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Thread: On the so-called "good side" now...

  1. #1
    Experienced User
    Join Date
    Apr 2019
    Posts
    59

    On the so-called "good side" now...

    Surgery was earlier this week.

    Prostate came out easily, less than 3 hours, the surgeon said it went well, nerves spared, 12 lymph nodes out, etc. While I know the surgeon is one of the best in the country, we had a horrific post-surgery experience. He was left on a stretcher in the PACU for almost 7 hours because they didn’t have a bed for him - they ended up giving him hardcore pain meds not for surgical pain but for the back pain caused by being stuck on a stretcher. When they finally found a bed, it was in a shared room. I never even thought to ask if the facility wasn’t 100% private rooms - it’s Cleveland Clinic. We are 10 hours from home, and I had planned to stay with him. Thankfully a nurse manager found a private room an hour later. While the surgeons at CC are incredible, our patient experience at CC has been a 2/10.

    I hadn’t learned much ahead of time about the JP drain. It was a bit of an issue, even with heparin his blood clots quickly, which caused the line to clog, resulting in him laying in a puddle of frothy blood and fluid. Then the drain had to be cleaned, emptied, underpad and gown changed - 3x in 12 hours.

    He seems to be healing - pee turned normal color within a few hours of getting out of the hospital. He's managing fine with minimal pain meds. But, this is a major surgery - the catheter sucks, the bloating sucks, waking up at midnight and 6am for meds sucks, giving him shots in the stomach every day sucks, being away from our toddler (while totally necessary because of the catheter) sucks, losing 2+ months of his income sucks. And the kicker for me is that I can’t help but think that there’s not really a pathology report than will make having had the surgery seem like a good choice. If it turns out it was organ confined, Gleason 6 and a tiny bit of 7, then HIFU would have been a great option and the surgery wasn’t needed. If it’s outside the prostate and/or it turns out there was some Gleason 8 or 9, then we’re headed for radiation (& possibly HT), so nothing was avoided by the surgery. Of course there’s no way to know but by having the surgery.

    Side note re: Lovevnox injections for anyone that finds this thread in the future:
    The injections of Enoxaparin sodium is meant to prevent DVT and PE which are risks with all surgeries, but prostate removal is prone to DVT and PE due to lymph node removal. You can look up the mechanisms of action at work, the lymph system is so interesting. Lovenox/Enoxaparin is insanely expensive if your insurance doesn’t cover it, $980 list, $450 with goodRX, thankfully our copay was only $25.
    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 done, 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 (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 - 11-25%
    24mm tumor, 30% of prostate
    EPE+, BNI+, SM + (at bladder neck), LVI-, SVI -, PNI-, Nodes -

  2. #2
    Sorry you had that experience. Especially at such a prestigious hospital. My husband was scheduled for 1pm but didn't start til 6:30. However if it does come back a true G6 and with him being so young, then the end of the line is near with no further TX. I hope your final path does comes back great and this is the end of a bump road. I'm sure being away from home and your kid, isn't a dream..

  3. #3
    Senior User
    Join Date
    Jan 2019
    Posts
    467
    I
    Quote Originally Posted by AceVA View Post
    Surgery was earlier this week.

    Prostate came out easily, less than 3 hours, the surgeon said it went well, nerves spared, 12 lymph nodes out, etc. While I know the surgeon is one of the best in the country, we had a horrific post-surgery experience. He was left on a stretcher in the PACU for almost 7 hours because they didn’t have a bed for him - they ended up giving him hardcore pain meds not for surgical pain but for the back pain caused by being stuck on a stretcher. When they finally found a bed, it was in a shared room. I never even thought to ask if the facility wasn’t 100% private rooms - it’s Cleveland Clinic. We are 10 hours from home, and I had planned to stay with him. Thankfully a nurse manager found a private room an hour later. While the surgeons at CC are incredible, our patient experience at CC has been a 2/10.

    I hadn’t learned much ahead of time about the JP drain. It was a bit of an issue, even with heparin his blood clots quickly, which caused the line to clog, resulting in him laying in a puddle of frothy blood and fluid. Then the drain had to be cleaned, emptied, underpad and gown changed - 3x in 12 hours.

    He seems to be healing - pee turned normal color within a few hours of getting out of the hospital. He's managing fine with minimal pain meds. But, this is a major surgery - the catheter sucks, the bloating sucks, waking up at midnight and 6am for meds sucks, giving him shots in the stomach every day sucks, being away from our toddler (while totally necessary because of the catheter) sucks, losing 2+ months of his income sucks. And the kicker for me is that I can’t help but think that there’s not really a pathology report than will make having had the surgery seem like a good choice. If it turns out it was organ confined, Gleason 6 and a tiny bit of 7, then HIFU would have been a great option and the surgery wasn’t needed. If it’s outside the prostate and/or it turns out there was some Gleason 8 or 9, then we’re headed for radiation (& possibly HT), so nothing was avoided by the surgery. Of course there’s no way to know but by having the surgery.

