Gleason 9 PSA 26 day 1

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Comments

  • roncouch
    roncouch Member Posts: 6
    Gleason 9
    Hi Mike,

    I got you beat with a Gleason 5+5 (10) a couple of weeks ago.

    I know it's a frightening situation, and I pray for good results for all of us. I'm 74, and thought I was in great health until a routine blood test showed the alkaline phosphatase high. That led to a bone scan, ct scan, prostate biopsy and the meeting with my medical oncologist. The PSA had jumped from 0.2 to 2.4 which sounds great, but the doctor said not so as it was a rapid increase. Anyway, my prostate cancer has spread to the bone - wide spread, and will be getting another ct scan to see if I need to have the neck of the hip bone pinned.

    The plan is to radiate the area (hip) most damaged and start on hormone therapy. I recently started taking 50 mg of Bicalutamide (hormone therapy) and as soon as Medicare approves it, will start on an injectable hormone therapy. One to build up the bones - the other to slow down the cancerous cell growth. I have some pain, but easily controlled with an occasional pain pill.

    There is no plan to remove my prostate.

    The tools are technology, faith, prayers, knowledge and a positive attitide. The medical folks have come a long way in just that past couple of years.

    Please keep in touch and I will do the same.

    Ron
  • dwhite1031
    dwhite1031 Member Posts: 26
    Have you considered MD Anderson?
    Hello Mike, pleasure to meet you. I too am a Gleason 9, was diagnosed 7-13-12, and after receiving treatment options locally, we decided to go to MD Anderson Cancer Center in Houston, TX.
    They are one of the leading cancer treatment and research hospitals in the world, and we are very glad we made the choice to go there.

    You can read more about my particular PCa situation here: http://csn.cancer.org/node/243848

    You will find a lot of information here and the folks that share their experiences with you are just absolutely awesome!

    Most have been or are currently on the same journey you are now on, or are a caregiver for a PCa club member.

    Prayers and blessings your way as you fight along with us and we with you!

    Doug
  • Samsungtech1
    Samsungtech1 Member Posts: 351

    Have you considered MD Anderson?
    Hello Mike, pleasure to meet you. I too am a Gleason 9, was diagnosed 7-13-12, and after receiving treatment options locally, we decided to go to MD Anderson Cancer Center in Houston, TX.
    They are one of the leading cancer treatment and research hospitals in the world, and we are very glad we made the choice to go there.

    You can read more about my particular PCa situation here: http://csn.cancer.org/node/243848

    You will find a lot of information here and the folks that share their experiences with you are just absolutely awesome!

    Most have been or are currently on the same journey you are now on, or are a caregiver for a PCa club member.

    Prayers and blessings your way as you fight along with us and we with you!

    Doug

    Feeling good
    We all have opinions and one of us might be right. You have to make that decision. Unfortunately it is a fear based, worse case based option. Breathe and see exactly what is going on. We all have made, or are making life decisions. Take a deep breath and clear your head. With a 9 you are up there with all of us. I chose to cut it out and go with radiation treament to bladder. Others have used seed implants. VA says I should only live 2.88 years. Stats say 5 max. Yet there are plenty of men on this site who have lived longer. Flip of a coin to see what side you end up on, but Dr. Myers prostate cancer book. With diet and exercise will help you tremendously. Life style changes help prolong all the good things. Do not jump to any treatment because of a friend, etc. Use knowledge and research to guide you.

    Good luck,

    Mile
  • caseyh
    caseyh Member Posts: 63
    mrspjd said:

    Gleason 9
    Hi Mike,

    Welcome here. Sorry to read of your G9 dx but glad you’ve got that fightin’ 9r spirit and positive attitude. That's what counts.

    I think you may be referring to “velocity.” Here’s an informative article by Dr. Stephen B. Strum on PSA velocity (PSAV) and PSA doubling time (PSADT), among other things, that might answer some of your questions:
    http://www.prostate-cancer.org/pcricms/node/119
    Dr. Strum is a well known and respected PCa oncologist. He is also the author of an excellent book on PCa.

    I’m not sure I understand your statement: “My biopsy path report has identified ‘Extra prostatic extension’ as well as ‘Perineural invasion.’” My husband’s bx (biopsy) reports, both the initial report and the expert 2nd opinion pathology specimen report from Johhs-Hopkins, indicated and confirmed Perineural Invasion (PNI). When PNI is identified on bx, it indicates that ECE (Extra Capsular/Prostatic Extension) may be more likely, not necessarily that ECE is present. In his case, ECE was confirmed with add’l diagnostic tests including an EMRI (Tesla 3) and a color doppler ultrasound (CDU). What I don’t understand is how your prostate core biopsy could determine Extra Capsular/Prostatic Extension. I wonder if it’s possible that you also had a lymph node biopsy. Perhaps you might clarify that bit of info.

