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    Old 04-01-2022, 07:01 AM   #1
    gabow
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    New User - Active Surveillance Changes

    New user here looking for some comments or opinions. I'm a 63 YO who has always been a fitness person all my life, I wouldn't say fanatic (although at times I have been). But I've consistently stayed in great shape my entire life. No weight issues, no high blood pressure, no cholesterol problems, and I take no medications at all.

    My prostate history is that back in 2016, my PSA went to 4.4. So my primary care physician sent me to the urologist, who performed a biopsy. By then we had made it to 2017, my PSA was 5.4. The biopsy was a TRUS and showed a Gleason of 6 in one core on the right base. Since that was done at a small town location without advanced MRI or other capabilities, I moved to the University of MI Medical in Ann Arbor for consultation.

    They sent me for an MRI in late 2017. Those MRI findings supported the biopsy, pirads 2. So we watched and waited.

    In late 2018, my PSA went to 8.2. So early 2019 another MRI and MRI guided biopsy.

    2019 MRI results: Pirads 2, a few nodules but appearance is not significantly changed from the prior study.

    2019 biopsy results - Gleason 6 in two cores. So we continued active surveillance.

    2020 - My regular PSA tests stayed around 8 with little change. In late 2020 we did another MRI. Here are the full results of that MRI.

    FINDINGS:
    The prostate gland measures: 3.5 x 5.0 x 4.0cm (Volume: 36 mL).

    There are multiple circumscribed nodules throughout the transitional zone and median
    lobe of the gland compatible with BPH nodules. There are no areas of abnormally
    restricted diffusion or suspicious enhancement. Maximum PI-RADS score: 2.

    BPH: mild
    Median lobe: mildly enlarged.
    The length of the membranous urethra is 14mm on coronal imaging.
    Nodes: No enlarged pelvic lymph nodes.
    Bones: No evident osseous metastasis.
    Extraprostatic Findings: Unremarkable.

    2021 - My regular PSA tests still hovered around 8, and based on past MRIs and Biopsies we continued Active Surveillance.

    Feb 2022 - My PSA jumped to 12.8, we immediately scheduled another MRI and in the meantime had another PSA to verify the results. The PSA, which was about 3 weeks after the last one was 15. Then we had the MRI. This MRI was done at a different hospital, different machine, and different radiologist. Here are the full results of that MRI.

    Findings:
    The prostate gland measures: 4.9 x 3.8 x 3.7 cm (volume: 36 mL).

    PI-RADS 2: Geographic inflammation within the right peripheral zone.
    This can obscure underlying lower-risk lower-volume prostate cancer.
    No specific features for high-risk prostate cancer. There are numerous
    circumscribed transition zone nodules and low-risk peripheral zone
    abnormalities (PI-RADS 2).

    The median lobe is not significantly enlarged.
    The length of the membranous urethra is 1.6 cm on coronal imaging.
    Nodes: No enlarged pelvic lymph node.
    Bones: No aggressive osseous lesion.

    2022 - With that information, I now have another biopsy scheduled for May 4th. This will be a transperineal biopsy.

    So my PSA results seem to be going up, but my MRIs don't show significant differences and still showing pirads 2. To my eye (inexperienced as it is), the only real change is that they used the term "inflammation," but that might just be the difference in radiologists. I have some problems, mostly with pain urinating and/or feeling like I need to urinate all the time. All of my symptoms are annoying, but not terrible.

    Obviously I'll wait for my next biopsy to see what that offers up. From reading a lot of messages here it seems that my case is a bit different than most. I see very few people who have PSAs as high as 8 for years with little change, nothing significant showing on MRI and gleason 6. Of course, I'm not complaining, all that is great. Just curious as to what others think and hopefully nothing is being missed. I've asked about the possibility of prostatitis, but the urologist says that most patients have much worse symptoms than I do.

    Also, just another bit of info. I'm not a bike, horseback, motorcycle, or even stationary bike person...

    Thanks, G

     
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    Old 04-02-2022, 12:10 AM   #2
    music4ever
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    Re: New User - Active Surveillance Changes

    Hi G - welcome to the boards. Others here will probably have theories on why your PSA is rising and they will chime in. My only question is have you talked to your RO about doing a PSMA PET scan on you? A PSMA PET is similar to an MRI but is specifically designed to highlight prostate cancer in your body. It’s a fairly new test and not all hospitals have the technology. U of MI Ann Arbor can do one for sure. (I’ve been going there for my salvage radiation treatments). Best of luck!
    __________________
    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, 6/21 - PSA 0.06, 9/21 - PSA 0.09 - 6 month follow-up, 10/21 - PSA 0.07, 12/21 - PSA 0.11, 2/22 - PSA 0.15
    3/2022 - Salvage Radiation IMRT (20 fractions) @U of MI, 3 month Lupron shot.

     
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    Old 04-02-2022, 05:14 AM   #3
    Prostatefree
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    Re: New User - Active Surveillance Changes

    Have you used testosterone or testosterone stimulating supplements? Or, have you used a lower grade hormone based hair growth/prostate medication like Finasteride? Both, can stimulate smaller and more aggressive prostate cancer.

    MRIs are a newer technology for PC and still fallible. Biopsies are also fallible missing large portions of the prostate.

    Without BPH your PSA can be argued to be more reflective of cancer than BPH. It's consistent rise is also bothersome. Inflammation symptoms typically fluctuate. PSA is our most reliable tool in our tool box. Biopsies are essential.

    You may have a smaller and more aggressive cancer making it harder to find.

    Do you have a family history of PC, breast cancer or an ethnic risk factor?

    Keep doing what you are doing.

     
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    Old 04-02-2022, 05:38 AM   #4
    gabow
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by Prostatefree View Post
    Have you used testosterone or testosterone stimulating supplements? Or, have you used a lower grade hormone based hair growth/prostate medication like Finasteride? Both, can stimulate smaller and more aggressive prostate cancer.

    MRIs are a newer technology and still fallible. Biopsies are also fallible.

    Without BPH your PSA can be argued to be more reflective of cancer than BPH. It's consistency is also bothersome.

    You may have a smaller and more aggressive cancer making it hard to find.
    I have not taken anything related to testosterone. I do take a few supplements, I take turmeric and also true niagen. Both of which I have taken for 4+ years.

    We'll see what the biopsy in May says and go from there. I just want to make sure I have a good list of questions and don't overlook anything.

     
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    Old 04-02-2022, 05:56 AM   #5
    RRabbit
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    Re: New User - Active Surveillance Changes

    With painful urination and constant feeling of need to pee, you could have a UTI or prostatitis. That would explain the rise in PSA. When I first was sent to a urologist it was due to annual checkup showing PSA of 5.4. First thing Uro did was another PSA - it came back 20.2! I felt like I had a subclinical UTI - mild burning, excessive need but not an obvious infection. Two rounds of antibiotics later it was back down to 5.3, then fell as low as 4.0 before jumping back up.
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    Old 04-02-2022, 06:37 AM   #6
    gabow
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by RRabbit View Post
    With painful urination and constant feeling of need to pee, you could have a UTI or prostatitis. That would explain the rise in PSA. When I first was sent to a urologist it was due to annual checkup showing PSA of 5.4. First thing Uro did was another PSA - it came back 20.2! I felt like I had a subclinical UTI - mild burning, excessive need but not an obvious infection. Two rounds of antibiotics later it was back down to 5.3, then fell as low as 4.0 before jumping back up.
    Yes, that is something I asked about. I think the PA I spoke with was concerned that if she indicated that it could be prostatitis I would possibly opt out of the biopsy. So she downplayed that and pushed the narrative that it was more likely to be cancer.

    But that was never in my mind, I know I need another biopsy, especially since it's been a bit of time since my last one. It was probably time for another one anyway. I was thinking more along the lines of, why not schedule a biopsy and in the mean time do a round of antibiotics. I was also glad they wanted to do a transperineal as I've read where than can access places that are more difficult with transrectal, not to mention safer. Apparently UofM is going all transperineal now and phasing out transrectal. If there's any change in cancer from my previous two cores of gleason 6, I certainly want to know that and need to ferret it out.

    This active surveillance truly needs to be active! If the biopsy comes back the same as previous, then I'll push more questions about prostatitis and ask questions about PSMA PET or whatever else I can find to ask about. If the biopsy comes back with more, then that drives a different narrative about treatments, etc.

    From reading a lot on this board (glad I found this place!) I have already learned that I need to ask questions about genomic test and possibly 2nd opinions on the biopsy. So this board has already been a huge help! THANKS!

     
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    Old 04-02-2022, 07:09 AM   #7
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    Re: New User - Active Surveillance Changes

    You wrote that “I have some problems, mostly with pain urinating and/or feeling like I need to urinate all the time.”

    Do you have any retention issues? Difficulty urinating at night?