    Side note re: Lovevnox injections for anyone that finds this thread in the future:
    The injections of Enoxaparin sodium is meant to prevent DVT and PE which are risks with all surgeries, but prostate removal is prone to DVT and PE due to lymph node removal. You can look up the mechanisms of action at work, the lymph system is so interesting. Lovenox/Enoxaparin is insanely expensive if your insurance doesn’t cover it, $980 list, $450 with goodRX, thankfully our copay was only $25.
    Wow! Your experience at CC and mine were night and day. Although the surgery time was pushed back 2 hours.

    With the R-Less surgery there was no JP drain, no injections post surgery, and only meds were generic - a stool softener, an antibiotic and 5 pain tablets if I needed them. My entire prescription cost post op was $2.12 from the CC pharmacy and the CC staff brought those to my wife in the waiting area.

    3 hours out of surgery I was wheeled to a king size bed in the Intercontinental.

    Unfortunately the catheter was in 9 days.
    Last edited by Duck2; 07-21-2019 at 07:16 AM.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    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, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT - 6/3/19
    ART - 8/5/19

  4. #4
    Senior User
    Join Date
    Nov 2016
    Posts
    289
    Quote Originally Posted by AceVA View Post
    I can’t help but think that there’s not really a pathology report than will make having had the surgery seem like a good choice.
    It might be hard to do, but as a general rule of thumb: Don't start second guessing yourself, ever.

    Look only forward. Hopefully after a quick and successful recovery, you'll be all done with PCa except for the little anxiety bump while waiting on PSA results.
    Age at Dx 57
    PCa History: Father, Uncles, Grandfathers

    Oct 2016 Biopsy 12 core: Adenocarcinoma, Gleason 4+3=7 Grade Group 3) w/PNI
    Left Lateral Base: Suspicious
    Left Lateral Mid: PIN
    Left Base: 4+3=7 (60% pattern 4) Core involvement 30% (5mm)
    Right Base: Suspicious
    Right Apex: 3+3=6 Core involvement 60% (7mm) discontinous
    Right Lateral Mid: 3+3=6 Core involvement 10% (1mm)
    Right Lateral Apex: 3+3=6 Core involvement 10% (1mm)

    Jan 2017 DaVinci - Dr. Grant Taylor - Pathology: pT2c; Gleason 4+3=7; Weight: 42g

    Jun 2019 AMS800 installed - Dr. David Rapp - Jul 2019 activated

    ED: Light to moderate

    (Note: All PSA tests prior to Jun19 were done by LabCore)
    PSA_TESTS

    Apr 2016=5.1
    Jul 2016=4.7
    Aug 2016=5.13

    ----Surgery----

    Mar17<0.01
    Jul17<0.01
    Oct17<0.01
    Jan18<0.01
    May18<0.01
    Nov18<0.01
    Jan19<0.01
    Jun19<0.02

  5. #5
    Top User
    Join Date
    Aug 2016
    Posts
    1,644
    Think of it as cancer sucks. Everything else is taking care of yourself.

  6. #6
    Congrats on getting through the RP. It's something you just have to do, one time, with all its vagaries. And those are many: those in your control and (mostly) not, inside and outside your body, helping or hindering progress. But each hour, each day takes you closer to putting the surgery and recovery in your past for good. Think positive!

    Remember that we heal from the outside in and that full recovery takes time.

    Best wishes for a path report and PSA result that makes for a very happy ending!

    Djin
    Last edited by DjinTonic; 07-21-2019 at 01:33 PM.

  7. #7
    Hi AceVA! Very sorry to read about the Rough Landing but very glad you have landed on "The Good Side of RP! Best wishes for a favorable Path Report! A "good" PR will far outweigh & offset the Rough Landing!

    Recovery & Healing are physiologic processes that require time. They can not be accelerated, so go easy & follow all of the post op instructions to the letter. Lots of walking, as able, with increasing frequency, pace and duration will help "The Process."

    The worst is now behind you. Now is the time to relax and move forward with optimism. He will feel like a brand new man once liberated from the catheter!

    MF
    Last edited by Michael F; 07-21-2019 at 11:37 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 84 Months Post Op: Mean = 0.021 (20x uPSAs: Range 0.017 - 0.026) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  8. #8
    Sorry about your bad experience. I suppose it could happen to anyone. Personally, my RP experience was wonderful. It was at the hospital where my wife worked and they put me in the very large VIP room, with a sofa, dinette and a panoramic view of the city. But my next surgery was at a local hospital in Florida, where the surgery was delayed for HOURS and the entire experience was filled with blunders and do-overs. Quite frankly, something I've been unable to forget, and wish I could. But I am curious... how does your husband feel about all this? You've told us all about YOUR feelings.

    Regarding the surgery itself, given your husband's excellent pre-op testing and low scores, you probably shouldn't worry too much. Of course, surprises can and do happen, but are rare. And remember that radiation as primary treatment is delivered based upon external scans, and scans can be wrong. Mine showed that my cancer was contained, but once the surgeon got in there, he discovered that it had spread considerably. Such is the true advantage of choosing surgery over radiation... visual recognition of pathology. And you reserve radiation as a backup plan in the event of adverse findings.

