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    Old 12-21-2020, 04:35 AM   #1
    dan3853
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    Question Prostate cancer - newbie - trying to decide

    Hi all, thanks in advance for any advice.

    I was recently diagnosed with a small amount of gleason 8 cancer, likely extraprostatic extension, likely localized. Being 68 and very healthy and active, I'm trying to decide if removal is still appropriate.

    Will be having a bone scan to be certain nothing got to pelvis. My uro is recommending IGRT with space oar to protect colon and HT-which I am very leery of after reading possible long term side effects. He is recommending a local facility that he may have financial connections to. I am 30 minutes away from Cleveland Clinic and have discussed removal - but the surgeon says he does about 2 or 3 a month, which is not a comforting quantity.

    I plan to meet with a CleveClinic radiologist - Tendulka in about a week. He has had some positive write-ups on this forum.

    My PSAs during all of this have varied from 2.49-6.29 over multiple tests.

    Any preferences regarding radiation vs surgery?

     
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    Old 12-21-2020, 04:46 AM   #2
    HighlanderCFH
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    Re: Prostate cancer - newbie - trying to decide

    Howdy,

    The cure rate between radiation & surgery is about the same, although there is a certain advantage with surgery because you receive the post-op pathology report and know, without guessing, how things are.

    One thing for certain is that you do NOT want to delay any action with Gleason 8. It is nothing to fool around with.

    My general thought is that you should consider surgery, but ONLY at Cleveland Clinic since you're so close. They do thousands there and are one of the top hospitals in the world. To be so close to them and not take advantage would be like going to the Moon but never opening your eyes to see what it looks like up close.

    My best advice to you would be to get appts set up at Cleveland Clinic and consult with a top radiation oncologist and a top surgeon who specializes in PC. Then you can learn the pros & cons of both types of treatment from the very best.

    In the meantime, can you give us your PSA history? That will give us a clearer picture of your situation.

    Good luck!
    Chuck

     
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    Old 12-21-2020, 07:15 AM   #3
    Michael F
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    Re: Prostate cancer - newbie - trying to decide

    Hi Dan! Very sorry about your PCa diagnosis. Gleason 8 with Extraprostatic Extensions (EPEs) place you in a High Risk Category.

    Your single objective is CURE. Now is the time to immediately determine your best options to achieve Cure. Part of your due diligence is getting a 2nd opinion. The Cleveland Clinic meeting is the perfect 1st step! Good job! Be sure to let Dr T know that you want advise on the best options specific to your pathology status.

    Your meeting with Dr T will be enlightening and helpful to your arriving at a decision.

    Be sure to ask: "Am I a candidate for an advanced diagnostic scan such as a PSMA CT/MRI scan?" These newer generation scans can pinpoint locate PCa outside of the prostate gland that a standard CT and/or bone scan can not.

    Re Surgery vs Radiation: This is analogous to Republican vs Democrat! You have to make an informed decision that best addresses your PCa status and psyche. If you have a surgical consult, it is imperative that you ask the URO surgeon "How will you address the EPEs intraoperatively?" If these are not properly addressed during surgery, you may be a candidate for Adjuvant (ART) or Salvage (SRT) radiation following surgery.

    FYI: A URO surgeon who specializes in PCa will typically be doing a minimum of 3 - 5 RPs per week. At The CC, such a surgeon will likely do 3-5 on their OR day!

    Good luck! Keep us updated!

    MF
    __________________
    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 = 26)
    LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%) ED = present

     
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    dan3853 (12-22-2020)
    Old 12-21-2020, 07:43 AM   #4
    dan3853
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    Re: Prostate cancer - newbie - trying to decide

    Thanks for the comments. Here are the PSA's - they seem strange to me.
    Date Total PSA Free PSA % Free
    9/16 2.49 .37 29.71
    8/10 6.29 1.09 17.32
    2/10 4.00 .68 17.0
    11/25/19 4.7 .61 12.97
    8/19 5.79 .87 15.02
    5/13 2.78 .49 17.62
    2/4 6.14 1.07 17.42
    6/25/18 5.83 .78 13.37
    3/12 7.86 . 90 11.4
    Up until the most recent ultrasound and biopsy the uro wanted me to go on testosterone treatment to increase my testosterone. That would be like Miracle Grow for the newly forming cancer?
    and talking to
    BTW, I'm going for a bone scan on 12/28 and talking to the RO Tendulka on 1/4.

     
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    Old 12-21-2020, 10:43 AM   #5
    Terry G
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    Re: Prostate cancer - newbie - trying to decide

    Dan, I’m glad you’re getting evaluated at Cleveland Clinic (CCI). Be sure to take your biopsy slides to that meeting. Gleason 8 is nothing to mess with and consulting with one of the best can make a huge difference in outcome . I would encourage you to learn as much as possible between the two treatments and select the one best for your situation. A lot of things go into making the final decision with cure being foremost. Since my urinary and sexual function prior to treatment was quite good it was important not to compromise either. I found the five treatment sessions using SBRT to be an easy choice for my situation. I’m a radiation guy; however, for PCa ‘one size fits none’. I would encourage keeping surgery as an option and evaluate the risks, side effects and likelihood of success for both treatments. I would also keep the option for ADT with RT open as well.

    Our experience with both the Urologist and Radiation Oncologist and the entire staff at CCI made our choice to be treated there easy (even going out of network). We had to travel two and a half hours each way but an insignificant cost for the quality of treatment we received. My wife has a special sense for evaluating people and after a lengthy discussion with Dr. Tendelcar and staff I looked at her and saw her nod and knew we made our treatment choice. I have a sense that Dr. Tendelcar is a person who under promises and over delivers.

