Early treatment prior to PSA rising when my cancer doesn't seem to produce much PSA

To surgery July 2015 pathology report -  Gleason 9, positive margin, lymph node involvement, extra capsulary extension. Past 10 yrs psa ~2 all dre negative... Till March 2015. Psa 2.76 BUT dre was positive. Day of surgery psa only 4.76. Seeing med oncologist psa .04, .03 .02 . O5, .05, .03. Referred to rad oncologist . Due to extent of cancer....and psa not being a good indicator they want to start 6 months hormone therapy and 7 weeks of radiation. We certainly want to stay on top of this and not being able to use psa as an accurate measure of cancer we understand treating this prior to psa rise to .1 or .2. Has anyone else had any experience with this?  Also looking into choline 11 pet scans but I understand they are useless with psa under 1. Comments ? Also how come with any other cancer if there is any lymph node involvement they start chemo... But not with prostate cancer?


Yecart 1977

9 Replies

  • Yecart,

    In the DRE era (prior to the PSA test) PCa was usually found late in the game. 

    At the start of the PSA era, the test was thought of as being useful in monitoring men known to have PCa.  It was considered to be unsuitable as a screening tool.

    Nevertheless, there was great demand for something better than the DRE.  

    The rationale for using a PSA cutoff of 4.0 for biopsies seems to have been that the 20% detection rate justified the morbidity suffered by the other 80%.  Lowering the cutoff would sweep in far too many men.  Too bad about the men with PCa & low PSA.   

    With less screening, there is now less detection, but the American Cancer Society predicts 180,890 new cases this year.  Perhaps taking a ~million biopsies plus another ~million for men on active surveillance.  I can't find an official number - perhaps someone has seen one?  

    In fact, there is no "safe" PSA threshold.  And the percentage of serious PCa cases does not diminish at lower PSA levels - only the detection rate.

    Why does the PSA era continue to linger, more than 25 years after it began?  The lack of a better single test has fueled the call to abandon screening.  Countless papers have proposed additional tests that increase sensitivity & specificity.  With a panel of tests, most biopsies could be avoided.  And many men with PCa & PSA < 4.0 could be detected.

    Unfortunately, IMO, the status quo is due to the profit motive.

    At the start of the PSA era, the number of U.S. cases per 100,000 men inevitably increased.  What wasn't supposed to happen was an increase in the mortality rate.  This was the period when urologists were getting $1,000 to give a shot of Lupron.  There was vast overtreatment & an acceleration of progression to CRPC & death in some men.

    When Medicare removed the profit motive, inappropriate use of Lupron declined, as did the mortality rate.  I don't suppose urologists were specifically thinking of college fees & vacation homes.  The theory of cognitive dissonance probably explains how they came to terms with it.  My current urologist told me: "We were all doing it!".

    Less lucrative, but a good cash cow is the biopsy.  A panel offering extremely high sensitivity & specificity nonetheless returns a probabilistic result.  A urologist might say to a patient: "Let's not bother with that since only a biopsy will tell whether you have cancer."  In fact, biopsies are hit & miss.  A biopsy could miss a Gleason score 3+4, & pathologists often upgrade biopsy results.

    Urologists do not make money from blood tests.  If a third party were to perform the biopsy, we might see more interest in blood tests to save the patient the ordeal.  Change is not going to come from within the profession. What's needed is for Medicare to lead the way & mandate the use of a panel test, so as to cut annual cost of biopsies.  The 4k Score test is available but not covered by insurance.  If adopted, the price would soon fall.

    My own experience is a bit odd in retrospect.  My PSA was only 0.8 when a DRE revealed a nodule.  The post-RP pathologist never did find cancer in the nodule.

    My first biopsy was negative.  When the PSA had risen to 3.0, a biopsy found GS=4+3.  I was a bit ticked off, thinking that with monitoring, one should be able to spot the cancer at the 3+3 level.  My urologist at that time said that biopsies miss a lot of Gleason 6 cancer.  (Critics of screening would say that they reveal far too many Gleason 6 cases.) 

    A better blood test would have clarified my situation much earlier.  Even so, reading about your case, I suppose that I was lucky.

    Best, -Patrick


  • My husband had a psa of 70, had been having dre several years and 49.  Has had radical surgery. Slight rise of psa and 9 mos later lupron and 40 rounds of radiation. Psa remained @ .02 for several years then a slow rise. Never got beyond 1.10. At 6 years I was noticing changes in him. I asked his doctor to do a bone scan. Had been 7 years since last scan. Doctor there would be nothing in his bone if psa was under 2.0. A year and half later with psa still riding very slowly, he passed out at dinner table. Could find a cause but the scan found a bone lesion. His psa was still under 2.  His psa obviously belies what is happening.  Although it was a great diagnostic tool, very unreliable in predicting advancement in my husbands case. They radiated the lesion. It is stable right now. Now his psa us doubling/tripling. 


  • Thanks for sharing! I really wish they could come up with a better more reliable test than PSA. That is my fear... My hubby's psa does not seem to come near predicting what his cancer is doing. We are in the process of making the desion rather to go on 6 months of hormone treatment and 35 radiation treatments with his psa hovering about .o4 or to wait till it rises to .08. My hope is hubby just does it now ! Much easier to say "we did everything we could" then to look back and say " wish we would have" !

