A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 3 of 6 FirstFirst 12345 ... LastLast
Results 21 to 30 of 54

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

  1. #21
    Regular User
    Join Date
    Apr 2017
    Posts
    17
    We are looking at Dr. Jay Bishoff in Utah.

    https://intermountainhealthcare.org/...bishoff-jay-t/

    Thoughts? Experiences?
    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.

  2. #22
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,235
    He would appear to be very highly qualified if surgery is the primary treatment that is being considered -- depends on whether they think surgery is still a viable option in this case.

    If so, the trick is to find out how many robotic surgeries he has performed, how often he does them, his percentages of success in similar cases, etc.

    On the other hand, if radiation is a better option in this situation, the same attributes in a radiation oncologist are important.

    Chuck
    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.

  3. #23
    Senior User
    Join Date
    Feb 2015
    Posts
    361
    Hello, Carmel,
    Let me start by saying that you have found an excellent place to come for information, opinions, and encouragement. Everyone here has been on the road you are on at some point; it is our common bond, and one that ties us to each other. You will get through this journey, one way or another, and one day you will look back on the day you found this forum and consider the impact it has had on your journey...so, please...by all means...ASK the questions that are on your mind and use this wonderful resource to educate yourself. This place exists for you.
    There is a lot to learn about prostate cancer....PSA levels, Gleason scores, different kinds of biopsies, newer, more exotic tests and technologies......it can be overwhelming. Well, DON'T let it overwhelm you; it will all become second nature soon enough, and the only thing I can guarantee you when it does is that you will find there are no absolutes in terms of outcome. I would wager a week's wages that everyone on this forum has witnessed someone with a better prognosis that actually did worse than they did, or a worse prognosis that did better than they did. It is also not unusual for the post op pathology, which is the only thing that truly and accurately profiles your particular disease, can occasionally result in an improved, or worsened, prognosis based on findings that extend beyond what the biopsy might have shown.
    Gleason scores and PSA levels can suggest the likelihood of things like metastasis, but they are NOT definitive....so don't make the mistake of putting the cart before the horse. I would imagine that, given your biopsy result, an abdominal MRI and a bone scan will be in your future to help determine if there actually is any metastasis, and if so where it is and to what extent, if it is found at all, it has spread. After that, you and your doctor put all the information you have on the table and discuss the best way forward.
    I can't emphasize enough how important it is to find a doctor that you truly believe in, so choose wisely and if your gut says no, listen to it. If you're going into surgery you pretty much have one shot at getting it right, and you want the right guy on your team, even if you wind up stepping on a few toes getting to him. Do your homework and go with your gut.
    I had a conversation with another member a while back, and I think that our discussion sort of shifted his perception of all of this business, so, if you don’t mind, I will share some of the advice I gave to him to you:

    Jack,
    Everyone, including my surgeon, was surprised when my clinical Gleason 7 (both ways) turned out post op to be Gleason 9 (4+5). I also had one of 33 lymph nodes and a positive margin.
    I would like to tell you what I have learned in the 18 months it has been since my surgery. Satisfy yourself that you have a doctor that you can bet your life on, and that he works in a hospital you can bet your life on.....and then hook your wagon to that star and let THEM tell you when it's time to be afraid. By all means, keep yourself educated, but too much information can be even worse than too little....and what's going to affect your quality of life more than anything right now is FEAR...it steals time that you won't ever get back. Time from your family, your friends, your work; time from all of the things in your life that make your life enjoyable in the first place. That make you WANT to live. That GIVE VALUE to living.
    Statistics are interesting to read to get a general, global view of something, especially when you are considering thousands of cases. When you are considering ONE.....I'm not sold on the idea that because X is Y that I run a 70% risk........30% of the guys in that group did just fine...why is it some foregone conclusion that you won't?
    One step at a time, my friend; deal with it as it comes and know that we all are pulling for you; but not because you are special or are particularly doomed - we all pull for each other on here. Because we're all in the same boat....because NO ONE is a cancer survivor until the day that they die of something else.
    It's a tough pill to swallow, but it is what it is...and the reality is the same for all of us here.


    Carmel, I hope this gives you some food for thought.
    Rest assured, I am confident that I speak for the group when I say we are here for you, and YES, you CAN do this.
    Best regards,
    DD

  4. #24
    Regular User
    Join Date
    Apr 2017
    Posts
    17
    My husband had his bone scan and CT scan last week. We are waiting for results. It's hard to concentrate on anything. Hard to settle my mind enough to complete a simple task like putting the laundry in the dryer. I start to walk toward the laundry room and get distracted and nothing gets done at all.

    I am on pins and needles waiting for the results. Once we know what we're dealing with, we can move forward. We already have surgery scheduled but will get a second opinion from the Huntsman Cancer Institute first.

    Thank you all for the kind encouragement.
    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.

  5. #25
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,235
    Hi there,

    Sorry that nobody has replied yet. Yes, the waiting game for this type of situation is the absolute worst.

    Yes, his Gleason score is not very cheerful -- but his T1 staging IS VERY encouraging. With such a favorable staging, it would seem extremely likely that there has NOT been any metastasis.

    Even a Gleason 9 (or even 10) can be totally cured if caught while still confined to the prostate.

    So we all join you in hoping for good reports and then on to a hopefully curing surgery. It is good that you have the date already set.

