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

  • Fantastic outlook and exactly the same as my mindset, I've got it and there's nothing I can do to change that. I'm also on triplet therapy and not going to let the little blighters ruin it or dictate my life. Yes I'll follow my oncologists advice, but life goes on

    Ps watch out for those busses when crossing the road Wink

  • Hi Ulifhub.

    Many thanks my friend, yes we have to keep strong and battle the "beast"

    Yes it is one day at a time and try not to worry and have a good weekend.

    Try to keep the brain & feelings under control if possible 

    I can't wait until Tuesday though but what "will be will be"

    Yes got yesterday's football on now and more on later!!!

    Prostate Worrier.

  • OK gym 4 days a week then sauna and cold plunge bbbrrrr , few hot flushes but no more than that. Oncologist told me stage 4 are living longer and longer and most men with stage 4 will see 5 years out due to the fantastic research over the last decade.

  • Exactly Sprinter, I read this and it is so true....Worrying excessively keeps one occupied, ultimately wasting time and energy. Instead of worrying about things that can't be changed, focus on the things that can be influenced.

  • Hi Robert1 !

    Actually I would say side effects is pretty much similar with Orgovyx / Abiraterone as it was with Firmagon / Abiraterone. I defenetily feel more fatigue and tired when starting on ADT, had more sweats when starting both ADT treatments but those have been much milder now.

    The libido have decreased a lot since I started already in January I suppose I’m one of those lucky ones that have been able to have sexual function and respond to PDI5 inhibitors which I use for both penile health and to keep up having a sex life with my partner.

    Happy that you have only lighter side effects Slight smile

    Best wishes - Ulf

  • Hi Prostate worrier !

    Thanks for your kind word and giving me the moral support and boost. Enjoy your weekend as well and like you Said, you have done whatever you can in time for the Tuesday consultation and what will be will be and then I’ll keep my fingers and toes crossed you have good feedback on Tuesday.

    Enjoy your football my friend.

    Best wishes - Ulf

  • Hi Ulifhub.

    No probs my friend, I am very happy in giving you as much help and support as required.

    Yes got my footy on now and trying to chill in redness for next week.

    I have got "Everything" crossed for Tuesday let's hope that it will be good news!!!!!

    I do hope that you have a good week!!!!

    Prostate Worrier.

  • Hi Prostate worrier !

    And I’m also very happy to give you all the boosts you may need going forward and I’m really holding my fingers and toes crossed for your Tuesday appointment and really hopes for the best and some good feedback moving forward in your battle against your PC ’beast’

    Hope you also have a very good week my friend Slight smile

    Best wishes - Ulf

  • Hi Ulifhub.

    Many thanks for your reply and kind words!!!!

    Yes the "PC Beast" had better watch out because I haven't started yet!!!!

    Everything is still crossed for Tuesday's appointment mind you I don't know how long I can keep them crossed!!!

    Have a good week my friend I will keep you updated!!!!

    Prostate Worrier 

  • Hi !

    This is what friends and fellow warriors do, support and motivate each other Slight smile

    Well, only half on Monday left and then you will have your consultation and take it from there. So, lets hope for good information anyway.

    The same to you and have a good week and we’ll keep each other updated Slight smile

    Best wishes -Ulf