    Something’s going on, obviously. One thing that caught my non-medically trained eye was the repeated noting of lots of nodules in the medial and transition zones. There are procedures for urinary problems that would resolve those, *and* remove that specific tissue and you give a much better pathology look than a 12 sample biopsy. An option if your urinary problems warranted treatment on their own. It doesn’t sound like that’s the case, but keep the thought in your hip pocket.

    The other thought echos other posters. If the PSA is increasing but it looks like the prostate is relatively static, then you should want to exclude the possibility that the excess PSA is coming from elsewhere. That means some type of full body scan.

     
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    Old 04-02-2022, 07:21 AM   #8
    gabow
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by CentralPaDude View Post
    You wrote that “I have some problems, mostly with pain urinating and/or feeling like I need to urinate all the time.”

    Do you have any retention issues? Difficulty urinating at night?

    Something’s going on, obviously. One thing that caught my non-medically trained eye was the repeated noting of lots of nodules in the medial and transition zones. There are procedures for urinary problems that would resolve those, *and* remove that specific tissue and you give a much better pathology look than a 12 sample biopsy. An option if your urinary problems warranted treatment on their own. It doesn’t sound like that’s the case, but keep the thought in your hip pocket.

    The other thought echos other posters. If the PSA is increasing but it looks like the prostate is relatively static, then you should want to exclude the possibility that the excess PSA is coming from elsewhere. That means some type of full body scan.
    I don't seem to have much problem with retention, maybe a little, and sometimes a bit of difficulty urinating. I'm sure it's gotten worse over time, but since it's gradual it's hard to tell and you get used to the way things are. I can put things out of my mind and ignore them, but it's not so bad that it's a big problem.

    But thanks so much for that info! I did not know there were procedures to remove those nodules! Another win for this board and another thing to add to my list of questions. Thanks.

     
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    Old 04-02-2022, 12:32 PM   #9
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    Re: New User - Active Surveillance Changes

    I've been on active surveillance for 5 or 6 years. My PSA is in the low teens. In my case, it's probably due to the size of my prostate. As long as you keep doing MRIs and biopsies, and you have a Uro experienced in active surveillance, it is possible to be safe even with an elevated PSA.

    The nurse who very active in the AS program recently told me as the years pass, each AS program becomes more and more individualized. Whether it's safe to continue depends upon a range of factors. The key, in my opinion, is having a URO who specializes in prostate cancer and has a lot of experience with AS. If you're at Michigan, you've probably got an excellent URO, and if he/she thinks everything is fine I wouldn't sweat it because your PSA is 8.

     
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    Old 04-02-2022, 01:33 PM   #10
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    Re: New User - Active Surveillance Changes

    "Individualized" is OK, but I think it's also good to avoid being too "loosey-goosey"-- my uro/surgeon's term for the protocols at the opposite end from the strict ones.

    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.)...0.023 (4 yr. 6 mo.)

     
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    Old 04-02-2022, 02:31 PM   #11
    gabow
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by jorlo View Post
    Whether it's safe to continue depends upon a range of factors. The key, in my opinion, is having a URO who specializes in prostate cancer and has a lot of experience with AS. If you're at Michigan, you've probably got an excellent URO, and if he/she thinks everything is fine I wouldn't sweat it because your PSA is 8.
    Quote:
    Originally Posted by DjinTonic View Post
    "Individualized" is OK, but I think it's also good to avoid being too "loosey-goosey"-- my uro/surgeon's term for the protocols at the opposite end from the strict ones.
    Djin

    I agree with both, can't be loosey-goosey as all of this is serious business. At the same time I agree that if all the questions are addressed and it's vetted out, then continuing AS might be an option.

    I try to be very careful to not let myself or any of the team get complacent. I've been at this for 5 years with little change in my condition, now that we're seeing a change I'm trying to make sure we stay on top of it, do the right things, and ask the right questions. Which this thread is helping me do.

     
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    Old 04-02-2022, 08:01 PM   #12
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    Re: New User - Active Surveillance Changes

    I certainly agree with being diligent. I've probably had 10 or so biopsies (the first few were negative), including a saturation biopsy, and more MRIs than that. I get a PHI test (my URO likes that better than PSA) every 6 months and I've had a thorough genomic test. My point was that whether AS is safe varies based on, among other factors, biopsy results, number of biopsies showing those results, size of the prostate, family history, PSA/PHI scores, movement over time of those scores, etc. There are obvious cases at either end of the spectrum, but for many cases, it is, in my opinion, a judgment based on weighing all the available factors. And as time goes by, this body of data, that is unique to an individual, builds up. That's why the most important thing, in my opinion, is to get a top specialist. I got a second opinion soon after I was diagnosed, and eventually switched to a new URO.

