8 Weeks Post Surgery

bob33462
bob33462 Member Posts: 76
in Prostate Cancer #1

Had my first PSA 6 weeks after surgery - uPSA 2.41 - I thought maybe too soon and next blood draw would be "0" - wrong had a gegular PSA blood draw 8 weeks after surgery - 2.6 - this rate my doubling time is ~ 4 months.

Now since these tests are not apples to apple - ultra sensitive 1st draw and regular PSA 2nd draw my calculation may be off some.

Fact remains have a high PSA without a prostate -- Urologist wants to start Lupron, but I am in the preocess of getting the 68 Ga PSMA Pet scan - either in California in a trial, if I qualiry, or in Germany, where I have a tentative 68 Ga scan booked for 8/4/16. The 68 Ga PSMA is currently the best out there.

Will hold off on Lupron until scan is completed and If distant Mets are found, I may pass on RT.

Not in a very good position ----

Bobby Mac

 

 

 

 

 

 

Comments

  • bob33462
    bob33462 Member Posts: 76
    #2
    On the Plus Side

    The only good news is that I am about 95% continent ---  :)

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited June 2016 #3
    68 Ga PSMA PET scan

    Bob,

    Being continent is a big plus for a PCa survivor. Congratulations.

    Regarding the high and doubling PSA, I am sorry for the news. I think you know well already about the means of everything regarding this disease so that I trust your reasoning. I think you doing it very well in have the 68-ga PSAM PET exam before any hormonal administration. In fact ADT can be started at any level of PSA without losing any benefit it may bring to one's treatment. I am also waiting for the timing of similar exam. My present PSA is in the bracket of 1.6 so that I want to wait till it reaches at least the PSA=2.0 mark, to be more assured of a positive result. Your PSA=2.6 seems appropriate already and the doubling may increase it further till August which will assure you a better chance in locating the bandit. At that time you can then define a better salvage therapy.

    I wonder how you got the appointment for the tests in Germany. Can you provide me details (address, cost of test, etc), in case I follow your steps.

    Best wishes and luck in your continuing therapy.

    VGama

  • bob33462
    bob33462 Member Posts: 76
    edited June 2016 #4
    Germany Contact

    International.Office@med.uni-heidelberg.de

     

    I first sent an email to the above - then was asssigned a case manager -

    Estimated cost 1,900 euro - about $2,200

    I reached two others in German, but this was the least expensive -

    I tried reaching out to Austrialian Hospitals too, but never heard back.

    Bobby Mac

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited June 2016 #5
    State-of-the-art PET exam

    Thanks you Bob for the information.

    Can you say something regarding the need of a doctor's referal to be accepted for the exam; or, any specific preparation pre exam; or, any reference in regards to medications that should be stoped/avoided before the exam, etc ?

    I believe that many survivours reading this thread are taking notes on our exchanged information on the PSMA PET exam. I would recommend them to read our stories in these links;

    https://csn.cancer.org/comment/1539793#comment-1539793

    https://csn.cancer.org/comment/1504743#comment-1504743

    Here are links regarding the best in PET image studies using state-of-the-art contrast agents;

    http://www.eurekalert.org/pub_releases/2015-05/sonm-rop050415.php

    http://www.europeanurology.com/article/S0302-2838(15)00513-8/abstract/initial-experience-of-68ga-psma-pet-ct-imaging-in-high-risk-prostate-cancer-patients-prior-to-radical-prostatectomy

    http://www.ncbi.nlm.nih.gov/pubmed/25738559

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3456485/

    Best wishes

    VG

     

  • bob33462
    bob33462 Member Posts: 76
    edited June 2016 #6
    State-of-the-art PET exam

    Vasco -

    The International Heidleberg hospital location did ask for:

    - Histology report
    - surgery report (if surgery performed)
     " MRI (Full body MRI), CT, PET-CT or Sonography - the current medical report is enough,     not older than 2 weeks
    - complete Epicrisis (including chemotherapy protocols and/or radiation plans) from the beginning!
    - description of the patients current condition (including height and weight)
    - blood-test-results (    not older than 1 week), evtl. endoscopic and/or nuclear medical results"

    Some things I did not have, i.e.MRI-   but it did not prevent my scan from  being scheduled.

    Bobby Mac

     

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #7
    Locating metastases with the purposes of pursuing a treatment

    Bob,

    Thanks for the above info. I read that you were included in the trial for Gallium-68-HBED-CC-PSMA Imaging (PET). Congratulations.
    How did you managed to get into this USA trial. Did you contact them directly or was it by your doctor's referral?

    https://clinicaltrials.gov/ct2/show/NCT02611882?term=thomas+hope&rank=1

    I hope many of our comrades apply and get this exam, even those with lower PSA of 1.0.

    Though the scan is only to try to locate metastases, the final goal should be to treat and get rid of the bandit. Therefore, one should think in preparing a feasible treatment strategy with his doctor to follow in case the PET scan is successful.

    Best wishes,

    VG  

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #8
    Just wonderful

    Thanks for the specifics. Wonderful.

    VG

  • bob33462
    bob33462 Member Posts: 76
    #9
    VascodaGama said:

    Locating metastases with the purposes of pursuing a treatment

    Bob,

    Thanks for the above info. I read that you were included in the trial for Gallium-68-HBED-CC-PSMA Imaging (PET). Congratulations.
    How did you managed to get into this USA trial. Did you contact them directly or was it by your doctor's referral?

    https://clinicaltrials.gov/ct2/show/NCT02611882?term=thomas+hope&rank=1

    I hope many of our comrades apply and get this exam, even those with lower PSA of 1.0.

    Though the scan is only to try to locate metastases, the final goal should be to treat and get rid of the bandit. Therefore, one should think in preparing a feasible treatment strategy with his doctor to follow in case the PET scan is successful.

    Best wishes,

    VG  

    Vasco-

    Vasco-

    I made the inital contact with Thomas Hope, MD, who is running the trial, - at first I did not qualify with only one PSA post op - I needed to have increasing PSA numbers. After my second PSA went up from 2.4 to 2.6, I notified Dr Hope and he said I qualified and had his assistant contact me with particulars.

    I did need my MD to write an order for the scan and send in some my of medical information. When that was done, I called a number I was provided and made an appointment for the scan.

    Bobby Mac

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