Moving from Active Surveillance to treatment

  • 19 replies
  • 117 subscribers
  • 1611 views

Hi, first post

I'm on active surveillance since NOV 2018 with a Gleason 3+4 and stable PSA always at 4 to 4.5

I had a new MRI early June and in the report to my GP I discover that the MDT (multi disciplinary team) recommended treatment in DEC 2021 already after having an MRI.

It's a surprise because over the phone they said all was stable and I can stay on AS.

So right now on the June MRI they see a slight increase and will discuss on MDT.

My guess now is they can only say again that I should go for treatment.

So my question and choices are:

1/ should I postpone treatment, stay on AS which mean they will ask for another BIOPSY to confirm cancer is progressing

2/ should I ask for treatment, but with a face to face conversation. Since 2019 I only had telephone appointments and often with different Doctors

3/ About AS or treatment: does anyone been told that treatment sooner would be better that later, and therefore it can be the best option to stop AS?

Thanks for listening.

  • Hi Erick, I had similar issue where I was told that treatment should start, about 1 year into AS, but on looking at the stats I changed hospital and stayed on AS for a couple more years 

    Your Gleeson and PSA are low, particularly PSA, get a copy of the MRI report and look at details of tumour size and location, u may need to get previous reports as well to compare.

    Good luck Steve

  • Thanks Steve,

    My lesion is 12 mm longest and the new MRI increase says 13 mm which means a 1 mm increase in 3 years.

    The biopsy are

    1st biopsy NOV 2018: Gleason 3+4 5mm core 10% pattern 4

    2nd biopsy March 2021: Gleason 3+4 4 mm core 15% pattern 4

    I didn't get any explanation about pattern but I suppose it is the amount of cancer cells in the lenght of the core.

    I see you opted for RT, there are a few hospitals in London with HIFU treatments and they say it's a better option. Did you have that possibility?

  • My largest tumour started at 3mm and  had increased to 13mm when treatment started.

    Yours has reached that point, important to see if near the capsule edge about to break out, this is what spurred me into action.

    Did look at Hi fu, not so many NHS centres doing it then, looks a good option but don't think there are long term stats regards success. Think good Hi fu centres in London also Southampton plus must be others

    Steve

  • My tumor is in the left anterior zone so nowhere near the capsule edge. This is why I've been looking for a localized treatment. I've been dreaming of staying on AS and I cope very well but I know that if they insist to start treatment it might be difficult to keep saying no.

    Are you doing fine after treatment?

    eric

  • Must admit, a bit like yourself, worried sick about the treatment but it turned out ok, so worrying needlessly really.

    So five years on , cancer not returned, only lasting side effect  dry orgasm but can live with that 

    It is a difficult one, staying on AS sounds ideal as long as you keep your eye on it , be ready for treatment, it's difficult to say no if they persist.

    Other thing u could do would be to get a 2nd opinion privately, doing that made me hold back on treatment for longer .

    • How many Mri's have u had , has there been an obvious size increase between Mri's
  • 4 MRI with no change in the first 3 and only a slight change in the more recent one 2 weeks ago. So Im now waiting for the MDT recommendations.

  • Re treatment sooner or later, I'm gleeson 3+3, 12 out of 18 cores from biopsy with cancer so plenty of it . Diagnosed in march 2022.

    Strong family history, younger brother and father with PC.

    Surgeon said this year or next will need intervention, so AS doesn't look a long term thing for me.

    I'm looking at private focal therapy, hifu, but my PC isn't very focal, also getting a second opinion , currently waiting on blood test result for checking faulty brca2 gene, if it's faulty then I think focal is not an option and intervention will be more urgent.

    Next NHS PSA blood test for me is August.

    At the moment leaning more towards removal but that does change.

  • Yes, wait for the meeting but looks like hardly growing especially with the PSA being near normal.

  • Hi Erick

    I'm in my sixth year of AS.

    In February I had my annual MRI and they noted some slight progression. I was referred to London for HiFu assessment.

    In London they started by re-reviewing my MRI and assigning scores to each sector of the prostate. They scored nothing higher than 3, but told me to have an MRI on a 3T machine instead of a 1.5 one. I did that and the result was the same. Therefore I did not qualify for HiFu because there is nothing to focus on. The good news was that they said I can stay on AS for at least another year. They recommended I have another biopsy because my previous one was in 2017. I declined because I had so many problems after the first biopsy. They said my PSA per volume of 0.14 does not scream out for another biopsy. 

    I think MRIs, and for that matter biopsies, are a bit subjective. MRI report is someone's assessment of an image. Biopsy report is someone's opinion of cell patterns on a microscope. A second opinion is always a good idea. 

  • Hi David, interesting.

    I declined biopsy after the first for various reasons. I think MRi report is much more helpful because it  can cover a wider area. It was the Mri that told me the tumour was near the capsule edge so prompted treatment after 4 years on AS.

    Looks like you're doing ok, long may it continue.

    best wishes

    Steve