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  

    Yes his next treatment will be a PSMA pet scan if his PSA goes over .1 and targeted RT on anything thats found. Thats if he's still on Abiraterone as it will show it's not working anymore. 

    Here's a link to my top video for treatments, you may like, it's very informative.

    https://www.youtube.com/watch?v=-RVVq0uDAEE

  • Hi Ulf.

    I found an article which outlines treatment options for each stage and risk stratified prostate cancer along with the research used to make those recommendations. This could be a starting point.

    https://emedicine.medscape.com/article/2007095-overview#a1

  • Thanks Ulf ( ), I was initially put on Bicalutamide for 2 months and then Zoladex after 1 month which is still ongoing over 7 years.  No talk about Abiraterone. After about 3 months I started on Docetaxel but stopped after 4 rounds as I reacted badly.  Then 6 months later I had recovered enough to have 37 x 2Gy fractions RT.  I have since had a couple of radioactive scans but not sure exactly what they were and over the years numerous MRI’s.  Low PSA for about 4 years and then it started creeping up.  Nothing showed until a recent PSMA PET showed bone mets, so I have been very lucky.  I discussed most options with my oncologist and she suggested Enzalutamide to give me 12months plus before plan C.  She talked about treatment when I get to 80 (currently 75) and I have confidence in her.  Best wishes, David

    Best wishes, David

    Please remember that I am not medically trained and the above are my personal views.

  •  Ahhh I thought you were coming off sooner. When you do will you do a post on how you are feeling as testosterone comes back, if you have scans etc as I'm completely fascinated, especially with you high original PSA, I love that you are on a curative pathway. 

    LSlight smile

  • Lorraine ( ), in answer to your question, as I have just posted to Ulf, my PSA stayed remarkably low and we could see no sign of mets until I reached a PSA of 2, when the new met discovered.  2 seems to be a magic number before introducing 2nd gen ADT, but I really don’t know if the met would have been found when I was at 1.5 for example.  Clearly it has been lurking outside the prostate for 7 years as my prostate still not registering any PCa on latest PSMA PET.  So yes, the HT did start to fail but it has done remarkably well for years.

    I am still on Zoladex but now have Enzalutamide as well.  Good luck with your own decision and treatment plan for your OH.  Keep positive.  David

    Best wishes, David

    Please remember that I am not medically trained and the above are my personal views.

  • Hello Lorraine ( 

    So at the moment I am under The Christie NHS trust in Manchester under their Prostate Self Management scheme. It's all remote and I don't attend, I have my bloods done every 6 months (locally about 2 miles away at our hospice) and complete my medical questions online - I do have 2 dedicated CNS's should I need one. (I may have to ask for a testosterone test - it's not in the normal cycle).

    I'm completely fascinated, especially with you high original PSA, I love that you are on a curative pathway. 

    Yes, so am I - 182 on diagnosis, urology said HT for life, when I got to oncology at The Christie (which is a cancer only hospital) it was T3aN0M0 - you have a shadow on your pelvis - we will "zap" your pelvic lymph nodes as well whilst you are on the sunbed.

    My latest (August 2024) and nadir PSA was 0.29 - not as low as I wanted and I have been around the Community long enough to know that 182 should indicate it having gone "walkabout". "Curative Pathway" is still my favourite phrase although I have a sneaky feeling it may well be replaced by "Que Sera Sera" Worried.

    At the moment life is good, so no, I am not too worried but that PSA figure will always be at the back of my mind.

    Best wishes - Brian.

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  • Hi BW / L

    Well, lets hope he stays on this excellent Nadir and instead perhaps have him coming of HT and Abi in consultation with the medical team in the future Slight smile

    I really like PCRI videos and very interesting topics regarding mixing the treatments for best efficacy.

    Hope you looked at the link that Alwayshope added to the thread on recommendation of treatment for different types diagnosis. So actually your husband have been treated according to locally advanced very high risk; with radiation, 2nd gen (Abi) and ADT and even in this recommendation it states 3 years of ADT (I've seen similar recommendations with 2 years of Abi and 3 years of ADT).

    I would say that you and your husband have some good recommendations to take into account in your dialouge with your medical team / MO. Well anyway my personal opinion Slight smile

    Best wishes - Ulf

  • Hi Alwayshope !

    Very interesting article and seems that it match what I've read from other countries recommendation very well and as always; you are phenomenal in finding articles, studies and etc. Slight smile

    Best wishes - Ulf

  • Hi David2017 !

    Seems that you've done well in your treatment pathway and now you seem to have new treatments in the pipeline and this will help you in keep fighting the 'prostate cancer beast' and very happy for you Slight smile

    Actually I was thinking; no dialouges regarding SBRT boosts to bone mets? I believe that there are even some interesting directed radio therapies in the 'treatment shelf' that might have good respons on bone mets.

    Well, keep on fighting and I keep my fingers crossed for new good alternatives to keep you fighting 'the beast' into remission Slight smile

    Best wishes - Ulf

  • This is a brilliant video Lorraine which I use as a reference and from memory he recommends the use of ARPI's with a systemic treatment whenever possible.