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Thread: My husband was diagnosed last night. This doesn't feel real. What should I do?

  1. #31
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,235
    Wonderful news, indeed. The best of the day!!

    Now you can breathe easier and begin making plans for going for the big cure.
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  2. #32
    Regular User
    Join Date
    Apr 2017
    Posts
    17
    We had a second opinion consult at Huntsman Cancer Institute today.

    Both our initial surgeon (head of Urology at the largest hospital in the state) and the surgeon today (at Huntsman Cancer Institute) recommend the same treatment: surgery, PSA test in three months, probable radiation thereafter.

    The tumor is on the left side of the prostate. Bone scan and cat scan do not show any evidence that the cancer has spread beyond the prostate.

    The initial surgeon suggested all nerves be removed so as not to leave any cancer cells behind.
    The Huntsman surgeon "strongly recommended" that the nerves on the left side be removed, but also "strongly recommended" that the nerves on the right side be preserved.

    The Huntsman surgeon also suggested six months of hormone therapy along with the radiation.

    Both surgeons have performed more than 1000 DaVinci prostate surgeries.

    What criteria should we use to choose the surgeon? My husband is leaning one way, and I am leaning the other.
    My 57-year-old husband was diagnosed with aggressive prostate cancer March 31, 2017
    (Previous biopsy 2015 did not detect cancer)
    3/2017: PSA 21. Fusion biopsy; two ROI, 16 cores; Stage T1, Gleason score 4+5 = 9
    4/2017: Pre-surgical bone scan and CT scan both clear. No evidence of cancer in bones or lymph nodes.
    6/2017: DaVinci robotic prostatectomy; biopsy of lymph nodes and prostate during surgery did not show cancer outside the prostate.
    6/2017: Post-surgery biopsy showed cancer in base of seminal vesicles, but contained with clean margins.
    7/2018: PSA levels increased steadily following surgery. Lupron followed by 32 days of radiation on the prostate bed.
    7/2019: PSA levels rising following radiation; after 9 months, PSA is .75 with a doubling time of 3.5 months.
    7/2019: CAT scan and bone do not show location of cancer. PET scan recommended.

  3. #33
    Quote Originally Posted by Carmel View Post
    The initial surgeon suggested all nerves be removed so as not to leave any cancer cells behind. The Huntsman surgeon "strongly recommended" that the nerves on the left side be removed, but also "strongly recommended" that the nerves on the right side be preserved. The Huntsman surgeon also suggested six months of hormone therapy along with the radiation.
    The hormone therapy along with radiation is pretty typical these days for any cases in which cancer may have penetrated the capsule. Generally the first escape route for the cancer is along the nerve pathways... that's why so many guys have "PNI" or perineural invasion in their sigs, but perhaps no other extraprostatic extension. Sparing the nerves is more likely to lead to completely regaining continence and (hopefully) erectile function. OTOT using a "wide cut" or broad cut, removing most of the nerve tissue is most likely to get all the cancer and not leave any behind. It can be devastating, but lead to fewer follow up treatments down the road.
    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:
    began 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

  4. #34
    Hi Carmel! Excellent work getting an expert 2nd opinion! Even better is both URO MD's opinions concurred. This makes deciding between Good & Good difficult. To help decide, see if you can determine:

    - Which MD deals with more high risk PC cases
    - Which instituion treats more post RP patients with Radiation.

    Since Radiation is likely, it makes sense to have both treatments at the same institution, if both institutions have equally good URO Surgeons & URO Radiologists.

    Good luck arriving at the decision and getting the surgery scheduled. Once the surgery date is set, you feel a large weight removed from your shoulders. Simply look forward and get it behind you.

    Best wishes! We look forward to greeting you on "The Good Side!"

    MF
    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

  5. #35
    Senior User
    Join Date
    Feb 2017
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    147
    Quote Originally Posted by Carmel View Post

    Both surgeons have performed more than 1000 DaVinci prostate surgeries.

    What criteria should we use to choose the surgeon? My husband is leaning one way, and I am leaning the other.
    Carmel,

    Sounds like you guys are on the right path. I might suggest that you meet/talk to the RO who would be doing the radiation at both places, if possible. The RO is the one who will be managing the radiation portion, so being equally comfortable with that doc is also important -- he's on the team, as it were. I just had my last visit with the uro surgeon who did my surgery before my first post-operative PSA in August. We talked about the adjuvant radiation and potential for HT, but he agreed that the RO would be the one leading that process. My surgeon noted that he'll have input regarding timing, etc., but that the RO was the guy who'd design the treatment regimen, including HT. Your comfort and confidence in him/her will be important.


