Gastro oesophageal junction cancer

Hello

By a catalogue of errors and missed chances, my cousin has had all the treatment that can be offered. She is currently in hospital waiting for some sort of diagnosis or help to deal with the liquid swishing about her stomach. The only relief is lying flat.  If she sits up, the liquid splashes up and touches the tumour which leaves her in agony, the highest dose of morphine is not helping with pain relief  Her ankles are now swelling. We do not know if there is a centre of excellence for this side effect ( the medical staff say that it is a side effect of the high dose steroids she has recently been given for a secondary tumour, that they also missed ) 

Is there a leading consultant in this field we could contact?

We and she wants to fight this until her last breath

Thank you for reading

  • Hello and thanks for posting

    I'm sorry to read about your cousin's situation. This must be an incredibly difficult time for you all.

    It's difficult for us to answer questions like this as we are not involved in your cousin’s clinical care. Her specialist team are better placed to advise her on this as they are familiar with all her medical details. If she has a specialist nurse (CNS) involved in her care then perhaps they can provide you with further information. You often have to call and leave them a message and they will get back to you.  

    Although, we can't say for sure the fluid build up in her stomach could be due to ascites. This condition can cause fluid to collect in the abdomen causing discomfort, pain and the feeling of fluid 'swishing' around as you described. The swelling in her ankles could be linked to this fluid retention. It's also possible that the high dose steroids your cousin is taking have caused or worsened her fluid retention as this is a known side effect of steroids.

    I'm afraid we don't recommend individual specialists or hospital. Your cousins current specialist team should be able to advise you further on this. Some people like to ask for a second opinion with another oncology ( cancer) team as they want to feel that they have left no stone unturned. Your cousin could ask her GP or current specialist to refer her. We have some general information on our website about getting a second opinion.

    I wonder if your cousin has a Macmillan or palliative care team involved in her care. Their area of expertise is in the management of cancer symptoms, such as pain and they provide emotional support to the patient and family. You can read more about their role on Macmillan's website

    I hope this reply is of some help. Give us a ring if you would like to talk things over with one of the nurses on our helpline. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards,

    Celene

  • Hi Celene

    My cousin collapsed last week with very very low blood pressure so has been admitted to the oncology ward whilst they get her BP back up. Monitored every 4hours and now at 116 / They aren't treating anything other than that. The MDT was cancelled yesterday and there isn't another for 2weeks apparently.

    She did have Macmillan nurses but for some reason they aren't supporting her now, yet she can see some amazing support for other people on her ward. 

    She obviously has trouble swallowing but they give her a piece of chicken to eat ? She has now asked for jelly as she can swallow that.

    The focus is on physio to get strength in her legs as the steroids have made her legs very weak.

    She is fighting but thinks everyone has given up on her, so sad.