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



Cancer: Prostate Message Board

  • "You Have Cancer"

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 01-27-2020, 02:06 PM   #16
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,875
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: "You Have Cancer"

    Hi Mike,

    You made the same choice I did for my own challenging case: surgery. I wanted "it" out of there and gone from our lives, and so did my wife. Fortunately for me, with some discouraging case characteristics, such as stage T3 cancer in particular, the surgeons at Johns Hopkins rapidly rejected me as eligible for surgery.

    Surgery can be your final needed therapy, but so often it is not for a Gleason 8 case, as has been mentioned earlier. As much as we want the disease out of our lives and gone forever, there is a strong likelihood that you already have spread beyond the prostate that is at least microscopic. Surgery is inadequate to cure that kind of case. However, radiation CAN and often DOES cure such cases. Typically, a patient with a challenging case will also get a dose (actually a series of doses) to the pelvis as well as to the prostate, and the radiation will be supported with androgen deprivation therapy, for at least 18 months and possibly up to two years (sometimes up to three) for a case like yours.

    An advantage to making radiation plus ADT your first choice is that you don't have to bear side effects from two different types of therapy (surgery plus radiation), a combination which is often more of a burden than if you simply added the side effects of both (unfavorable synergy). Also, I am convinced that the odds of avoiding recurrence of a challenging case are substantially better for radiation instead of surgery.

    I suggest that you and your wife get a hold of the 2018 book "The Key to Prostate Cancer" by eminent prostate cancer medical oncologist Mark Scholz, MD, plus 29 others, mostly eminent experts. In particular there is a graphic on page 132, in a chapter written by radiation oncologists John Blasko, MD and the late Peter Grimm (DO), that illustrates the typical superiority of radiation over surgery for intermediate-risk cases, based on evidence from multiple published studies. They have made available elsewhere a similar graphic that shows an even greater superiority for high-risk cases like yours.

    We all tend to be biased in favor of our own therapies if they have worked well for us, and that is likely true for me too, as a radiation veteran. However, you can search for your own "ground truth" by looking at the abundant published and readily accessible medical research on these different approaches. The site www.pubmed.gov is a wonderful tool for this, and you are fortunate to have a wife who will know how to put this tool to use.

    Surgery may turn out to be the right solution for you, but do your due diligence so that you won't be plagued later by regret.

    This is not easy. Good luck with whatever you use to counterattack the cancer!

    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 at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
    Reply With Quote
    The Following User Says Thank You to IADT3since2000 For This Useful Post:
    OrygunDan (01-28-2020)
    Sponsors Lightbulb
       
    Old 01-28-2020, 05:43 AM   #17
    Michael F
    Member
    (male)
     
    Join Date: Dec 2019
    Location: Greater Atlanta
    Posts: 81
    Michael F HB UserMichael F HB UserMichael F HB UserMichael F HB User
    Re: "You Have Cancer"

    Hi Mike! It looks like you are taking all of the correct steps by meeting with an RO & MO. Great job! You will gain a lot of knowledge and confidence moving forward. If possible, have your wife attend these consultations.

    4 Items:

    1. Re "The fact that it is an aggressive Grade 8 cancer....:" How do you know this is "aggressive?" Did you have genomic testing performed on the Bx sample?

    Take a look at DjinTonic's Signature. Dj had a high Gleason PCa (9) but a low Decipher Score. Since you have opted for RP, you can later order Genomic testing on the excised prostate. Obviously you will want to review your Path Report with your URO Surgeon. This is a benefit of surgery => the entire prostate gland is removed and examined. The highest risk segment can be later tested for "aggressiveness."

    2. Age: Is this a closely guarded secret??!? Age is a consideration in treatment decision. My guess is you are physiologically fit for surgery.

    3. RP: Is major surgery. The majority found it to be highly tolerable with few complaints or post op issues. Every individual and surgery is unique. Get familiar with the post OP recovery issues. Your URO Surgeon's staff will provide all the essential information.

    4. If not already in good physical condition, start a program today, as able, and shed unneeded weight. At the very least, start a daily walking program with increasing intensity. Walking will be required following RP and it will help with your recovery.

    Lastly, Re "we are 10 minutes from the beach......:?" Are you sure you are from NJ?!!!!

    We'll be with you every step of your Journey to Cure.

    MF

     
    Reply With Quote
    Old 01-28-2020, 05:53 AM   #18
    NJMike
    Newbie
    (male)
     
    NJMike's Avatar
     
    Join Date: Jan 2020
    Location: Eatontown NJ 07724
    Posts: 7
    NJMike HB User
    Re: "You Have Cancer"

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi Mike,

    You made the same choice I did for my own challenging case: surgery. I wanted "it" out of there and gone from our lives, and so did my wife. Fortunately for me, with some discouraging case characteristics, such as stage T3 cancer in particular, the surgeons at Johns Hopkins rapidly rejected me as eligible for surgery.

