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Thread: Dad recently diagnosed - please help

  1. #1
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    Dad recently diagnosed - please help

    Hi everyone,

    I stumbled upon this forum on googling. I'm here, I guess, not for medical advice, but for more general advice, an understanding. At the moment my head is spinning and I am not 100 per cent sure what to do.

    BACKGROUND
    My dad is 67. No (known) family history on PCa. Fit, maybe slightly overweight, but is very active, eats well.
    He had a general check up a bit over a month ago and his PSA was around 15.
    His GP told him to come back in a week and get another blood test. This dropped to 14.
    Still too high she decided to refer him to a urologist.
    The Urologist completed a DRE and noted that he couldn't feel anything suspicious in his examination, however booked dad in for an MRI and a biopsy.
    Dad literally hasn't had any symptoms. Has no trouble urinating, keeping a stream, doesn't urinate frequently, no blood in urine, is fine sexually (yuck), no aches and pains in his body outside of a dodgy knee from a bike fall as a teenager.
    Dad had the MRI and then about a week later had the biopsy last Friday (May 10).
    After the biopsy dad asked how it went. The doctor reported - Good, but there was one area of concern.
    Doctor called dad last Tuesday (May 14) and said he had cancer and needed to come in and see him on the Friday (May 17).
    At the meeting on Friday the doctor said the following:
    - He has a more aggressive form of the cancer, one that comes from his mother's side (?)
    - Out of the 13 samples from the biopsy, seven tested positive to cancer.
    - That if dad didn't have treatment he could possibly live another 5-7 years.
    - He was relatively confident it hadn't spread, but booked dad in for a PET scan just in case. It's in two weeks.
    - Said that he would definitely need to have surgery to remove the prostate. Said he may be able to save the nerves on the left hand side (not sure what this means).
    - Didn't mention a gleeson score (that mum or dad can remember). I assume it can't be great if he HAS to have surgery.

    I'm not sure what to make of all of this. Every where I read everyone is told a Gleeson score, yet dad didn't get one.
    I'm terrified at the prospect of all of this and what's to come. I don't no how to digest all of this information and what to make of it all?

    Would love to hear from you all about this. Is what dad's going through normal protocol, is there some questions I should get mum to ask?
    I'm guessing a lot of what is to come is reliant on the PET scan shows. Should I be concerned that the doctor has asking for this, or relieved that he is doing some really good investigations before operating?

    Thanks everyone x

  2. #2
    Before the doctor can make a treatment recommendation, he has to stage the cancer. And that's the reason for the pet scan. A bone scan with contrast is more commonly used for prostate cancer, as that's where PC tends to metastasize to.

    Yes, its the normal protocol, especially for a more aggressive cancer or when the patient has a significantly elevated PSA score and a 14 certainly qualifies.
    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

  3. #3
    Moderator Top User HighlanderCFH's Avatar
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    Hi Riz,

    Welcome to the forum. We're glad you found us, but sorry that you needed to.

    Indeed, it is unusual to not have a Gleason score. If your dad demands a full copy of the biopsy, I'm certain that the Gleason scores will be listed. There is no way the doctor could characterize the seriousness of the cancer without the Gleason score.

    When you get the Gleasons, please let us know and we'll have a fuller picture of his situation.

    Another thing to keep in mind is that they usually do not offer surgery unless they feel a complete cure is possible. So keep that in mind.

    Stay tuned as others will be jumping in with their own thoughts, comments & advice.

    Good luck!
    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.

  4. #4
    Quote Originally Posted by rizzoaus View Post
    - He has a more aggressive form of the cancer, one that comes from his mother's side (?)
    - Out of the 13 samples from the biopsy, seven tested positive to cancer.
    - That if dad didn't have treatment he could possibly live another 5-7 years.
    - He was relatively confident it hadn't spread, but booked dad in for a PET scan just in case. It's in two weeks.
    - Said that he would definitely need to have surgery to remove the prostate. Said he may be able to save the nerves on the left hand side (not sure what this means).
    - Didn't mention a gleeson score (that mum or dad can remember). I assume it can't be great if he HAS to have surgery.

