Hi everyone,
I’ve been holding this in for a while but I feel like I’m at breaking point. I’m 45, recently diagnosed with stage 4 rectal cancer, and although I’m in active treatment (currently round 2 of chemo), I feel like I’ve been completely written off by the team that’s supposed to be caring for me.
It started with a FIT test (result: 31), and after the camera test revealed a 25mm tumour, things moved quickly — CT, MRI, PET scans, and then the gut punch: “Yes, it’s cancer, but no, it hasn’t spread.” I was told I’d receive chemo and radiotherapy, then surgery. I clung to that.
But since then? It’s been a rollercoaster — and not a good one. I had to push for pain relief, chase results that were never explained, and even ended up in A&E multiple times because the pain became unbearable. Only then did a surgeon casually mention liver shadowing — which no one had previously told me about. It was never followed up until I chased it.
Eventually, I had a stoma fitted (which helped slightly), but then came the appointment at Christie’s where I expected a treatment plan — and instead was told, with no empathy or support, that the cancer is “incurable” and I might have a year to live. No offer of counselling, no one asked how I was coping. It was crushing.
Since then:
I’m chasing every appointment myself
Blood tests are being scheduled wrong (too early) and I have to fix them
Pain is returning, and I still pass blood despite the stoma
I’ve had to ask my GP to order tests that oncology ignored, like a testicular scan
When I ask questions, I’m told “it’s aggressive,” “it’s advanced,” or simply “no” — no explanation, no hope
The hardest part? I feel like I don’t matter. Like I’ve been written off — expected to quietly carry on until I can’t.
Yet I’ve spoken to people who were also stage 4, who were told similar things, and they’re still here years later. Some are even cancer-free. So why am I not getting the same fight from my team?
I’m not naive. I know my situation is serious. But I deserve answers. I deserve care. I deserve hope, even if it’s small.
I’m reaching out here to ask:
Has anyone else experienced something like this?
Did anyone push for second opinions and see results?
How do you keep your strength when the system seems to have given up on you?
Thanks for reading this. I don’t expect miracles — but maybe someone here understands.
— Just a patient who wants to feel heard.
Hello Sicl45 I think how you are feeling is totally expected given what you are reporting. Are you under an oncologist only or a Neuroendocrine specialist as well? My husband has a NET cancer different to yours but we have found that oncologists have a different perspective to the Neuroendocrine views. These cancers need a multidisciplinary approach with both these two specialties and surgeons.
We’ve had a not so-great-experience at one hospital so went to another for a surgical opinion (both centres of excellence which I know the Christie is too). We went private for an initial appointment then went straight back into NHS pathway with the new surgical team. It is difficult to get a handle on prognosis too and this is something we struggle with.
I am flummoxed by the ‘shut down’ you are receiving too. I mean there is always a plan even if it is palliation.
Do you have a friend/relative who could support you with this? If you are not happy, go for that second opinion for your own peace of mind.
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