Oesophagus cancer

Tracy 22 days ago

6 replies
33 subscribers
196 views

Hi all,

im new here, and since the 4th of Feb have been in a state of, not shock or fear but the bizarreness of it all, I went for an endoscopy end of October, I know it was then because even with a tube up my nose and down my throat I’m still chatting about what everyone was doing for Halloween . The nurse said she was a little concerned over a patch of odd looking cells in my oesophagus, then it was another 2 endoscopy’s and 5 different scans, so up until the 4th February I had been told it was dysplasia ( pre cancer cells) . Then went for an appointment at the diagnostic hub, when we went in the doctor says oh why are you here today, I said I believe I’ve got dysplasia, he frantically look’s through he screen and says, oh no it’s a 3-4cm inoperable tumour, then pretty much stood up opened the door and shooed us out. I then heard nothing for a week so I rang the cancer centre to see if I had an appointment with an oncologist, no was the reply, but they were very good and got me an appointment the next day. So I went, and yes was told very matter of factly yes it’s a tumour and you’ve got 3/5yrs to live if your lucky. Anyway I could ramble on about the last 6/7wks of my life and what I think has been a shambles of incompetent people and systems. Has anyone had similar experiences?

Emma85 22 days ago

Hi Tracy

I am sorry to hear this has happened to you. It shouldn't happen.

Not the same cancer's but similar experience with my mum and ex husband in terms of quite blasé attitudes and little support.

Mum had an appointment last Thursday to discuss lung biopsy results - We were already informed it was lung cancer after her CT scan. Waited 2 weeks for the biopsy and a further 2 weeks for the results.

The appointment Thursday at Great Western Hospital in Swindon was literally 10 minutes long, in which the consultant basically told her the cancer is too extensive, shes too frail, inactive and elderly to be 'considered' for treatment. She told her shes got weeks to months left to live and to just enjoy what life shes got left.

There was a macmillian nurse present who did not utter a single word to us which I am deepky shocked by as I work with many many nurses including palliative care nurses who are simply amazing.

There was no signposting to any support services. My mum is 80 and lives alone ( I live 80 miles away) she has little support and told them she was struggling with getting about at home, very frail and getting out of breath etc. It was almost as if she wanted us gone.

At the time I was too shocked to really think about this but now I am horrified at the delivery of care.

I am a student nurse so the info they gave I understood however my mum didn't fully comprehend everything. It all just seems to horrendously brutal and so different in terms of the care you receive in different areas.

My ex husband spent a few days in hospital last week with severe abdo pains , where they found pancreatic cancer, which they believe has spread to his his liver and lungs. He was sent home with paracetamol and said they would contact him to have a biopsy on liver and lungs. On leaving hospital he had absolutely no idea what pancreatic cancer is and what this means, he had no idea what 'metastatic' means. They just gave him his discharge summary and sent him on his way.

I am just shocked to my core about it all

Tracy 22 days ago in reply to Emma85

Oh Emma, when I hear that from you, it is very sad to hear that vulnerable people really aren’t getting the care they need and that you would expect. I’ve got neuropathy so my mobility isn’t great anyway and live on my own ( with the cat ) so I did stupidly think their would be much more help/support out there, but as you say no signposting to any support sites you have to just try and find out any information yourself, but you really haven’t got a clue. I’m still trying to speak to PALS ( the hospital’s patients liaison people) . I do hope your mum gets the support she needs and deserves, I’d just keep bothering her doctor to see if can organise something xx

latchbrook 21 days ago

Hi Tracy and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community, and although I didn't have the same cancer as you I know what a stressful time it can be.

The online community is divided into different support groups so I'm going to recommend that you join the oesophageal cancer group, as you'll then connect directly with others who have the same type of cancer as you to ask questions, share experiences and get support.

To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

It would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Emma85 20 days ago in reply to Tracy

Hi Tracy

I hope you are doing ok. Do try to speak to PALs. I spoke to them today re my mum and they were very helpful.

Can your gp refer you to OT?

Tracy 20 days ago in reply to Emma85

Hi Emma,

Thanks for taking the time to reply, well my friend had said PALSs was very good when her father had the same Oesophagus cancer, so I did ring, but it was a recorded message saying we will get back to you in 3 working days and that was 2wks ago, I left another message yesterday and I’ll have to wait and see, but I’ve got to say I’m not holding my breath, things just seem to be grinding to a halt ere in Liverpool at the moment, I think I’m getting a bit of sn inferiority complex

Emma85 20 days ago in reply to Tracy

I was spurred on to ring PALS because I finally managed to speak to a macmillian nurse about next steps for mum, and she told me they had made an appointment for her to see the specialist cancer nurse who would help her to manage 'new symptoms'. However when she told me the appointment is in July I was absolutely horrified.

I explained that mum had been given a prognosis of weeks to months left - so was an appointment in July the most appropriate time scale? I was told this nurse only works one day per week!

I would wait to hear from them and of the 3 dayd do pass and nothing try again. Is your GP any good as there will be services they can do referrals to