    Regarding shots and drains, I've had 15 surgeries and never had a drain, other than a brief time with a suprapubic catheter. But I've had Foley caths for months. Also did daily Lovenox (or heparin) injections myself while in a hospital bed for three months... except three days a week when I'd get in my wheelchair and go to therapy. It's unfortunate that you had to travel so far from home only to have such a disappointing experience, but I suspect that in the long run you will find that having the benefit of having a top notch medical team at your disposal will be an advantage to your husband. TBH I felt pretty lonely throughout my experience (even with my wife being an RN) and most of what I now know about prostate cancer - and cancer in general, is only through my own research. And usually after the fact. If I had it to do over again, and had I known ANYTHING about what was going on inside my body, I would have made the short drive to Cleveland and checked into a local motel. After all, I was making frequent trips to Sandusky during that time, just an hour or so away.

    Don't fret the outcome of the prostatectomy. I'm fairly confident that you and your husband will do just fine.
    Late 2012: PSA 4, age 62 all DRE's 'normal'
    Early 2014: PSA 9.5, TRUS biopsy (false) negative
    2015: PSA's 12 & 20, LOTS of Cipro ... Mar'16: PSA 25, changed Urologist
    Jun'16: MRI fusion biopsy, tumor right base, 6/16 cores: 2ea 15-40-100% G8(4+4)
    Aug'16: DVRP,
    "broad cut" 11 LN-,-SM, 53g 25% involved, multifocal EPE, PNI, B/L SVI, pT3b

    Jan'17: started Lupron ADT, uPSA's ~.03
    May'17: AMS800 implanted, revised 6/17
    Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
    Jan'18-July 2019: PSA's <0.008, T~12
    Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritis
    "Everyone you meet is fighting a battle you cannot see"

    Mrs: Dec 2016: Dx stage 4 NHL/DLBCL,
    Primary Bone Lymphoma
    spinal RT boost+6X R-CHOP21+6X IT MTX via LP. Now in remission
    Read our story at CancerCoupleBlog

  9. #9
    Experienced User
    Join Date
    Apr 2019
    Posts
    59
    We realize that coming to CC was/is worth it for the caliber of surgeon. If we had a do-over I think we'd head to Hopkins or MSKCC though. If the surgery had been pushed back, it would have been annoying, but not as traumatic. Seeing him in horrible, easily preventable pain was brutal. He is an extremely chill guy, and he was about as upset as he's ever been about anything by hour 6 in the PACU. The surgery was not at main campus, but at a suburban facility that does a lot of RP. We didn't know that initially, and then had a lot of communication issues around the pre-anesthesia testing and other questions before we even got here. While the surgeon is one of the best, I think maybe the administrative side outside of main campus may be the B team.

    I haven't shared with him much about the possibility/likelihood of a not great path report, so he's feeling optimistic that this will be a one and done for him. He's worse off physically than he anticipated, but he's following all the hospital's instructions and being a cooperative patient. But the stress of having to close his business is wearing on him for sure.
    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 done, 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 (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 - 11-25%
    24mm tumor, 30% of prostate
    EPE+, BNI+, SM + (at bladder neck), LVI-, SVI -, PNI-, Nodes -

  10. #10
    Top User
    Join Date
    Aug 2016
    Posts
    1,644
    My surgeon had two possible surgery sites from me to choose from. He preferred one over the other and I asked why because the site he preferred did not have an overalll better repuation than the one nearer my home. His answser, the site he preferred had a better supporting team. I was astounded at his honesty and more so in retrospect. In particular, he mentioned the head nurse/surgery assistant. The doctor sits at a computer station in the corner of the room. The assistant works at the body. When I met her the day of the surgery I understood immediately. She was older, had more procedures than the doctor, and inspired confidence. It's a team sport.
    Born 1953
    family w/PCa; grandfather, 3 brothers
    07-12-04 PSA 1.90
    07-10-06 PSA 2.02
    08-30-07 PSA 3.20
    12-01-11 PSA 5.69 Internist recommends urologist, I say no
    05-16-12 PSA 4.76 manipulate w/diet & supplements
    12-11-12 PSA 5.20, Health system changes to 3 years on testing
    03-07-16 PSA 7.20 Internist adamant on urologist
    DRE smooth, enlarged
    03-14-16 TRUS biopsy-prostatic adenocarcinoma 1%-60% across 8 of 12 samples, Gleason 3+3=6
    03-31-16 MRI pelvis w/o dye
    05-04-16 DaVinci prostatectomy, nerve sparing, Dr. Kent Adkins - recommend
    Final Path; weight 65g, lymph nodes, seminal vesicles, capsule, margin all negative, Gleason 3+4=7, Tumor volume 35%, +pT2c
    Catheter out - 16 days
    Incontinence at 6mos is minimal – no pad
    Cialis 3x/wk & Viagra on occasion
    Begin self-injection needle therapy for erections, stop after 6 due to onset of Peyronie’s
    Erections 100% - 14 months
    5-21-19 PSA <0.02, Zero Club 3.5 years

 

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