It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Prostate Message Board

  • Prognosis for Prostate Cancer Patients Diagnosed with Numerous Distant Metastases

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 02-07-2021, 12:55 PM   #1
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,867
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Lightbulb Prognosis for Prostate Cancer Patients Diagnosed with Numerous Distant Metastases

    For most prostate cancer patients, prognosis for the vast majority of those patients needing treatment – basically those with “intermediate-risk” or most “high-risk” cases - has improved greatly over the past two decades. Indeed, for ALL types of patients averaged together, survival at the 10 year point compared to age-matched fellow males without prostate cancer is nearly 100% and is in the mid-90 percents even at 15 years! Survival has even improved substantially for many patients diagnosed with just a few distant metastases (“oligometastatic” - meaning “few metastases”) - prostate cancer).


    However, survival for one group at five years from diagnosis has been poor: those patients with numerous distant metastasis found as they are being diagnosed and assessed; these are the patients who, though a small portion of all patients, pull the average survival down from nearly 100%. Fortunately, in large part due to widespread use of PSA screening in the United States, there has been a sharp reduction in the proportion of such patients, and even for them there is a measure of encouraging news, covered below.


    But before getting to the figures for those patients, it’s very important to put the 5 year survival figures in perspective, not just to take them at face value. First, in order to get five year survival numbers, the patients whose histories went into those numbers must have been diagnosed five years earlier than the present year, and even longer if a grouping with an average for several years is used (such as patients diagnosed from 2010 to 2016, considered as a group). That means that when we are looking at survival statistics for survival to the five year point since diagnosis, we are looking in a rear view mirror that tells us where average survival has been, but that mirror may no longer be that reliable an indicator of where average survival is now, and an even less reliable indicator of where we will be five years from now! This is especially true for prostate cancer where great strides forward have been made in each decade and where substantial advances are occurring every year! Arguably, more and more rapid progress has been and is being made for prostate cancer than for any other cancer!


    My own story makes the point, so please join me in taking a quick look at my situation before looking at the latest survival statistics. I was diagnosed in December 1999 and had scans through the next month. Based on that information, two respected urologists from two highly regarded centers for cancer treatment – The City of Hope in California and Johns Hopkins in Baltimore - at my request each gave me the same prognosis: five years to live, including three fairly good years and two declining years. When I heard the second doctor confirm what the first had told me, I figured they were both reading from the same sheet of music and that the overall medical community agreed with them. I actually found their forecasts reassuring as until that time I figured I had just months to live.


    Now obviously the prognosis was wrong as I am sitting here in 2021, not only surviving prostate cancer but probably cured, and in remarkably good shape as a 77 year old. So why were these two good doctors so far off? One reason is that the doctors were basing their forecasts on medical research statistics. Back in late 1999, these doctors had five year survival data from patients diagnosed in 1994, the year the FDA approved the FDA test for screening. That meant that a great many patients had many distant metastases at the time they were diagnosed as PSA screening was not yet widespread, and that translated to poorer survival statistics for prostate cancer patients overall; moreover, I was thought to have widespread metastases, even if not reflected in CT and technetium bone scan imaging, and doctors knew that patients with widespread metastases had a much inferior shot at five year survival. So as I said, there was a rear view mirror influence, just as there is today and always will be: it’s impossible in 2021 to have five year survival statistics now for patients just diagnosed in 2021.


    Another reason the doctors were off is that they were both urologists, even though very good ones at major institutions known for their expertise in treating prostate cancer. After all, the vast majority of us prostate cancer patients first work with urologists to be diagnosed and do initial planning. While I’m sure those two doctors I consulted worked to keep their knowledge current, they were mostly focused on surgery, which is what urologists do, rather than on radiation, which back then left a lot to be desired, or more to the point, drugs, which were considered to work but only for a quite limited time. Androgen deprivation therapy (ADT, aka hormonal therapy) drugs were standard for patients like me who were not considered viable candidates for surgery, and there was a widespread myth among doctors that ADT would only work for a short time, usually stated as from 18 months to 3 years, after which chemo for a year or two would keep the patient alive. That myth was based on a misunderstanding of earlier research – clear when pointed out, but obviously not appreciated by many doctors. Hence, say 3 years on ADT plus 2 years on chemo after that yielded a total prognosis of just 5 years.

