Recently diagnosed - PSA 114 - Gleason score 8

Don3335
Don3335 Member Posts: 3
in Prostate Cancer #1

I'm 46 and was just diagnosed last week with prostate cancer. Today I was told that my Gleason score is an 8 and my Doctor said that he would like to meet with a team next Thursday to get a few other opinions on how to proceed. His first though is to have me start hormone shots to slow down my testosterone which in return should slow down the cancer growth rate. He plans on meeting with me after Christmas day to go over a plan on how we are going to proceed. Does anyone agree that I should start the hormone shots before surgery? That is I prefer to have surgery first and then if needed radiation. Would anyone be able to recommend a great Doctor(s) in the Raleigh NC area?

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    edited December 2017 #2
    Gleason 8

    Dear Don,

    I am sorry for your diagnosis.

    What led you to receive a biopsy

    I wonder how many cores were a Gleason 8? What else was indicated in the pathology?

    What did your digital rectal exam reveal (finger wave in anus)?

    What is your PSA history?

    Any other diagnostic tests? Image, MRI or PET scans?

    You want the very best Medical Oncologist that you can find to lead your medical team. This person is best qualified to administer hormone treatment.

    Your doctors recommendation to have hormone therapy first is appropriate.

    The American Urological Association recommends a bone scan for those with Gleason 8 and above. 

    You will wish to explore image tests to determine where the cancer is, that is PETscan(various types; some of the better ones are investigaional).

    Surgery is a localized treatment. Patients with a Gleason 8 most likely have extracapsular extenstion, that is the cancer has escaped the capsule. So surgery will not cure and other treatments radiation which has a wider margin of treatment and hormores will be required. Side effects from each treatment  are cummulative. My laymans opinion is that radiation/hormone or hormone only will do the job.

    Important for you to have copies of all your medical tests to see various specialists.

    Also let others in your family know of your diagnosis, since they are more likely than the rest of the population to be diagnosed with prostate and breast cancers. They all need to be tested, and live a heart healthy life style. Heart healthy is prostate/breast cancer healthy.

    We are here for you, interface with us,  ask questions

     

  • Tech70
    Tech70 Member Posts: 70 Member
    edited December 2017 #3
    Duke University

    Don,

    I don't know any specific doctors in your area, but you are fortunate to live right next to one of the premier medical centers in the country, Duke University.   I would suggest that you begin exploring resources there.

    Good luck going forward.

     

  • Don3335
    Don3335 Member Posts: 3
    #4
    hopeful and optimistic said:

    Gleason 8

    Dear Don,

    I am sorry for your diagnosis.

    What led you to receive a biopsy

    I wonder how many cores were a Gleason 8? What else was indicated in the pathology?

    What did your digital rectal exam reveal (finger wave in anus)?

    What is your PSA history?

    Any other diagnostic tests? Image, MRI or PET scans?

    You want the very best Medical Oncologist that you can find to lead your medical team. This person is best qualified to administer hormone treatment.

    Your doctors recommendation to have hormone therapy first is appropriate.

    The American Urological Association recommends a bone scan for those with Gleason 8 and above. 

    You will wish to explore image tests to determine where the cancer is, that is PETscan(various types; some of the better ones are investigaional).

    Surgery is a localized treatment. Patients with a Gleason 8 most likely have extracapsular extenstion, that is the cancer has escaped the capsule. So surgery will not cure and other treatments radiation which has a wider margin of treatment and hormores will be required. Side effects from each treatment  are cummulative. My laymans opinion is that radiation/hormone or hormone only will do the job.

    Important for you to have copies of all your medical tests to see various specialists.

    Also let others in your family know of your diagnosis, since they are more likely than the rest of the population to be diagnosed with prostate and breast cancers. They all need to be tested, and live a heart healthy life style. Heart healthy is prostate/breast cancer healthy.

    We are here for you, interface with us,  ask questions

     

    Thanks you for replying...

    Thanks you for replying...

     

    What led you to receive a biopsy -

    1st my PSA was high which led me to a Urologist. The Urologist determined via the finger his findings and scheduled an MRI & a Full Bone scan. My bone scan was clean so I'm very thankful for that. The next step was the 12 Biopsy, 6 from the Left and 6 from the right side.

    I wonder how many cores were a Gleason 8? What else was indicated in the pathology?

    Not sure how many were 8 as my Doctor stated all 6 on the Left were bad.

    What did your digital rectal exam reveal (finger wave in anus)?