    I'm not sure what to make of all of this. Every where I read everyone is told a Gleeson score, yet dad didn't get one.
    You should have been told a Gleason score. Always ask for original result printouts, such as your detailed biopsy report and blood tests. The "cancer from mother's side" makes me wonder if his mom had breast cancer and he has been tested for BRCA genes?

    Also you want to ask second opinions if your dad might opt for radiation treatment instead of surgery. Biopsy report absent one can only speculate on the "nerve sparing left hand side". Probably more biopsy cores on the right were positive and may have indicated perineural invasion, meaning the cancer might have crept along nerves starting on the inside of the prostate to outside nerves, which are then less likely to be spared in surgery.

    I recommend taking your detailed biopsy report, once you have it, to a radio oncologist and you could also ask for a second opinion on the biopsy slides. Folks on this forum are raving about Dr. Epstein @ Johns Hopkins as gold standard pathologist.
    --------------
    DOB 1965
    PM me for PSA graphing service & detailed story
    PSA 6.8 11/17
    PSA 7.5 04/18
    MRI 05/18 inconclusive, PI-RADS3?
    PSA 11.8 01/19
    PSA 10.1 02/19
    12 core random biopsy 02/19 (4+3)=7 suspicion of vascular invasion, grade 4 cribriform pattern, no PTEN loss
    Bone scan negative 04/19
    PSA 13.3 04/01/19 pre-surgery significant urinal symptoms and some ED
    RRP 04/04/19
    pT2c pN0 (0 of 7 lymph nodes positive) pL0 pV0 R0(local) Pn1
    Perineural growth predominantly on right hand side, tumour diameter 15mm 90% G4 10% G3
    Prostatic parenchyma with glandular hyperplasia and chronic granular, partly purulent inflammation.
    PSA 0.14 04/30/19
    PSA 0.02 05/13/19
    PSA 0.008 06/04/19

  5. #5
    Regular User
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    Quote Originally Posted by HighlanderCFH View Post
    Hi Riz,

    Welcome to the forum. We're glad you found us, but sorry that you needed to.

    Indeed, it is unusual to not have a Gleason score. If your dad demands a full copy of the biopsy, I'm certain that the Gleason scores will be listed. There is no way the doctor could characterize the seriousness of the cancer without the Gleason score.

    When you get the Gleasons, please let us know and we'll have a fuller picture of his situation.

    Another thing to keep in mind is that they usually do not offer surgery unless they feel a complete cure is possible. So keep that in mind.

    Stay tuned as others will be jumping in with their own thoughts, comments & advice.

    Good luck!
    Chuck
    Thanks heaps Chuck. Much appreciated. When I find out some more information I will share. I was over at mum and dad's today and I went through all their paperwork. No pathology reports there from the Urologist. Just a booklet on how to deal with being diagnosed with prostate cancer. I think it's the not knowing that is the hardest. I'd feel better about the battle dad faces if I knew all the details so I could research for myself. The surgery comment seems positive!


    Quote Originally Posted by KarlEmagne View Post
    You should have been told a Gleason score. Always ask for original result printouts, such as your detailed biopsy report and blood tests. The "cancer from mother's side" makes me wonder if his mom had breast cancer and he has been tested for BRCA genes?

    Also you want to ask second opinions if your dad might opt for radiation treatment instead of surgery. Biopsy report absent one can only speculate on the "nerve sparing left hand side". Probably more biopsy cores on the right were positive and may have indicated perineural invasion, meaning the cancer might have crept along nerves starting on the inside of the prostate to outside nerves, which are then less likely to be spared in surgery.

    I recommend taking your detailed biopsy report, once you have it, to a radio oncologist and you could also ask for a second opinion on the biopsy slides. Folks on this forum are raving about Dr. Epstein @ Johns Hopkins as gold standard pathologist.
    Thank you for the advice! I'm actually from Australia, so things work a little bit differently here. The good thing is dad has good cover health insurance which will help him. The doctor seems very thorough so hopefully he has us going in the right direction..

  6. #6
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    Quote Originally Posted by KarlEmagne View Post
    You should have been told a Gleason score. Always ask for original result printouts, such as your detailed biopsy report and blood tests. The "cancer from mother's side" makes me wonder if his mom had breast cancer and he has been tested for BRCA genes?
    I think he was talking about this certain type of PCa. Although, definitely no cancer in my grandmother. She turned 103 this year!

