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.

Stage 4 Esophageal Cancer

Posted by


I'm sorry to hear about your diagnosis. It is a horrible and difficult time. 

Regarding chemotherapy, you can always try it and if it does not sit well with you, stop it.

Ultimately, your quality of life is the most important thing. There is no point, in my opinion, having it if it is going to make you feel worse. Your family will want you to have it, but, only if you can tolerate it. 

All the best.

Posted by

Hi Caroline,

I saw my oncologist yesterday, Wednesday. It was a really good meeting.

Apparently, because of a particular protein found in my blood (I think it’s HER3, or something similar), they have changed the proposed drugs for my chemo. treatment. One of these new drugs can have a weakening effect on the heart, and as I’ve had a couple of heart issues in the past (mechanical aortic valve and endocarditis, a couple of years ago), I’m now more concerned about my ticker than the side effects of the chemo.

We talked things around quite a bit, including delaying things for up to 3 months. Where we’ve ended up is to delay any decision for about 5 weeks as I’m due another scan in 4 weeks and then another consultation the following week. By that time they will also have the results of a recent echocardiogram, and we can then have a further discussion on the way forward. My feeling is that if there is a high possibility of an impact on my heart, I may not go for treatment, but if the probability is relatively low, I will probably go for at least one cycle and see what happens.

Strangely enough, the consultant encourage myself and my wife to get away on holiday for a week or so, we’ve therefore taken her up on that.

I hope your dad makes the right decision for him. At the end of the day, I think that if you believe that the decision you make is the right one, then it is. You can also remind your dad that if he starts chemo. he can stop it whenever he wants if the side effects are too much.

All the very best to you and your dad.

Posted by

Hi Pete G

i have bone mets too (to my hip) and I’ve already had a hip replacement then radiotherapy again and then a horrific 12 hour pelvictomy as it grew back. The hemipelvectomy was worse than the oesophagectomy but as I had a single mets it was worth a try. 

I live in in constant pain from my pelvic surgery but I am still glad to be here. I am in amitripyline for nerve pain amongst other meds but it has really helped with the sleep. You should see your gp as not sleeping makes depression worse and is an important part of your immune system. 

I am now going into a trial or immunotherapy. I never give up fighting but have very bad days too. You are not alone. You can also call Macmillan’s for emotional support or the oesophageal patients association. 

All the best 


Posted by

Hi Martin 

my ex husband was dis gnoses with stage 3 oesophageal cancer inoperable last September spreading to lymph nodes and his lungs. He has had 3 sessions of chemo plus daily tablets and although he didn’t really initially have any side effect the last time his hands and feet started to burn and he suffered from hand foot syndrome. At the same time he got a small cut on his toe that has now turned his toe black and necrosed due to his diabetes. 

Currently he is on oramorphine and MST daily and has got the ok to start Chemo again next Tuesday. His recent scan has shown the rumour being contained and stable (whatever that means) 

He was very low following diagnose and chemo due to lethargy and unable to work properly with his toe BUT I have sort of taken over his care bullying him a bit to eat healthy because he lives in his own and hadn’t been taking care of himself and now he is wanting g the chemo and his mindset has changed to wanting to live with cancer rather than how long he had left to live. He starts having herceptin next week so we have fingers crossed it will have a positive effect 

I wish you all the best, I feel strength, hope and your mindset will help you make the right decision for you. But remember There are side effects to everything doesn’t mean we will all get them my husband had none until the 3rd chemo and if he had told the Drs first sign of burning  it wouldn’t have got so bad but he kept quite for weeks but he now knows he has to monitor his bodies responses 

Good luck 


Posted by

Thanks Cath.

The last time I saw my oncologist, she told me that apparently I had a protein in my blood called HER2 which meant that they would need to change the proposed chemo drugs to cisplatin, capecitabine and herceptin. She also said that because I have minimal symptoms and no vital organs are affected by the metastases, that the decision could be delayed to a later date.

What we have agreed is that I will have another scan in about two weeks and then see her again a week or so after that. In the mean time she will get the results of an echo cardiogram that I had done at the end of January to see the strength of my heart ( I had my aortic valve replaced in 2005) as the herceptin can affect the heart. Anyway she said that once this info. has been gathered and analysed we can discuss the way forward. In the meantime she told us to get away and relax for a bit. So we had a few days in Suffolk last week and going to have a week in Spain next week.

I must admit the longer I have left the decision, the more inclined I am to saying yes to the chemo. but still have to actually make the decision.

Thanks again Cath  and the best of luck to your ex. 

Bird sung
Posted by

Dear Cath,

i am sorry to fear that . Your husband need a lot of caring and support at the time being . 

I am going fir a pet scan next Tuesday as per advised by my surgeon . So far my results were good  and the tumours has scrink down.

i am grateful as my family members were giving me full back up and now it’s me who have to stay positive . I had stop working since last October 2018.

please take care your husband and advise him not to stress and follow the advise of your doctor 

all the best 

Posted by

He has the same HER2 so having the Herceptin this time there are really good reviews about it 

I am trying to get him on here because I feel it would do him good to speak to others in the same boat. 

Have a great time in Spain, stay positive 


Posted by

Absolutely I’m taking over a lot for him so all he needs to think about is keeping healthy. I keep telling him he has the best ex wife he he 

good luck to you stay positive 


Posted by

Hi Blossom

Thanks for replying.

I have been told that they can do nothing for me long term. Any radiotherapy or chemo is just to control symptoms or buy me a bit more time.

I am seeing the oncologist tomorrow as my symptoms have changed. I have a lot of pain in my rib area on the left hand side and am wondering if they can control the symptoms with radiotherapy.

Chemo seems increasingly unlikely I would say as the pain has probably arrived too soon but I'm not sure.

Keep thinking of the title of that old Beatles song. Here there and everywhere. Black humour as its a great track.

Sorry to hear that you are in pain. Currently I take gabapentin and slow release morphine. I have some oramorph but I stopped taking it as I overdosed last week. It was horrid, a paramedic came out and shine a torch in my eyes and my son said my pupils were like pinpricks.

I wish you the very best of luck with the trial.

This is a horrible disease (understatement), the mental side of which is very very challenging. I am very nervous today due to oncologist visit tomorrow.

Kimd regards, hope you are having a good day today

Pete G