4 month update.. not great

Sorry to hear you are feeling so bad.  I guess the anxiety is not helping?  I hope the scan and further tests will lead to a plan of action to make you feel better.

Hello Dave2024 

I do remember you from before. I remember you had issues with your MRI before - you didn't get a clear one! I am sorry to find you in this state, I know that being in the situation where you are ill and having no treatment plan isn't a good place to be - can I suggest the following:

* You press your team for earlier biopsy and MRI as the wait is causing anxiety - tell them you are available for any cancellation.

* Would counselling help towards reducing your anxiety levels? - I can help with that?

* Feel free to give our helpline a call on 0808 808 00 00 (8am to 8pm 7 days a week) The Macmillan helpline will be able to find you some additional support.

I do hope this helps and if I can do anything else for you please let me know,

Best wishes - Brian.

Hi Dave2024,

You have conquered so many ills in your life so far - you have, indeed, been dealt a tough hand.  However, with your amazing resilience I can tell that you are definitely not one for folding!  The main point I want to make is that treatment for prostate cancer has progressed SO MUCH in the last 20 years or so since your Dad passed.  Really, the difference in the technology and drugs available is remarkable.  Your PSA is only 6.9, but I also accept that you are showing symptoms (which may not be cancer, but I acknowledge that your Dad had an aggressive form of prostate cancer).  That said, a dead prostate cancer cell is dead however aggressive it was.  Trust in your medical professionals and the heavyweight artillery that they can bring to bear on whatever it is (probably prostate cancer, judging by your stats and history).  This game is FAR from over.  Your Dad died within two years, BUT he did not have the medical ammunition that is available to you.  Good luck and keep us informed.  AW

Hi again Dave,  I well remember receiving my diagnosis and I was convinced that I wouldn’t make the next Christmas.  Initially my brain was scrambled but I soon realised that I needed to sort out my affairs to make it easy for my wife.  Channeling thought into doing something constructive helped.  When Christmas came and I was still around, things were much easier because firstly I was by then accepting my own mortality and secondly my life felt neater.  That was 6 years ago!  Ok I have days where I feel bad, but overall we have had a good 6 years and it feels like a bonus.

You sound like a real fighter and you will come through this.  As others have said, you can’t compare treatments today with 20+ years ago.  Even in my treatment time, I have noticed a big difference in outcomes.  Best wishes and keep in touch.  David

Hi David2017,

I was just catching up on your profile, stage and treatment. (you are very similar in original PC stats of my partner) We went to see his consultant the other day and discussed the next plan of attack if and when the PSA starts rising and he said it will be PET scan and targeted RT on any visible mets. I thought this was excellent and very reassuring. I'm guessing this will be what your oncologist will pull out of her bag of tricks for you also (if needed) It's so interesting how you initially thought this was the end 6 years ago, because this just shows how treatment is changing all the time and how effective it is. 

L 

Hi Barry W, I am just back from having a CT scan.  The plan is, if no mets identified and my PSA goes past 2.0 then I will probably go onto Darolutamide.  If mets found then plan B!  Not sure why my oncologist hasn’t given me a PET scan, but I am not meeting her until early April.  After this length of time, I don’t consciously feel scanxiety although OH thinks I do!  Hope you are both doing well.  Best wishes, David

I'll hold your virtual hand David as hubby had his PSMA PET CT today. I happened to pass the Greek God in the door to the hospital as I was going in to collect hubby after having it and had the bonus of a big hug from him. He is discussing the results with the radio oncologist and will phone me with the recommendations as to whether SBRT is relevant for the mets, so, as Barry W says, this will probably be an option for you. Let's just hope that your scan doesn't show up any mets.

Hi David,

It does sound like you are having good support, though always worth finding what other options are out there as well. I think my partners Abiraterone is an equivalent med to Darolutamide, he had it early on with the Zoladex , the combo is quite strong at keeping everything suppressed, so Darolutamide should be really effective as well.

Let us know how the CT scans went.

L

An interesting article on Darolutamide for you to think about.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/darolutamide-survival-metastatic-prostate-cancer

I asked the oncologist about this last week as hubby recently had chemotherapy after Enzalutamide and he is leaving it on the back burner for now as he wants to try and actually get rid of the mets, hence the involvement of the radio oncologist who also says he has many tools in his toolbox such as cryotherapy and SBRT. 

I think you men are being used as guinea pigs because there are still no clear guidelines on sequencing of different therapy types or drugs used (and for how long) particularly when it gets to the metastatic stage. All we know is that these drugs and treatments are effective for a variable length of time.

Thanks BarryW and AH.  I don’t get the result until 5 April but either way, there are still options.

Originally my oncologist talked about keeping me going for 5 years.  I have quite a lot of faith in her as she has already beaten that target!  I think you are correct about us being used as guinea pigs but we are also benefiting from those who went before us, so I am all in favour.  Best wishes. David