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    Old 06-28-2021, 08:47 AM   #61
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    Quote:
    Originally Posted by Prostatefree View Post
    My first reaction to your profile was RT. The possibility of starting with surgery and a cure caught my ear. You have effectively discredited your second opinion as unprofessional. Will you get another?
    Yes, going to Fox Chase Cancer Center in Philly this Friday for a 3rd opinion. Say tuned.
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    57 yo, family history of PCa, PSA 5.7, Free PSA 8.43%, DRE Neg, 5/26/21 Biopsy: Gleason 9, Grade 5, 16 of 20 cores positive mix of 5+4 and 4+5. Stage IIIc, cT2NxMx, CT shows a 3 cm x 2 cm diseased pelvic lymph node, Bone scan neg, 6/16/20 1st Firmagon injection.

     
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    Old 06-28-2021, 11:52 AM   #62
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    Re: How dire is this path report. Gleason 5+4

    Quote:
    Originally Posted by john_ct1 View Post
    Just spoke with my local urologist and he doesn't agree with the 2nd opinion urologist's (Top guy @ UPENN) recommendation to do a RP. He said it won't buy me much but make side effects when later combined with adjuvant RT significantly worse. My local urologist was trained by the 2nd opinion uro so my local uro said he would call him to discuss my case. If long term outcomes are similar between RP+RT+ADT and RT+ADT then I'd obviously rather skip the surgery and it's trauma.
    Hi John. I've added Italics and bolding to your post.

    Actually, my savvy layman's impression is that researched results appear to be not similar but rather significantly superior when a patient like you - high-grade prostate cancer - skips surgery and goes straight to radiation plus ADT. I think I may have posted this before, but your recent post suggests I may have not posted it to you.

    My own hypothesis, which I have not seen analyzed or researched by experts and could very well be wrong, is that having surgery first puts a risky long delay in the process of having ADT/radiation. You have to get the surgery scheduled, and then there is a long recovery period before radiation is wise, because shortening that period will likely substantially aggravate side effects of surgery. That kind of delay does not matter much for intermediate-risk patients because the cancer is not so aggressive: it is not Gleason 8, 9 or 10, and there is a fairly good likelihood that intermediate-risk cancer has not spread beyond the range of surgery plus the "usual suspect" lymph nodes that are typically removed if the doctor is concerned about spread. Aggressive cancer has very often spread beyond the range of surgery, and often it is too small for detection by the traditional technetium isotope bone scan/CT scan combo, yet it is viable and will grow, sometimes seeding other metastases. The less time it has to do that, the better. ADT can knock the cancer back on its heels for a while, and then timely radiation can hopefully cure it before it has a chance to spread beyond the range of radiation or develop to the explosive metastases stage.

    I've been working on a new thread for a while that highlights some key research and is consistent with that hypothesis that early radiation is superior for high-grade cancer, and hope to post it soon. All that said, it is clear that surgery can cure patients with high-grade cancer if they are lucky enough to truly have cancer that is truly confined to where surgery can remove it (prostate, seminal vesicles, removed nodes). New advanced scans, genetic tests, and other indicators appear to be giving patients an advanced look at whether they are in the lucky group.

    Sorting through all this is not easy. 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 06-28-2021, 01:26 PM   #63
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    Jim,

    I've already started ADT. Wouldn't ADT buy me time for that recovery window between the RP and the start of RT?

    -John
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    57 yo, family history of PCa, PSA 5.7, Free PSA 8.43%, DRE Neg, 5/26/21 Biopsy: Gleason 9, Grade 5, 16 of 20 cores positive mix of 5+4 and 4+5. Stage IIIc, cT2NxMx, CT shows a 3 cm x 2 cm diseased pelvic lymph node, Bone scan neg, 6/16/20 1st Firmagon injection.

     
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    Old 06-28-2021, 02:07 PM   #64
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    Re: How dire is this path report. Gleason 5+4

    Yes. ADT would definitely buy you time!

