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Hi just looking for a bit of advice, my uncle had a secondary brain tumour removed last year, they couldn’t find the primary cancer so was told he had cancer of unknown primary. The tumour was found to be an adenocarcinoma so most likely from gastro/lung/colorectal area. We were given a 9 month rough life expectancy.
He’s smashed it totally, lived on his own with my help and carers, visited hospice once a week, coped so well, but lately things have been going down hill, he’s in a lot of pain, he’s falling, being sick, struggling to swallow, sever stoop, had swollen leaky legs. Doctors and the hospice literally never took anything serious at all culminating in a really bad fall on the 17th of February.
He got hospitalised and we got told he had bad cellulitis and he would be fine, I knew there was more to it, they tried to get my uncle up to walk he physically couldn’t, a speech therapist phoned me I told her what was going on, she decided more tests were needed and his oncologist came and did some tests and decided to admit him to the cancer specialist hospital on Friday(28th) for a scan on his spine.
Today we were asked to attend as they had the results. My uncle has a tumour inside his spinal column they are sure it’s secondary and feel there’s more tumours as he’s not doing to good at all. I’ve been told he won’t get home they are trying to get him into a hospice. I’m so angry as I feel no one listened and he’s obviously been in horrendous pain, he has learning difficulties and gps were asking him his rating of pain and saying he doesn’t look in pain etc when he has no understanding of rating etc we were so mad as we could see something wasn’t right.
We can’t rely on William to reiterate to us what’s going on totally, so can anyone shed any light on what’s next for him, we have been told months at best no treatment just controlling symptoms. Has anyone been through similar diagnosis?
thanks in advance
Hi, I dont have any experience of this, but just wanted to say how sorry I am for what you and your uncle are going through. Sadly, those with learning disabilities are too often ignored and not listened to. That must be horrendous for you as someone who cares about him. I hope you get some advice from someone who knows more about control of symptoms, or you could contact the hospice team for more information yourself, as you say he cannot necessarily comprehend it all and someone needs to be his advocate.
Hi Lynne, my step dad was diagnosed with a tumour on his spine from advanced prostate cancer. It didn't cause him any pain, but he found it difficult to walk and eventually was only able to move about with assistance. His legs just became very weak. The specific condition he had was MSCC, but not all spinal tumours necessarily create this condition. He did receive a one off high blast of radiotherapy, but it didn't seem to improve anything.
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