    Surgery can be your final needed therapy, but so often it is not for a Gleason 8 case, as has been mentioned earlier. As much as we want the disease out of our lives and gone forever, there is a strong likelihood that you already have spread beyond the prostate that is at least microscopic. Surgery is inadequate to cure that kind of case. However, radiation CAN and often DOES cure such cases. Typically, a patient with a challenging case will also get a dose (actually a series of doses) to the pelvis as well as to the prostate, and the radiation will be supported with androgen deprivation therapy, for at least 18 months and possibly up to two years (sometimes up to three) for a case like yours.

    An advantage to making radiation plus ADT your first choice is that you don't have to bear side effects from two different types of therapy (surgery plus radiation), a combination which is often more of a burden than if you simply added the side effects of both (unfavorable synergy). Also, I am convinced that the odds of avoiding recurrence of a challenging case are substantially better for radiation instead of surgery.

    I suggest that you and your wife get a hold of the 2018 book "The Key to Prostate Cancer" by eminent prostate cancer medical oncologist Mark Scholz, MD, plus 29 others, mostly eminent experts. In particular there is a graphic on page 132, in a chapter written by radiation oncologists John Blasko, MD and the late Peter Grimm (DO), that illustrates the typical superiority of radiation over surgery for intermediate-risk cases, based on evidence from multiple published studies. They have made available elsewhere a similar graphic that shows an even greater superiority for high-risk cases like yours.

    We all tend to be biased in favor of our own therapies if they have worked well for us, and that is likely true for me too, as a radiation veteran. However, you can search for your own "ground truth" by looking at the abundant published and readily accessible medical research on these different approaches. The site www.pubmed.gov is a wonderful tool for this, and you are fortunate to have a wife who will know how to put this tool to use.

    Surgery may turn out to be the right solution for you, but do your due diligence so that you won't be plagued later by regret.

    This is not easy. Good luck with whatever you use to counterattack the cancer!

    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 at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
    Reply With Quote
    Old 01-28-2020, 05:56 AM   #19
    NJMike
    Newbie
    (male)
     
    NJMike's Avatar
     
    Join Date: Jan 2020
    Location: Eatontown NJ 07724
    Posts: 7
    NJMike HB User
    Re: "You Have Cancer"

    Jim,

    Thank you for the timely email. I agree with you 100%. In fact just yesterday my wife and I decided to switch to anti-testosterone and radiation treatment just for the exact reason you site in your post. We feel the best overall comprehensive and aggressive treatment for a Gleason 8 cancer is anti-testosterone and radiation treatment. Just have to find out when I can start.

    Hope all is well with you.

    Mike

     
    Reply With Quote
    The following user gives a hug of support to NJMike:
    IADT3since2000 (01-28-2020)
    Old 01-28-2020, 06:30 AM   #20
    DjinTonic
    Veteran
    (male)
     
    Join Date: Dec 2019
    Location: NC
    Posts: 463
    DjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB UserDjinTonic HB User
    Re: "You Have Cancer"

    Hi Mike -- congrats on reaching a decision on your primary treatment. Just two points I'd like to make:

    (1) I would suggest that you get a 2nd opinion on your biopsy slides from Dr. Epstein at JH (if you haven't already). Unlike surgery, if you decide on RT, there will be no additional prostate tissue to examine pathologically: your biopsy slides will be the only window into your specific cancer. This 2nd opinion is not that expensive. If it confirms the original report, no harm done and you can be more confident about your Gleason score; if it does not, you don't know whether the change might affect your treatment decisions, either now or down the pike. (With a phone call from you, your doc can have your slides sent to JH.)

    (2) For this same reasoning, your biopsy slides become more important if you choose RT -- these will be used for any genomic testing that you may decide to have.

    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.)

     
    Reply With Quote
    Old 01-28-2020, 08:35 AM   #21
    Gary I
    Member
    (male)
     
    Join Date: Dec 2019
    Location: SoFL
    Posts: 98
    Gary I HB UserGary I HB UserGary I HB User
    Re: "You Have Cancer"

    Death is inevitable....still sucks
    __________________
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    Second 3T MRI 1/17
    RALP 7/17, G3+4, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over next 4 months
    DCFPyl PET & ercMRI @NCI - 11/17
    One inch tumor still in prostate bed
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    SRT, 2ADT, IMGT 70.2 Gy, complete 5/18
    PSA 0.066 1/20, .059 6/20, .077 9/20, .099 11/20,.075 1/21 .079 4/21

     
    Reply With Quote
    Old 01-28-2020, 11:00 AM   #22
    guitarhillbilly
    Senior Member
    (male)
     
    Join Date: Jan 2020
    Posts: 235
    guitarhillbilly HB Userguitarhillbilly HB Userguitarhillbilly HB User
    Re: "You Have Cancer"

    Quote:
    Originally Posted by NJMike View Post
    Jim,

    Thank you for the timely email. I agree with you 100%. In fact just yesterday my wife and I decided to switch to anti-testosterone and radiation treatment just for the exact reason you site in your post. We feel the best overall comprehensive and aggressive treatment for a Gleason 8 cancer is anti-testosterone and radiation treatment. Just have to find out when I can start.