    Jim

     
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    Old 07-08-2021, 01:55 PM   #65
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    Update on my case: I'm going crazy! Last Friday I saw one of the very experienced prostate surgeons at Fox Chase Cancer Center in Philly on Friday. He too strongly recommend surgery as my best bet. First, which I agreed too, is that he wants me to get an MRI (I've only had a CT and bone scans). He wants to make sure that there's no cancer invasion in the bladder or bowel. I just spoke to my local Rad Oncologist and he strongly disagrees with the surgeon (as did my local uro surgeon with the earlier UPENN doc's recommendation for surgery). The Rad doc didn't understand what rational the surgeon has given my advanced disease. He said he's not following the NCCN consensus guidelines. The Rad doc suggested that I see the head of Rad Oncology at Fox Chase. I just made an appointment to see him on Aug. 4th, the soonest appm't he had. All very frustrating. 2 docs push hard for radiation and 2 other docs push hard for surgery. All four make compelling arguments. As I mentioned before I'd love to avoid surgery, especially if the OS is about the same with a bonus of less side-effect.

    -John
    __________________
    57 yo, family history of PCa, PSA 5.7, Free PSA 8.43%, DRE Neg, 5/26/21 Biopsy: Gleason 9, Grade 5, 16 of 20 cores positive mix of 5+4 and 4+5. Stage IIIc, cT2NxMx, CT shows a 3 cm x 2 cm diseased pelvic lymph node, Bone scan neg, 6/16/20 1st Firmagon injection.

     
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    Old 07-09-2021, 05:49 AM   #66
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    Re: How dire is this path report. Gleason 5+4

    You're in a tough spot. Keep doing what you are doing.

    At a point, and I think you will know, stop the information gathering and just be with it for a while. Avoid the temptation to decide to get beyond where you are now emotionally.

    There is an answer for you in all this homework. It will show up. A suggestion is to set aside your concern for side effects. Consider your choice around which has the possibility of being the most effective against the cancer. With that view in mind, then go back to consider the side effects.

    They really are two tracks in the consideration process.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months
    7-9-21 PSA less than 0.02; zero club 5yrs

     
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    Old 07-10-2021, 02:33 AM   #67
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    Re: How dire is this path report. Gleason 5+4

    Instead of thinking of it as frustrating think of it as a good thing to be able to have many different options. Too many is better than none. You are getting different opinions because they are all valid. Many of us wish this was a “perfect science” where you plug your stats into a computer and it spits out the right answer - but it’s not to that point yet (and may never be).
    __________________
    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 - 6 week follow-up PSA is 0.08
    6/2021 - 12 week follow-up PSA is 0.06

     
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    Old 07-20-2021, 01:50 PM   #68
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    Re: How dire is this path report. Gleason 5+4

    I can speak from some experience on the various treatments, having had several, though I am not a Gleason 9. I had a PSA of over 30, with a "rock hard" prostate on DRE. On biopsy 21 of 24 cores were positive, at Gleason 7 (4+3) with tertiary 8 in one core. Mine had seminal vesicle involvement with extensive neural invasion and extraprostatic extension to boot. MRI showed pretty heavy involvement. Bone and CT scans were negative.

    Met with a team of doctors at MGH - URO (Chief of Urological Oncology), RO (Chief of Radiation Oncology), MO (Director of Infusion Center), and all of their interns. 7 of them in the room with my wife and me. All 3 gave summations of their specific treatment. RO went first, gave his spiel and finished with "I think it has to come out." MO followed with the same result, followed by the URO. They had all previously reviewed the tests, results, and scans and came to the same conclusion before they walked in the door. My wife and I were both surprised at their candor, but they all agreed that it gave me the best chance to put it into remission given that it was aggressive. The RO and MO said they would be there after the RP in case additional treatments were necessary

    It came out, and the path report was far from pretty (margin at the ink), but no lymph nodes were positive. Problem was the PSA only dropped so far, meaning there was some left behind, probably in one of the lymph nodes they didn't take (they did 7). After 8 weeks, we were still at 0.17. Immediately got a shot of Lupron and scheduled 38 rounds of EBRT starting 6 weeks later. This started 6 years ago this month, with radiation completed on St. Patrick's Day 2016. PSA has been stable at <0.1 and there have been no complications since. I had great doctors who I felt extremely comfortable with and they went into great detail about treatments.

