Tumour in middle of oesophagus

Hi A1972.

Sorry you find yourself in this forum but for the diagnosis you've received you're in the right place. Don't go to Google. All the advice you need is right here via stories of others with the same issue, or Macmillan and your team of medics.

I have finished treatment now but was diagnosed with Oesophageal cancer at the junction of my stomach last March. If you click on my name above (GeoFerret), it will take you to my profile which I have written like a journal. It will give you and idea of what lies ahead. I was put on a regime of flot chemo followed by surgery and more chemo but your journey may not reflect mine. Age, medical conditions and staging of tumor will all have a bearing on what's offered.

The good news is that you can get rid of it and come out the other side. Stay positive and deal with each challenge as it arises. Don't be afraid to ask questions on here. There are no such things as silly ones. You will have loads of info and contacts, use them all. You are not alone, your Upper GI Nurses are wonderful.

Good luck going forward. You have a tough ride together but can and will get through it.

Best regards.

Geo 

Hi

I was diagnosed with a tumour in the middle of my oesophagus in March 2021. I was 53. Mine was a squamous cell carcinoma and I had radical chemoradiation - 4 doses of cisplatin by IV (once every 3 weeks, 6 hours each), 12 weeks of capecitabine tablets at home (twice a day) and 25 radiotherapy which started on the same day as the second cisplatin chemo. No operation. I'm on the SCOPE 2 trial but was not chosen for the higher dose of radiotherapy so had standard dose.

My tumour had completely blocked my oesophagus. I had a stomach feeding tube and lived on Fortisip for a while. The treatment was hard going, I was very weak and recovery was slow.

But I've made 2 years clear. For the first 2 years I had tests every 3 months - Gastroscopy with dye each time, alternating with a CT scan or a PET-CT scan, I'm now on 6 monthly tests for the next 3 years.

Good luck with everything.

Hi,

Thank you for your reply, its so good to 

Hi,

Thank you for your reply, its so good to hear your story, I am so pleased everything has gone well for you.

Its the waiting game now that is so hard, so many things are in your head, has it spread is it treatable.

My husband is 56, never smoked, hardly drinks.

He is currently on a liquid diet, soups fortisips to build his strength up due to the weight loss.

We are trying to stay positive.

In the last couple of months he has had a back xray, chest xray and echocardiogram to diagnose his pain and all came back normal so I am praying it is localised.

Good luck with your journey.

Hi Geo

Thank you for your reply, I have read your story which gives me great hope.

Good luck to us all, we can beat this.

Hi,

Did you have a lot of back pain, my husband is in a lot of pain in the middle of his back at the moment.

Hi, 

Yes I had bad back pain for many months before diagnosis, it drove me mad, I couldn't work out what I'd done, assumed I'd pulled a muscle. I was using ibuprofen gel, radian B, hot water bottle etc, nothing helped. Eventually when I saw my consultant I mentioned it, she said it's the tumour pressing on the surrounding area. That made sense. After my first chemo the tumour shrank a lot and the back pain went away. 

Hope that helps. 

How are you and your husband coping? When is his next appointment? 

Keep in touch

Amanda 

Hi Amanda,

This is how my husbands started, it started with the back pain and pain in his left ribs about 3 months ago, he thought he had pulled a muscle at work, went to the doctors had a chest xray, then a shoulder xray then a echocardiogram all came back normal but still in pain, then about 3 weeks ago he started feeling like his food was getting stuck and hard foods he was bringing up he started to lose weight rapidly because he wasn't eating so the doctor sent him for a urgent endoscopy, that was Friday the 29th Dec when the consultant told us he had a tumour in the middle of his oesophagus and 8 biopsies were taken, I asked if it was hopeful and she said it was, she said it could be surgery and chemo. He had his CT scan on Friday, just waiting for the telephone call now.

So many things go through your head, what if its spread, will they be able to do treatment, we have a 13 year old son who worships his dad.