    Doctor did not like what he felt which led to the MRI and Bone scan

    What is your PSA history?

    My PSA has always been 0 but I missed my annual testing in 2016

    Any other diagnostic tests? Image, MRI or PET scans?

    The MRI showed a 3cm size on my left side of the prostate along with a lymph node at a 2cm size.

     

    Thanks again for replying as I'm trying to learn a lot quickly about prostate cancer.

  • Don3335
    Don3335 Member Posts: 3
    #5
    Tech70 said:

    Duke University

    Don,

    I don't know any specific doctors in your area, but you are fortunate to live right next to one of the premier medical centers in the country, Duke University.   I would suggest that you begin exploring resources there.

    Good luck going forward.

     

    Thank you - I have placed a

    Thank you - I have placed a call to Duke and scheduled an appointment. I'm concerned as the earliest appointment they have available is February 5th but I have the appointment made.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #6
    .

    Don,

    Great news for the bone scan.

    You need to obtain a hard copy of all your diagnostic tests, especially the pathology report as well as notes that the doctor make about your case. Your responses are vague; you need to have the pathology report in front of you to answer my questions about the cores found and other information in the report. Doctordid not like is also not an answer, what did the DRE reveal?

    You will need this information for any doctor that you will see, as well as for us at this board so we can provide our input based on facts.

    You say that you made an appointment at Duke for Feb. 5th....is that with a MEDICAL oncologist? I would make appointments with both a Medical Oncologist and a Radiation Oncologist at Duke. You can continue your research while you wait for your appointments.

  • contento
    contento Member Posts: 75
    #7
    Don, sorry for the diagnosis.

    Don, sorry for the diagnosis. As you know a Gleason 8 is very aggressive and in my opinion should be treated aggressively. Your MRI also showed a swollen lymph node which is also a concern . Did it show extracapsular extension ? With your psa skyrocketing to 116 in such a short time did the doctor suggest prostatitis ? Don, your doing exactly what I would do by making an appt with a world class cancer center like Duke. Listen to your doctors at Duke and make sure you speak to both a surgeon and a radiation oncologist and ask them to come to a consensus as to your treatment plan going forward. If Duke is like MD Anderson they will automatically collaborate to come up with the best plan.

    I also was a gleason 8 , stage 3 ( T3a ) and had to go through the trifecta of surgery, radiation and hormone treatments. I also had 1 suspicious lymph node which was removed and turned out to be negative. . That was 5 years ago and I'm doing just fine.

    Good Luck --- contento

  • BLUEpac6
    BLUEpac6 Member Posts: 43
    #8
    Psa 116

    2009 was diagnosed 110 psa and gleason 8 was advised by all the doctors I went to it was out of the prostrate and surgery was to dangerous and radiaton was all I could do and I was given a hormone shot and wait 3 mo.for radiation.As I waited friend whose daddy died of prostrate cancer doctor called.me and said I need it removed if I had radiaton and cancer returned there world be no cure.He put me Seth Lerner.Baylor Clinic houston and he said he world,open me up but if it was in my lymph nodes he world,close me up it was not and he removed my prostrate and every thing went fine till 2011 and my psa creeped up and had to have 35 radiaton.treatments.That all was fine and 2016 oncologist released me the cancer was gone.Here is what happened 2017 I had never heard of on cancer network I started having,blood come out my penis during a hard bowel movement and to make a long story short July 2017 because the radiation damaged my uretha where prostrate ber,was and the bottom.of my bladder I had to have some of uretha,and,bladder removed and stoma out my stomache and wear a ostomy bag, for irune,nothing that was removed had cancer cells in it and my psa is undetectable so thats what can happen.I pray you do fine.I guess the bottom line is getting the cancer.

  • Will Doran
    Will Doran Member Posts: 207 Member
    #9
    Surgery, Hormone, Radiation

    Don,

    Very sorry to hear of your diagnosis.  You are so young.

    I was diagnosed in August of 2013.  I had no symptoms.  When found, My PSA was 69, and my Gleason was 7.  I had robotic surgery in Dec 2013.  Pathology showed one very small spot in one lymph node that hadn't shown up in my MRI's.  I was listed as a Stage pT3bN1.  Had 40% of prostate involved,   Then, I started Lupron (Hormone Treatment) to weaken any cancer cells that might have been missed, and then 8 weeks of once a day Radiation.  I remained on Lupron for two full years.  They had my Testosterone knocked down to 17.  "Normal" is 250 - 1100.  My PSA went down to <0.010 and is still less than 1.  I was at 0.47 at my last check, however the rate of increase has slowed down to half of what it was. The rate of increase is what they are watching now.    I've been off the Lupron for over a year now.  The PSA is coming up a little, which was expected.  But at this point doctors aren't concerned, even though I am.  My Testosterone is now back up to 380.  

