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  • mpMRI results before meeting with urologist

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    Old 10-16-2021, 08:36 AM   #1
    Taylor C
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    mpMRI results before meeting with urologist

    I picked up a copy of the radiologists report yesterday. It does not look good.
    I do know that my life is about to change dramatically.

    I've transcribed parts of the report below. I'll be meeting with the urologist on Wednesday to discuss what all this means exactly but my impression is that it's definitely cancer that may have spread to the right seminal vesicle and possibly both hip sockets. So I'm preparing myself for a poor prognosis and the fact that I will likely need extensive treatments and possibly surgery and have been researching what those entail for quite some time. The fact that I'm otherwise in good shape is a good thing regarding the treatments and side effects, I've read. Trying to be positive but it's a lot to process. Fyi, I'm a 62 year old caucasian.

    "2 lesions were reported.
    Lesion 1- probably of tumor (1-5), 5 (2.3x1.7x1.8cm) level of prostate- base to apex.
    Lesion 2- probability of tumor-4 (1.0x0.7x0.9cm), level of prostate-mid.
    Other factors include- extensive abnormal enhancement is noted along the ampullary portion of the right seminal vesicle, intermediate signal is noted within the right, greater than the left acetabulum (hip socket) but no distinct bony metastases noted. No distinct lymphadenopathy. No additional peripheral zone findings.

    Impression: Lesion one is a large right-sided multizonal invasive tumor with lesion number two possibly a contralateral extension or concomitant tumor."

    I'm wondering if anyone else here has been diagnosed with similar conditions on an mpMRI and what course of treatment(s) were chosen? Any other advice would be appreciated.

    Thanks everyone, now I'm taking a break from all this to spend some time doing things that I enjoy to take my mind off all this for awhile.

     
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    Old 10-22-2021, 11:30 AM   #2
    IADT3since2000
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    Re: mpMRI results before meeting with urologist

    ….Jim

    Hi Taylor C,

    I'm curious what the urologist discussed with you. The logical next step would be a biopsy, which is the normal next step if the mpMRI does not give you a pass. Until you get the biopsy result, it's premature to focus on a treatment option, though getting generally familiar with options and the language involved in thinking about them can help. Based on the mpMRI, it looks like that elevated PSA was warning of cancer, though that is still not an absolute certainty.

    A superb book for orienting patients is "The Key to Prostate Cancer," 2018, by lead author Dr. Mark Scholz, MD, plus 29 others - many prominent North American and world-class experts, contributing chapters. Rather than read the whole book, you take an up-front short quiz, using your key clinical information, including biopsy results, and then you can focus on treatments that are appropriate for YOUR situation and bypass those chapters that do not apply. There are also chapters common to all patients. For you, right now, the early chapters of the book that are common to all patients would be useful, especially those on figuring out how aggressive the cancer is. After that, you might want to read the overview (initial) chapters for the first three of the five sections for each level of cancer, indicated by increasingly darker shades of blue: the first three are for Sky ("low risk"), Teal ("intermediate risk"), and Azure ("high risk").

    Are you aware of the excellent prognosis, if properly managed or treated, for the vast majority of prostate cancer patients in the modern era? This is no longer our fathers' disease; still no cake walk for most of us, but enormous progress has been made and is continuing.

    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, 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. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my “hard knocks” experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 10-22-2021, 03:56 PM   #3
    Taylor C
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    Re: mpMRI results before meeting with urologist

    Thank you IADTsince2000 for the good information. I will definitely order the book you referenced. Long story short, I've decided to see a world class urologic oncologist named Judd W Moul at Duke University Hospital for a second opinion and to be treated there by their team of prostate cancer specialists if necessary. Hopefully the delay in biopsy and treatment will not cause my prognosis to be effected in a big way. Fingers crossed....
    I live in a rural area of western North Carolina and my gut tells me that the urologist I've seen on two occasions now is not the man I wish to go forward with. He may be competent but his desk-side manner does not inspire confidence in me. It was clear when we spoke in his office that I knew more about the radiologists report than he did. In fact, while I was telling him some important things about myself, I could see that he was reading the report while I was speaking to him and that I did not have his full attention. The first appointment did not go well either for several reasons so my intuition tells me I should go elsewhere for something this serious. Hopefully I won't regret this decision. I am indeed aware that great advancements have been made in this field and am hopeful from the stories like yours that I have read here and other places that I will be able to live with this condition for a long time and maintain a good quality of life but that it will still not be an easy thing.
    I do appreciate your concern and encouragement.

     
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    Old 10-22-2021, 08:41 PM   #4
    music4ever
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    Re: mpMRI results before meeting with urologist

    I agree with Jim. Biopsy is the next step. If you are not comfortable with your current Urologist go to another one for the biopsy - that will also give you a Gleason score too which will give you better info to make treatment decisions (if treatment is needed).
    __________________
    1/2021 - 53 y/o Dx Prostate cancer Gleason 7 (3+4) over 6 cores on right side. Prolaris report "Unfavorable Intermediate" risk - PSA 3.9. 2019-PSA 3.51, 2017-PSA 2.55
    3/2021 - Radical Prostatectomy (robotic).
    3/2021 - Post-op pathology provided – pT3a pN0 MX, Stayed Gleason 7 but moved up to 4(70%) + 3. Small positive focal margin on right side. EPE. Decipher genomic test (.97) suggests "high risk" prostate cancer.
    4/2021 - PSA 0.08 - 6 week follow-up
    6/2021 - PSA 0.06 - 12 week follow-up
    9/2021 - PSA 0.09 - 6 month follow-up
    10/2021 - PSA 0.07 - Annual Physical (different lab)

     
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    Old 10-23-2021, 07:43 AM   #5
    IADT3since2000
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    Re: mpMRI results before meeting with urologist

    Hi again Taylor C,

    A LOT of people would say that Dr. Moul is an excellent choice, and you are fortunate to be able to see him. Indeed, in late December of 1999, just after my own diagnosis, we vacationed in the LA area, and I was able to get a second opinion with an eminent urologist at the City of Hope cancer center. That doctor recommended Dr. Moul, but said it might not be possible to see him as he was with the Armiy's Walter Reed hospital at the time. I ended up going a different route.

    I just did a search on PubMed, www.pubmed.gov, our National Library of Medicine's repository for electronic abstracts and many full copies by link of research papers published all over the world. With the search string - moul j [au] AND prostate cancer - I got a list of 434 publications for him. That's amazing productivity. He's been at this and a leader for a very long time.

    It's good you are going with your gut feel about that first urologist. He may be very good for some patients, but he probably is not a good fit for you. I hope Dr. Moul will also refer you for a consultation with a radiation oncologist if the biopsy shows the kind of prostate cancer that needs to be treated. I'm thinking that's likely as I believe they take a team approach at Duke.

    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, 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. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my “hard knocks” experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

     
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