     
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    Old 04-03-2022, 12:15 PM   #13
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    Re: New User - Active Surveillance Changes

    As far as “individualized” AS protocols for patients, I can tell you that is not the case at Johns Hopkins, where we have the strictest and most successful AS program on the planet.

    Everybody has the same testing schedule, and the same thresholds for triggering more immediate assessments.

    Since JH relies heavily on PSA Density as a trigger, and you have a normal size prostate with a high PSA, that would signal immediate concern. I would expect the transperineal biopsy as necessary, with possibly a Decipher test and possibly PSMA PET imaging as additional steps.

     
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    Old 04-03-2022, 12:20 PM   #14
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    Re: New User - Active Surveillance Changes

    Untrue Statement About Finastetide

    Hi Prostatefree and Board participants. The following statement about finasteride (generic Proscar) has been proven false:

    Quote:
    Originally Posted by Prostatefree View Post
    Have you used testosterone or testosterone stimulating supplements? Or, have you used a lower grade hormone based hair growth/prostate medication like Finasteride? Both, can stimulate smaller and more aggressive prostate cancer....
    This belief that finasteride (actually known as Propecia in the hair-growth formulation) stimulates more aggressive cancer was highly controversial for years, with some in the surgery community, including famed surgery pioneer and expert Patrick Walsh, a convinced and influential advocate for the stimulation position, but with some other prominent surgeons, especially highly respected urologist/researcher Ian Thompson from MD Anderson, leader of the Prostate Cancer Prevention Trial (PCPT) that focused on finasteride, and expert medical oncologists making strong arguments, fact based, for the view that finasteride was not only not a stimulant but actually made aggressive prostate cancer easier to spot while partially eliminating lower grade prostate cancer (GS-6 and below).

    Long-term follow up for the PCPT demonstrated that finasteride did not result in higher mortality, and indeed that ten year survival was several percentage points higher in the finasteride group. (See https://pubmed.ncbi.nlm.nih.gov/23944298/ and link to free copy of complete paper. Additional research can be found by going to www.pubmed.gov and using the search string - thompson i [au] AND finasteride AND long term .)

    The key error made by Walsh and others was to overlook the fact that finasteride shrinks the prostate by about a third, and that makes it easier for the same number of biopsy probes to find higher grade cancer that would be missed in a larger prostate because each probe has more area to "cover", making it less efficient. In other words, finasteride (or dutasteride), make the biopsy more efficient. I can explain it in more detail if anyone needs an expanded explanation. Also, by eliminating/minimizing BPH, these drugs make it more likely that any increase in PSA will be due to the remaining usual causes, either inflammation or cancer (or both)). In other words, by reducing "noise" in the PSA "signal", the pattern of PSA activity is a better clue, due to finasteride or dutasteride, to what is causing a PSA elevation.

    I have been on one or the other of these drugs since 2000. Though I believe I have been cured of prostate cancer, I am on dutasteride as part of my shield against recurrence.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - --
    22 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 04-03-2022, 02:50 PM   #15
    gabow
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by ASAdvocate View Post
    As far as “individualized” AS protocols for patients, I can tell you that is not the case at Johns Hopkins, where we have the strictest and most successful AS program on the planet.

    Everybody has the same testing schedule, and the same thresholds for triggering more immediate assessments.

    Since JH relies heavily on PSA Density as a trigger, and you have a normal size prostate with a high PSA, that would signal immediate concern. I would expect the transperineal biopsy as necessary, with possibly a Decipher test and possibly PSMA PET imaging as additional steps.
    Thanks for that ASA. I have the biopsy scheduled and am now actually quarantining myself as I don't want to have anything come up that delays that.

    As a result of this thread, I have on my list of questions to ask about both the PSMA PET and the Decipher test. Also on my list is to ask about sending the biopsy to Johns Hopkins for additional review.

    So duly noted all your points, thanks for being very clear and making sure I didn't miss any of that.
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    2019,PSA8.2,MRI Pirads 2,Trans/Median nodules,vol 36mL,Glea6,2 cores
    2020 PSA ~8,MRI Pirads 2,Trans/Median Nodules, Vol 36mL
    2022 PSA 12.8,15,MRI Pirads 2,Trans/Median Nodules,Peri zone abnormalities,Geographic inflammation right peri zone, Vol 36mL

     
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