    I am not a doctor and can't make recommendations but I can tell you what they did with me.  My surgeon / urologist insisted that I talk to Radiation Oncology before I decided to do the surgery.  I wanted the cancer removed.  However he wouldn't do the surgery until I heard all the options.  Then I thought I wanted to do the radiation (seeds).  But instead did go with the surgery.  It was a gamble.  Good thing I decided on the surgery, because my prostate was adhered to my Bladder, and they coudln't have gotten the seeds planted where they needed to be.  One consideration from my doctors was physical condition and age.  I was a road cyclist and weight lifter (Still do weights and indoor spinner bike now).  I was 67 when diagnosed.  My doctors said I was a good candidate for surgery because of my condition and "youth".  At which I laughed like crazy. I had Surgery in Dec '13, started Lupron in Jan. '14, and Radiation in May '14.  It was something about making sure all was healed properly before we could start radiation. I am now 4 years post surgery.

    As to the Hormone shots before surgery, I don't know.  They didn't do that with me.  It seemed to me there was something in the order of doing the surgery and treatments that was recommended to be followed.  Others here might be able to shed more light on that for you.  I think it depends on where and when you can do radiation and what can be done after.  

    Make sure you read, and studay all the options and all of the side effects of all the treatments you will be going through.  Ask tons of questions about side effects.  I went into all of this "blind".  I hadn't found this web site before I started all the treatments.  Ask as many questiosn as you can think of here.  We will share our experiences as best we can.  This is a "battle and hard fight".  Be strong and fight like the devil.  Support from you Partner, and or Family are very important. My Wife has been and still is my biggest support and "Cheerleader".  

    Know you are in my thoughts and prayers.

    Love, Peace and God Bless

    Will

  • Jerry Mac
    Jerry Mac Member Posts: 21
    #10
    hopeful and optimistic said:

    Gleason 8

    Dear Don,

    I am sorry for your diagnosis.

    What led you to receive a biopsy

    I wonder how many cores were a Gleason 8? What else was indicated in the pathology?

    What did your digital rectal exam reveal (finger wave in anus)?

    What is your PSA history?

    Any other diagnostic tests? Image, MRI or PET scans?

    You want the very best Medical Oncologist that you can find to lead your medical team. This person is best qualified to administer hormone treatment.

    Your doctors recommendation to have hormone therapy first is appropriate.

    The American Urological Association recommends a bone scan for those with Gleason 8 and above. 

    You will wish to explore image tests to determine where the cancer is, that is PETscan(various types; some of the better ones are investigaional).

    Surgery is a localized treatment. Patients with a Gleason 8 most likely have extracapsular extenstion, that is the cancer has escaped the capsule. So surgery will not cure and other treatments radiation which has a wider margin of treatment and hormores will be required. Side effects from each treatment  are cummulative. My laymans opinion is that radiation/hormone or hormone only will do the job.

    Important for you to have copies of all your medical tests to see various specialists.

    Also let others in your family know of your diagnosis, since they are more likely than the rest of the population to be diagnosed with prostate and breast cancers. They all need to be tested, and live a heart healthy life style. Heart healthy is prostate/breast cancer healthy.

    We are here for you, interface with us,  ask questions

     

    Frustrated

    I have gleason scores of 4+5 9 involving 30% 3+3 6 involving 5% 3+4 7 involving 60% and 4+4 8 involving 25%. I have no perineual invasion and tumors have not escaped. DRE was normal. Only the biopsy needle was able to detect the cancer. I have been waiting since December 8 to see oncologist, which is schedule for January 3.

  • Jerry Mac
    Jerry Mac Member Posts: 21
    edited December 2017 #11
    PSA

    Oops!!!! failed to reflect my PSA, which was a 4.6 prior to having the biopsy.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #12
    Start a new thread

    Dear Jerry Mac

    Best that you start a new thread at this site so you can receive input about your situation. Please include PSA history, results from digital rectal exam (finger wave in anus), results from biopsy to include number of cores taken; how many positive, gleason and percent involvement of each core that was positive, any other diagnostic or image test results.

    Best

     

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