Oesophageal cancer

The staff at hospital are pushing me to have surgery and say chemoradiotherapy has all sorts of problems. But there must be someone who has had chemoradiotherapy 

I honestly don't think I'd survive an operation like that. While Upper GI nurses are cheerful and positive, Oncologist is more guarded. And I hope the wool isnt being pulled over my eyes. Hate seeing Xmas stuff in shops because something tells me I may not be here for Xmas. Any support or advice would be welcome. Julia 

Hi Julia,

I'm so sorry this is so miserable.  It really is. I think the fatigue from the chemo affects our mood. I felt like a basket case today - my mood was all over the place. Of course you're terrified.  I'm terrified of the surgery. Its tricky to separate out the realistic fears from the terror. 

I think break down the problem into more manageable bits. For example 

Firstly, You're exhausted physically and emotionally from chemo. I'm only on cycle 2 and I can feel that my body is weaker. What do you need to do to get a little break? Personally I like massages, acupuncture,  etc. so I'm planning this in. Take a moment to acknowledge how brave you have been and how well you have done.  4 rounds of FLOT plus the re-staging is massive!!!! There are times when I'm finding to body blows from FLOT too much so I'm in awe of you having completed the course. 

Secondly, my experience so far has been different team members have different views. I've found the consultants to be more guarded than the nursing staff. I suspect its different points of view. I'd suggest being upfront in asking for more information and being clear about the impact of the different views on you - honestly we have enough to deal with than to try to read between the lines of what people are saying. Also what are the different treatment options and their advantages/disadvantages,  etc.

Thirdly, I'd suggest taking someone with you who can listen to the answers and can put forward the questions if you get stuck. I find I need this even if I'm taking notes. I think this is so new to us that I don't hear all that is being said even when I'm really listening and taking notes, etc. 

I'm not much help in terms of information- sorry but I hope this is useful. 

Anyway, I'm thinking of you. 

Take care

Hi. Each of us are different in our own ways and treatment therefore may vary. I am currently under the care of a cancer consultant at St. Barthomews hospital in London.

I have been diagnosed with cancer to the back of my tongue and oesophageal cancer.

Surgery for me was not the first option but that's me. So far I've had 35 doses of radiotherapy and 4 lots of chemotherapy. Their have been a number of side effects. The usual ones like losing my taste, weight loss but the biggest one has been memory loss. I can't remember on one hand being in hospital, visitors, conversations but other things are quite clear.

Although the treatment has stopped and I feel alot better (eating, swallowing, weight stabilised) the difficulty is I don't know how successful all this has been. I'm now waiting for a PET scan and a further consultation. This means I'm in limbo for now. 

My prognosis in the longer term as described by my consultant is not great but I've got a chance.

Their are no easy answers or options here. By choosing the path I'm on I'm worried that the cancer will spread and that surgery is no longer suitable for me.

I'm not sure if this has helped any with your decision. It's just my experiences so far. Best wishes.

Neil

We have Holistic Centre at hospital I attend and I'm going for reflexology session tomorrow. It might ease the awful pressure headaches I'm having. Cd be due to stress. Also have Mindfulness and Reiki sessions next week. Reiki is a few hours before I meet Surgeon so might make me feel more relaxed. I get paranoid about what people mean and if there are underlying signals in their body language. The nurses are positive saying you'll be out of hospital for Christmas, etc, but consultants are more guarded as if they expect me to die

There are positive stories of those who have inoperable cancer on this site, who have well outlived their expected lifespan with chemoradiotherapy. Hope this is the case for you. Did you get any side effects from your treatment? Julia

Did you have pain in throat and oesophagus with radiotherapy and did you need a feeding tube? They've been scaring me with the threat of that. Julia

Were you given surgery as a choice in the first place? Julia

Thanks for your kind words. You're right. Our emotions are all over the place. I felt positive during chemo because I was doing something to get better. I'd Started sorting things to take to hospital. Ordering new pillows to support me in bed after coming home etc. But fighting spirit has gone. Went to reflexology at hospital's holistic centre. Also went to the chapel and chaplain prayed with me which made me feel better. I feel better when I'm out of the house talking to friends, window shopping,etc. Being at home gives me time to overthink.

My first 2 sessions of chemo were not too bad. Still managed to potter about house and garden doing small tasks. After third session, fatigue really kicked in and all I cd do was sit on sofa, watching telly. Try to complete full 4 sessions of chemo. Give it your best shot! It certainly does the job. I cd only eat soft foods before chemo but now I can eat anything due to tumour shrinkage. So best of luck with the chemo. Julia