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  • 39yo with Gleason 9...UPDATES

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    Old 06-04-2021, 12:27 PM   #1
    39cancer
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    39yo with Gleason 9...UPDATES

    So, had my RP 8 days ago and got the path back today. Cancer had escaped the capsule, as we expected, so the surgeon had been a little more aggressive and the margins came back negative. So that's good. There had been one suspicious lymph node on the MRI and we ended up with four of 23 having cancer cells, so that's not as good. Confirmed gleason 9.

    I was given two options, one was to wait three months and check the PSA. The second was to start Lupron. I'd reeeeeally love to give it time and keep my fingers crossed, but I'm choosing the Lupron. No reason to not be aggressive I figure. So two years of that in my future. Doc also suggested some radiation to the pelvic area once things have healed from the surgery - not sure on the details of what this would be.

    I asked him for his opinion on my prognosis and he said the 10-15 year rate for someone like me is 80-85%, which are odds I can live with. I don't know if that lines up with all the studies, but in our research it's been hard to pin down what we're looking at with numbers ranging anywhere from 30-90%. So being towards the top end of that is definitely encouraging.

    As far as recovery from the RP goes, I'm doing pretty well. Catheter was miserable but was only six days. Had it removed two days ago and I've had pretty rare leakage and only when getting up from laying down. All the pelvic floor muscles still feel like they've been beaten with a hammer, so haven't even really been able to recruit them to help yet.

    Anyway, overall feeling pretty damn good about all of it. And thanks to all the people here who've reached out to me throughout the process and to everyone posting all the valuable information on this board. It has been a valuable resource for sure.
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.
    08/25/21: PSA 0.08. 3rd Firmagon
    09/15/21: Started IMRT
    09/30/21: PSA undetectable. First Lupron injection.

     
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    Old 06-04-2021, 01:38 PM   #2
    Prostatefree
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by 39cancer View Post
    So, had my RP 8 days ago and got the path back today. Cancer had escaped the capsule, as we expected, so the surgeon had been a little more aggressive and the margins came back negative. So that's good. There had been one suspicious lymph node on the MRI and we ended up with four of 23 having cancer cells, so that's not as good. Confirmed gleason 9.

    I was given two options, one was to wait three months and check the PSA. The second was to start Lupron. I'd reeeeeally love to give it time and keep my fingers crossed, but I'm choosing the Lupron. No reason to not be aggressive I figure. So two years of that in my future. Doc also suggested some radiation to the pelvic area once things have healed from the surgery - not sure on the details of what this would be.

    I asked him for his opinion on my prognosis and he said the 10-15 year rate for someone like me is 80-85%, which are odds I can live with. I don't know if that lines up with all the studies, but in our research it's been hard to pin down what we're looking at with numbers ranging anywhere from 30-90%. So being towards the top end of that is definitely encouraging.

    As far as recovery from the RP goes, I'm doing pretty well. Catheter was miserable but was only six days. Had it removed two days ago and I've had pretty rare leakage and only when getting up from laying down. All the pelvic floor muscles still feel like they've been beaten with a hammer, so haven't even really been able to recruit them to help yet.

    Anyway, overall feeling pretty damn good about all of it. And thanks to all the people here who've reached out to me throughout the process and to everyone posting all the valuable information on this board. It has been a valuable resource for sure.
    Good work! Cancer sucks, but you are taking it on big time! Be patient with the recovery. Take a mental break as well while your body recovers. I like you aggressive approach and making use of all your resources.
    __________________
    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, upgraded to G3+4, Tumor 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 06-04-2021, 01:38 PM   #3
    Michael F
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    Re: 39yo with Gleason 9...UPDATES

    Hi 39! Very sorry that you were diagnosed with PCa at such a young age. Conversely, very glad that your PCa was discovered early and you are now "On The Good Side of RP!"

    IMO, the immediate discussions to have with your Uro Oncology Team is:

    - What are the implications of High Grade PCa with Low PSA?

    - Does/will this respond to Androgen Deprivation Therapy (ADT)?

    - In the event of future recurrence/progression, will the new imaging technologies (PSMA PET imaging. 68Ga-PSMA-11 and 18F-DCFPyL) be able to pinpoint locate the site(s) of recurrent PCa?

    Congrats on being liberated from the catheter! Being young, you will bounce back from surgery quickly. It is very important to take it easy unitl cleared by your URO Surgeon. Healing is a process that requires time. The rate of healing can not be accelerated.

    Best wishes moving forward for all good news and good health!

    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 114 Months Post Op: Mean = 0.023 (n = 27)
    LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%) ED = present

     
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    Old 06-04-2021, 01:51 PM   #4
    DjinTonic
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    Re: 39yo with Gleason 9...UPDATES

    Hi 39. Congrats on getting through your RP! Take things easy and follow all you discharge instructions!

    I'm curious about your post-op path report. Was the G9 confirmed as a (5+4) like your worst biopsy lesion, or were you downgraded to (4+5)?

    With a bit of luck, any remaining PCa is confined to your pelvic nodes, and they can be zapped after your recovery period.