    Best wishes for you and your hubby!

  • Same to you and your Husband.  Unfortunately this cancer is so individual.  What works for one may not work the next.  My husband who had a final gleason of 9/10.  Has only had rp, radiation and 3 Lupron shots right before radtiaion.  It is now in his bone (1 lesion) which they radiated last year.  It is stable for the time being.  He and his doctors are taking a wait and watch approach.  Its taken 9 years before it was confirmed in his bone. He would rather not be on any medication and they concur at this point.  That can change tomorrow.  I do believe that psa saved my husband's life.  Initially.  But as an indicator of where it is going, for him, its not very reliable.  I would never suggest anyone follow his approach and not go on meds.  This is what he has chosen and this is what is working right now for him. 

    wishing you two the best and make the most of every day!

  • First, PSA is not a bad measure once a person has been diagnosed.  The controversy is more about the value of PSA as a screening tool.  The exception to this are the very aggressive cancers that don't generate PSA, but yours doesn't look as though it falls into that category. 

    Up to recently the general thought is that upon a PSA recurrence post surgery he best approach is ADT along with radiation to the prostate bed, but the key is the earlier (the lower the PSA), the better.  A PSA of 1.0 is considered the cut off point of when this approach would most likely be considered futile.   However, doctors rarely tell you that the radiation can come with side effects, including damage to surrounding tissue, secondary cancers and ED or urine control issues.  So, it is a trade off.

    As of two years ago some new and good research has shown that men diagnosed with very aggressive prostate cancer (Gleason 8 or 9) who are still ADT naive can benefit from early chemotherapy.  This should be considered by you, have a conversation with your doctor,  as an alternative to ADT and radiation. 



    It isn't clear to me which of these approaches is superior because they have not been directly compared.


  • I would agree with Joel. Since you have extensions, lymph nodes, etc. I would think chemo would be the best chance of getting it under control than the radiation and I agree about the side effects of radiation. Ask them for a thorough explanation because they don't always prepare you and some can be very difficult. My husband never had high PSAs but that doubling/tripling time was used as a better indicator that things were progressing. Our Dr told us chemo doesn't really work that well with prostate cancer and that was why it wasn't usually suggested but I believe there are better drugs these days and I have seen comments from those who had it that felt it was very benefical early on. My husband has been through so much and is so weak, now suffering atypical trigeminal neuralgia on the right side of his face, that the Drs say he shouldn't attempt chemo at this point. At least you are still early in the stages of this disease so I would ask them about it. Best of luck.  Charlean

  • Thanks! We have been told the same... Chemo doesn't work all that great on Prosrate cancer. Reasoning right now is that they can not tell us where it is BUT because of the surgical findings , there's a good chance remnants of the cancer r still in the prostate bed. It will do nothing for the lymph nodes involvement. We can wait till .08 or do it now with psa of .04.  I hate waiting for the other shoe to drop.... My hubby is very healthy and very active ... My preference is to stay ahead of the cancer as much as possible... Do it now! We will be making the deduction on Tuesday .

    Best wishes for you and your honey! Thanks for sharing.

  • Ca-Darrell123

    I don't know if this will help but I'll tell you any way. When they found my cancer it was already at an advanced state with a Gleason of 10-10. I went to a radiation oncologist and he started me on lupron to shrink  the tumor in my prostrate and then we would start the radiation. Just before we were to start the radiation treatments we did a MRI and found that the cancer had moved into my lymph system. The radiation oncologist said that radiation treatments would not help me and that the outlook was not good. I went back to my urologist and asked him what would be the next course of action and he told me that we would just stay with the lupron for now, well that was not a good answer; So I did some research and found a hospital near me that was also national  cancer research hospital with a very high national score for prostrate cancer. I called City Of Hope Hospital and they made me an appointment for the next week. I have never been so impressed with a hospital every one there was so nice. They did some blood work,a CT scan and a bone scan and then took me up to meet my cancer team and doctor "T"( can't spell his name)every one calls him doctor T. by the time he did his physical exam all of the results from the scans and the blood work were done and up on his computer screen.  He started on Zytiga along with the lupron shots every 3 mo. and then got me into a clinical trial with a drug that only has a number and no name. I go to the hospital every month(in the beginning it was every week)  for blood work and a consultation with the doctor. Every three months I get a CT and a bone scan. I have been on this routine for the past three years now and there has not been any further spreading of the cancer.

     If you are close to a national cancer hospital you might was to give them a try. My first set of doctors gave me no hope.

  • Wow ! Way to keep fighting! So glad you have found a great hospital and a team that is taking great care if you. 

    We went for a third opinion yesterday and basically was told the decision is ours .... Neither way is right or wrong.  So we need to make a decision..... Wait till his psa rises to .08 OR treat now with a 6 month round if hormone therapy an 2 months of radiation. His prostate was surgically removed 10 months ago but he had a very high volume Gleason 9 which had extra capsular extension and positive margins. Also found in 3 lymph nodes.  We see our oncologist again on Tuesday to give him our decision.

    Hope you continue to do well and thanks for sharing

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