Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Long wait for a treatment plan

Dan555
Posted by

My 48-year-old brother is waiting for the biopsy result and a meeting with the oncologist to discuss treatment.

From what we know so far he has cancer of the Oesophagus, and he has tumours on his liver.  He is taking morphine for pain, has a temperature of 38/9 in a hospital ward for pre and post surgery. He has lost a lot of weight. He can swallow. 

We have been told it doesn't look good, and from the research, I have done I can see why.  The whole thing has been so sudden. It's horrible.

We are hoping that Chemo will shrink the tumours and we can have a few months, lots of months hopefully to focus on good things. 

The hospital has been lovely, but we have been in that ward waiting for a formal 'diagnosis' and plan for treatment for nine days so far, and on Tuesday that will be 11days - he was admitted on the 15th, Is this normal?

Thanks. 

latchbrook
Posted by

Hi  and welcome to the online community

Waiting for results and a meeting with his oncologist must be very stressful for your brother.

Although I don't have experience with oesophageal cancer it's not uncommon with other cancers that tests, followed by a MDT meeting to decide on the best course of treatment, can take 2 weeks or more.

Responding to your post will have bumped it back to the top of the page and hopefully someone with more experience than me will see it and reply to you.

If you don't get any replies you could post your question in ask a nurse and one of the specialist nurses will aim to get back to you within 2 working days. Alternatively, your brother should have been assigned a cancer nurse specialist and he could have a chat with her about when he's likely to get hi s results and speak to the oncologist.

x

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

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Zappaman
Posted by

Hi Dan, sorry to hear about your brother and the waiting is worrying I know. I had oesophageal cancer at the stomach junction, which was staged at T3 N2 M0. This means that I had local lymph nodes affected but it had not spread anywhere else, so I don't know about the liver mets. I was about 10-12 weeks from diagnosis to surgery so I don't think you will have to wait much longer for a treatment plan. Ignore the statistics I did as there would have been no point in going through with the surgery based on the numbers. I had a strange sensation of thought and it told me to ignore what I had read and to start thinking positively about beating this and getting through it. Good luck to your brother and kind regards Frank.

Bird sung
Posted by

I am sorry to hear that . Talk to your oncologist and surgeon .

i am not sure about the lung and I am currently waiting 2 weeks for major operation at my junction of oesophageal upper and lower near to my stomach . I stay positive all the times and my professor recently told me after the latest pet scan , there is chances that only partially remove my stomach instead the whole stomach .

eat healthy and drink more clean water , walk every day and rest plenty .

Dan555
Posted by

Hi, 

Thanks so much for the reply. We met finally with the chief endoscopy surgeon at the hospital (Homerton) yesterday, with the results of the biopsy, and the outcome of the MDT meeting (thanks for that information, we didn't know the process). We already knew that the prospect wasn't good. But the hope was that chemo might shrink the tumours to prolong my brother's life a little longer. It was a long tense wait, as no one could tell us what time we would get to meet with anyone. We sat from 8am to 4.45pm waiting, talking, laughing and crying, we even made a trip to the cafeteria. My brother took morphine and kept calling the hospice a hostel, and I kept calling the biopsy an autopsy.   

The man came at 4.45, thanks to behind the scenes efforts to make it happen (I am guessing), and he told us the tumour in the gullet was relatively small - Adenocarcinoma - which is good. My brother can eat. But that the liver was too damaged by the tumours and he thought the probability of having chemo was unlikely. He would talk to the oncologist at Barts tomorrow (which is today), but we already know what she will say, we know it in our hearts. My way of looking at it is that my brother is too good for chemo.  He will go home with morphine and a fancy bed you can plug into the wall and we will make this the best few months possible, for him, for us, and the kids. 

The staff on the Thomas Audley ward are the kindest and the most professional people I have ever seen working. They desrve more money and better resources. They have my deepest admiration and respect.

Dan555
Posted by

Hi Frank, 

Thank you so much for your reply. You can see from the post I have just made to that things didn't work out so well.  But I do think you are right, that even with our news there are plenty of reasons to be positive, and we will get through this, with an outcome that will make everyone stronger.

I wish you the best, and keep thinking positively.

Dan 

Dan555
Posted by

Hi, and thanks so much for your reply.  It's so true to stay positive - our news wasn't so great, but that doesn't change who we are or what we are capable of. Good luck with the surgery, as you say stay positive all of the time, eat well, drink clean water, walk and get plenty of rest - that is a recipe for us all.

Dan X

latchbrook
Posted by

Sorry that things haven't worked out how you'd hoped . However, you never know what the oncologist will say today.

Whatever happens though, I hope you have a great time making memories with your brother over the coming months.

x

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

What is a Community Champion?

Zappaman
Posted by

Hi Dan, i'm sorry to hear about your brother and his liver tumours. I know that if I was told there was nothing they could do I would research alternatives. Good luck and kind regards Frank.