Looking for advise/help please

CThughes
CThughes Member Posts: 21
in Prostate Cancer #1
Hey ya'll,
Well it's been a while since I posted, but I need some advise. The brief history is;

1 - Last fall my prostate went from 4.3 (and I had a biopsy maby a year before) to 11.something in about 3 months.

2 - 2nd biopsy last fall was positive.

3 - Radical prostatectomy on 1/9/12

4 - First PSA one month after surgery was 0.0

5 - Next PSA 2 months later (I guess around mid april) was 0.2

6 - Doctor said don't get excited yet, lets keep checking. We have been checking something like every 6 weeks or so since then. the numbers have been approximately
0.2
0.17
0.23
0.47

That last PSA of 0.47 was back on October 24th or 25th. My doctor has scheduled me for another PSA in 2 months, Dec 21, 2012. Doc says that I still shouldn't get excited and that he doesn't normally recommend changing course until the post-op PSA reaches 1.0. In you guys experience, are these numbers alarming, because they are kind of alarming to me. i know PC is a slow actor, but with a PSA rise from basically 4 to basically 12 in a couple of months, does this appear to be kind of an active/aggressive strain I've got here? i have seen on this forum where other folks have had a PSA show up again 2 or 3 years after surgery, and mine is back in 2 or 3 months. Am I worrying too much over nothing.

Oh, left something out of the history. I lost a kidney to Renal cell Cancer a couple of years ago. My 6 month scan in october showed a spot on my remaining kidney. Doc says it's real small and that it could be a cist or a hyperdense somethingorother. he says it's too small to tell what it is and he wants to wait about 6 months and do some type of renal scan. if I had 2 kidneys and had never had cancer, I probably wouldn't think much of it, but given my history...... Could this spot be the source of my current PSA number or am I just being a big paranoid baby?

Sorry for the War & peace length post.

Todd

Comments

  • JFredB
    JFredB Member Posts: 9 Member
    #2
    Hi Todd,
    This all sounds
    Hi Todd,
    This all sounds very similar to my situation.
    Last fall my PSA was 5.7
    Biopsy was positive for cancer in 4 of 12
    Radical prostatectomy on 1/16/12
    PSA after surgery was 0.1
    one month later O.2
    later 0.1
    However; when the prostate was removed, cancer was found in the margin. The doctor said that any cancer remaining could have been destroyed when he cauterized the prostate bed during surgery and he thought I should wait until I healed further and then if I had any PSA above 0 to get radiation to be sure the cancer was killed. I waited until October then started getting nervous about putting it off. I decided to go ahead with radiation therapy as my PSA was between 0.1 and 0.2 I have now completed 23 of 38 days of radiation. I'm still working full time with a very understanding company. It takes about an hour out of my day and I have also been somewhat tired but nothing major.
    It is your health that you are talking about and concern on your part should not be so easily dismissed. In other words, don't put yourself down for being concerned and trying to learn more so you can make a better decision. If anyone even remotely suggests that you are being immature for your concern just disregard what they say and continue to look for the answers yourself.
    The PSA is a measure of the prostate specific antigen. The antigen is produced by your body in reaction to any cells (cancer) having their origin in the prostate. The renal cell cancer would not necessarily be measured by PSA as its origin is not from prostate cells. This is my understanding and I am no expert on this although I have some basic understanding of immunology. Although some say a little understanding of something can be dangerous :). If anyone has a clearer understanding of this please post.
    My suggestion would be to get a second opinion on both the kidney spot and on your PSA rise. You have taken action against the prostate cancer by having the prostate removed; I would think it would be wise to investigate additional possible treatments due to your slow rise in PSA. It could be nothing to worry about but I wouldn't take the chance.
    Good Health to you!
    Fred
  • Kongo
    Kongo Member Posts: 1,166 Member
    #3
    Weird Science
    Todd,

    Your doctor seems to have invented his own method for determining post RP biochemical failure requiring follow-on treatment.

    The generally accepted norm used by the urological community in determining failure after RP is a PSA level of 0.2 ng/ml or greater, which is where you seem to be at this point.

    Your doctor's method of gauging when to consider moving on to hormone therapy, radiation, or both seems to be using a level FIVE TIMES what everyone else is using. I wonder what he's basing this on? Some kind of gut feel or what? I would ask him, if I were in your shoes, to explain his methodology and find out what it is based on since it is conntrary to medical convention.

