Advanced Diagnosis

Thank you Brian and Calley.

Just had the nurse call outlining what is going to happen in the short term. She mentioned the Bicalutamide and the Prostop injections. Didn’t think there was any RT option just chemo. I think I was asking too many questions and she wouldnt be drawn this would be discussed with your consultant.

Do they know what is going to happen to me in advance in terms of treatment or does it change as things go on.

 Just felt that I shouldn’t be asking about these things and just accept what they were doing. I guess I’m just looking for something positive as a takeaway.

thank you for your time investment in my situation said before but it really does help make sense of it.

X

Hey Chrispea,

from our journey so far dad was given the same tablets and injection. 
We are awaiting a CT scan to rule out any organ mets. 
only once these results are in will we be able to have a full treatment plan (our hospital may be different to others).

the treatment plan comes from the oncologist. Not the nurse or Urologyst. We found that out at our last apppintment, essentially they are there to diagnose and the oncologist is there to treat. 

we were told because it’s advanced, radiotherapy won’t be an option and we could be looking at second generation hormone in addition to the current and chemo. However only our oncologist can confirm for sure. I have seen others on here with a similar diagnosis and they have been given targeted radio therapy for bone mets so we will be asking about this in our appointment too. 

Hope this helps x

Hi Calley,

Thank you that helps.

I have also seen some treatment details that had targeted RT. I imagine everyone is different.

Hope your dad is doing well any he’s lucky to have you in his corner.

 Thank you.

Chris

Hi CCG .

Radiotherapy to the whole prostate area could be a possibility in addition to the other treatments for advanced metastatic prostate cancer. My husband had this in 2020 and to date it has put it to bed in that area. He has also recently had targeted SBRT to distant abdominal mets. The problem is that no one knows how the cancer is going to respond to the different treatments or how well the patient tolerates them. The oncologist takes many things into consideration when he comes up with a plan but ultimately it is with the intention to give the patient the best quality of life for the longest time. 

Thanks Always Hope, this is so good to know and amazing it worked so well for you OH. Fingers crossed we get every possible treatment option thrown at us to give dad the best chance. 

Hi Calley.

Here is a little more information on radiotherapy for advanced prostate cancer.

https://prostatecanceruk.org/prostate-information-and-support/treatments/radiotherapy-for-advanced-prostate-cancer

Hi Chrispea,

My partner had full pelvic RT, nodes + lower ribs and the plan is If it resurfaces it will be scanned and targeted, then I believe if it becomes more widespread it will be Chemo. I have no idea why things are different, is it the hospital facilities, the consultant? All you can do is ask your consultant about these choices and why they have picked that direction of treatment.( or have a second opinion and see what another consultant feels would be an appropriate treatment plan )  I did ask about the use of Abiraterone and pushed for that, but as for the full pelvic RT, at the very start we thought it would be just for the Prostate area, but somehow it just evolved into nodes and ribs as well. I think it was the PSA score115 and statistical pre-empting of where it would be next with the scans  At the time it was hard to get a grip of what was happening. I mean no one has actually clearly said to us why ? ( its a blur really) Our consultant seems keen to keep other treatments for later. I asked about having Chemo now for an overall clear up, but he said he would be keeping it for later. He seems to be very keen on Abiraraterone or Enzalutamide and RT. I guess it just has to be relying on your consultants knowledge, experience and treatments available? Nothing is lost by asking why? though. 

L

Hi Chrispea.

Welcome back to the prostate family it's great to meet you today.

Sorry to hear about your scan results!!!!

I was also diagnosed with Terminal Prostate Cancer last June 2023 with the added element of mets in my bones and a PSA off 1000+.

I started hormone therapy injections and tablets straight away and within weeks my PSA plummeted to 0.50.

So the HT worked like a dream and the PSA is now 0.9.

But unfortunately this has started to rise slowly but fingers crossed this will stabilise???

I have got my next appointment with my consultant in a few weeks time so hopefully things haven't changed but if not I do know that there are other things for me to have.

Things are changing every day so I do hope that I am able to take advantage of this over the next few years????

I do hope that you have good results with your HT and please keep us updated if you don't mind???

Prostate Worrier.

Hi Prostate Warrior,

thanks for the supportive response.

Had my first Prosap injection today and I am having another in a month, but that will be a 3 month one.

I have a consultant appointment in 4 weeks at which point I’m told my treatment plan will be discussed.

the CNS again suggested that it will be chemotherapy and no RT, due to the bone mets.

I’m thinking about getting a private appointment before then to see if they have any thoughts on other treatment regimes. The CNS said there were a number of things that this Trust can’t/don’t do for various reasons. So that made me more determined to try elsewhere, what harm can it do?

I know that I’m clinging on to straws, but I have to try.

I do believe The NHS are doing their very best for all of us, for which I will be eternally thankful. But maybe we can get something more elsewhere.

Sorry if I sound ungrateful and for my impatience.

Chris

Hello Chris (Chrispea) 

I can understand your impatience and being a fellow member of the Gleason 9 club I can fully understand your worry at the delay in a treatment plan.

The Prostap injection will stop any further spread so that any further delay should be less of a worry. I am aware you have your MDT meeting with your Consultant in 4 weeks time. I am aware you are thinking about going private. If it helps here's our information in this link about getting a second opinion:

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/getting-a-second-opinion

I hope this helps - if I can do anything else for you please let me know.

Best wishes - Brian.