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Thread: 54 years young, 2 months After RP surgery, Questions

  1. #1
    Newbie New User
    Join Date
    Aug 2019
    Posts
    3

    54 years young, 2 months After RP surgery, Questions

    Hey Guys,

    Thank you for all your support to my previous post "54 years young prostate cancer"

    Well I had the robotic Prostate surgery back on Sept 13th 2019.

    I'm doing pretty good, back to work, Incontinence is improving (Only 1 pad per day for minor dribbles.)

    My pathology report showed my cancer was worse then first diagnosed, 3TB, Gleason score 7 4+3 with minor pattern of 5, small crib form, seminal vessel Invasion.

    My questions:
    1. Is occasional bladder pain normal?
    2. My first PSA test came back as 0.10 should I be concerned?
    3. Is anyone else having problems sleeping thru the night? I wake up to pee every 2 hours like clockwork.

  2. #2
    Quote Originally Posted by MR B View Post
    Hey Guys,

    Thank you for all your support to my previous post "54 years young prostate cancer"

    Well I had the robotic Prostate surgery back on Sept 13th 2019.

    I'm doing pretty good, back to work, Incontinence is improving (Only 1 pad per day for minor dribbles.)

    My pathology report showed my cancer was worse then first diagnosed, 3TB, Gleason score 7 4+3 with minor pattern of 5, small crib form, seminal vessel Invasion.

    My questions:
    1. Is occasional bladder pain normal?
    2. My first PSA test came back as 0.10 should I be concerned?
    3. Is anyone else having problems sleeping thru the night? I wake up to pee every 2 hours like clockwork.
    I think you are only 7 weeks post surgery and you shouldn’t be trying to make evaluations for another 5-6 weeks.

    Based on PSA and pathology, radiation may be in your future.
    YOB 1957

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative.

    3/6/19. Pathology - Grade Group 4 Intraductal Carcinoma
    T3aNO, 1 mm EPE, GS8, 21 mm uni-focal tumor involved 10% of prostate.

    7 Nodes, SV, SM, PNI, and BNI were negative.

    LVI and Cribriform pattern present.

    Decipher .86 High Risk.

    Post Surgery PSA
    3/25/19 .03. (<1 month)
    4/25/19 <.03. (2 months)
    5/25/19 <.02. (3 months)
    9/10/2019. <.02. (6 months)
    11/27/2019. <.02. T<3. (9 months)

    3 Part Modality Treatment

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  3. #3
    Senior User
    Join Date
    May 2017
    Posts
    205
    MR B sorry to hear you had persistent PSA. I also had 0.1 at six weeks. I beg you to watch this video:

    https://www.youtube.com/watch?v=oWNKPhUjCXc Especially check out 17:10 through 17:44.

    Dr. McLaughlin talks about relatively young men who are otherwise healthy benefit the most from adjuvant radiation. There is a narrow window for a cure and if you miss it you've lost it. My doc had me on a plan where I monitor the PSA to see if it stays stable. It didn't stay stable. When it got to almost 0.2 I went on my own and had a RO start SRT with pelvic lymph node radiation and a fascia boost. I may have missed my window of opportunity because of my docs plan to "watch."

    1. Is occasional bladder pain normal?

    I had occasional bladder pain (3 out of 10 pain scale) until about 6 weeks. Don't know if it's normal but my doc said not to worry about it.

    2. My first PSA test came back as 0.10 should I be concerned?

    Yes, you should be concerned. If your doc does not do a regular ultra-sensitive PSA test then you should order one yourself. I had a test done every month. You want to know if your PSA is rising and you should take action at the first blip. Again, watch that video. I had to order my own uSensitive PSA and pay myself every month.

    3. Is anyone else having problems sleeping thru the night? I wake up to pee every 2 hours like clockwork.

    Yes, I had to pee about every 75 minutes at night for a long time. I actually left a notepad and pen in the bathroom next to the toilet and I wrote down the date and times when I got up to pee. For weeks I was stuck at about every 75 minutes. I entered the data in to a spreadsheet and tracked the times I got up to pee. After about eight weeks (I'm going off memory) the time between pee breaks started to lengthen. After about four months I was back to normal. If you start logging your pee times you can watch the intervals increase.

