Change treatment

Hello Ian (Emmers) 

A warm welcome to the Prostate group, although I am so sorry to find you joining us.

To give the best answer to you question, can you give us a little more information please, original diagnosis, TMN and Gleason scores. I do encourage folk to add these to their profile so we can see them and don't have to keep asking questions.

To add to your profile, on your home page, click on the chair - top right, then profile and then edit. Once you have written something, don't forget to save it. You can read a Community members journey (if they have completed it) by clicking on their user name or avatar.

One thing that does stand out to me - have your team considered targeted radiotherapy to the mets on rib T12?

Best wishes - Brian.

Hi Brian

I have updated my profile, as requested. I had RT for the prostate in April 2025, which I think now is clear. RT for the T12 rib hasn't been discussed - activity in that area from the PET scan in Sept 2025 shows no activity in that area, and also in a lymph node that was previously active.

I do think about what happens in the future - i.e. when the meds stop working. I haven't found much info about that, and the oncologist I see doesn't say much about that - he says your treatment is working for now.

Cheers

Ian

Hello Ian (Emmers) 

Thank you for the update. Quite an interesting journey so far and the hormone therapy/radiotherapy is working well. You should reach your lowest or nadir PSA reading after radiotherapy this November but to be honest it's already low and has never been high. I just wonder if you are a "low secretor" and your PSA has always been low.

I wouldn't worry about what happens in the future - as a T3 you are technically on a "curative pathway" - it's a T4 you don't want!!

The future depends on lots of factors, how long you are on this treatment, if you become Hormone resistant, radiotherapy to any distant mets - no one know,s it's how your body responds to treatment. There's always chemotherapy in the toolbox.

Enjoy life and don't worry about the "what if's". You are doing great and your team are happy with your progress.

Best wishes - Brian.

Hi Ian,

Whilst it's human nature to think ahead about what may happen in the future it doesn't actually achieve anything apart from being a reminder that you have / have had prostate cancer.

I finished my RT mid Oct 2023 & had my last HT 3 mthly jab in the December.  Like you, my treatment is working so far which is a big plus.  Should anything change in the future any further treatment needed may well be different to what's available now.  My best advice is to try & relax a little & focus on the positive things that are in your control such as planning a holiday, a DIY project etc.  Not necessarily easy to do but much less stressful.

Best Wishes

Brian

 Millibob the T3, T4 thing confused me....Paul is T3 (tumour size) but he is stage 4 due to bone mets, our Oncologist advised that all cancers that have progressed to bones are Stage 4....not curative but treatable....The T thing is tumour size and no relation to staging. 

Hello Polly1912 

Yes, you are quite right - but I tend to use the TNM score as a rough guide to how someone is without going into great detail - the diagnostic path is hard enough for someone new.

A T3 (A or b) you know where the cancer is - it's left the gland and it's either in the seminal vesicles or not.

A T4 - it's left the gland and is in another part of your body. (nearly always Stage 4).

So yes technically I am wrong but it's the easiest way to advise someone new without going into great detail.

Even using the PSA as a guide is problematic - take my PSA on diagnosis 182 - yet no spread outside the gland - not even the seminal vesicles. Clear bone scan and MRI. Original diagnosis from biopsy Gleason 7 (4+3) yet the "chips" from my TURP showed a true Gleason of 9 (5+4).

So yes, you are quite right. It's me trying to "simplify" the complex system for staging and grading.

Best wishes - Brian.

 Millibob awh i wasnt picking you up, I myself get so confused by all the medical jargon‍....hope you are doing ok and keep doing what you do

Hello Polly1912 

Don't worry - it's my way of dealing with the diagnostic pathway. 

From experience I know 95% of people just want the basic - how bad is it ?- can I be cured ?, so I try and make it simple and understandable.

I do make mistakes - I've never lived it down when I replied to someone "just click on my avatar to view my journey"  - but I missed out the "c" in click and got posts asking me why they had to lick the screen!! .

I am doing brilliant thanks - I feel good, coming off HT again at the end of June to see how I get on and had a colonoscopy (I was on 3 yearly ones) last week - clear, no polyps, piles or cancer so signed off from that pleasure. .

Best wishes to you and Paul.

Kind Regards - Brian.

^"Even using the PSA as a guide is problematic - take me PSA on diagnosis 182 - yet no spread outside the gland - not even the seminal vesicles."

Indeed. At the opposite end of the scale, my recurrent psa reached "only" 4.5, but with such extensive and distant spread (lymphs only) that my Consultant has I think lost interest! Certainly lost for any treatment options beyond doublet HT in a forlorn hope that will maybe delay the inevitable for a short time.

Dave.

Hello Dave (Carl28 ) 

I am "lucky" that I live in Oldham and come under The Christie in Manchester (the 4th best cancer hospital in the world) for my treatment and I have an Oncologist I can talk to and who understands where I am with my cancer progression (or lack of it).

Carl28 said:

my Consultant has I think lost interest!

At your meeting next month you can put your case forward for any change in your treatment you consider would benefit your particular situation. If you are unhappy with your team there is always the option for a "second opinion".

Best wishes - Brian.