  7. #7
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    Quote Originally Posted by KarlEmagne View Post

    Also you want to ask second opinions if your dad might opt for radiation treatment instead of surgery. Biopsy report absent one can only speculate on the "nerve sparing left hand side". Probably more biopsy cores on the right were positive and may have indicated perineural invasion, meaning the cancer might have crept along nerves starting on the inside of the prostate to outside nerves, which are then less likely to be spared in surgery.
    Thanks for this I will ask. And thanks also for the recommendation. We are in Australia!so things are a little different here.

  8. #8
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    Quote Originally Posted by HighlanderCFH View Post
    Hi Riz,

    Welcome to the forum. We're glad you found us, but sorry that you needed to.

    Indeed, it is unusual to not have a Gleason score. If your dad demands a full copy of the biopsy, I'm certain that the Gleason scores will be listed. There is no way the doctor could characterize the seriousness of the cancer without the Gleason score.

    When you get the Gleasons, please let us know and we'll have a fuller picture of his situation.

    Another thing to keep in mind is that they usually do not offer surgery unless they feel a complete cure is possible. So keep that in mind.

    Stay tuned as others will be jumping in with their own thoughts, comments & advice.

    Good luck!
    Chuck
    Thanks very much Chuck. Just feeling very overwhelmed by the process. It is all very confronting, especially because dad has no symptoms. I talked to him more about this today and asked him to speak honestly and he said he would have admitted it if he had any he was keeping secret. Glad we have found it now, so hopefully he can get treated.

  9. #9
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
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    7,237
    Thanks! Glad to help.

    Keep pushing for that complete pathology report, including the Gleason scores. Once we've got that info, we can give you a much clear picture of how things might be.

    Also, prostate cancer in its earlier stages seldom gives any symptoms.
    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.

  10. #10
    Top User
    Join Date
    Aug 2016
    Posts
    1,792
    Often times the urinary symptoms develop over a long period of time and become the new normal and are dismissed as signs of aging. Men also begin to drink less to compensate for this inconvenience of frequent urination and incontinence issues such as dribbling after or before and an urgent need to urinate very little very often. I have often heard older men say they do not drink water or do not like water to drink. It's a bad habit and not uncommon for those suffering urinary issues.

    This can be exposed most times by honestly answering the doctor's questions about need to urinate during night time and daytime and the nature of the urge, the amount, and strength of stream. If not, then track the amount of liquid consumed during the course of a day for several days. Men may often stop drinking hours before sleeping to manage this behavior. I know this because I did all of it and have witnessed men managing this in their daily lives. Your father may be chronically dehydrated if he has no obvious urinary symptoms when you would expect them. Then of course, some just lie about it with a pretense of modesty, fear, or denial. This type of lying is not knowing deception of those around them, but for themselves as a peace of mind strategy, out of mind out of sight.

    Anyway, it is a possibility, and not an uncommon one to overcome as most of us deal with a denial and delay phase.

    I'll share a recent story. Friend and I and our partners are driving across country. He is 71 with a brother who has prostate cancer. His status is unknown to me. He behaves as if he believes he does not have prostate cancer or issues, and in full disclosure, I behave as if I see it everywhere. He drove for over 6 hours stopping only to urinate many times and never once took a drink in those 6 hours. He did have two cups of coffee before we left. He said only once as an aside to his partner traveling with us, "I make a lot of water." Watching his behavior I did not see it. What I saw was him making water often. A big distinction.

    When we arrived at his destination he was exhausted. This is a symptom of dehydration. I drank nearly 60 ounces of water during this time period and urinated normally with no urgency, frequency, or incontinence issues, as did my partner. We then continued on to drive ourselves another 6 hours without symptoms of exhaustion. Less some think we took advantage of his driving for us, he'd not allow any drive sharing. Some poeple can not sit in a car quietly if they are not driving. And, it allowed him to control the driving breaks.

    Acceptance and learning to be honest with yourself about this risk is key to taking it on effectively, imo.

    Then again, your father may not have any symptoms, but not likely if he is an older male.
    Last edited by Another; 05-20-2019 at 06:11 PM.
    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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