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Thread: Packing List for Surgery ~10 hour drive away

  1. #11
    Senior User
    Join Date
    May 2017
    Posts
    217
    Quote Originally Posted by AceVA View Post
    Heading to Cleveland Clinic in a couple weeks, only planning to stay 1 night after catheter removal. Tell me what I'm missing:

    OTC Drugs:
    Polysporin
    Lidocaine gel ointment
    AZO Bladder pain reliever (just in case)
    Colace
    Miralax
    Senna
    Advil
    Zyrtec/Sudafed

    Supplies:
    Chux pads (for recliner at AirBnb, just in case)
    1 pack depends mens overnight diapers
    1 pack Tena pads
    1 sample pack quick change wraps
    2 pairs large/loose athletic shorts
    1 pair large/loose linen blend pants
    foam doughnut pillow (for car ride back)
    hospital grade disinfecting wipes for surfaces in bathroom
    extra long charging cord for phone
    antibacterial body wash

    Any additional catheter care items we should get ahead of time, or can we rely on them to supply plenty of everything we'd need?
    AceVA;
    I also had my surgery at the Cleveland Clinic and was very happy with them. I am fortunate that I live in Cleveland so did not have to find a hotel. I had a friend bring me home after surgery - My doctor wanted to release me the day following surgery but my friend couldn't pick me up until the next day so I ended up staying one extra day. This is off-subject but I found that the clinic tends to do things a bit differently than other hospitals.

    For me, even though I had a male nurse, they didn't give me any instructions at all about the care of my catheter following surgery. I developed tremendous pain at the tip of my penis a few days after surgery and I think this was due to not lubricating the tip because I was not instructed to do so. The hospital did send me home with lubricant so not sure of the lack of education was the norm, CCF policy, or my prticular (male) nurse's oversight or laziness.

    Also, one thing they wanted me to do after leaving the hosp was to take a shot of blood thinning medication once a day for a month. I was nervous about doing this and so the doctor said that I didn't have to if i didn't want to. I was fairly young (57) and active so maybe he didn't think I'd have a problem with blood clots. I don't know if this is CCF policy to give blood thinning medication after release or if my doctor just decided to do it.

    Good Luck. If you have any specific questions about my experience at CCF, you can send me a personal message.

    Tim
    Age at diagnosis: 57
    8/15/14 PSA 2.9
    3/01/17 PSA 5.9
    5/1/17 Biopsy Results
    6 cores positive out of 12
    1. G 6 - 45%, 2. G7 (3+4) - 70%, 3. G6 - <5%, 4. G7 (3+4) - 40% Perineural Invasion Identified
    5. G6 - 15%, 6. G6 - 15%
    CT and bone scan negative
    Biopsy second opinion by the Cleveland Clinic: Still G3+4 (% of pattern 4 in each of two cores = 5% of tumor)
    Pre Surgery PSA = 6.11, Free PSA = 13%
    Davinci performed August 1, 2017 at Cleveland Clinic
    Catheter out August 9, 2017
    Pathology: Pathologic Stage - pT2: Organ confined, Gleason Score 3+4=7: Grade Group 2.
    % of pattern 4: 1-10%, % of pattern 3: 91-100%
    SV -, BN -, LN -
    Margin of resection is focally positive for tumor, Length of positive margin: 1mm
    Gleason pattern at positive margin: Pattern 3.
    Post-Op PSA History: 9/14/17 <.03, 11/10/17 <.03, 5/10/18 <.03, 7/19/18 <.03, 9/15/18 <.03, 11/14/18 .03, 02/18/19 .05, 3/12/19 .05, 4/22/19 .06
    SRT begin 5/7/19, 70.2 gy total in 35 fractions.