    Then, assuming that you've found facilities and surgeons that are experienced, etc., it might be a gut call. I'm one who would lean, in the last analysis, toward who your husband (the patient) favors. I say this only because he's the one who's gonna be sitting there happy or not post-surgery. If he went with the doc(s) with whom he was most comfortable, at least he'll be less tempted to throw blame around if he's unhappy with some aspect of recovery/results.

    Good Luck!
    Dx 06jan2017, 53yo
    PSA 7
    Gleason 3+3=6, 2 cores from 12,
    L apex 1mm, 14% and 0.5mm 5%
    Grade T2a
    RP Davinci 10 Apr 2017
    Final Pathology: 36 grams (4x3x3cm)
    Tumor 1.8cm greatest dimension, extrapostatic ext. indeterminate
    Primary Grade 4, Secondary Grade 3, Tertiary Grade 5 (5%)
    4mm span positive margin apex
    "Tumor not obviously beyond the prostate" (at margin), but into striated muscle tissue.
    Extraprostatic tissues, 5 lymph nodes, seminal vessicles all no malignancy.
    pT2c, N0, Mx
    Adjuvant RT scheduled: 39 tx at 70Gy Oct - Dec 2017
    PSA: 1/17/2017 (pre surgery)=7 8/17/2017=0.04 10/17/2017=0.06 2/18/2018=0.02
    5/22/2018=<.01

  6. #36
    Senior User
    Join Date
    Sep 2013
    Posts
    312
    Lots of good advice already. I would add that you should ask both surgeons if they plan to do a pathology during surgery after prostate removal. Up to that point the nerves should be spared on the one side. If pathology comes back with decent negative margins on that side then I would think they could spare the nerves on that side.

  7. #37
    Senior User
    Join Date
    Feb 2015
    Posts
    361
    It's a shame there isn't a way to have a look at the outcomes of the doctors' surgeries, in terms of full return to continence, ED issues, etc. rather than just the gross number of operations they have performed. I don't know how or even IF this kind of information is made public in most cases, but I am pretty sure that all of these doctors keep track of their "stats".
    You seem to be following all of the right protocols and you're getting a lot of good advice here; hang in there and keep us in the loop!
    Regards,
    DD

  8. #38
    Quote Originally Posted by Dogdollar View Post
    It's a shame there isn't a way to have a look at the outcomes of the doctors' surgeries, in terms of full return to continence, ED issues, etc. rather than just the gross number of operations they have performed.

    Even if you could look at the outcomes, it would tell you less than you might think. In a large practice, the top men often get the most challenging surgeries to do, the ones which are least likely to have optimum results even if the surgeon is on point.
    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

  9. #39
    Regular User
    Join Date
    Apr 2017
    Posts
    17
    Surgery tomorrow. Any last minute advice?
    My 57-year-old husband was diagnosed with aggressive prostate cancer March 31, 2017
    (Previous biopsy 2015 did not detect cancer)
    3/2017: PSA 21. Fusion biopsy; two ROI, 16 cores; Stage T1, Gleason score 4+5 = 9
    4/2017: Pre-surgical bone scan and CT scan both clear. No evidence of cancer in bones or lymph nodes.
    6/2017: DaVinci robotic prostatectomy; biopsy of lymph nodes and prostate during surgery did not show cancer outside the prostate.
    6/2017: Post-surgery biopsy showed cancer in base of seminal vesicles, but contained with clean margins.
    7/2018: PSA levels increased steadily following surgery. Lupron followed by 32 days of radiation on the prostate bed.
    7/2019: PSA levels rising following radiation; after 9 months, PSA is .75 with a doubling time of 3.5 months.
    7/2019: CAT scan and bone do not show location of cancer. PET scan recommended.

  10. #40
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,235
    Hi,

    Just tell him to relax tonight and hopefully he'll surprise himself with a good night's sleep. I always figured I'd be a sleepless mess the night before my surgery.

    But I went to bed and got a good, full night of sleep. Then I walked from my motel room to the hospital at Mayo Clinic. Before I knew it, I was dozing on and off in my hospital room after the surgery. Really nothing to it, as crazy as that might sound.

    Be prepared to sleep in a soft, reclining chair the first 3-4 nights after returning from the hospital. It will be much more comfortable.

    Other than that, all he'll need to do is arrive at the hospital, sign a few papers & talk to a couple people -- and his work is done. He'll simply take a several hour nap as the surgical team does its job, then he'll wake up and it'll all be over.

    Hang in there -- all will be fine. And remember that even a Gleason 9 can be cured if it is still confined to the prostate!!
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

 

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