M0 with conventional scanning to M1a with PSMA PET scan

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Good evening all,

I’ve just completed my diagnostic journey (summary details in profile) and feel so much better for coming to the end of it. The last hurdle was a PSMA PET scan which I didn’t quite manage to clear as low volume spread to lymph nodes beyond the pelvis was identified and I was restaged to advanced from locally advanced. WB-MRI had previously not detected any metastases. I came across an interesting report from the European Urological Association where researchers from the Netherlands seem to be suggesting that there is a flimsy boundary between high risk M0 identified by conventional imaging and M1a identified by PSMA PET and that the latter, M1a, should be treated in a similar way to M0, and possibly with similar intended outcomes. There is also the interesting consequence that some patients with low volume spread are being migrated into stage 4, with possible consequences for data on survival outcomes in both stage 3 and 4 - effectively improving the stats for both stages (removing more high risk patients from stage 3 but adding the same, relatively lower risk, patients into stage 4). Has anyone done any reading or gathered any thoughts on this as I’d like an informed chat with the oncologist when I meet her or him in a few days? Also how is high-risk stage 3 N0 M0 with curative intent typically treated nowadays? From conversation with the urologist, for M1a, treatable but not curable, I am aware that abiraterone will be used from the off and I’ll have radiation to the prostate but not to the larger pelvic region. For myself, I don’t feel particularly disappointed by the change of label from M0 to M1a - after all, my cancer is the same, cure rather than remission always seemed a bit of a long shot with my initial psa, and it’s better to know what you’re dealing with - but I want to reassure myself about treatment protocols. Sorry for the questions but any advice or comment would be much appreciated.

  • Good morning.

    I am sorry about the way your diagnosis is panning out, but you seem to have a realistic outlook, and so I hope that helps.

    My own case is slightly different.

    The staging in my case was T3b N1 M0. Gleason 9.

    The treatment prescribed was:

    1. 6 months hormone therapy - Zoladex in my case.
    2. Radical radiotherapy to the pelvic area - 74 Greys in 37 fractions.
    3. Continued hormone therapy out 3 years from diagnosis.

    This is stronger than the "standard" treatment.

    There is some evidence, which I can't link to because much of the discussion is outside the UK, that "de-bulking" - i.e. radical treatment of the original tumour - can have a positive effect on on advanced stage cancer.

    It sounds as if this might be considered in your case, and if it is I would go for it.

    In my case I had a starting PSA of 7, which may be the difference between us.

    I have the standard main side effects from the hormone therapy - complete lots of libido, erectile dysfunction, hot flushes, intermittent fatigue. None of these bothered me much, and I am living a pretty normal life.

    The radiotherapy simply made the fatigue worse for a couple of months.

    I now use the fatigue as an excuse to have a nap (not every day) for no better reason than I enjoy it.

    I have adapted, and am having fun nearly all the time (even when I am having a nap).

    Onwards and upwards!

    Steve

    Changed, but not diminished.
  • Hi - interesting and take your point re the potential manipulation of figures. My OH was delayed treatment ( we live wales!). April 22 had acute retention- gp finally referred July- prostate hard bit bumpy but not overly concerned. PSA 18. Scans etc and private biopsy due to further delay  est. 4months) and confirmed Gleason 7 -bone scan clear-ref to ICHL for surgy( no one competent here) . Further delays and then they wanted PET PSMA scan which showed ‘suspicious’ areas T5 & one rib.. automatically restaged to 4 & denied surgery.. there def is an evident base around the debunking ( removal ) of the primary tumour in oligometastatin spread. Despite numerous arguments we were denied this and triple therapy so had chemo RT and remains on HT for life.

    the research does take some finding and I found it using the term oligometastatic if that helps. Unfortunately I no longer have the link but I’m sure you will find it .

    wishing you all the very best x