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  • PC back: what to expect

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    Old 09-15-2021, 05:09 AM   #1
    cricket2591
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    PC back: what to expect

    15 yrs ago G8,RP surgery, then Lupron/radiation. Undetectable for 15 years. Had my Dr. do a PSA test and showed up .09 then 3 months later .2. Dr. made me an appointment with Urology. 15 yrs ago double rate was 10 months. Hoping maybe new therapies are available. My hospital offers the Axumin scan now but maybe .2 would not show up on a scan. Can someone tell me what to expect for treatment options. I'm 70 and am hoping I can make 75 with this PC. Remember there was a paper from John Hopkins several yrs ago that suggested PC that has recurred after 10 yrs was more easily treatable? Maybe too optimistic?

    Thank you
    Dave

     
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    Old 09-16-2021, 05:33 AM   #2
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    Re: PC back: what to expect

    Hi Dave and welcome to the Board!

    Congratulations on doing so well for so long with a Gleason 8 cancer that was first treated with surgery!

    There has been huge progress, though still no guarantees; we are getting closer.

    Do you know about what is called "oligometastatic" prostate cancer? That is cancer where there is just one or a few metastatic spots in key places, and there has been a lot of research on it over the past decade. The idea is to find those spots with imaging and then wipe them out with either spot radiation or surgery before they get a chance to spread widely. Research has shown that most men who recur will have just a few spots before the cancer becomes widespread. One of the experts in this technology and treatment is Dr. Eugene Kwon, MD, who spoke last weekend at the recorded conference on prostate cancer sponsored by the Prostate Cancer Research Institute. I was not able to hear that talk, but am looking forward to viewing it at pcri.org under the conferences tab.

    There are also powerful drugs that have come on the scene since you were treated.

    I'm thinking you will breeze past 75.

    Take care,

    .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, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 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 09-16-2021, 09:15 AM   #3
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    Re: PC back: what to expect

    Recurrence: Mild or Serious

    I think the Johns Hopkins work you are referring to is the study led by Dr. Stephen Freedland and colleagues, published in the Journal of Clinical Oncology in 2007 with the dark title "Death in patients with recurrent prostate cancer after radical prostatectomy: prostate-specific antigen doubling time subgroups and their associated contributions to all-cause mortality", with an abstract available at https://pubmed.ncbi.nlm.nih.gov/17470867/ . The key points in the abstract are on the gloomy side, but a look at the complete paper is much more encouraging.

    Essentially, they looked at a group I consider grossly under treated - those who did not get ADT in a timely fashion, which unfortunately was the practice of some prominent doctors at Johns Hopkins back then (and may still be so today based on a recent paper, though other doctors at Johns Hopkins do believe in timely ADT). The benefit of looking at this group is that the researchers got kind of a pure look at how recurring patients did with no more than salvage radiation, which was far from universal. They found that three factors made the key difference in length of survival: the PSA doubling time (four time bins, with yours perhaps being in the 3.0 to 8.9 month bin based on your early data so far), whether the occurrence occurred (hitting a PSA of .2) within (not good) or beyond (good) 3 years from surgery, and whether the pathological Gleason was 8 or above (not good) or below 8 (good).

    For you, as I understand your case as a non-health professional with no enrolled medical education, you have odds of surviving at 15 years, in other words, now, of 94%. That's really good and suggests you have quite a bit of life left before prostate cancer gets you, if it ever does. (I don't believe statistics beyond 15 years are available.) If you had not done so well for so long in avoiding recurrence, your odds would have beeen 1% survival at this point, but bearing the following point in mind.

    Keep in mind that this is history, base on men whose cases were handled with knowledge available at Johns Hopkins, as I said not a citadel of ADT, back in the period 1982-2000, long before most of the slew of amazing advances in drugs, imaging, genetic testing, radiation, etc. that happened roughly around 2010 and continuing through the present.

    I hope this is encouraging.

    .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, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 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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