    Re EMRI with spec. using Tesla 3 technology: if you’ve had a lymph node bx, and it was positive for PCa, then an EMRI is not indicated, IMHO, since ECE has already been established. However, if bone scan and pelvic CT are negative, further diagnostic testing such as an F18 PET/CT or a C11 Choline (see below) would be indicated. They may determine if there are distal mets, such as to soft tissue or bone. The info you obtain from these tests may be important to consider when evaluating which tx options have the best outcome with the least amount of short and long term side effects based on your PCa Tumor staging.

    As for the Feraheme (USPIO) contrast agent with MRI being used in Florida: it’s considered experimental, being used off label, and is not covered by insurance. IMHO, its limitations are that it identifies metastasis in lymph nodes only and only when there is significant mets. An F-18 PET/CT may be a better diagnostic tool for detecting advanced PCa mets and is covered by Medicare and most insurance if under age 65, as you are. A newer imaging test, considered experimental and only offered in a few locations nationwide is the C11 Choline. It’s not covered by insurance but there may be one open trial. If interested, you may wish to search the PCRI website for more info. You may also be interested in watching Dr. Kwon’s presentation (from last years PCRI conference) discussing his use of C11 Choline imaging and systemic vs focal PCa mets, including soft tissue and bone mets. Here’s that url: http://askdrbarken.wordpress.com/2011/12/25/c-11-choline-petct-scan-dr-eugene-kwon-mayo-clinic/

    Good luck and best wishes as your journey begins.

    mrs pjd
    wife of a PCa survivor, T3 stage

    Feraheme USPIO Scan
    It should be noted that Feraheme is being used in place of Ferumoxtran-10 which was used as
    early as 1999. The MRI results using Feraheme are as good or better than its predecessor.
    Feraheme enhanced scans can pick up metastases in lymph nodes well below the size limitations of standard scans, allowing early detection and targeted intervention. The Feraheme scan is used in conjunction with an F18 Pet Bone Scan, & CT Scans with & without contrast.
  • jmikew
    jmikew Member Posts: 21
    So sorry
    I really wish there were no new members to this site or to the "club"...sorry to hear about your pc and wish you the best...I would agree with going to md anderson as that is where I got my treatment and they are amazing!...I had surgery but wouldn't do it if I knew it was outside the gland as the surgery is a whip and my doc said it wouldn't do any good if they knew it had advanced...wish you all the best.
  • Bluey
    Bluey Member Posts: 2
    jmikew said:

    So sorry
    I really wish there were no new members to this site or to the "club"...sorry to hear about your pc and wish you the best...I would agree with going to md anderson as that is where I got my treatment and they are amazing!...I had surgery but wouldn't do it if I knew it was outside the gland as the surgery is a whip and my doc said it wouldn't do any good if they knew it had advanced...wish you all the best.

    Gleason 9 Club
    Hi Mike, All previous posts are on the ball. I'm Australian & Aussie based. Treatments may be slightly different over here. I am 75 years old & have been having PSA checks for last 30 years or so, due to family history of cancer. Within 3 months my PSA jumped from 2.5 to 5.6. I elected to have the 3d MRI which showed an enlarged prostate with a rear lesion and suspected invasion into both seminal vests. My scores were on 3rd June a Gleason 5 + 4 = 9, and PSA was 5.6 prior to female hormone Zoladex implant, then on 08/08/12 the PSA reading was 0.17. That day the urologist planted 4 gold seeds in prostrate. Started Radiotherapy on 27th August. Now into my 4th week, prognosis is another 4 weeks or so RT with Zoladex implants every 3 months for the next 30 – 40 months. Dr advise is get ultra fit, drink lots of water, take Selenium, Calcium & Vitamin D, lots of rest, a positive attitude including meditation helps nervous system, memory & the subconscious, I find the latter is my problem, it just will not let me get into deep sleep. Wife is very understanding and realizes fully what I am going through. My side effects are: Bad sleep patterns, lack of energy, no libido, Low Haemoglobin count down to 123, memory plays tricks, bad nerves (all fingernails chewed), increased belly (3 inches), not my normal self. Dr states I must realize that the effects are similar to female puberty, and I must understand I am sick ( I don’t feel sick). So, with my wife’s help I work out at the gym 5 days a week. The gym owner who is my P.T. gives me free training to help me over my problem (he is great). I have a close friend who is 12 months ahead of me plus a cousin who is a month behind me both with prostrate so we talk things over & help with prayer & consideration. Mentoring like this web page is a great help. We have to be fighters. I don't have the "BIG C" I have a prostrate problem. I am alive, fit,with great people caring for me. My problem is defeatable No pity me's please.

    All the very best. Keep us posted, Cheers, Bluey