    Please keep us posted, and ask any questions you have to help your recovery.

    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.)

     
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    Old 06-04-2021, 02:09 PM   #5
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by DjinTonic View Post
    Hi 39. Congrats on getting through your RP! Take things easy and follow all you discharge instructions!

    I'm curious about your post-op path report. Was the G9 confirmed as a (5+4) like your worst biopsy lesion, or were you downgraded to (4+5)?
    We're not sure. I forgot to ask, but there's a note on my portal regarding our conversation that says 4+5. I'll ask directly to clear that up.
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.
    08/25/21: PSA 0.08. 3rd Firmagon
    09/15/21: Started IMRT
    09/30/21: PSA undetectable. First Lupron injection.

     
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    Old 06-04-2021, 02:51 PM   #6
    DjinTonic
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by 39cancer View Post
    We're not sure. I forgot to ask, but there's a note on my portal regarding our conversation that says 4+5. I'll ask directly to clear that up.
    Quote:
    Originally Posted by 39cancer View Post
    We're not sure. I forgot to ask, but there's a note on my portal regarding our conversation that says 4+5. I'll ask directly to clear that up.
    You may be able to view your complete post-op path report on your portal; otherwise request a written copy. It's an important document to keep for your records.

    A G9 downgrade to (4+5) is good. I'm not sure if the "escaped the prostate" referred solely to the positive lymph nodes, or other adverse findings in addition. You mentioned no positive margins -- also very good. Your report will also state the presence or absence of seminal vesicle invasion (SVI) and extraprostatic extension (EPE). The status of lymphovascular invasion (LVI) will also be noted, although it refers to infiltration of the cancer into the fine blood and lymph vessels within the removed prostate.

    There should be a path staging in the report as well, such as:

    pT2 N1 if the only adverse finding was the positive nodes (N1)
    pT3a N1 if there was EPE
    pT3b N1 if there was SVI (with or without EPE)

    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.)

     
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    Old 06-04-2021, 03:16 PM   #7
    IADT3since2000
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    Re: 39yo with Gleason 9...UPDATES

    Hi 39cancer,

    You have now struck a mighty blow against the cancer. Here’s to success!

    Regarding your questions:
    Quote:
    Originally Posted by 39cancer View Post
    … I was given two options, one was to wait three months and check the PSA. The second was to start Lupron. I'd reeeeeally love to give it time and keep my fingers crossed, but I'm choosing the Lupron. No reason to not be aggressive I figure….
    If there are any unremoved metastases, the Lupron should knock them back, though not wipe them out entirely, as you probably know. The Lupron will “hold the fort” until it can work with the later pelvic radiation; there is a synergistic effect for ADT (Lupron here) plus radiation.

    Did the doctor go over side effects of ADT and how to prevent or minimize them? That discussion should happen, but too often it does not, especially with urologists.The use of these countermeasures is really important for many of us, though a small minority escape with minimal or no side effects. Side effects tend to be stronger in younger men, probably because the shift from abundant androgens to low androgens, especially testosterone, is more stark than for older men whose testosterone levels have often already decreased substantially. A number of books do a good job explaining likely side effects, their time of onset, their range of burden to the patient, and countermeasures. Two books that I particularly like for this are “The Key to Prostate Cancer,” 2018 Dr. Mark Scholz, MD, and twenty nine others, especially Chapter 30 (note that ADT is called TIP – Testosterone Inactivating Pharmaceuticals – in the book), and “Androgen Deprivation Therapy,” 2018, Wassersug, Walker and Robinson. One drug that helps with key ADT side effects is the old diabetes drug, dirt cheap, metformin; it is addressed in “The Key” on pages 232-233 and 273. The study of lifestyle plus metformin by Nobes and colleagues indicated a really impressive impact of metformin on ADT side effects (abstract available at https://pubmed.ncbi.nlm.nih.gov/21933330/ ; the now retired expert medical oncologist Dr. Charles “Snuffy” Myers delivered a most interesting talk about it at the 2016 Conference on Prostate Cancer, and a DVD with the talk is available from the Prostate Cancer Research Institute in case you want extra details.

    Quote:
    Originally Posted by 39cancer View Post
    … So two years of that in my future. Doc also suggested some radiation to the pelvic area once things have healed from the surgery - not sure on the details of what this would be….
    Typically a dose of radiation is given to the pelvis that is well below the dose used to knock out cancer in the prostate. The dose can be lower because metastatic spots, if any, will be much smaller than the prosate. A variety of techniques are available; my impression is that IMRT is often used. It appears that metformin is also synergistic with radiation, though the trial that will hopefully provide proof is not yet complete.

    Quote:
    Originally Posted by 39cancer View Post
    … I asked him for his opinion on my prognosis and he said the 10-15 year rate for someone like me is 80-85%, which are odds I can live with. I don't know if that lines up with all the studies, but in our research it's been hard to pin down what we're looking at with numbers ranging anywhere from 30-90%. So being towards the top end of that is definitely encouraging….
    Yes, that’s a pretty good prospect, but keep in mind that the doctor has to base his prognosis on history, and so much progress is being made that you are very likely to benefit for advances in the near future.