    Based on my experience, if only one of the lymph nodes is positive, I'd take it out to give another shot at treatments after. However, the decision obviously is complicated and everybody's mind set is different. The takeaway from all of this is that you need to find the doctors that you are the most comfortable with, period. Ones who will take their time to explain everything in great detail, giving you the pros and cons, and a sufficient amount of information, to enable you to make the right decision for you, since you have to live with the decision afterward.

    Mike

     
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    Old 07-20-2021, 07:07 PM   #69
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    Re: How dire is this path report. Gleason 5+4

    Quote:
    Originally Posted by john_ct1 View Post
    Update on my case: I'm going crazy! ...
    -John
    You might want to call the surgeon and ask him about the points I raised in post #62. If he has a convincing answer, please share it. If he does not, that reinforces the strong case, IMHO, for radiation as recommended by the radiation oncologists you have consulted.

    Good luck!

    Jim

     
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    Old 07-20-2021, 07:22 PM   #70
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    Quote:
    Originally Posted by mikeg1961 View Post
    I can speak from some experience on the various treatments, having had several, though I am not a Gleason 9. I had a PSA of over 30, with a "rock hard" prostate on DRE. On biopsy 21 of 24 cores were positive, at Gleason 7 (4+3) with tertiary 8 in one core. Mine had seminal vesicle involvement with extensive neural invasion and extraprostatic extension to boot. MRI showed pretty heavy involvement. Bone and CT scans were negative.

    Met with a team of doctors at MGH - URO (Chief of Urological Oncology), RO (Chief of Radiation Oncology), MO (Director of Infusion Center), and all of their interns. 7 of them in the room with my wife and me. All 3 gave summations of their specific treatment. RO went first, gave his spiel and finished with "I think it has to come out." MO followed with the same result, followed by the URO. They had all previously reviewed the tests, results, and scans and came to the same conclusion before they walked in the door. My wife and I were both surprised at their candor, but they all agreed that it gave me the best chance to put it into remission given that it was aggressive. The RO and MO said they would be there after the RP in case additional treatments were necessary

    It came out, and the path report was far from pretty (margin at the ink), but no lymph nodes were positive. Problem was the PSA only dropped so far, meaning there was some left behind, probably in one of the lymph nodes they didn't take (they did 7). After 8 weeks, we were still at 0.17. Immediately got a shot of Lupron and scheduled 38 rounds of EBRT starting 6 weeks later. This started 6 years ago this month, with radiation completed on St. Patrick's Day 2016. PSA has been stable at <0.1 and there have been no complications since. I had great doctors who I felt extremely comfortable with and they went into great detail about treatments.

    Based on my experience, if only one of the lymph nodes is positive, I'd take it out to give another shot at treatments after. However, the decision obviously is complicated and everybody's mind set is different. The takeaway from all of this is that you need to find the doctors that you are the most comfortable with, period. Ones who will take their time to explain everything in great detail, giving you the pros and cons, and a sufficient amount of information, to enable you to make the right decision for you, since you have to live with the decision afterward.

    Mike
    Thanks for the feedback Mike. I had my MRI today. Will talk again to the surgeon tomorrow.
    How did you tolerate your treatments... RP, RT & ADT? Are you still on ADT?

    -John

     
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    Old 07-21-2021, 05:57 AM   #71
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    Re: How dire is this path report. Gleason 5+4

    I have had no issues at all. It was a little unusual though, as the doc did a laparoscopic surgery, but manually, not robotic, which meant a little longer for the incision healing. For the radiation, had to drink a bunch of water to fill the bladder, to protect it from the EBRT. They also did just a short course of Lupron (6 months), as they wanted to see the results after the treatment. If it starts rearing its ugly head again they can always put me back on it, but so far so good. At last visit, MO said he was surprised we're over 5 years out without additional recurrence, which wasn't exactly comforting to hear.

    Mike

     
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    Old 07-21-2021, 11:18 AM   #72
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    I just received the report from yesterday's MRI (see below). It looks like my 6 weeks on ADT shrunk down my one enlarged 3cm x 5cm pelvic lymph node. It looks like there's no surprises. Just glad to see no obvious metastasis identified by this MRI. The urologist at Fox Chase still recommends RP. I have an appointment in 2 weeks with a RO, also at Fox Chase, for another opinion.


    INDICATION: Prostate cancer, assess for high risk disease.