    Fortunately, another type of doctor, specifically “medical oncologists” with large practices dedicated to prostate cancer, were coming to understand that ADT drugs typically worked far longer if patients did not have detectable widespread metastases, and fortunately for me, I began to communicate and consult these doctors. So why is my personal history lesson important to today’s patients diagnosed with numerous distant metastases? It’s because the doctors they need to see, the ones capable of understanding available drug treatment and other technologies for patients with well advanced prostate cancer, are medical oncologists, especially ones with a lot of experience with advanced prostate cancer, and not urologists. (Radiation oncologists also should often be involved.) Medical oncologists are in a much better position to see and interpret the important details of cases of patients with advanced prostate cancer, and they can give much more individualized prognoses.


    So what does that rear view mirror of medical research statistics tell us for patients diagnosed in 2021: it tells us that the group of patients made up of men who are diagnosed with widespread distant metastases have a chance of surviving prostate cancer to the five year point, based on technology widely used in the past five years, of just 30% according to the latest figures published by the American Cancer Society (ACS). (https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/survival-rates.html - for men diagnosed between 2010 and 2016). Moreover, that 30% figure for five year survival has been remarkably stable for years.


    That said, starting about 2010 a slew of new drugs that showed promise for patients with advanced prostate cancer were approved, and that progress is continuing! Moreover, great advances in complementary technologies, particularly in very sensitive and precise imaging and also in genetic testing, work together with the advances in drugs and “know how” for putting all of this to use. What this means is that the patients behind the ACS data showing 30% survival to 5 years (which means the cut off for their diagnosis would have been 2016) were likely not enjoying the benefits of those drugs for much of this period, and patients diagnosed in 2021 should do considerably better than those for whom we have survival history through at least five years in the historical statistics.


    So what are the prognosis odds for surviving to five years for a patient just diagnosed with numerous distant metastases? My view is that it is really impossible to answer that question. We can see that the odds are poor enough that it is wise for a patient and his loved ones to make preparations for his possible passing on, which could happen well before five years.


    On the other hand, it is a time for realistic hope, and also a time not for depression and resignation but for doing what is feasible to increase those survival odds!


    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible
    .

    Last edited by IADT3since2000; 02-08-2021 at 05:29 AM. Reason: Typos. "advanced cancer" to "advanced prostate cancer"

     
    Reply With Quote
    The Following 4 Users Say Thank You to IADT3since2000 For This Useful Post:
    aleaddict (02-07-2021),Hiker2020 (02-07-2021),Jimmy524 (02-08-2021),Kponis (02-07-2021)
    Sponsors Lightbulb
       
    Old 02-07-2021, 01:31 PM   #2
    Hiker2020
    Junior Member
    (male)
     
    Join Date: Oct 2020
    Location: Washington
    Posts: 16
    Hiker2020 HB User
    Re: Prognosis for Prostate Cancer Patients Diagnosed with Numerous Distant Metastases

    Great information. Thank you.
    __________________
    PSA results: 9/16-12.73;11/16-13.26; 7/17-14.97; 1/18-14.08; 4/18-13.94; 7/18-17.61; 10/18-16.29; 2/19-17.09; 4/19-17.84; 6/19-17.81; 10/19-16.24; 1/20-23.14;3/20-19.41; 5/20-17.66; 7/20-20.86; 12/2-0.1
    Biopsy results: 10/17-Gleason 3+3=6- Group 1; 11/18-Gleason 3+3=6- Group 1; 11/19-Gleason 3+3=6- Group 1 Increases in PSA even with no change in biopsy results indicated the need to begin treatment. Decided on IMRT.
    Lupron injection #1: 7/20; Markers and spacer placed 8/20; Lupron injection #2 10/20
    Radiation treatment began 9/15 and ended 11/06: 39 sessions at 200cGY per session
    Side effects of radiation general fatigue and painful frequent urination treated successfully with Flomax. Stopped using Flomax after 2 months due to it causing a severe dry cough. A cough is a listed side effect. Switched to saw palmetto with no decrease in effectiveness. All in all not a bad marathon to run.

     
    Reply With Quote
    The following user gives a hug of support to Hiker2020:
    IADT3since2000 (02-08-2021)
    Reply Reply




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 08:16 PM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!