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 4 of 4 FirstFirst ... 234
Results 31 to 36 of 36

Thread: Need lots of advice - PSA rising - results I didn't want to see

  1. #31
    Experienced User
    Join Date
    Nov 2017
    Posts
    67
    Hi Tim,

    To answer your question, I had surgery on October 2, 2017. The first two Psa tests at 3 month intervals were undetectable. In Aug. 2018, I tested at .04. Six weeks later I tested at .06. A third test the end of November was.07. At that point we assumed I would be starting ADT and salvidge radiation, but my doctor scheduled a Axumin pet scan. The read of the scan indicated I had extensive metastatic involvement in my lymph and skeletal system. At that point radiation was taken off the table. I scheduled a treatment review at Dana Farber, which is probably the smartest thing I have ever done in my life. Two radiologists at Dana Farber felt that the pet scan was entirely normal, and I went from having one foot in the grave, to scheduling salvidge radiation. Definitely a cautionary tale for finding the best, most experienced cancer center for your treatment.

    Eric

  2. #32
    Quote Originally Posted by enock View Post
    ......A third test the end of November was.07. At that point we assumed I would be starting ADT and salvidge radiation, but my doctor scheduled a Axumin pet scan. The read of the scan indicated I had extensive metastatic involvement in my lymph and skeletal system. At that point radiation was taken off the table......
    Hi Eric! Did this occur at Hopkins?

    If there were a single focus of remnant/recurrent PCA, an Auxumin scan could possibly I dentify it at a very low PSA. However, it seems impossible to have "extensive metastatic involvement in my lymph nodes and skeletal system with a PSA of 0.07! Did they ask if you were experiencing symptoms such pain? It appears that the scan somehow got mixed up and was not yours which creates an even bigger problem for the other patient.

    Very glad that you since went to DF and are currently in their expert care. Did you ever touch base with trinity3? Steve had his RALP at Johns Hopkins and later SRT combined with HT at DF. He had a superb experience!

    Good luck! Keep us updated along your DF journey to Cure.

    MF
    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 = Gleason 7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left Positive Margins + EPEs. 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 / Prostate Size = 32 grams; Tumor = Bilateral; 20% / Perineural invasion: 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 84 Months Post Op: Mean = 0.021 (20x uPSAs: Range 0.017 - 0.026) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  3. #33
    Experienced User
    Join Date
    Nov 2017
    Posts
    67
    Hey Michael,

    This did not happen at Johns Hopkins. I also do not think that the scan was mixed up, I think it was a function of inexperience. The hospital only had the Axumin scan for two months. Dr. D'Amico's nurse (who I think is really running the show) said there is a tendency among the inexperienced to over read the scans.
    My bigger problem with my former hospital was the no one seemed willing to question the results, or dig a little deeper. As you said, it was extremely unlikely the the scan would show these results at such a low Psa. In addition, the scan supposedly was showing cancer everywhere but the pelvic area, where you would expect it to show up first. I can tell you though when I got the good news from Dr. D'Amico's, I felt like a death sentence had been lifted.

    Eric

  4. #34
    Hi Eric! What an awful experience to go through 100% unnecessarily!

    Most fortunately you are now connected with Dr D who is a Titan among the PCA Gods!

    Again, send trinitiy3 a PM. Steve is a wonderful guy who had the best experience with Dr D & his DF Team.

    You should take in a Red Sox game. It is less than a mile walk from DF to Fenway! (I know the area well. Went to high school - Boston Latin - around the corner from DF and after college worked across the street in surgical research at "The Brigham" for 9 years.)

    MF

  5. #35
    Top User garyi's Avatar
    Join Date
    Apr 2017
    Posts
    1,172
    Quote Originally Posted by enock View Post
    .....Dr. D'Amico's nurse (who I think is really running the show)
    That woman may be running the world. If not, she'd like to

    She is a first class firewall for the amazing Dr. D'Amico. Steve (trinitiy3) is a great guy, as is MF.

    Good luck getting tickets to a Sox game. Glad it's working out for you, Eric.
    72...LUTS for the past 7 years
    TURP 2/16,
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2c pNO pMn/a Grade 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor remains in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19
    We'll see....what is not known dwarfs what is thought to be fact

  6. #36
    Experienced User
    Join Date
    Nov 2017
    Posts
    67
    Michael, Garyi, thank you for your comments. Dr. D and his team are really on the ball, and I am also very pleased with my medical oncologist at DF, Dr. Sonpavde. One thing I have noticed is how well my two doctors have communicated with each other. No one can say how all of this will all turn out, but at least I am confident I am getting the best possible care.

    Eric

 

Similar Threads

  1. I didn't want...
    By Marian333 in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 67
    Last Post: 12-20-2015, 12:29 AM
  2. I really didn't want to be back here
    By WellLoved in forum Lung Cancer Forum
    Replies: 5
    Last Post: 03-12-2014, 12:09 AM
  3. Can't see the friends I want to see and need advice.
    By numberthree in forum Coping and Support
    Replies: 2
    Last Post: 01-24-2014, 06:42 AM
  4. Didn't see this coming !!
    By olduck in forum Lung Cancer Forum
    Replies: 24
    Last Post: 07-26-2011, 01:41 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
  •