    Quote:
    Originally Posted by 39cancer View Post
    Anyway, overall feeling pretty damn good about all of it. And thanks to all the people here who've reached out to me throughout the process and to everyone posting all the valuable information on this board. It has been a valuable resource for sure.
    I’m sure all of our regular contributors appreciate your thanks, as I do.

    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 06-04-2021, 07:50 PM   #8
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by DjinTonic View Post
    There should be a path staging in the report as well, such as:

    pT2 N1 if the only adverse finding was the positive nodes (N1)
    pT3a N1 if there was EPE
    pT3b N1 if there was SVI (with or without EPE)

    Djin
    Like I said, haven't seen the report yet but from the phone call it sounded like it was the same as the MRI indicated, which was pT3b.

     
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    Old 06-05-2021, 08:09 PM   #9
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by DjinTonic View Post

    There should be a path staging in the report as well, such as:

    pT2 N1 if the only adverse finding was the positive nodes (N1)
    pT3a N1 if there was EPE
    pT3b N1 if there was SVI (with or without EPE)

    Djin
    Ok, got the official report and it IS 4+5. Staging ended up being pT3a. Apparently the seminal vesicle that was suspect on the MRI ended up being clear. So yeah, outside the extra lymph node involvement i'm pretty happy with it.
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.
    08/25/21: PSA 0.08. 3rd Firmagon
    09/15/21: Started IMRT
    09/30/21: PSA undetectable. First Lupron injection.

     
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    Old 06-06-2021, 06:01 AM   #10
    Prostatefree
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    Re: 39yo with Gleason 9...UPDATES

    All good to know. I really appreciated that aspect of surgery.

     
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    Old 06-06-2021, 10:29 PM   #11
    Insanus
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by 39cancer View Post
    Ok, got the official report and it IS 4+5. Staging ended up being pT3a. Apparently the seminal vesicle that was suspect on the MRI ended up being clear. So yeah, outside the extra lymph node involvement i'm pretty happy with it.
    I’d trade a positive SV for the positive node.

     
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    Old 06-10-2021, 05:28 PM   #12
    39cancer
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    Re: 39yo with Gleason 9...UPDATES

    Rather than start a new thread, figured I'd ask here. How many of you guys with had RPs dealt with pelvic floor pain after surgery? I basically need a donut pillow all the time. And I've got these random pains that will shoot through my penis and then some pretty intense spasms/cramps in the rectum area. My assumption is that since I'm only two weeks out, this is pretty much normal. But holy balls it's been the worst part of this for me and I don't really remember it being discussed. Continence-wise I'm already going without pads or anything, so I guess it's not all bad.
    __________________
    40 years old
    09/20: Nodule found but not considered a problem. PSA 1.5.
    03/21: MRI: PIRADS 5, SV+, LN1. Biopsy: Gleason 9 (5+4). PSA still 1.5.
    05/21: RP performed. Final staging pT3a, LN1, M0. Negative margins. Gleason 9 (4+5). 4 positive nodes
    06/16/21: Started ADT - first Firmagon injection
    07/21/21: PSA 0.08. 2nd Firmagon injection. Started Zytiga.
    08/25/21: PSA 0.08. 3rd Firmagon
    09/15/21: Started IMRT
    09/30/21: PSA undetectable. First Lupron injection.

     
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    Old 06-18-2021, 06:52 AM   #13
    redbelly7
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    Re: 39yo with Gleason 9...UPDATES

    I just saw a new drug came out to target Prostate cancer cells in the entire body for metastatic kind. I forget whether they used chemo to attach the cancer or radiation, but it's ground breading. I'd call M D Anderson in TX, they probably know. or google for your dr and find a place that can do it.

     
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    Old 06-19-2021, 06:55 PM   #14
    music4ever
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    Re: 39yo with Gleason 9...UPDATES

    Quote:
    Originally Posted by 39cancer View Post
    Rather than start a new thread, figured I'd ask here. How many of you guys with had RPs dealt with pelvic floor pain after surgery? I basically need a donut pillow all the time. And I've got these random pains that will shoot through my penis and then some pretty intense spasms/cramps in the rectum area. My assumption is that since I'm only two weeks out, this is pretty much normal. But holy balls it's been the worst part of this for me and I don't really remember it being discussed. Continence-wise I'm already going without pads or anything, so I guess it's not all bad.
    Yeah two weeks out you sound like you are doing quite well. It was uncomfortable for me to sit for about 8-10 weeks. I sat in my most comfortable recliner whenever possible and that helped. The nerves in pelvic area need time to heal. Good luck - sounds like you are doing great!
    __________________
    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 06-20-2021, 07:07 AM   #15
    Prostatefree
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    Re: 39yo with Gleason 9...UPDATES

    Are they bladder spasms?

    Drink plenty of water. The temptation is to subconsciously manage incontinence by drinking less water.

     
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