    I also suggest that you Google biochemical failure post RP to read for yourself the criteria the rest of the world is using.

    Good luck.

    K
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #4
    Kongo said:

    Weird Science
    Todd,

    Your doctor seems to have invented his own method for determining post RP biochemical failure requiring follow-on treatment.

    The generally accepted norm used by the urological community in determining failure after RP is a PSA level of 0.2 ng/ml or greater, which is where you seem to be at this point.

    Your doctor's method of gauging when to consider moving on to hormone therapy, radiation, or both seems to be using a level FIVE TIMES what everyone else is using. I wonder what he's basing this on? Some kind of gut feel or what? I would ask him, if I were in your shoes, to explain his methodology and find out what it is based on since it is conntrary to medical convention.

    I also suggest that you Google biochemical failure post RP to read for yourself the criteria the rest of the world is using.

    Good luck.

    K

    Getting excited

    CThughes

    You are not “worrying too much over nothing” and you are not a “paranoid baby”. Recurrence is apparent and you need to do something.
    Your doctor is being over optimist now at this eleventh month post op. The constant increase tells everything needed to know.
    I would suggest you to start reading about salvage treatments and prepare for getting second opinions from radiologists and medical oncologists.

    For being a kidney patient you may have to take special care, particularly with hormonal treatments. Some drugs interact with medications for other illnesses and you should discuss in detail with your oncologist.
    Try reading about the side effects of treatments because they will superimpose to the ones you got from surgery.

    Hope for the best.

    VGama
  • caseyh
    caseyh Member Posts: 63
    #5
    When to start treatment after a recurrence
    Todd

    Many doctors, especially those associated with large academic hospitals practice evidenced based medicine. I was told by a pretty prominent doctor that studies show that there is no advantage to beginning hormonal therapy early after a recurrence. Many doctors consider Gleason score, PSA doubling time & PSA velocity to make the determination of when to start hormonal therapy. The PSA range is generally between 1.0 & 5.0, and the start time is completely arbitrary from doctor to doctor. The side effects of HT also play a part in the determination. That said, I do not subscribe to this practice, and I left one doctor who refused to begin a second round of HT at a PSA of 1.5. If you are uncomfortable with your doctor's treatment philosophy, I strongly suggest that you find another doctor. It is important for you to believe that both you and your doctor are on the same page.

    In my opinion, you have experienced a recurrence. VG's advice to investigate salvage radiation treatments, and seeking second opinions from radiologists and medical oncologists is right on target.

    I know people who have had PCa metastasis to the kidney, however it generally takes time for this to happen. Small spots on the kidney or liver are sometimes difficult to characterize for the radiologist reviewing the scan. Most likely the spot is nothing, but it is important to monitor the spot for changes with followup scans. If I were you, I would begin educating myself about additional treatment options now.

    Good Luck!
  • CThughes
    CThughes Member Posts: 21
    #6
    caseyh said:

    When to start treatment after a recurrence
    Todd

    Many doctors, especially those associated with large academic hospitals practice evidenced based medicine. I was told by a pretty prominent doctor that studies show that there is no advantage to beginning hormonal therapy early after a recurrence. Many doctors consider Gleason score, PSA doubling time & PSA velocity to make the determination of when to start hormonal therapy. The PSA range is generally between 1.0 & 5.0, and the start time is completely arbitrary from doctor to doctor. The side effects of HT also play a part in the determination. That said, I do not subscribe to this practice, and I left one doctor who refused to begin a second round of HT at a PSA of 1.5. If you are uncomfortable with your doctor's treatment philosophy, I strongly suggest that you find another doctor. It is important for you to believe that both you and your doctor are on the same page.

    In my opinion, you have experienced a recurrence. VG's advice to investigate salvage radiation treatments, and seeking second opinions from radiologists and medical oncologists is right on target.

    I know people who have had PCa metastasis to the kidney, however it generally takes time for this to happen. Small spots on the kidney or liver are sometimes difficult to characterize for the radiologist reviewing the scan. Most likely the spot is nothing, but it is important to monitor the spot for changes with followup scans. If I were you, I would begin educating myself about additional treatment options now.

    Good Luck!

    Thank you
    Thank you all for taking the time to respond. I asked my regular family doctor for a referral for a second opinion, and they told me talk to the urologist/cancer doc again, then they would give me a referral. I've already talked with him so I'm a little frustrated. I will seek a second opinion elsewhere and let you know .

    Thanks
    Todd

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