  2. #12
    Experienced User
    Join Date
    Apr 2019
    Posts
    68
    Quote Originally Posted by wtdedula View Post
    AceVA;
    I also had my surgery at the Cleveland Clinic and was very happy with them. I am fortunate that I live in Cleveland so did not have to find a hotel. I had a friend bring me home after surgery - My doctor wanted to release me the day following surgery but my friend couldn't pick me up until the next day so I ended up staying one extra day. This is off-subject but I found that the clinic tends to do things a bit differently than other hospitals.

    For me, even though I had a male nurse, they didn't give me any instructions at all about the care of my catheter following surgery. I developed tremendous pain at the tip of my penis a few days after surgery and I think this was due to not lubricating the tip because I was not instructed to do so. The hospital did send me home with lubricant so not sure of the lack of education was the norm, CCF policy, or my prticular (male) nurse's oversight or laziness.

    Also, one thing they wanted me to do after leaving the hosp was to take a shot of blood thinning medication once a day for a month. I was nervous about doing this and so the doctor said that I didn't have to if i didn't want to. I was fairly young (57) and active so maybe he didn't think I'd have a problem with blood clots. I don't know if this is CCF policy to give blood thinning medication after release or if my doctor just decided to do it.

    Good Luck. If you have any specific questions about my experience at CCF, you can send me a personal message.

    Tim
    Yes, the daily shot in the abdomen is still a thing. I think we can handle it, they seem pretty insistent on it. Surgeon said he hasn't had a single clot since he started mandating it for patients.

    Our experience with CC so far has been mixed, I'm sure it's worth it outcomes-wise to be at a center of excellence with a surgeon that's done over 2k RRPs, but the administrative side has been...odd.

    I'll be sure to insist on lots of catheter care instructions, I spend some time at a trade show recently with a rep for Baird - the company that makes most Foley catheters, and got lots of good tips, but that was all theoretical.
    Wife Posting, Husband D.O.B. 1975
    2/2018 - routine physical PSA 15
    3/2018 - PSA 13
    4/2018 - PSA down to 11.6, free PSA, 18%
    6/2018 - PSA 10, free PSA 20%
    7/2018 - mp- MRI done, prostate volume =22cc, "inflammation consistent with prostititis"
    11/2018 - PSA 14, free PSA 11%,
    3/2019 - PSA 12, free PSA 17%, 2nd opinion on MRI = PI RADs 3 lesion
    4/2019 - Cognitive Fusion Biopsy
    5/12 cores positive
    4 Gleason 3+3
    1 Gleason 3+4 5% (Where PIRADs 3 lesion IDd)
    Decipher Biopsy score: .07 very low risk

    Bone scan negative
    MRI 6/19 said PIRADS 4 lesion, no definite EPE

    RRP 7/19 Final Path: pT3a
    G6 - 75-90%
    G7 (3+4) - 11-25%
    24mm tumor, 30% of prostate
    EPE+, BNI+, SM + (at bladder neck), LVI-, SVI -, PNI-, Nodes -
    Decipher Post RP score: .78, high risk

  3. #13
    Senior User
    Join Date
    Aug 2017
    Posts
    301
    I am not advocating for or against the shots, but my mother took Lovenox shots for concerns about blood clotting. After about two weeks of the shots had a massive internal bleed from the last one. It was a terrible outcome that I will spare you the details of. I'd recommend anyone fully explore the risks of taking those shots before doing so. Like most things, there are risks not taking the shots also.
    PSA 8/31/15 4.01
    PSA 3/03/16 4.15
    PSA 8/28/16 3.94
    PCA3 9/16 low risk
    PSA 5/10/17 7.49,
    PSA 9/2/17 9.77
    Biopsy 6/7/17 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 iffy.
    Bone biopsy 8/11/17. Negative.
    3T MRI 7/19/17. 3.5 cm liposarcoma found behind bladder.
    CT Scans of chest and pelvis 7/31/17. Negative
    RALP 9/25/17
    Histologic Type: Adenocarcinoma
    Total Gleason Score: 6
    Tumor Quantitation: Less than 5%
    Location of dominant tumor nodule: Left posterior lobe apex to mid
    Extraprostatic Extension: Not identified
    Seminal Vesicle Invasion: Not identified
    Margins: Uninvolved by carcinoma
    Lymph-Vascular Invasion: Not Identified
    Primary Tumor: pT2c (organ confined; tumor involves both lobes)
    Regional Lymph NodesN0 (No metastasis)
    Number of lymph nodes examined 6 ;nodes involved 0
    Distant Metastasis: cM0
    Working Stage Grouping: Stage IIB (T2c N0 M0)

  4. #14
    @Consult1. I didn't see any psa numbers for you. Have you had undetectable psa since Ralp. I saw you have a similar post op path as my husband was wondering if you've had any issues with psa or bcr

  5. #15
    Ace: Just wanted to say good luck, looks like u have a very curable case. Stay Strong...MM
    DOB:Feb 1958
    PSA: 9/15: 5.9
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. +9 of 12 cores. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: -CT scan/BS
    Clinical Staging: 10/28/15 T2c
    ( RALP) UC 12/29/15

    Final Pathology Report; Jan. 6 2016

    -15 lymph nodes
    G9 ( 4+5)
    +EPE
    +LVI
    +Right SV -Left SV and vasa deferentia,
    PI present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex 4/1/16-8/5/16
    Lupron 4/15/16-5/15/18
    SRT 6/14/16...8/5/16 38Tx
    uPSA 8/10/16---8/22/19 <0.05
    Feb. 2017 Loyola Chicago
    11/15/2018 AUS 800 Implanted
    12/18/18...T Levels...Free T 42.8...Total T...262

  6. #16
    Senior User
    Join Date
    Aug 2017
    Posts
    301
    My PSA has fluctuated between 0.03 and 0.06 post RALP. There is no trend so far- it goes up and down. My Urologist is not recommending any action other than continuing to do 6 month PSAs at this juncture. There are others here who have gone to the next step with similar PSAs, but most of them had worse pathology. If G6 truly cannot metastasize in theory there should be no reason to be concerned. However, I don't believe they fully know how each heterogeneous growth acts. I have read studies which say that G6 can progress yet it's a very small percent. I belong to a PCa support group and one of the men who was on AS for over 2 years with one core Gleason 6 now has Gleason 8 and is having surgery soon.

    Bottom line- I continue to get tested and stressed for each testing interval.
    PSA 8/31/15 4.01
    PSA 3/03/16 4.15
    PSA 8/28/16 3.94
    PCA3 9/16 low risk
    PSA 5/10/17 7.49,
    PSA 9/2/17 9.77
    Biopsy 6/7/17 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 iffy.
    Bone biopsy 8/11/17. Negative.
    3T MRI 7/19/17. 3.5 cm liposarcoma found behind bladder.
    CT Scans of chest and pelvis 7/31/17. Negative
    RALP 9/25/17
    Histologic Type: Adenocarcinoma
    Total Gleason Score: 6
    Tumor Quantitation: Less than 5%
    Location of dominant tumor nodule: Left posterior lobe apex to mid
    Extraprostatic Extension: Not identified
    Seminal Vesicle Invasion: Not identified
    Margins: Uninvolved by carcinoma
    Lymph-Vascular Invasion: Not Identified
    Primary Tumor: pT2c (organ confined; tumor involves both lobes)
    Regional Lymph NodesN0 (No metastasis)
    Number of lymph nodes examined 6 ;nodes involved 0
    Distant Metastasis: cM0
    Working Stage Grouping: Stage IIB (T2c N0 M0)

  7. #17
    One would assume that the guy in your support Group had more aggressive cancer that was hiding and the biposy only picked up the G6. " Nevertheless I wish you continued success and less stress during testing waiting times. I wish you continued no treatment.

  8. #18
    Senior User
    Join Date
    Aug 2017
    Posts
    301
    Thanks, and the same to your husband!

