Terminal diagnosis with a timescale.

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Hello. I'm new here so let me introduce myself. My name is Neil and in May 2022, after some tests and examinations, I was diagnosed with incurable oesophageal cancer.

I then had a lot of Chemotherapy and Radiotherapy over a period of time to try and delay the cancer and it's spread.My consultant at the time told me that even after this treatment I had a 75% chance of dying within two years.

After quite a torrid time I was eventually placed on immunotherapy which I have had on a six weeks cycle for a number of months.

In June of this year (2025) I had another scan and a follow up appointment. During this meeting I was told that the immunotherapy was no longer proving to be effective in staving off the cancer and that it had now spread. My diagnosis was now terminal. Immunotherapy was then halted.

I was also told that if I refused any other treatment I could expect to live for around another six months. With treatment between 12-18 months.

I elected to have treatment to gain some more time and will again start chemotherapy in a few days.

I have now told my family about the latest developments and that this treatment is palliative but not as yet given them the timescales.

By some miracle I think they believe my situation will/might improve or they don't want to contemplate the reality.

I would be interested to know from others, if they have faced a similar situation.

I also can't quite get my head round yet that I'm slowly dying. Some days I accept it but on other days I don't.

I know that doesn't make sense but that's how I'm finding my thoughts at the moment.

Any advice from others with a terminal diagnosis would be welcome.

Moi2 23 days ago in reply to Neil6364

Hi Neil, I was given 12 to 18 months in 2019, palative care immunotherapy for 4 and a Half years and am now clear for the last year. Hope is something we all have. The powers that be don't know all this new treatments can do. So many of us have got longer time. Hang in there. By the way my funral, will and plot are all paid for so I don't have to worry about that so just get on with what's left of my life. Alot of us have done this. Morbid or what. Take care XX

MOI

Moi2 23 days ago in reply to mvic

Didn't know about the 6 in the brain. All I say is look for the brain cancer site sombody on there will know more. But please keep posting we can give you our support and you can let of steam. Be kind to yourself, upset cry, have a duvet day if tired, just be kind to yourself, nails done. Anything that might cheer you up at the time. When I was angry I went in the kitchen and screamed amd it let a bit of frustration out. Take care and keep posting. XX

MOI

Neil6364 23 days ago in reply to tvman

Thank you for the reply. It's nice to hear some positive news for a change. It does all grind you down a bit. I know I'll have my ups a downs ahead but I also know it's not a solo trip.

I'm glad your last wee bout of illness wasn't as serious as it could have been.

Take care

Neil6364 23 days ago in reply to Moi2

Since joining these chats Moi2, I'm getting the distinct impression that their is some light at the end of the tunnel. It's been a bit confusing for me recently. I had a conversation with a doctor recently who told me my Oesophageal cancer had probably been cured but I now had to deal with the new one. Another doctor who dismissed that and gave me my rather blunt life expectancy forecast and another one who was more upbeat about extending life.

I'm due to have another PICC insertion next week and then more chemotherapy. So I'll see how that goes.

Thankfully, I had a call from my wonderful McMillan nurse today. She has been with me on and off since I was diagnosed.

I'm looking forward to meeting her next week whilst at hospital. She always explains things well and is honest and open.

I haven't got round to the funeral bit yet.

Thanks for replying to me

Stella2020 23 days ago in reply to Neil6364

If you are getting mixed messages from doctors. Is it possible to ask for a 2nd opinion from a tertiary cancer centre? Your GP can refer you or you can get it privately (£300-500).

Neil6364 23 days ago in reply to Stella2020

Thanks Stella. I'll bear that in mind