Re-occurring Prostate Cancer

debit
debit Member Posts: 9 Member
edited December 2023 in Prostate Cancer #1

I am new to the forum and have been reading.

I am a 12 year prostate cancer survivor after surgery. I have incontinent and manage it with pads (3-4 a day) and a Cunningham clamp. But four years ago, my PSA went from non-detectable to 0.02, 0.03, 0.09, 0.17 and is now 0.36 after a 6 month ready of 0.26. (I replaced the family doctor who advised me that the 0.17 ready was so tiny that I need not worry about it, and I do have a family history of prostate cancer). These number project with 95% confidence that on October 6, the PSA will be at about 0.39.

I have a PYLARIFY - PSMA (piflufolastat F18) PET/CT scheduled on October 6. I am looking for information about this type of body scan. Information will be greatly appreciated.

Comments

  • debit
    debit Member Posts: 9 Member
    #2

    whoops: (I replaced the family doctor who advised me that the 0.17 ready was so tiny that I need not worry about it, and I do have a family history of prostate cancer). These number project

    This should read , "that the 0.17 reading"..... Also , "These numbers..."

    Sorry.

    Debit

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #3

    So sorry to read this. It appears that your cancer has metastasized after all these years.

    The purpose of the scan is to possibly identify (major; relatively speaking) cancerous sites. This could help with setting up a treatment plan.

  • eonore
    eonore Member Posts: 185 Member
    #4

    Hi Debit,

    I am sorry that your prostate cancer has recurred. I hope that you are conferring with a radiation oncologist and a medical oncologist that specialize in prostate cancer. If they are at a cancer center of excellence, all the better. The purpose of the pet scan is to try to determine if your cancer has spread beyond the prostate bed and pelvic area. If the scan is clear, you are probably a candidate for salvage radiation with perhaps a short course of hormone therapy. This is quite tolerable, and gives you a second bite at the apple to cure your cancer. The fact that you are at twelve years since surgery before recurrence, is a good sign.

    Let us know some details about your Gleason score post surgery, and your age, physical condition, etc. Let’s hope the pet scan is clear.


    Eric

  • debit
    debit Member Posts: 9 Member
    #5

    Eric,

    Yes, the previous comment was a bit depressing. I am 88 and in good physical health. My BP is about 126 / 61. I am 5' 9" at 165 pounds.

    I still play a musical instrument, elk hunt and fish for salmon from my boat. ( I am smoking salmon as I write this.)

    I believe that the Gleason score was 7.4. (as was my brother's cancer) At surgery, three lymph nodes were taken and all were clear. There was no therapy recommended at the time.

    Actually, the oncologist said he is hoping that the cancer location can be identified and therapy applied. He referenced radiation.

    I read that the two hour test uses a new drug that was recently approved.

    Thank you for your comment.

  • debit
    debit Member Posts: 9 Member
    #6

    An update. Last month, with a PSA reading of 0.36, I had a PYLARIFY - PSMA PET/CT. The test found nothing. Rather than waiting another six months for another test, I asked for a second opinion with a radiation oncologist. He recommended immediate radiation treatment (38 treatments for 8 week period) and chemical castration. He said the statistics show that waiting to identify the location of the cancer is not the best chance for success; that the probability of success drops very significantly. He was encouraged that my original pathology report in year 2010 showed no cancer outside the prostate and that I had no detectable PSA readings for 8 years.

    I start next week with the simulation appointment, MRI and radiation.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #7

    Looks like an excellent action plan.

    Why not start Androgen Deprivation Therapy/hormone treatment/chemical castration right away as well?

  • debit
    debit Member Posts: 9 Member
    #8

    I should have also wrote that four chemical castration shots will also start. Sorry for the oversight.

  • debit
    debit Member Posts: 9 Member
    #9

    Update:

    On Thursday, I first did the simulation where they made a form mold and got "tattooed". I then went to Imaging where I had an MRI. The MRI doctor wrote that I have micro artifacts in the prostate bed. (from my right hip implant) and "lobulated soft tissue at and caudal to the prostate bed at the base of the penis".

    I am pleased that I am following the oncology doctor's advise to NOT wait for further PSA tests.