    Yes, most would assume that but nobody can prove it for his case or conclusively rule out Gleason progression in general. This disease has a large component of playing the odds, and if you are the x% that's the exception...
    PSA 8/31/15 4.01
    PSA 3/03/16 4.15
    PSA 8/28/16 3.94
    PCA3 9/16 low risk
    PSA 5/10/17 7.49,
    PSA 9/2/17 9.77
    Biopsy 6/7/17 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 iffy.
    Bone biopsy 8/11/17. Negative.
    3T MRI 7/19/17. 3.5 cm liposarcoma found behind bladder.
    CT Scans of chest and pelvis 7/31/17. Negative
    RALP 9/25/17
    Histologic Type: Adenocarcinoma
    Total Gleason Score: 6
    Tumor Quantitation: Less than 5%
    Location of dominant tumor nodule: Left posterior lobe apex to mid
    Extraprostatic Extension: Not identified
    Seminal Vesicle Invasion: Not identified
    Margins: Uninvolved by carcinoma
    Lymph-Vascular Invasion: Not Identified
    Primary Tumor: pT2c (organ confined; tumor involves both lobes)
    Regional Lymph NodesN0 (No metastasis)
    Number of lymph nodes examined 6 ;nodes involved 0
    Distant Metastasis: cM0
    Working Stage Grouping: Stage IIB (T2c N0 M0)

  9. #19
    Quote Originally Posted by Consult1 View Post
    My PSA has fluctuated between 0.03 and 0.06 post RALP. There is no trend so far- it goes up and down. My Urologist is not recommending any action other than continuing to do 6 month PSAs at this juncture. There are others here who have gone to the next step with similar PSAs, but most of them had worse pathology. If G6 truly cannot metastasize in theory there should be no reason to be concerned. However, I don't believe they fully know how each heterogeneous growth acts. I have read studies which say that G6 can progress yet it's a very small percent. I belong to a PCa support group and one of the men who was on AS for over 2 years with one core Gleason 6 now has Gleason 8 and is having surgery soon.

    Bottom line- I continue to get tested and stressed for each testing interval.
    It's known that a small percentage of G6 men on AS will go on to high-grade disease (>G7) that is usually found, but sometimes missed, by their routine AS monitoring (e.g., found when their G6 is upgraded after RP). Whether there were microlesions >G6 at the time of diagnosis or they developed ex novo later is kind of a moot point.

    Basically, in all cases of men who were G6 after surgery but who went on to develop metastatic PCa (mPCa), when they went back and re-examined the prostate, they identified lesions >G6 that were initially missed--the G6 didn't "go metastatic." Although PCa is a heterogeneous disease (lesions with different G scores at biopsy), for the majority of men with mPCA, when their mets ate traced back genetically, it turns out the mets not only have the same G score, but they are all clones of a single prostate lesion that developed metastatic potential.

    My uro told me about about the one individual who actually did have metastatic G6 (and I posted with a link to the paper about it). However, this was the exception that proved the rule. It turns out that he had a G6 lesion adjacent to a higher-grade one, and the G6 actually picked up the very genetic material from the higher-grade lesion that gave it the ability to metastasize!

    Anyway, that's my current understanding of what's going on.

    True Incidence of Gleason 6 Pathology in Patients with Metastatic Castration Resistant Prostate Cancer (mCRPC) [2017]

    Disease‐specific death and metastasis do not occur in patients with Gleason score ≤6 at radical prostatectomy [2017]

    Prostate-specific antigen 10–20 ng/mL: A predictor of degree of upgrading to ≥8 among patients with biopsy Gleason score 6 [2017]


    Djin
    Last edited by DjinTonic; 07-09-2019 at 07:47 PM.

  10. #20
    Top User
    Join Date
    Aug 2016
    Posts
    1,709
    It makes the point that post surgery pathology is not exhaustive and is a statically acceptable exam. To note, the margin exam on post surgery material is in the high 90% on accuracy and completeness.

 

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