Digestive issues

Hi Style queen

I am sorry that you have not yet had a reply to your post but sometimes it can take a little while for someone in similar circumstances to see it and respond.

Welcome to the Online community.

I am sorry to hear of your diagnosis of squamous cell carcinoma in your oesophagus. 

Having a diagnosis of cancer can feel overwhelming at times, especially when undergoing all the testing and waiting to have a treatment plan. I am pleased that the nurse has been in touch with you and an appointment has been arranged to see the surgeon. This would be a good opportunity to talk through your other conditions. 

Have you been able to discuss with your nurse your current pain, discomfort and vomiting? If not I wonder if it would be worth contacting your GP for advice on how to manage this whilst you are waiting for your appointment. I wonder if it is worth asking about the omeprazole dose and whether there is anything else that could help in the meantime. With the current heatwave, if you are only able to take small sips of fluid that you need some support. 

You could also give the Support Line a call and talk to one of the nurses. The Support Line is available from 8am-8pm everyday. 

Hopefully someone who has had similar experiences will now see your post and offer some more specific advice. 

In the meantime I wish you well and if there is anything you need, then you know where we are.

Jane

• I have spoken to both my gp and nurse. My omeprazole dose is already huge at 40mg morning and evening. Doctors just added famotidine.  Still suffering.
• Thanks 

Hi

I had squamous cell carcinoma mid oesophagus in 2021. I was unable to swallow anything at all, not even a sip of water, as the tumour had blocked my oesophagus, so I had a feeding tube fitted. I syringed Fortisip and all medication and water into it. Could this be an option? 

Take care,

Amanda 

Hi thanks for your reply. I had a feeding tube for 2 wks. I couldn't tolerate it my throat felt like I was swallowing razor blades. Developed hay-fever while it was in which disappeared the minute the tube was removed.  Did you have treatment and the operation how are you know. 

Hi,

My tumour was T2N0M0. Diagnosis and treatment was during the height of covid. I was 53. My oncologist and surgeon said in normal (non-covid) circumstances the treatment plan would be chemo and radiotherapy at the same time then the operation. But they couldn't guarantee being able to do the operation in an acceptable time limit after the end of chemo & radiotherapy so that wasn't a viable treatment plan. So I had higher strength chemo plus radiotherapy with the hope that would give me an 18 month window to have the operation if needed. The tumour shrank significantly after the first chemo and the rest of the chemo & radiotherapy worked really well so I have not had the operation.

Started treatment May 2021, 12 weeks of chemoradiation (4 cycles of cisplatin at hospital and also capecitabine tablets at home for 12 weeks) overlapping with 5 weeks of radiotherapy. 

I'm doing well. Have to stick to a bland diet as anything fatty, spicy (tasty!), alcoholic irritates the damaged part of my oesophagus. No fizzy drinks, they cause horrendous painful burps. The radiotherapy caused it to be scarred and it's less stretchy than a normal oesophagus; I have to chew everything very well and still occasionally feel food going down, which is a stark reminder to chew better. 

I had the feeding tube in my stomach for 6 months. For many weeks I couldn't swallow anything at all so it was my lifeline. 

Have you been given any contact phone numbers for hospital? A Macmillan nurse? I would ring them and explain. 

Take care,

Amanda 

Thankyou so much fir reply. Glad to hear your story and your doing well. I do have a number for nurses to contact. I have an appointment with surgeon on Wednesday. We will be discussing feeding. The ng tube down my throat was awfull so will have about a peg direct into my stomach