    I start radiation treatment next week.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    edited November 2022 #10

    Those radiation sessions are typically uneventful. It's a pretty long road, but they will come to an end. Just start counting them off.

    Good luck with it all!

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #11

    Yes, your oncologist's recommendation follows the NCCN guidelines. A PSA above 0.20 ng/ml signifies recurrence. In these cases, typically treatment is recommended at a level of 0.40 ng/ml but your PSA histology identified the occurrence earlier. However, in recurrence cases, having a family history of prostate cancer doesn't influence judgments on the need of earlier or later salvage therapies.

    You haven't lost any chance in the success of cure by getting radiation only now. The scope of the RT would have been the same was the PSA 0.17 or 0.40.

    In your shoes I would engage in investigations regarding a preparedness plan to mitigate the ADT and radiation side effects.

    Best wishes for the success in your continuing journey.

    VGama

  • debit
    debit Member Posts: 9 Member
    #12

    Thank you. The oncologist was encouraged that my PSA readings were straight line, rather than exponential. I have requested that the ADT treatment be transferred to the same health clinic system, and I don't know the specific drug to be used. During all this process, I have switched doctors twice; first from the family care doctor that said that since the PSA was so tiny, I have nothing to worry about. And second, from the urologist to the oncologist. Then, on January, I switch insurance companies. Thank you, again.

  • debit
    debit Member Posts: 9 Member
    #13

    Update. Today, I have completed 10 of the 39 radiation treatments. I feel fortunate that I had requested a second opinion and believe that his decision to start radiation was the correct choice. And especially after seeing my PSA jump to 0.51 after the October reading of 0.36. I am taking Bicalutamide now and will get the Lupin shot in two week.

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    edited December 2022 #14

    Debit,

    Being positive and trusting the treatment and the doctor is a step forward for the success. You have switched doctors and now you gained confidence and peace of mind. Hope for the best.

    In any case, your family doctor who advised you that the PSA of 0.17 was "tiny", should also be considered correct. The NCCN guidelines on prostate cance, followed by most doctors and institutions around the world, recommend that patients older than 75 should not be guided to radical treatments (surgery or radiation). A PSA of 0.17 ng/ml in a guy with Gleason score of 7 is in fact low which allows time to postpone any urgent intervention.

    The PYLARIFY - 18 F-DCFPyL PSMA PET/CT was also expected to be negative because of the low PSA level of 0.36 at the time of the scan. This exam is prune to false negatives or positives in cases of PSA lower than 0.80 ng/ml.

    You seem to be fit at 88 years old and I hope that the radiation therapy will not harm you or deteriorate your quality of life.

    Best wishes for a successful outcome.

    Merry Christmas

    VGama

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #15

    Hello debit,

    Just thought I'd add my 2c worth. I went through salvage radiation 6 months after my (failed) surgery and the biggest issue I had with it was fatigue. I was doing well with it until about a week to go, then hit the wall. I ended up taking two weeks off to recover after the sessions ended. Even when I did go back to work, I felt lethargic for many weeks after. I also had some persistent loose bowel motions for a while but they slowly returned to normal.

    I hope you're doing well. I guess with your combined radiation and hormone therapy, you might not be able to tell which one might be giving you certain side effects along the way. Best of luck.

  • debit
    debit Member Posts: 9 Member
    #16

    An update: one year later, my PSA is un-detectable.

  • oldspice
    oldspice Member Posts: 58 Member
    #17

    Well damn “debit” that is great fantastic news. I appreciate you taking your timeout to sharing the positive side with the rest of us. Always great to hear a fighter who wins the battle. Congratulations. Go celebrate!

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #18
    https://csn.cancer.org/discussion/comment/1711362#Comment_1711362

    That's a nice Christmas present. Hope you are feeling well!

  • lighterwood67
    lighterwood67 Member Posts: 395 Member
    #19

    Great news.

  • oldspice
    oldspice Member Posts: 58 Member
    #20

    I am meeting for first time on Dec 20 with both oncologist and urologist to review my PSMA scan results and my next steps forward. I have a list of questions for them but I’m asking those of you who have been here already, what are your 3 most important questions to ask them? Your input and wisdom is highly regarded. Thank you all.

    Doug age73, 4+3 mid lateral SUV 3.6, internal iliac lymph node SUVmax 9.1

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