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Thread: Elevated and rising PSA, what should I do?

  1. #51
    Experienced User
    Join Date
    Feb 2017
    Thanks, Chuck. All fair points.

    Yes, what I have in mind is ACTIVE in nature. PSA's, MRI's, biopsies, whatever. Intervention upon detection of clinically significant change or growth.

    And believe me, I understand that after the disease spreads beyond the prostate, the concept of "cure" no longer applies.

  2. #52
    Gerard, Best of luck to you with your self-monitoring efforts.

    What really concerns me is that the largest AS program, run by Dr. Laurence Klotz, concluded last year that the results for men with G(3+4) were not acceptable. You have G(4+3). You don't need a lecture from me, but I do hope that you spend a lot of time determining what type of treatment you will choose if/when that becomes necessary.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Five biopsies from 2009 to 2014. The third and fourth biopsies were positive with one core and three cores <5% and G 3+3. Fifth biopsy was negative.
    OncotypeDX: 86 percent chance of PCa remaining indolent
    August 2015: tests are stable; no MRI or biopsy this year for my AS program
    August 2016: MRI unchanged from 2/2014
    April 2018: PSA 4.4, Free PSA 26. No change from six years ago.

  3. #53
    Gerard....I wish you luck and peace on your journey. I fear you will need both. Please don't watchfully wait too long.
    72...LUTS for the past 7 years
    TURP 2/16, 24 g removed, 35 g remaining
    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
    Dry for first 8 weeks, ED very minimal
    PSA 0.32 to .54 over 3 months
    It's called Persistent PSA, Decipher + DCFPyl & MRI 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
    We'll see....what is not known dwarfs what is thought to be fact

  4. #54
    Your next step is to determine measures that will begin your intervention. Significant cancer growth is not measureable. Prostate size is, for example. Larger masses of cancer cells are measurable with MRI and other scans all designed more for treatment than diagnosis.

    G5 is a rare bird that flies out, once you see it, it's gone and too late. G4 is a rabbit, small, quick and stealthy. G5 and 4 reproduce rapidly. G3 is a turtle or sloth in all ways. Your plan is to herd rabbits.

    Within months, if not already, G5 and 4 can be out. It is all they do.

    G3 is what gives prostate cancer it's public face. Slow, indolent, an inconvenience that can be out lived. We all get it eventually and we don't die from it. It is surviveable, and the most common.

    G5 and 4 are not that. If not treated successfully and early they are survived only with toxic and unpleasant radiation, drug and chemical therapies, and for a limited amount of time.

    I, for one, think the intermediate risk classification is too broad if useful at all. In my world, 3+3 and 3+4 are low risk. Everything else is high risk. The current classification categories that include intermediate are better for treatment classification, and not cancer risk classifications.

    With primary G4 you get only one shot at possible early detection, if your lucky.
    Last edited by Another; 08-12-2017 at 02:03 PM.

  5. #55
    Hi Gerard! As you are "painfully" aware: your Forum Brothers & Sisters simply want the best outcome for you.

    Simultaneously, it is time for all of us to "cease fire" and let you complete the process of decision making. You have most wisely scheduled upcoming consultations with both an RO and a URO Surgeon. This is the most essential component of "The Process!" Ultimately, it will be best to heed the advice of these expert MDs.

    None here ever wants to hear another to say "I should have treated this sooner while it was curable.." Those making the decision to not treat must unselfishly consider the catastrophic impact this will have on family and caregivers who will be forced to provide support during long protracted process of death.

    I have no doubt that you and your MDs will arrive at the best decision and timing to "Avoid The Avoidable."


  6. #56
    I'm good with that. As long as it is clear to anyone following this thread that non treatment of primary G4 is not Active Surveillance.
    Born 1953
    family w/PCa; grandfather, older brother
    07-12-04 PSA 1.90
    07-10-06 PSA 2.02
    08-30-07 PSA 3.20
    12-01-11 PSA 5.69 Internist recommends urologist, I say no
    05-16-12 PSA 4.76 manipulate w/diet & supplements
    12-11-12 PSA 5.20, Health system changes to 3 years on testing
    03-07-16 PSA 7.20 Internist adamant on urologist
    DRE smooth, enlarged
    03-14-16 TRUS biopsy-prostatic adenocarcinoma 1%-60% across 8 of 12 samples, Gleason 3+3=6
    03-31-16 MRI pelvis w/o dye
    05-04-16 DaVinci prostatectomy, nerve sparing, Dr. Kent Adkins - recommend
    Final Path; weight 65g, lymph nodes, seminal vesicles, capsule, margin all negative, Gleason 3+4=7, Tumor volume 35%, +pT2c
    Catheter out - 16 days
    Incontinence at 6mos is minimal – no pad
    Cialis 3x/wk & Viagra on occasion
    Begin self-injection needle therapy for erections, stop after 6 due to onset of Peyronie’s
    Erections 100% - 14 months
    6-1-18 PSA <0.02, Zero Club 2 years

  7. #57
    Experienced User
    Join Date
    Feb 2017
    Well said, Michael, and thanks to you and everyone else who expressed respectful opinions or offered respectful advice.

