Oesophageal cancer confirmed. Possibly spread

I posted on here a week or so ago saying that subject to biopsy results and ct of chest abdomen and pelvis I'd been told I almost certainly had oesophageal cancer. Well the results are back and in the words of Homer Simpson.... "d'oh!"

Biopsies have confirmed it's squamous cell cancer of the oesophagus. CT scan shows areas of concern in my liver and my left lung so it may have already spread. (They are going to let me know the full details face to face at my first radiotherapy appointment on Thursday). 

My chronic back pain is likely to be due to my oesophagus being expanded at the top to compensate for it being so narrow at the bottom and so the expanded food pipe could be pressing on nerve endings effecting my back. The average adult oesophagus is 20-25mm wide to allow food through. Mine is apparently 4mm so that explains why I can only manage liquid!

I'm actually doing ok mentally so far as I've been prepared for this outcome since January. (I diagnosed myself and asked for referral when my GP insisted she felt it was just psychosomatic). The pain Is a nightmare though even with oramorph and Im seriously tempted to take them up on the offer of a brief hospital admission to get my pain under control. (Less than 2 weeks ago I was managing to live alone and now Im struggling to manage even living at my parents with them giving me some physical help). 

I'll update again on Thursday but It's looking likely that it's stage 4 with liver and lung secondaries. The oncology consultant will go through all that with me and my parents on Thurs. Hopefully oncology will also give advice on who my parents can contact to get support for themselves because they aren't coping at all at the moment. Any advice on who to contact for support for carers and relatives would be appreciated xx

  • Hi Sam,

    I'm so sorry to hear that your self-diagnosis was right, I'm sure you wanted to be wrong. At least the news won't have come as a massive shock, though bad news is never easy to hear. 

    MacMillan are usually pretty good in providing family support and will be able to point your parents in the right direction locally if they don't have a local service themselves.

    Hope you get the pain relief sorted out soon.


    Cheers
    Dave

  • Really sorry to hear your news my mom has oesophageal cancer we found out on the 10th march it had spread to liver and lungs, on Monday she started chemo she's got to have 3 rounds then another ct scan to see if it's stopped it spreading  x

  • Hi Sam, 

    I just wanted to pop by and let you know that either you or your parents can call our nurses to find out what support is available for them as well as carers and relatives.

    Their freephone number is 0808 800 4040 and they are available Monday - Friday between 9.am - 5p.m.

    I hope you receive some better news on Thursday and that the pain you are experiencing becomes more manageable soon Sam.

    All the best to you and your family, 

    Steph, Cancer Chat Moderator

  • Thanks Steph

     

    Just a bit of a nightmare at the moment. My parents obviously love me and are going out of their mind with worry so they are keeping busy and trying to help. My dad is liaising with my health staff and doing practical stuff like moving things from my flat over to their house. My mum is well and truly mothering me... running me baths, following me round asking if im ok etc. It's lovely BUT also pretty suffocating. I want to liaise with health staff myself and do as much for myself ( eg run a bath and get dressed) as I can for as lomg as I can. Ive tried explaining this but it all gets a bit frought and they think im being ungrateful when I just want to be as independent as I can be while having help as needed. I think support for them would be really useful so I'll encourage them to phone. Cheers 

  • Very tough time for you. Could you speak to your healthcare team directly and adkbyhdm to loads direct with you?

    Maybe you could ask your parents to do specific tasks so they feel helpful and keep busy, without driving you crazy.  Specific meals or foods you'd like? Planning a day trip? Something along those lines? It's v hard to ask for things you don't need, but it might avoid some stress!!