    This helps avoid any further delay WHEN that good news comes in!!

    Please let us know when that news arrives,
    Chuck
    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.

  6. #26
    Hi Carmel! You are taking all of the right steps so simply move forward and take it one step at a time.

    Getting a 2nd opinion is most advisable. It will either reinforce the 1st opinion or shed light on some additional considerations. As always have your questions lined up!

    Ask:

    - Would a course of Hormone Therapy (HT) now offer any benefit prior to surgery?
    - What will determine if & when Radiation Therapy (RT) is needed after surgery?

    What we on The Forum call "The Dreaded Wait" for results in exactly that = Dreaded! The "DW" is your new norm moving forward. You will experience it when waiting for:

    - surgical findings: Both the URO Surgeon & Path Report
    - surgical recovery: Time to return to normal functions
    - PSAs results: He will have his PSA regularly monitored for change

    The DW can cause a lot of negative energy. Turn that into some useful positive energy instead!

    Good luck! We are with you every step of this journey.

    MF
    Last edited by Michael F; 04-29-2017 at 01:12 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

  7. #27
    Regular User
    Join Date
    Apr 2017
    Posts
    17
    Some positive news! Bone scan and CT scan were both clear. No evidence of cancer in the bones or in the lymph nodes. I feel so much relief.

    On to the next step: a complete review with the team at Huntsman Cancer Institute.

    Chuck and Michael, thank you for helping to keep me sane.
    Last edited by Carmel; 04-29-2017 at 01:00 AM.
    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.

  8. #28
    Experienced User Narnar's Avatar
    Join Date
    Nov 2016
    Posts
    79
    Carmel,
    That is indeed great news. I wish you continued good news, my thoughts and prayers are with you.
    Ron
    Gen office 3/25/16 psa 11.5 referred to urologist.
    6/21/16 urologist, schedule biopsy for 7/6/16
    2 of 12 positive GS 8 and 7
    Started lupron 9 /13/16 psa 62.4
    12/13/16 3 month check up Psa 4.8
    2/13/17 bone scan clear but proven met at L3 no longer shows up.
    2/13/17 MRI with endorectal coil shows both lesions have shrunk.
    2/13/17 psa 4.1
    RALP April 11 2017. Dr. Chapin
    Pathology report found 2 lesions, gleason score was upgraded to 9 on one and to an 8 on the other. 18 lymph nodes were removed 2 were positive.
    6/7/17 six week post op PSA 0.5
    9/7/17 PSA 0.2
    12/4/17 Bone and CT scan stable, received 6 month lupron shot.
    12/4/17 PSA 0.2
    3/6/18 PSA 0.1
    6/6/18 Bone and CT scan stable
    6/6/18 PSA 0.1
    12/6/18 Bone and CT looks clear
    12/6/18 PSA undetectable

  9. #29
    Oh my gosh! That's wonderful news! Now you can move forward with treatment and focus on getting to the other side, the good side!!

    Congratulations on the good news! Try to let your mind relax just a bit and enjoy the weekend with you hubby!
    Wife posting for spouse - 51, age at dx 48
    06/2016: PSA 6.48
    07/2016: PSA 7.22 FPSA 10% 12 Core Biopsy Negative
    10/2016: PSA 6.30 FPSA 13%
    12/2016: MRI W/COIL PI-RADS 5 with Probable EPE, Bones/LN Clear
    12/2016: Biopsy Two cores 3+4 and Seven cores 3+3
    02/2017: RP Pathology 3+4 Grade 4 component is 5%
    Prostate: 32.7 gm Tumor Volume Estimate: 35%
    No EPE or lymphovascular invasion 13 lymph nodes, Seminal vesicles, vasa deferentia, no tumor present
    High grade prostatic intraepithelial neoplasia, Perineural Invasion: Present
    Tumor involves proximal basilar margin of 2.0 mm Gleason at margin is 3 pT2c,N0,MX,R1
    04/2017: 6 Week PSA <0.01
    05/2017: 3 Month uPSA <0.006
    8/2017: 6 Month uPSA <0.006
    11/2017: 9 Month uPSA 0.014 12/2017: Re-test 0.012
    2/2018: 12 Month uPSA 0.006
    5/2018: 15 Month uPSA 0.014
    8/2018: 18 Month uPSA 0.013
    11/2018: 21 Month uPSA 0.018 12/2018 Re-test 0.021
    SRT: Started 1/2019
    5/2019 27 Month uPSA <0.006
    Decipher 0.75
    100% Dry, No ED

  10. #30
    Senior User
    Join Date
    Nov 2016
    Posts
    302
    Yay Carmel and husband!

    What a relief!
    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 or pT3a; 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

 

Similar Threads

  1. I feel like I am living the real March MADNESS
    By jpn0707 in forum Pancreatic Cancer Forum
    Replies: 2
    Last Post: 03-25-2013, 05:23 AM
  2. New diagnosis feel like I'm being squeezed from insides and night time pain b4 treatm
    By Katieindians in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 1
    Last Post: 06-24-2012, 01:59 PM
  3. Replies: 0
    Last Post: 07-19-2010, 02:47 AM
  4. The strong one who doesn't feel so strong
    By dgspicer in forum Lung Cancer Forum
    Replies: 4
    Last Post: 02-17-2010, 02:39 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •