New to this section.

Hi

As you may gather.. I do not have the same cancer. but on this road along with you.

I was diagnosed incurable from day one, stage four, that was over eight years ago, it hard and today siting here, was saying i have had enough of cancer in loads of  ways.

Life has been taken over with appointment, when i was diagnosed, I said just give me hope, there is always hope, new treatments coming out all the time, I was lucky and i was put on one, if I had not been, I was  told, i would not be  here.

Others will come along to welcome you and support you where they can.

Great Bunch of people and all in the same boat, and we will not let it sink, we hold every one up when needed.

Just had to welcome you you are not alone

Hi DJBF I have been on a bit of a mental  trip starting in 2020  I have been treated 3 times already and get my results next Friday for the next stage , I have tumours in my neck liver lungs. I was told back in January that its incurable but kind of knew after a salvage neck dissection and  surgeon said he couldn't remove any more and there were two sites . Being incurable is ok as one can live for many years which I am hoping for . All the Best Minmax

Hi DJBF, and welcome to the forum, I too have MPCa, treatable, but not curable, diagnosed June 2022  T4 M2 N1a, Gleason 10, I have to agree with you the newest thinking is to throw everything at your prostate cancer, but we are not experts, and we have to trust our team to make the best decisions, like you I never got regular scans or  PSA tests, this was due to me being castrate resistant, non secreter, intraductal with cribriform P4.

I have been on HT 30 months and had RT 20 fractions 73gy April 2023. and was told at diagnosis I was terminal, which as I was feeling fine was a bit of a shock,  DJBF, I did 15 years in healthcare, 5 were in cancer care so knew a little about my condition and knew the kitchen sink approach had very little chance of cure and would be tough on the body with little time benefit, much better to string out treatments to lessen side effects and give more time.

It's tough getting our prognosees, as the good people on this forum will tell you, but we've found a way to move on and make the most of the time we have, which I'm pleased to see is your plan too,  I have a few other health issues which limit my treatment options, but I'm doing ok, enjoying lots of holidays and my ever expanding family, so much better than the waiting, which nobody likes, best wishes 

Eddie 

Hi DJBF, A warm welcome to this incurable, incredible Group! Although we all may have different types of caancer, we are all walking the same path! Like Ellie, I went straight to stage 4 Incurable and was offered palliative care. I asked my oncologist if there was anything I could try, she said they may have a Trial I could try for a new drug, not yet named or registered. That was in 2013 and I was told I had 5-7 months to live! I stopped the drug in October 16 because of he side effects.

Never give up hope! I think it may surprise you how many of us live passed our “sell by date”! You will get all the support you need here, without worrying your family. We all know how you feel!

Hi DJBF,

I was Stage 4 within a year but knew that’s where I was heading pretty early on, as my original bowel cancer was a rare one.

I have had no active treatment other than blood tests, scans and more recently an injection to help maintain bone density, along with pain medication since becoming Stage 4. The journey has given me a kind of empowerment and I certainly live life as fully as possible. I have always been a glass half full person and that has not changed.

I have continued to coach women's rugby at one of our two universities, being awarded Coach of the Year twice in the last three years; have taken a cruise to Iceland; had a Hells Bay G&T in Hells Bay on Bryher and have tickets for three of the four Autumn Internationals.

Life, even with incurable cancer, is definitely for living!

Have fun.

Maninbath

Hi DJBF, How are things now? Have you spoken to anyone about looking for a Trial or anything for you. Nothing ventured nothing gained. I do hope after some of the replies here, that you haven’t given up hope. We shouldn’t have to, but we NEED to be proactive and search the internet etc for trials, new treatments etc. God helps them who help themselves,so it s said.

To be honest, I would be making an absolute pest of myself, until someone listened to me!

What is your GP saying about all of this? He could refer you for a second opinion if you asked him. Everyone is entitled to a second opinion! Sorry I haven’t been around recently but I had stomach problems, thankfully on the mend now!

Thankyou all for your welcome and replies.

I too was diagnosed at stage 4, I did ask the oncologist when did I go metastatic, she told me that the initial pain I had gone to my GP with back in May was metastatic - in short it was too late then to be offered curable treatments.

The hardest part to accept is that ' we're not gonna try and get rid of it ' - just try to make as well as we can.

Pain control is really not working at present, i have tried a day of taking all and everything my GP has given for good and bad days and it's was just not making any kind of dent in it, so have made an appointment to see him again though the earliest available was 4 weeks time.

The 2nd Gen. Hormones i started on a week or so ago seem to have brought pain lower but still not gone or gone enough to do basic things like sitting properly or for long, this has been like this for 6 months now, Oncologist has said should that continue we'll look at targeted RT to try to help with it.

Will have to look what side effects are for RT - 

My feeling and mood has improved with some of the pain diminishing and as i posted before that's my goal to get pain and discomfort low enough to enjoy life and not gritting my teeth most of the day.

Trials? Yes i'd be up for that - She did say there were non at this time, will bring it up again with our next consultation.

Stay strong all.

DJBF

A four week wait for a GP appointment? That's ridiculous! You should be seen sooner than that, especially if it's for pain management.

I'm glad some of your meds seem to have lowered the pain.

Sending you a virtual 'hug'

Kate

Hi DJBF That is not correct having to wait four weeks . I have a 24 hour phone number to oncology which I am sure you should have also . Have you spoken to your cancer nurse who should address the situation ASAP.  Hope this helps All the Best Minmax 

Hi again DJBF, and your welcome, I know it's tough finding out straight away that not only are you not curable, but there not even going to try something  to cure, just to give you a tiny bit of hope. DJBF, I've been on my journey 31 months and about 1.5 years in I referred myself through my GP to my hospice and their palliative care team,  this is not for end of life care, it's to access their services, therapies and the care teams ability to manage any pain, though it's good to hear your pain is a little better,  as for trials, maybe these may help, www.cancerresearch.org  www.royalmarsden.nhs. www.ctc.ac.uk best wishes.

Eddie