Locally advanced and advanced prostate cancer, staging, treatments, best practice and anything good to know

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Hi !

As you can see in my profile I’m fairly new on this wonderful community and I’m also a prostate cancer patient living in Sweden.

My treatment journey is a little bit different then most locally advanced prostate cancer patients and therefore I’m curious from others experience from time of diagnosis,  curative treatments, treatments to suppress the cancer (ADT, 2nd gen treatments), studies that you have participated in, combination of studies and etc.

Of course it’s very interesting to see how everything is working out, pros and cons and perhaps how people handle long periods (maybe 2-3 years) of routine checkups to see if you are in total remission, potentially even Cure and also the time after long periods of ADT or/and combination therapies to still have long periods to know if you’re in the clear or not.

Locally advanced prostate cancer and also advanced prostate cancer in my own personal opinion is a extremly vague diagnoses as it spans from cure, long remission to high rates of recurrence and for me this is really a rollercoaster.

Hope to have some good inspirational dialogues and of course, EVERBODY is  very welcome in this discussion because everybody have a story to tell and to learn

Best wishes - Ulf

  • Hi Prostate worrier !

    Always thankful for a good day / night and really enjoy and be normal for a while Slight smile

    Fingers and toes crossed my friend and hope it shows of in tests and that the consultant have good findings for you

    Really hate the waiting and the stress of the results.

    We fight on my friend !! Slight smile

    Best wishes - Ulf

  • Hi !

    Fantastic results and 4 years and still going really proves your print Slight smile

    When my wife was diagnosed with multiple myeloma 2014 the statistics said 7 years and no cures at all. Now with new treatments they are starting to talk about multiple myeloma as a cronic disease ( my wifes Medical teams words Slight smile ). so, lots of progression in treatments and I’m really that your husband and you proves the print.

    Best wishes - Ulf

  • Hi Ulifhub.

    Many thanks my friend, yes a good night's sleep is a must in my house.

    Yes getting ready for my bloods tomorrow morning and then it's the long wait until Tuesday with my consultant.

    Not bad start to the day was nice and sunny Sunglasses but it's coming over cloudy Cloud and much colder "yuk"

    D️ont worry about your results as I say "what will be will be"

    Prostate Worry.

  • Hi Prostate worrier !

    Definitily and in my house as well because otherwise my day gets so much more worse.

    Yes, your bloods and really for the best my friend so, fingers and toes crossed Slight smile

    Here it started with clouds, rainy and chillier Disappointed

    Correct, as long as you have done the most you can the rest is what will be will be.

    I found interesting articles of studies treating patients with metastatic low volume disease (lymph nodes only or with 1-2 bone metasteses) with Lutetium 177 and really interesting stuff; well tolerated and very good response. Still very good hope for brothers with metastatic prostate cancer.

    Best wishes - Ulf

  • Thanks for the links Ulf and it is reassuring me that the next step with the Lutetium 177 is the way to go. The doctors all say how strong my husband is for his age and how quickly he recovers from treatment even though he seems to get every adverse reaction during it - the favourite phrase on his treatment report is 'the patient tolerated the treatment well'.

    The papers show good results for hormone sensitive patients which is encouraging for you so I am waiting for the day when you can post that you have potentially been cured.

    As we are talking about the weather it is currently 31C and sunny here so ideal for our ice cream this morning looking over the harbour and the forecast is for more of the same in the next few days.

  • Hi !

    First of all, why didn’t you put ME in your bag because I could really do with 31C and definitily ice cream overlooking a harbour Disappointed Slight smile

    Yes, just by seeing the stats more and bigger trials should be conducted in the hormone sensitive PC population; e.g.earlier in the treatment. Sure, one could argue that it might be a lot of radiation but, I think anybody with locally advanced / advanced PC put that very low on the worry list (e.g. you will die of something, that’s the final tRuth and better hit my PC with everything you got Slight smile ). You of course can argue the cost as well but with these studies you are talking about a much bigger population of patients.

    Have you seen this study? Localized recurrence but still very interesting as a salvage method.

    https://pubmed.ncbi.nlm.nih.gov/37081426/

    Thanks of course for your kind words. I’m hoping for same result (psa <0.1), loooong remission and then, who knows Slight smile

    Best wishes - Ulf

  • Hi !

    Upps, sorry. i really think for example your husband is typically a good candidate for this type of treatment so, fight for it. Even if he have to Sleep in separate bed i say; man up and give yourself and your wife more years Slight smile

    Best wishes - Ulf

  • Hi !

    And the treatments keep coming. Same principle as Lutetium 177 but with a more powerful radio isotope. Good to see and perhaps in a few years they can test it in larger studies.

    https://dailyreporter.esmo.org/news/actinium-225-shows-clinical-activity-in-metastatic-castration-resistant-prostate-cancer

    Best wishes Ulf

  • We won't have to fight for it as it has already been discussed with our oncologist who is very proactive. My husband has been suitably primed for the possibility and says he will do whatever it takes to keep on top of the cancer but Quality of life is a major consideration. We have friends visiting at the moment and they couldn't believe how well hubby looks - they confided in me that they did not expect to see him this year because of how old and ill he looked this time last year as he was nearing the end of his chemotherapy course.

    This article you have cited is interesting because I can't remember hearing of anyone on this site who has had salvage Brachytherapy for isolated spots following a recurrence after primary radiotherapy. I have read several times that this is a possibility and wondered why it doesn't seem to be offered in the UK. I can see the sense in teaming it with a targeted therapy like Lutetium 177 to provide an initial hit.