    COMPARISON: None available the time of study review.

    FINDINGS: Multiparametric MR imaging of the prostate was performed on a 3T
    system without endorectal
    coil before and after intravenous injection of 15 (mL) of Dotarem without
    reported complication.
    3D reformatted images of the prostate gland were performed on a separate
    workstation.


    PROSTATE SIZE: 4.2 x 3.2 x 2.9 cm, 18.4 g

    PERIPHERAL ZONE:

    There is a large area of ill-defined T2 hypointensity involving most of the
    right peripheral zone
    from apex to base, and extending across midline to involve a large portion
    of the left peripheral
    zone mid gland base, which corresponds to the patient's biopsy proven tumor.
    It measures
    approximately 3.2 x 1.1 x 1.5 cm and has marked restricted diffusion. This
    is consistent with a
    PI-RADS 5 lesion. The lesion makes a broad base of contact with the capsule,
    which is a risk factor
    for microscopic extension of disease beyond the capsule, but there is no
    evidence of gross
    extracapsular extension.


    TRANSITION ZONE:

    The background transition zone is moderately heterogeneous, with some
    portions involved with the
    lesion described above.

    ADDITIONAL FINDINGS:

    Seminal vesicles: Normal.

    Urinary bladder: The urinary bladder demonstrates marked wall thickening
    with areas of abnormal
    restricted diffusion along the left anterior bladder wall. There is no
    obvious underlying mass or
    abnormal area of enhancement. Correlate for potential cystitis..

    Bones: No suspicious osseous lesion.

    Partially imaged bowel: Normal.

    Lymph nodes: No pathologically enlarged pelvic lymph nodes.

    Peritoneum: There is trace pelvic ascites, nonspecific.

    Other finding: None.


    IMPRESSION:

    1. There is a large PI-RADS 5 lesion involving most of the right peripheral
    zone that cross midline
    to involve a large portion of the left peripheral zone from midgland to
    base, and portions of the
    transitional zone. This corresponds to the biopsy proven tumor. The lesion
    makes a broad base of
    contact with the capsule, which is a risk factor for microscopic extension
    of disease beyond the
    capsule, but there is no evidence of gross extracapsular extension.
    2. No findings suspicious for metastatic disease in the pelvis.
    3. The urinary bladder demonstrates marked wall thickening with areas of
    abnormal restricted
    diffusion along the left anterior bladder wall. There is no obvious
    underlying mass or abnormal area
    of enhancement. Correlate for potential cystitis.
    __________________
    57 yo, family history of PCa, PSA 5.7, Free PSA 8.43%, DRE Neg, 5/26/21 Biopsy: Gleason 9, Grade 5, 16 of 20 cores positive mix of 5+4 and 4+5. Stage IIIc, cT2NxMx, CT shows a 3 cm x 2 cm diseased pelvic lymph node, Bone scan neg, 6/16/20 1st Firmagon injection.

     
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    Old 07-21-2021, 11:52 AM   #73
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    Re: How dire is this path report. Gleason 5+4

    Very useful information.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months
    7-9-21 PSA less than 0.02; zero club 5yrs

     
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    Old 07-21-2021, 11:58 AM   #74
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    Quote:
    Originally Posted by mikeg1961 View Post
    I have had no issues at all. It was a little unusual though, as the doc did a laparoscopic surgery, but manually, not robotic, which meant a little longer for the incision healing. For the radiation, had to drink a bunch of water to fill the bladder, to protect it from the EBRT. They also did just a short course of Lupron (6 months), as they wanted to see the results after the treatment. If it starts rearing its ugly head again they can always put me back on it, but so far so good. At last visit, MO said he was surprised we're over 5 years out without additional recurrence, which wasn't exactly comforting to hear.

    Mike
    Keep up the good work Mike!
    __________________
    57 yo, family history of PCa, PSA 5.7, Free PSA 8.43%, DRE Neg, 5/26/21 Biopsy: Gleason 9, Grade 5, 16 of 20 cores positive mix of 5+4 and 4+5. Stage IIIc, cT2NxMx, CT shows a 3 cm x 2 cm diseased pelvic lymph node, Bone scan neg, 6/16/20 1st Firmagon injection.

     
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