Hello again everyone.
You may see from my 1st post here, i was diagnosed with stage 4 prostate cancer end of last year, with a small cancer tumour on my prostate, two lymph nodes effected and had started to spread to be tail bone. The pain in my tailbone gave me unbelievable pain when sitting and the reason i originally went to my gp unaware i have cancer.
Took almost 6 months of what felt like test after test and was diagnosed with cancer Sept 2024. ( saw the GP first visit in End March 24).
Referred to Christies in Oct/Nov 2024 for palliative care and was put on strong chemical castration drugs ( Enzalutamide ) and a revisit booked for 5 weeks later.
I was still in alot of pain, not being able to sit is more problematic than you may 1st think, - painful to sit in a car, travel, waiting rooms etc - so called GP's again told 5 weeks wait to see anyone for pain management. Called specialist nurse at Christies who reached out to my local hospice to give me some support and they quickly called - read my notes, scans and put me on Steroids ( Dexamethasone ) and they worked like magic in a day or two taking a good chunk of the pain away.
My Oncologist saw on my notes that i had called the Specialist nurse and rang me offering me to start Radiotherapy that week - i thought wow, i am impressed - i Declined as i felt great and said it can wait as i was booked to see her in a week anyway where we can go through it and plan/discuss properly.
Continued on Steroids for a short time, hospice support was constantly checking on me, and telling me - you cannot stay on this high dose too long....
My next appointment with Christies came around and we expected to be discussing radiotherapy... But, she started with an apology for two things.
1. That she thought the Ensakutamide would stop the pain.
2. That the previous question i had asked on our initial meeting of ' what type of prostate cancer did i have' was incorrect.
Asked what and why - and was informed that at that weeks internal patients review that my biopsy taken months prior to getting to the Christies showed 2 types of cancer, the usual Adenocarcinoma and Small cell. ( Mixed metastatic )
I asked if this new news would change my treatment or life expectancy and was told no, it's still being classed as prostate cancer and that the 5 years still stood.
I was offered Chemo for the pain a maximum of 6 sessions with Carboplatin & Etoposide three weeks apart, and told very clearly this was not for my cancer control is was to help with the pain in my tailbone.
I managed 5 of the Max of 6, requiring a blood transfusion to get me through my 5th session but my bloods showed as was able to continue and it was decided to stop after completing five.
Weeks after completing the 5th I was sent for another CT scan ( My previous scan had be done pre-christies and pre-diagnosis ) and an appointment was made to see the Oncologist. She walked into the consulting room with a spring in her step - asking how i was and saw i was sat down. Told her it had helped with the pain and i had stopped the steroids.
She told me i was doing really really well and that she'd seen the scan but still waiting for the report but it looks good that my lymph nodes were not so bright and started to discuss again radiotherapy. She explained it well and i agreed to this and was told i'd get some appointments though the post for both the step up, consent and tattoo and the treatments, and she'd let me know about the full scan reports.
Great i thought. I decided to take a few days away once i felt more passed the chemo and the letters arrived for the appointments.
I then had another letter for a new appointment to see me with the Oncologist, i thought ok that's just formal telling me the results, so i called and checked with my specialist nurse who confirmed it was just for the official results and asked to move it a few days as we had already booked a small break after the Chemo. That was done and after our long weekend went to the appointment.
We ( my wife and I ) attended just expecting for what she had already told us to be confirmed... but.
She started with asking how our break was then followed with - any idea why i called you in?
We said well, to officially tell me the results.
We listened.
She told us it was not good, that although the lymph nodes were not so bright that my cancer had spread to multiple lesions on my liver and also more on my spin in my chest area. That this was compared to my 1st scan and shows very aggressive cancer and did i want to know the time remaining. I little shocked by this sudden U-turn i nodded and was given 3 months, best of 6 months. This as shocking news - and took some digesting. Also that the booked radiotherapy would be cancelled and no longer being prescribed Ensakutamide as it was clearly not working.
Still shocked - asked what my options were - she told me, nothing really - could try another chemo but the chances of it working would be very very slight and to come back in a week with a decision on what course i wanted to take.
We walked away totally stunned from ' Doing great' to 12 weeks to live.
Took us more than a week to get past the news but i still had decisions to make.
After days of trying to weigh up - if or not to use the few remaining months trying on a very very slight change at the cost of being a chemo - which for im sure you know is a bit of a state - or just to enjoy what's left - i decided that the gap between the scans was too big, and that had the previous chemo helped or not? So i wanted more educated opinions. I reached back out to my hospice doctor who can see all Christies data and also called my specialist nurse at Christies to ask for a 2nd opinion to help make the decision.
The hospice Doctor was very helpful and helped weigh it up without giving a do this / do that, and i had an appointment with another oncologist.
The Second Oncologist also tells me he has a smilier patient who's cancer was more advanced and was on a new drug which he was the 1st to use - but was only available for those who's cancer was from their hereditary and he had also requested a BRAC test - which had come back negative so i was not a candidate.
i asked for another scan, as i was unclear if the chemo had really helped or not given that it was almost 6 months between the two scans, which was done and showed the growth had increased on my liver by a factor size of almost x3 and also in my lower lumber in my spin now as well.
The only option was the chemo for Adenocarcinoma which was Docetaxel with Prednisolone, a Max of 10 but a cycle of three, at three week intervals, then a scan to see if it's doing anything. He told me it was only a slight chance of 10-15% of helping. I asked what other options are left if this does not work - he answered with - none just quality of life.
Yesterday i have completed 2 of the 3 cycles, so i am trying to prepare for the consultation which will be after the 3rd cycle and scan with options.
So, i ask for help here - in the very unlikely event someone has the same as me - i would very much like to hear from you, and also - other options, hospitals either UK or EU who may offer something at this stage.
To close - i was 54 when i was diagnosed and even though my father had both prostate and bowel cancer mine did not come from him and i am glad to say my dads was caught early on and he's been clear for 7 years of both and is 90 next year.
Thanks again.
