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



Cancer: Prostate Message Board

  • RO Call

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 10-23-2020, 02:54 PM   #16
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: RO Call

    Quote:
    Originally Posted by IADT3since2000 View Post
    I too believe that denial is typical, but it is not universal. I know that because I was not in denial myself, and I have talked with others whom I believe did not experience denial. I recognized the seriousness of the threat right from the start, and I recognized that I had neglected medical appointments that would have given me a better shot at a successful outcome. I was at peace with that and am comfortable with the fact that I had and have imperfections.

    That said, I've interacted with many men who clearly were in denial about both the seriousness of their cases, the importance of putting certain medical and lifestyle tactics to work, and their own role in setting themselves up for more serious cases.

    ….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.
    I can say with certainty that Jim is not in denial. I'm not sure if his previous experience with cancer rushed him through that stage or not. He is more angry and anxious, and definitely grieving.
    I myself may be in some degree of denial. I just can't fathom that this "curable treatable" disease could have gotten this out of hand with no warning or symptoms. Just cant wrap my mind around it.
    I'm stuck in worry...
    Thanks all for addressing the psychological aspect of this disease
    P

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 10-23-2020, 06:07 PM   #17
    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: RO Call

    Quote:
    Originally Posted by JWPMP View Post
    I just can't fathom that this "curable treatable" disease could have gotten this out of hand with no warning or symptoms. Just cant wrap my mind around it.
    I'm stuck in worry...
    Thanks all for addressing the psychological aspect of this disease
    P
    Like many other cancers, PCa typically has no symptoms early on. There are only medical signs: sometimes an abnormal DRE and, usually, an increased PSA. Neither is diagnostic. Half of the nodules felt are benign, and PCa is only one condition that can raise PSA.

    PSA is unjustly criticized as being non-specific. That misses the point. We are very fortunate that we do have PSA, because an abnormally high PSA can be investigated. Not all PCa can be identified immediately: it may take repeat investigations over time. But if you continue to investigate, you will find PCa if it exists. In the near future we'll have much better blood or urine tests to find significant PCa, but for now PSA is the key.

    Conversely, if you neglect an above normal PSA, you risk having PCa discovered only after it has become metastatic and presents symptoms. You've arrived late for the war.

    This situation persists today. Patient education can certainly help, but I put the responsibility on primary care docs who either fail to screen or who minimize PSA rise to their patients rather than refer them to a urologist.

    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.)

     
    Reply With Quote
    Old 10-23-2020, 08:26 PM   #18
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: RO Call

    Quote:
    Originally Posted by DjinTonic View Post
    Like many other cancers, PCa typically has no symptoms early on. There are only medical signs: sometimes an abnormal DRE and, usually, an increased PSA. Neither is diagnostic. Half of the nodules felt are benign, and PCa is only one condition that can raise PSA.

    PSA is unjustly criticized as being non-specific. That misses the point. We are very fortunate that we do have PSA, because an abnormally high PSA can be investigated. Not all PCa can be identified immediately: it may take repeat investigations over time. But if you continue to investigate, you will find PCa if it exists. In the near future we'll have much better blood or urine tests to find significant PCa, but for now PSA is the key.

    Conversely, if you neglect an above normal PSA, you risk having PCa discovered only after it has become metastatic and presents symptoms. You've arrived late for the war.

    This situation persists today. Patient education can certainly help, but I put the responsibility on primary care docs who either fail to screen or who minimize PSA rise to their patients rather than refer them to a urologist.

    Djin
    Thats somewhat similar to what Jim's PCP told him.
    Jim went to see him and thank him for running that test, and no previous Doctor had even mentioned it.
    Jims Dr told him there's just not enough emphasis put on routine PSA testing, for all the reasons we've discussed in previous threads.
    Jims just fortunate this new PCP had prostate cancer himself so he is VERY aware.
    Anyway, nothing to be done now but move forward.
    P

     
    Reply With Quote
    The Following User Says Thank You to JWPMP For This Useful Post:
    GuyBMeredith (10-24-2020)
    Old 10-24-2020, 02:04 AM   #19
    Prostatefree
    Veteran
    (male)
     
    Join Date: Dec 2019
    Posts: 411
    Prostatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB UserProstatefree HB User
    Re: RO Call

    I'll ask you report back to his previous doctor who didn't test him the impact of his incompetence. Please write a letter to the head of his previous healthcare system sharing the impact of their failure. Be an advocate. In both letters share the impact in real terms of what now likes ahead of you. Make a way for those coming after you.

     
    Reply With Quote
    Old 10-24-2020, 09:42 AM   #20
    GuyBMeredith
    Member
    (male)
     
    Join Date: Apr 2020
    Location: Salem, Oregon
    Posts: 93
    GuyBMeredith HB UserGuyBMeredith HB UserGuyBMeredith HB User
    Re: RO Call

    Beginning HT ahead of beginning RT is common. As your doctor indicated, the HT is used to shrink the cancer to help with the RT. Removes the testosterone that fuels the cancer and causes it to "hybernate".
    __________________
    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.

     
    Reply With Quote
    Old 10-24-2020, 09:59 AM   #21
    Terry G
    Senior Member
    (male)
     
    Join Date: Dec 2019
    Location: Butler PA
    Posts: 123
    Terry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB UserTerry G HB User
    Re: RO Call

    We all learn and benefit from one another’s experiences both good and bad. This is a very good thread that so many undiagnosed men can learn and benefit from. I hope this information reaches some of those men who remain uninformed about the benefits of early testing and diagnosis.
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3, 0.6, 0.8

     
    Reply With Quote
    Old 10-24-2020, 12:19 PM   #22
    JWPMP
    Senior Member
     
    Join Date: Jul 2020
    Location: Oakdale CA
    Posts: 249
    JWPMP HB User
    Re: RO Call

    Quote:
    Originally Posted by Prostatefree View Post
    I'll ask you report back to his previous doctor who didn't test him the impact of his incompetence. Please write a letter to the head of his previous healthcare system sharing the impact of their failure. Be an advocate. In both letters share the impact in real terms of what now likes ahead of you. Make a way for those coming after you.
    I will look into that.
    One is retired, about 5 years now.
    The other replaced him.
    P

     
    Reply With Quote
    Old 10-24-2020, 01:04 PM   #23
    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
    Re: RO Call

    Screening for Prostate Cancer

    I just posted a new thread entitled "Screening for Prostate Cancer" on the Board. It captures some, but not all, of the helpful experiences and thoughts expressed here. Hopefully the fact that it is a stand alone thread with its own descriptive title will enable people to find information about the value of screening more easily. I did reference this thread in it, and I included two quotations from this thread. A lot more information is needed to flesh-out this new thread on screening.

    I hope anyone reading the new thread will also turn here as well, as this thread gives us a great real-world example of the importance of screening.

    ….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.

     
    Reply With Quote
    The Following User Says Thank You to IADT3since2000 For This Useful Post:
    GuyBMeredith (10-24-2020)
    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 12:58 AM.





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