    I've been sort of thinking out loud here the last few days. I haven't made any decisions at this point nor ruled anything out, but I do have three appointments with doctors over the next two weeks. Whatever course I end up taking, whether it's some variant of AS or conventional treatment, it will be with eyes wide open.

    As I said to Another, we're all on our own trains. And the first stop for everyone is at the same station. (The second and more important stop comes afterward, but that's a discussion for a different board.)

    God bless all of you guys.

  8. #58
    Senior User
    Join Date
    Jan 2013
    I've known four guys who had PC. Three of them died from it. So it is a killer. As for myself, I guess I'm on AS, although the doctor has not called it that. My PSA jumps around a lot, first biopsy found a few atypical cells, second all plugs were normal. Since the doctor knows more about this disease then I, what ever he recommends I do. If he said another biopsy I do it, or another PSA in 3 or 6 or 12 months I do it. And since he is a surgeon he will probably recommend surgery and if I'm healthy enough for it, that's what I will do. And because of the blood you found in your bed (assuming there was not a horse head under your sheets) I would go with surgery, if for no other reason but the doc can look around in there and spot anything abnormal. Good luck to both of us.

  9. #59
    Experienced User
    Join Date
    Feb 2017
    Here again with an update, guys.

    I'm kind of doctored out, and there's at least one more still to come before Decision Time.

    The doc at Hopkins, a very skilled and experienced guy, said my case is "classic" for surgery. But there is one complication. I had an inguinal hernia repair with mesh implanted last summer, which means I'm not a good candidate for open surgery -- the kind he typically does and prefers. This leaves the robot thing (RALP), which he also does and was willing to do on me.

    He doesn't see the situation as an emergency but also said I don't have the luxury of unlimited time to decide. He said studies have shown that with Gleason 4-3, long delays after diagnosis increase the risk of negative long-term outcomes. He thought that if I choose surgery, it should happen within 5-6 months at most. As for active surveillance, he said any presence of Gleason 4 blows that option out of the water as far as Hopkins is concerned.

    The thing is, what I've learned in the past, and this very much applied to hernia surgery as well as my wife's experience with a colon resection, is that docs who are aces at open surgery are not necessarily aces at laparoscopy and vice versa. And the robot adds yet another significant factor. But I did track down a person at Hopkins who by reputation and experience appears to be their top RALP surgeon. The earliest appointment he had was in November. I took it.

    Separately, I met with a radiation guy and heard the story on that, which I'm sure is familiar to most of you. Eight weeks or whatever of daily IMRT. One scenario concludes the regime with seeds. The other does not. What took me aback a bit was that in my case, both variants also call for hormone therapy, either before or at some point in the middle of the radiation treatment. The hormone therapy was recommended because of the Gleason 4 and the fact that my prostate is very large.

    Next, I talked to the Proton people. Pretty impressive presentation. However, the range and incidence of potential side-effects and after-effects appeared fairly similar to IMRT. In addition, there's not a lot of hard data on comparative success rates. No randomized studies yet. And as with radiation, they'd want me to do hormone therapy too. I haven't ruled it out, but I went there hoping to learn of some particular decisive advantage to it and didn't really hear the case made.

    One thing a couple docs said: with the grade, volume, and location of cancer indicated by my MRI and biopsy, if I do nothing at all, I'd probably be OK for 10 years or so. No symptoms. "Normal" life. I'd be 72 at that point. And right around then, maybe a little before or a little after, the bill would likely start coming due. In fact, I could then expect to die in my 70's of prostate cancer -- if I didn't die of something else first. The docs could not see why anyone in my shoes would want to choose that path.

    Of course the overwhelming majority of people would not -- for obvious reasons. Of those few who might, well, it's complicated. But I can understand it. Heck, in different circumstances, I might even prefer it. As things stand, however, I have a wife and large family to think about and can not willfully inflict that on them. So I'll be opting for treatment of one sort or other. I hope it's successful and ends up leaving me with roughly the same quality of life. But whether it is or is not, does or does not, I believe everything is in the hands of a Higher Authority, which is a major comfort.

  10. #60
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Yes, a Gleason 4+3 indeed blows the option of AS out of the water. But this means that you will hopefully be rid of this after treatment is completed.

    You are wise for doing all your homework and learning the pros & cons of all the options.
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Six annual post-op exams 2012 through 2017: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns into blue cheese.
    NOTE: ED caused by BPH, not the surgery.


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