    All of my post treatment visits have been virtual. We were so impressed with our experiences at CCI we changed our Insurance Provider from one we had been with for more than fifty years to one that included CCI ‘in network’. Feel free to message me for any details regarding my experience and I hope your experience and results equal mine.
    __________________
    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

     
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    Old 12-21-2020, 03:35 PM   #6
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    Re: Prostate cancer - newbie - trying to decide

    Urologists are surgeons, they believe in surgery and its effectiveness. Its their livelihood and their vocation. Since your urologist suggested radiation- a treatment outside of his specialty- I would really consider it if I were you.

    Almost like a statement against his own interests.

     
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    Old 12-22-2020, 02:36 PM   #7
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    Re: Prostate cancer - newbie - trying to decide

    From a G8 to another. Cleveland is a great choice. You are still a candidate for surgery. Dr Kaouk does out patient single port surgery at CC and Tendulkar is top for radiation. They won’t hard sell you and give you the options and benefits.

     
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    dan3853 (12-23-2020)
    Old 12-23-2020, 05:32 AM   #8
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    Re: Prostate cancer - newbie - trying to decide

    Hi Dan and welcome to the Board!

    When I was making my own decision in the 2011-2012 timeframe for a once life-threatening case, I looked closely at published medical research studies and reviews of those studies, and the results were clear: for true Gleason 8 cancer, recurrence rates at the five year point, but even more so at the 10 year point after treatment were very high (about 70% per my recollection, which needs verification), while recurrence rates after modern radiation were much lower (but much higher in the older era when imaging was inadequate and consequently doses that were inadequate were often given.

    The 2018 book "The Key to Prostate Cancer", Dr. Mark Scholz, MD, and 29 others, is very helpful. Your Gleason 8 cancer would fall into the Azure group of chapters (high risk). One helpful graphic is for a risk group lower than yours, intermediate risk, on page 132; it shows that the potential of surgery is limited and more favorable results for radiation; similar graphics for high-risk cases show an even larger gap between surgery and radiation. The graphic is based on many published studies. The studies with poorer results for radiation are basically where older radiation/imaging technology was used. One odd point in this book is that the term "testosterone inactivating pharmaceuticals," abbreviation TIP, is used for the commonly used term "androgen deprivation therapy," abbreviated ADT. ADT would be given with radiation for a high-risk case.

    The Gleason score is key to all decision making. Was your pathology interpreted at a center of excellence or by a general pathologist. Second opinions by an expert are par for the course and very important if the original biopsy was not interpreted by an expert.

    Surgery is still an option, especially with a center of excellence like the Cleveland Clinic, but the success rate is lower and the profile/likelihood of burdensome side effects is higher on average.

    Good luck!

    ….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.

     
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    Old 12-23-2020, 05:28 PM   #9
    guitarhillbilly
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    Re: Prostate cancer - newbie - trying to decide

    Quote:
    Originally Posted by dan3853 View Post
    Hi all, thanks in advance for any advice.

    I was recently diagnosed with a small amount of gleason 8 cancer, likely extraprostatic extension, likely localized. Being 68 and very healthy and active, I'm trying to decide if removal is still appropriate.

    Will be having a bone scan to be certain nothing got to pelvis. My uro is recommending IGRT with space oar to protect colon and HT-which I am very leery of after reading possible long term side effects. He is recommending a local facility that he may have financial connections to. I am 30 minutes away from Cleveland Clinic and have discussed removal - but the surgeon says he does about 2 or 3 a month, which is not a comforting quantity.

    I plan to meet with a CleveClinic radiologist - Tendulka in about a week. He has had some positive write-ups on this forum.

    My PSAs during all of this have varied from 2.49-6.29 over multiple tests.

    Any preferences regarding radiation vs surgery?
    Cleveland Clinic is a excellent medical facility with the specialists to treat you.

    Read my signature and you will see that I was diagnosed with Gleason 8 and a PSA of 6.9.
    I read lots of info and made up my mind pretty quick to do IMRT and ADT.
    I was offered surgery as a choice but that did not appeal to me personally.
    Either choice has consequences - short and long term - and only you can make this decision after given proper information.
    Gleason 8 is nothing to mess around with.
    Wish you the very best outcome in your choice of treatment.
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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    Old 12-23-2020, 07:01 PM   #10
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    Re: Prostate cancer - newbie - trying to decide

    Be careful reading studies about radiation toxicities. There were problems before the age of modern RT, which began about 2004. Since then, beam RT (IMRT, SBRT, and protons) have made great improvements in accuracy, and significant reductions in side effects.

    Because studies take so long to compile, even recently published ones may cite data from men treated in the 1990's. Be sure to find the dates of treatment.

    Gleason 8 is considered high risk, and usually treated the same as Gleason 9 and 10. A combination of radiation treatments is often used, and the results are described here:

    https://www.medpagetoday.com/hematologyoncology/prostatecancer/71560

     
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    Old 12-23-2020, 11:07 PM   #11
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    Re: Prostate cancer - newbie - trying to decide

    When you are asking questions make sure you are not getting generic answers. Ask the doctor to give realistic expectations in your specific case. Too often we get answers like "in most cases that will resolve itself over time depending on age and health factors." Response should be "how do my age and health affect this and how long would "over time" be in my case?"

    Being diagnosed with cancer is an emotional event for most people, but take time to think through what you want in quality of life after and use that to weight your choices.
    __________________
    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.

     
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