but its nothing that they haven't seen there and they have the top doctors and top equipment there.

    Its not time to panic and its not time to despair. New treatments and strategies to deal with PC are being developed all the time.
    Hello again Ss170
    I also didn't properly express my appreciation for your input yesterday, because i was in a useless state of panicked despair.
    I'm certain my husband isn't unique and they absolutely know what they're doing at UCSF.
    And besides, whats going to be any better in "Modesto CA".... same wait with sub par care.
    Anyway, thank you again.
    Paula

     
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    Old 10-15-2020, 08:19 PM   #14
    JWPMP
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    Re: Not Getting Prognosis

    Quote:
    Originally Posted by Michael F View Post
    Hi JMWPMP! Very sorry to read about your challenging diagnosis. At this point, CURE is likely outside the realm of current reality. The clinical objectives now are to:

    - Reduce the total volume of PCa
    - Achieve control
    - Manage it moving forward.

    These objectives are very achievable!

    IMO, UCSF is a top tier institution. Urology Times lists UCSF as a PCa Clinical Center of Excellence. Dr Carroll is regarded as a top Urological Surgeon. He specializes in prostate cancer surgery. To that point, you are no longer a candidate for surgery. Therefore, you are being referred / transferred to the URO specialists who can & will best help you. They will be both Radiation Oncologists (RO) and Medical Oncologists (MO).

    You are at the start of a journey to live for many more years. There have been tremendous recent advances in the treatment and management of PCa and new breakthrough advances continue to evolve.

    The 1st immediate step is: Take the "despair" and toss it out the window. Despair is destructive. Instead, convert it to the positive thoughts, views and actions.

    Starting today, read up on metastatic prostate cancer, androgen deprivation therapy and radiation therapy. Start a list of questions to ask at your upcoming appointments. Be sure that both of you attend every MD consultation. Bring a pad of paper with your questions and write down the MDs answers and take notes.

    When convenient and if willing please include/create a "signature" with the salient info :

    - Age
    - PSA history
    - Was any genomic testing done on the biopsy samples?
    - What symptoms or issues lead to the diagnosis?

    Once treatment is underway, you will feel a positive sense of fighting PCa to achieve a good objective.

    You are not alone in this battle. As you know, we are here every step of the way. Several of your Forum Brothers & Sisters have completed the same journey. Keep us updated.

    Stay optimistic!

    Michael F
    Well it all makes sense now.
    Exactly what you said is happening.
    We have a video appointment with the Radiation Oncologist TOMORROW and the Medical Oncologist on the 26th.
    Actually the MO wanted to conference on Monday the 19th, but have to wait for PET scan, which has not been scheduled yet.
    I thought that Dr Carroll managed our case, but now I understand the whole picture.
    I read what you wrote, but it didn't get through to my brain.
    So things are starting to roll and I totally misjudged the UCSF experience.
    Thank you again
    Paula

     
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    IADT3since2000 (10-16-2020)
    Old 10-16-2020, 06:00 AM   #15
    IADT3since2000
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    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: Not Getting Prognosis

    Quote:
    Originally Posted by JWPMP View Post
    ... We have a video appointment with the Radiation Oncologist TOMORROW and the Medical Oncologist on the 26th.
    Actually the MO wanted to conference on Monday the 19th, but have to wait for PET scan, which has not been scheduled yet.... Paula
    As radiation is in the future, combined with ADT, ask the RO about whether he advises taking metformin, the old, tried-and-true, cheap drug for diabetes that has proven helpful for a number of cancers in recent years. Definitive trials for prostate cancer are ongoing but not yet complete, so there is no conclusive answer. But there is some encouraging information from studies that men on metformin not only do substantially better with radiation but also that it helps eliminate or decrease some of the side effects from ADT, so you get a twofer.

    Here are a couple key references you could check out on pubmed at www.pubmed.gov:

    https://pubmed.ncbi.nlm.nih.gov/23287698/ On radiatiation

    https://pubmed.ncbi.nlm.nih.gov/21933330/ On lifestyle and metformin for ADT

    In addition to the abstracts, both have links to complete papers.

    Good luck with the RO today.

    ….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; 10-16-2020 at 06:02 AM. Reason: typo

     
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