    Edit: I went back and watched that video again. Towards the end Dr. McLaughlin talked about radiation toxicity and MR planning. My RO did very precise MR planning for both the pelvic lymph nodes and the fascia boost. Dr. McLaughlin also mentions near the end of the video about not waiting until the PSA jumps to .2 because it will be too late. I guess my 0.197 is basically .2
    Last edited by Busby; 11-10-2019 at 05:11 AM.
    DOB 1961
    2010-05 2.42
    2015-07 7.0
    2015-08 5.4
    2016-02 6.2
    2016-09 7.86
    2017-02 7.2
    2017-05 5.65
    2017-06 biopsy 7 of 13 cores G6
    2017-10 7.11
    2018-04 7.47
    2018-11 11.80

    2019-01 Da Vinci RALP
    Pathology report:
    Final stage pT2C
    Histologic type: Acinar adenocarcinoma with focal mucinous features
    Grade: 3+4=7 35% pattern 4
    23% of prostate involved
    EPE-
    BNI-
    SVI-
    PNI+
    LVI+
    Margins focally positive [1-3 mm] 4 locations
    Cribriform pattern noted

    Roche ECLIA uPSA
    2019-03 0.133
    2019-04 0.116
    2019-05 0.143
    2019-06 0.140
    2019-07 0.183
    2019-08 0.197
    2019-08 Start Lupron/Casodex
    2019-09 Decipher score .49
    2019-10 0.007
    2019-10-14 Start salvage radiation 39 treatments 70.2Gy
    2019-12-06 Completed radiation

  4. #4
    Top User
    Join Date
    Aug 2016
    Posts
    1,937
    Did the PSA test have a <0.1 sign? There are several levels of testing sensitivity for post RP PSA tests. Look at our signatures. I test to a <0.02. Many doctors test to a <0.10. There is an ultra sensitive testing to 3 decimals 0.0xx.

    If you lost your < sign on the 0.10 first test you have a failed surgery and radiation is next. You will want to retest to confirm. Complete your signature like ours and we can comment further. Hormone deprivation therapy in addition to radiation may be a part of your next level of treatment. Share your post pathology report regarding adverse conditions such as positive margins, seminal vesicle invasion, EPE, lymph nodes, etc. Share you're whole history. It helps others.

    You have a serious pathology report as far as you have reported it, and if your test result was actually a <0.10 you may want to request a more sensitive test to detect BCR (biochemical recurrence) sooner. Some studies suggest follow up radiation treatment as early as .03 has better results for men with adverse conditions post surgery. Early detection early treatment is the best path all the way, imo.
    Last edited by Another; 11-10-2019 at 10:27 AM.

  5. #5
    Quote Originally Posted by MR B View Post
    ....My pathology report showed my cancer was worse then first diagnosed, 3TB, Gleason score 7 4+3 with minor pattern of 5, small crib form, seminal vessel Invasion.

    My questions:
    1. Is occasional bladder pain normal?
    2. My first PSA test came back as 0.10 should I be concerned?
    3. Is anyone else having problems sleeping thru the night? I wake up to pee every 2 hours like clockwork.
    Hi MR B! Welcome back & Welcome to "The Good Side of RP!" Glad that your recovery appears to be normal and is progressing well!

    1 & 3 are post RP experiences often reported on The Forum and tend to improve with time. Discuss with your URO MD at next meeting.

    2 => This should be discussed with the URO MD. Most want to see "<0.01 ng/ml" beyond 8 weeks following RP. Check the reporting source to see if the "<" symbol was omitted.

    Questions:

    - How did you receive this PSA result? Phone Call, email or Patient Portal?

    - Where was the blood drawn for the PSA test?

    - What Lab performed the PSA analysis? URO Office Lab, Hospital Lab or private Lab?

    - When is your next URO MD appointment?

    Your Path Report findings listed place you in an elevated risk group. So discuss with your URO MD if you should be monitored using an ultrasensitive PSA Methodology (uPSA) moving forward.

    Suggestions:

    - Find out which Lab is ultimately running the PSA analysis. Note: Where the blood sample is drawn is usually NOT the same Lab that analyzes the PSA.

    - Find out which PSA Methodology is used.

    - Establish a Patient Portal account with the Lab.

    - Use "The Same Lab and Same uPSA Methodology Every Time" in order to compare results.

    - Keep a record of The Original Lab Report for each result.

    - Have your next PSA test (IMO, it should be uPSA) by post RP week # 12

    IMO, using a PSA Methodology that reports to 2 decimal places should be fine to monitor for a clinically rising PSA following RP. Quest and LabCorp are highly experienced in uPSA technologies.

    This is not to suggest that your PSA will rise. By monitoring approx every 3 months will allow you to identify an increasing uPSA and prepare for SRT if needed.

    Quote Originally Posted by MR B View Post
    .....PSA in OCT 2018 3.8, PSA May 2019 9.0 Biopsy results 4 cores out of 12 cancer, 3 are 3+4 cores are 90%, 40% & 20%, 1 is 3+3 core of 50% all are on right side lobe and apex areas. I was taking Testosterone injections from Dec. 2018 unit May 2019...
    What did your URO MD say about the role/impact of exogenous Testosterone on your rapidly rising PSA that lead to RP?

    Let us know the guidance provided by your URO MD.

    You will be nearly 100% recovered in time for Thanksgiving! Enjoy!

