My Introduction, my diagnosis and treatment so far

Hi Aboniskin and welcome.  You sound to be doing well, but feel free to ask any questions at any time.  I know you have already met some others on your General Discussion post and am sure some other regulars will be around to say hello shortly.   David

Hi David, thanks for the response. I’ve just been reading your prostate history. For someone like me at the start it is encouraging to see that there are lots of treatment options and they don’t give up on you. You must have some good doctors! I wonder whether the old survival data is less relevant today.

I also had to go in for some penicillin and chest scans after chemotherapy number three, but the injection to bring up my white cells saw off the fever and I just needed a course of antibiotics. They have given me some self-administering injections to take from day five so that the immunity problem doesn’t happen again.

Other than that, the side effects have been manageable with the various anti-sickness drugs and steroids. I’m usually back to resistance training by the last week to keep my fitness up.

I really want to get all six because they are still treating it as curable with the caveat that they just don’t know because of the high PSA.

I don’t know what to ask but any advice you have would be very, very welcome.

Hello Aboniskin 

A welcome to the group (and the Gleason 9 club! ) from me. Reading your introduction and your other post it's clear you know where you are with the diagnosis and treatment - the "managing fears and worries" is another issue.

If you need any help or support with thinking about the future and your treatment, the Support Line will be happy to help on 0808 808 00 00 (8am to 8pm 7 days a week). It's a known fact that 1 in 2 people with a cancer diagnosis have some from of mental health issue - it's good you recognise the issues and are happy to talk about them.

I wish you well with the chemotherapy.

Best wishes - Brian.

Hi Aboniskin , yes reading some of the profiles can really bring home just how ‘curable’ and ‘treatable’ this horrible disease is becoming.  I have found the NHS and all the staff I have been treated by, really fantastic. It is only let down by bad management and political interference.  I am sure your team will be as professional as my one has been.  David

I hope so. I am at the Norfolk and Norwich, which people speak of highly. You are certainly showing, with your treatment, that they have a lot of tools to combat the twists and turns. It definitely give me a bit more hope for the future.

Hi Brian,

Thanks for the support. I had a read through your treatment. I was struck by the Gleason calculation change. That must have been a shock to find you were a 9. A high PSA too but not much spread? It’s a minefield of doubt!

Originally I called the doctor because I had ongoing IBS and I wanted to check it wasn’t something more serious. I’d noticed that I’d had a few slight problems having a pee, but had no idea that was a problem in itself. Doc did the two finger prostate test and all was well. But the PSA came back high. At the hospital they told me what it was (108) and what that probably meant, and they immediately took another test (result 133) so it went up that much in 10 days. All my scans went through in a rush, CT, bone, MRI, biopsy, then PET. Talk of taking out the prostate changed quickly and by Christmas I was on pre-hormone injection tablets and first injection in January.

Then at my first proper consultation they explained that they wanted me to start with Chemotherapy, so here I am, 4 sessions in, PSA 1.1 and dropping.

Good Afternoon Aboniskin 

No, I had no idea I had Prostate Cancer, the initial thought was a kidney issue with a low eGFR of 8!!  The original Gleason 7 came from 8 cores on my biopsy, the promotion to a 9 was on the "chips" from the TURP operation.

My original treatment plan was HT for life but oncology decided try 3 years even with the high PSA and no bone spread. As you are aware I have been off HT for 5 months with a rising PSA and have another test next week - the results of which will determine where we go from here. As I have said previously -"que sera sera".

I have been aware from the start - I was potentially incurable but if my team want to use the magic words "curative pathway" - I am more than happy.

As I said in my original post you appear to know where you are with the diagnosis and all looks to be going well for you. I am sure once the Chemotherapy is over you will settle down to the new way of life.

It's nice to read of someone being processed through the system without any issues  - we do spend quite a lot of time trying to push people to be treated and reminding the NHS of the Cancer Pathway timeline.

Best wishes - Brian.