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Thread: Hubby just diagnosed

  1. #51
    Experienced User
    Join Date
    May 2017
    Location
    Columbia, MD
    Posts
    58
    I removed my own catheter. Here's a link to the instructions. All of Dr. Partin's patients remove their own catheters. There's really nothing to it.
    http://urology.jhu.edu/prostate/alanPARTIN.php

    Scroll down to the section titled "Foley Catheter Removal".
    There is no right or wrong decision for treatment. Make the decision you are comfortable with and can live with and not second guess if all does not go optimally.

    6/2016 PSA 5.1, negative DRE
    6/2016 Urologist PSA 6.0, %free = <10% chance cancer
    12/2016 PSA 7.7, %free = 50% chance cancer
    2/2017 biopsy Bostwick 5/12 3+3, perineural invasion. Hopkins 5/12, 4 3+3, 1 3+4 (5% 4), perineural invasion
    5/17/2017 Open RP by Dr Alan Partin - Hopkins (5500+ prostate cancer surgeries, open & robotic)
    5/2017 Pathology 3+4, T2x, +margin (6mm, 3+3), organ contained except unevaluable at +margin, moderate tumor extent
    seminal vesicles, lymph nodes all neg
    Age: 62 @ surgery
    8/2017 PSA < .1

  2. #52
    Newbie Regular User
    Join Date
    Aug 2017
    Posts
    10
    Quote Originally Posted by brake1957 View Post
    Has anyone removed their own catheter? Came home to Colorado from Arizona where surgery was done. Surgeon released husband to come home if his urologist her would remove the catheter, which the urologist said he would. There was a very tiny leak found when the surgeon tested it before removing catheter at 12 day mark but assured us that the urologist would be able to remove it after 7 more days. The urologist decided that my husband needed to wait 5 more days and wouldnt even discuss calling the surgeon! It is 3 weeks with the catheter in and upset at urologist, he seemed upset that we didnt go with his referral for a surgeon. The urologist wont remove it but told my husband he can. Thoughts on this?
    Brake, I had my catheter in for 22 days due to a leak in the urethra/bladder connection. My doc wouldn't take it out on a Friday, due to a 3 day weekend, but instructed my wife and I on how to do it on the next Tuesday morning. It was uneventful and I have been basically 100% continant since.
    Age 53 - PSA 5.7
    Biopsy 5/10/17
    Diagnosed 5/25/17 - 10 of 12 cores positive
    RALP 8/15/17
    Catheter removed 9/5/17...22 long days due to leak.
    Final Pathologic Diagnosis
    Prostate and bilateral pelvic lymph nodes and lymph node dissection: Prostatic Adenocarcinoma, Gleason Pattern 3+4 =7. (Grade Group2)
    - Bilateral Tumor Involvement.
    - Tumor involves the right anterior and left posterior margins.
    - Right seminal vesicles uninvolved by tumor.
    - No extra prostatic extension identified.
    - Perineural invasion identified.
    - Six lymph nodes identified negative for metastatic carcinoma.

  3. #53
    Senior User
    Join Date
    Nov 2016
    Location
    Abingdon, VA
    Posts
    185
    Thankfully Dave and Ironhead stepped up and said they had removed the cath. My cancerforums.net search skills are found wanting.
    Age at Dx 57, History: Father, Uncles, both Grandfathers
    Aug/16 PSA=5.13
    Oct/16 Biopsy: Adenocarcinoma, Gleason 4+3=7 with perineural invasion
    Jan/17 DaVinci; Pathology: pT2c; Gleason 4+3=7; Weight: 42g; Both nerve bundles spared

    Mar/17 & Jul/17 PSA <0.01

  4. #54
    Newbie New User
    Join Date
    Aug 2017
    Posts
    8
    I'm in your shoes too. Not a good club to join. Husband's PSA was 12, and Gleason is 9. We are going to Hopkins on September 26th for his radical prostatectomy. Wishing you the best. I'm here if you need to talk and if you message me, I will give you my email address. I guess you can do that on here. My biggest thing is not being all consumed and making him think worse that it really is. I don't want to bring it up to him every minute and want him going in with a good attitude and not one of defeat!
    Get the book! Surviving prostate cancer. It answers many questions.
    Praying for you and your husband.

  5. #55
    Regular User
    Join Date
    Apr 2017
    Posts
    16
    Mrs z, we went to CTCA in Phoenix and would highly recommend it! We removed the catheter yesterday and my hubby was so happy to "free willy!" Surgery was uneventful, only Tylenol for a couple of days. Hardest part was keeping him from overdoing. We had great confidence in the surgeon and staff so was very comfortable with surgery.

  6. #56
    Regular User
    Join Date
    Apr 2017
    Posts
    16
    Question, the catheter was removed last Wednesday the 13th. He has had incontinence but nothing to bad. Was urinating fine until this morning now he feels like he needs to urinate but doesn't. Any ideas as to what might be going on? Is this normal?

  7. #57
    Regular User
    Join Date
    Jun 2017
    Posts
    40
    Brake,
    It could be blockage or just a false feeling. I have a nurse navigator assigned to me that I can call anytime for advise. Did they give you someone
    that you could call to get medical advise? If it is blocked it needs to be taken care of. I think you need to talk to a medical person on your team
    and make them aware of what he is experiencing.

    Ed
    DOB 5/1955
    Went for physical on 3/30/17 and had blood work done

    3/31/17 PSA 15.1 Refered to Urologist.
    4/5/17 DRE Negative
    4/7/17 PSA 14.1
    4/19/17 TRUS Negative
    5/1/17 Biopsy 12 cores
    RLB 3+4 30%
    RM 3+3 6%
    RLM 4+3 90%
    RLA 4+3 5%
    Left side negative
    5/26/17 Cat scan Negative
    6/7/17 Full body bone scan, Negative
    RALP scheduled 6/28/17

    Surgeon went wide on the right side spared nerves on left.
    Catheter removed 7/7/17 No incontinence but UTI being treated.

    Final pathology report 7/28/17
    Prostate 50g (this was 28-32 estimated before operation. Bad estimation I guess)
    Prostatic adenocarcinoma with mucinous differentiation (questionable to me this very rare usually misdiagnosed type)
    Gleason score 4+3 involving both lobes limited to the prostate
    Percentage involved by tumor 5%
    EPE -, SVI -, LVI -, LN -, PNI+, Margins -
    Pathologic stage pT2 N0
    PSA 8/4/2017 <0.1

  8. #58
    Experienced User
    Join Date
    Aug 2017
    Location
    Upstate NY
    Posts
    71
    My surgery is coming up but I would guess that if he normally urinates every 2-3 hours and now he isn't urinating at all, that needs to be addressed quickly. If it's a case that he isn't urinating when he thinks he needs to yet is still urinating other times, that's less serious.
    PSA 8/31/15 4.01
    PSA 3/03/16 4.15
    PSA 8/28/16 3.94
    PCA3 urine test 9/16 low risk
    PSA 5/10/17 7.49, DRE questionable.
    PSA 9/2/17 9.77
    Biopsy 6/7/17 Two cores of 12 sampled tested positive. Left Apex Gleason 6, less than 5% of core. Right Apex Gleason 6, 35% of core.
    OncotypeDX GPS score 43- high risk.
    Bone scan 7/11/17. 11th left rib questionable.
    Bone biopsy 8/11/17. Negative.
    3T MRI 7/19/17. No other areas of prostate suspicious, but 3.5 cm liposarcoma found behind bladder.
    CT Scans of chest and pelvis 7/31/17. Negative
    RALP and tumor removal scheduled 9/25/17

  9. #59
    Regular User
    Join Date
    Apr 2017
    Posts
    16
    Yes called patient care nurse advised to go to ER. As soon as we got there he felt like he needed to urinate and he did! He has never had surgery and uncertain if he should "bother them" I insisted, which is how he found the cancer in the first place. He is good now.
    Consult1 good luck on your surgery.

  10. #60
    Experienced User
    Join Date
    Aug 2017
    Location
    Upstate NY
    Posts
    71
    Thanks! Glad everything worked out well today.

    One thing I have been told is to try and avoid anything with caffeine as it irritates an already sensitive bladder from the catheter. Not sure if that had anything to do with his situation today.
    PSA 8/31/15 4.01
    PSA 3/03/16 4.15
    PSA 8/28/16 3.94
    PCA3 urine test 9/16 low risk
    PSA 5/10/17 7.49, DRE questionable.
    PSA 9/2/17 9.77
    Biopsy 6/7/17 Two cores of 12 sampled tested positive. Left Apex Gleason 6, less than 5% of core. Right Apex Gleason 6, 35% of core.
    OncotypeDX GPS score 43- high risk.
    Bone scan 7/11/17. 11th left rib questionable.
    Bone biopsy 8/11/17. Negative.
    3T MRI 7/19/17. No other areas of prostate suspicious, but 3.5 cm liposarcoma found behind bladder.
    CT Scans of chest and pelvis 7/31/17. Negative
    RALP and tumor removal scheduled 9/25/17

 

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