    MF
    Last edited by Michael F; 11-11-2019 at 03:48 PM.
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Referred to URO MD
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = G7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left: PM + EPE. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3a pNO pMX pRO c tertiary pattern 5 / Prostate Size = 32 grams / Tumor = Bilateral: 20% / PNI: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml
    uPSA remains "stable" at 91 Months Post Op: Mean = 0.022 (22x uPSAs: Range 0.017 - 0.032) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  6. #6
    Quote Originally Posted by MR B View Post
    2. My first PSA test came back as 0.10 should I be concerned?.

    Concerned? Sure. But no need to worry or panic yet. It does take time to get to the "zero" level after treatment, the surgeon should be able to access the meaning of this reading. With a less than ideal path report, especially for such a young guy, the doctor is definitely keep a close eye on you and may well be recommending you for a radiation protocol sooner rather than later.

    I've waken up in the middle of the night and have slept light since I was a kid. I don't know what the cause is for you, but it isn't an enlarged prostate.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  7. #7
    Here is some more information:
    Half-life of serum PSA is three days. A serum PSA level of 50 ng/mL should become undetectable 30 days after curative radical prostatectomy. When PSA values fall to less than 0.05 ng/mL, 92% of patients remain disease free for up to 70 months.
    What was your PSA just prior to surgery? If it went 3.8 to 9.0 Oct to May then it might have been quite high at surgery time.

    I know my surgeon and my medical oncologist/urologist told me to not think about testing my PSA until 6-weeks post-RALP. My PSA decreased between week 6 and week 18 so patience on your part might be necessary.

    There is a LOT of recent research that says salvage or adjuvant radiation begun before post-RP PSA> 0.1 has a very good chance of being curative. The same research says waiting until PSA > 0.5 leads to few good results.

    Dr Tendulkar, Cleveland Clinic and one of leaders in post-RP radiation therapy, now says his practice recommends that post-RP radiation start at PSA=~0.05 when there are two consecutive PSA increases and the patient has a particularly adverse pathology report.

    My bladder / urination pattern did not stabilize until eight or nine months post surgery, so again...patience!
    Last edited by OldTiredSailor; 11-10-2019 at 08:10 PM.
    DOB: July 1947
    PSA: 2.0/2004 4.0/2010 5.8/2010 4.5/2012 5.6/2013 Normal DRE
    5/18 PSA: 9.2
    6/18 PSA: 10.2 & 8.4% Free
    6/28 3T mpMRI PIRADS 3
    18 cc gland=PSD 0.57 ng/cc
    0.32 cc lesion in apical PZ with subtle T2 signal hypointensity
    mild restricted diffusion of contrast into lesion prostate unremarkable intact capsule
    7/18 4KScore 34% Probability Gleason =>7

    8/03/18 Bx: Adenocarcinoma 6 of 13 cores ONLY L lobe
    T1c / Grade II / unfavorable intermediate
    extent of G3-G4 tissue far greater than indicated by MRI
    G6 (3+3) 70% LL Base 50% L Lateral Mid 20% L Base
    G7 (3 +4) 100% LL Apex 20% L Mid 60% L Apex
    8/15/18 Clear CT scan and Bone Scan
    RALP 8/23/18 pT3a, G7 (3+4), 20% involvement, SM+ (Focal 2mm G6), EPE(Focal G6)+, PNI+, LNI-, SVI-, LVI-
    7g Tumor 20x size in MRI & biopsy report & in BOTH lobes not just L as biopsy reported

    PSA
    10/3/18 0.021
    01/4/19 0.018
    04/03/19 0.022
    06/26/19 0.028
    10/1/19 0.035

    Decipher RP = 0.47 Average Risk

  8. #8
    Mr B - you have a name a little easier to.use ? - if you had a PSA of 0.1 I would get a retest with higher sensitivity/accuracy. 6 weeks or more post RP your PSA should be around 0.01 or preferably even less. If values are indeed around 0.1 I suggest you see a RO.

    Good Luck!

  9. #9
    Top User
    Join Date
    Aug 2016
    Posts
    1,937
    One more comment on the seriousness of your pathology. Cribriform presence is highly predictive. You want to be prepared and having next level of treatment discussions now, imo.

    https://www.nature.com/articles/modpathol2014116

  10. #10
    On the cribriform pattern goodie - I had it noted in my biopsy strangely no longer the post-op pathology - what's the practical meaning of HR 8.0? That distant metastasis is 8x more likely?

    Conversely, the overall prognostic impact doesn't seem all that bad:

    "The median time to disease-specific death in men with cribriform pattern was 120 months (IQR 76170) and 150 months (IQR 120180) in men without cribriform pattern (log rank P<0.001)."

    So I can expect to die age 63 as opposed to 65.5 without those cribriform cells. Screw them.

    Emperor Charles the Great died in 814 aged 65, 66, or 71. So much for increases in life expectancy since the middle ages...

 

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