    Hope all is well with you.

    Mike
    Just wanted you to know that I also chose Hormone Therapy + IMRT and my diagnosis is T2a Gleason Score 8.

    I'm 7 weeks into the Lupron injection and so far hot flashes and mild digestive issues are what I've experienced.

    My radiologist has me waiting at least 2 months on Lupron before we do the CT Simulation.

    I wish you the very best and complete success in your treatment plan.

     
    Reply With Quote
    The following user gives a hug of support to guitarhillbilly:
    IADT3since2000 (01-28-2020)
    Old 01-28-2020, 11:27 AM   #23
    OrygunDan
    Newbie
    (male)
     
    Join Date: Jan 2020
    Posts: 5
    OrygunDan HB User
    Re: "You Have Cancer"

    Mike,
    I have a copy of "The Key to Prostate Cancer" by eminent prostate cancer medical oncologist Mark Scholz, MD and can send it to you if you would like to read more. It was given to me early on and really helps to know treatments and disease status. PM me your mailing address and I'll get in the mail.

    Dan

     
    Reply With Quote
    Old 01-28-2020, 12:23 PM   #24
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,875
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: "You Have Cancer"

    Hi again Mike,

    Again, good luck! We all need some luck, no matter what approach we choose. I believe you are on the best course. I'm responding to your post below:

    Quote:
    Originally Posted by NJMike View Post
    Jim,

    Thank you for the timely email. I agree with you 100%. In fact just yesterday my wife and I decided to switch to anti-testosterone and radiation treatment just for the exact reason you site in your post. We feel the best overall comprehensive and aggressive treatment for a Gleason 8 cancer is anti-testosterone and radiation treatment. Just have to find out when I can start.

    Hope all is well with you.

    Mike
    Be sure to get up to speed on how to avoid and minimize side effects of ADT. Two excellent sources that I know are "The Key to Prostate Cancer," mentioned earlier, in particular Chapter 23 on primary ADT (in contrast to your use of it (and later mine) as a supportive therapy for radiation), p. 180, and later Chapter 30, pp. 239-245 ("Reducing the Side Effects of TIP [ADT]", including 7 references, and many pages in "Androgen Deprivation Therapy, 2nd edition," 2018, Wassersug, Robinson and Walker. (Dr. Sholz uses the term "Testosterone Inactivating Pharmaceuticals", or "TIP" for ADT; I can explain, but it is not really relevant.) A key point is that the side effects of ADT are reversible for the vast majority of us once we stop ADT medication.

    In the past few years another not-yet-decided but welcome issue has emerged: whether patients undergoing prostate cancer radiation, especially with ADT in support, should start taking the old and dirt cheap diabetes drug metformin, even if they are not diabetic. This is now being studied in an arm of the multi-faceted UK clinical trial for prostate cancer known as STAMPEDE, but, unfortunately for patients who must call their shot now, the results will not be known for years. There has been some exciting preliminary evidence. What really got peoples' attention was an eye-popping study by world-class radiation experts at New York City's famed Memorial Sloan Kettering Cancer. Center. They did a review of their radiation patient charts and found that diabetic patients on metformin did strikingly better than diabetic patients not on metformin, and even did substantially better than non-diabetic patients (who naturally, back then, were not on metformin). The graphs of success (non-recurrence) or failure (mortality) in the study are stunning! Here's the cite for the study, which is available in full: https://pubmed.ncbi.nlm.nih.gov/23287698 . Another study, which looked at metformin combined with lifestyle tactics to reduce side effects of ADT, also found quite favorable results: https://pubmed.ncbi.nlm.nih.gov/21933330-a-prospective-randomized-pilot-study-evaluating-the-effects-of-metformin-and-lifestyle-intervention-on-patients-with-prostate-cancer-receiving-androgen-deprivation-therapy/?from_single_result=nobes+%5Bau%5D+AND+m etformin ; this was a prospective, randomized pilot study. Moreover, the side effect burden of metformin is almost always negligible, provided the dose is built up gradually with retreat to a tolerable dose if side effects are encountered.

    If your wife has time, I would be interested in her reaction to these studies.

    I was nearly on metformin for my own radiation, but there was a disagreement between my two oncologists, and I ended up not taking the pills that I had on the shelf, even though I wanted to.

    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 at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
    Reply With Quote
    Old 01-28-2020, 01:01 PM   #25
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,875
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: "You Have Cancer"

    PS re metformin and radiation, and ADT:

    The renowned and now retired medical oncologist Dr. Charles "Snuffy" Myers, MD, with a practice dedicated to prostate cancer, devoted his 2016 presentation at the Prostate Cancer Research Institute Conference on Prostate Cancer to metformin for radiation and ADT patients. It is available on Disc 2 of the DVD set, starting about 1:48, through about 2:50, including questions, with echoes elsewhere in the conference. He provided abundant detail.

     
    Reply With Quote
    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 07:35 AM.





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