Trying to build him up now with soups and fortisips.

We will stay strong and positive  

How did you cope with it all?

Angie

Hi Angie,

It's so hard isn't it. So much goes round in your head. I was slightly different, I had swallowing problems before the back pain started. Had been ongoing for a year, came and went. Then things got very bad Feb 2021, peak covid. By this time I was on soup & custard, took ages to even get a GP phone call appt, I asked for gastroscopy, that was booked for a couple of weeks later but unfortunately the swallowing got so bad that i couldn't swallow water or my own saliva so I went to the local walk in centre, they sent me to A&E. I was admitted, drip put in my arm as I was nil by mouth. This was a huge shock, I'd not gone prepared with an overnight bag, or a care plan in place for my son, I don't know what I thought they'd say but it didn't involve staying in hospital! But I ended up staying in 18 days, had a gastroscopy which showed a tumour blocking my oesophagus - I saw it on the screen during the Gastroscopy and I realised it was bad news but prior to that cancer hadn't crossed my mind. I just thought it was a stricture. Had a nasal feeding tube fitted, then a stomach tube. Taught how to syringe feed Fortisip and came home. Very weak, very tired (no sleep in hospital and I'd been moved to 5 different wards during those 18 days as the hospital was struggling to cope during covid). No visitors allowed - they let my partner bring clothes etc twice, I was allowed to see him at the ward door, at a distance, for 5 mins. I couldn't talk much because that created saliva that I had to spit out and also caused the most horrible constant burps.

I have a grown up son, 29, who is autistic with severe learning difficulties (mentally like a child, can never be left alone) I am his primary carer, so I totally understand how you feel about your son. The worry for my son was as huge as the worry for my own health. I couldn't die, who would look after him?  We had practical issues too, so many hospital appointments, trying to find carers for my son during covid was awful. He didn't understand why I was not eating or drinking anything, why I was so tired, couldn't get out of bed some days. It upset him greatly and I felt like a failure as a mother on top of everything else. On the plus side he learnt to do a bit more for himself because I was just too ill to do it. No one could visit me indoors because of covid so we bought a small gazebo for in the garden so I could see my sister and friends even when it rained. 

My partner really struggled with the situation. He was absolutely marvellous at the practicalities - taking me to what felt like hundreds of appointments - he was on furlough which helped - but he found it hard watching me be so ill and he felt helpless.

At the time my oncologist and surgeon said that the hospital was struggling to book in operations as it was overwhelmed with covid patients, and because my tumour was squamous cell carcinoma, mid oesophagus, stage 2, 6cm, they recommended radical chemoradiation with active surveillance afterwards (Gastroscopy every 3 months plus alternating CT scan or PET CT scan for 2 years, then 6 monthly tests - Gastroscopy and CT scan, no more PET CT scans - for 3 years. They offered me to take part in a trial (SCOPE 2) that is testing whether a higher dose radiotherapy has a better outcome. I agreed to go on it but was not chosen to have the higher dose radiotherapy. I was very lucky, it worked really well for me. I know most people on here have the chemo - operation - chemo treatment plan and there's lot of people to ask about that. A year after diagnosis (March 2022) my oncologist said if I'd just been diagnosed, I'd have had the chemo -operation-chemo treatment plan. So, strangely, covid worked in my favour on that one point. 

You're not alone, there are lots of people on here who will answer any questions you have. Keep in touch, keep asking questions, and know that we are here for you, your husband and your son. 

Amanda 

Hi Angie, 

My husband went for an endoscopy on 30th December 2022 due to issues swallowing and weight loss. They couldn't get the camera past the blockage and took biopsies, took bloods and did the CT on the same day. I know how hard New Year is with the uncertainty. My husband had extensive cancer and they didn't know if the standard treatment was possible. On a positive note, he responded well to the chemo and was able to eat normally again after just one cycle. He went into the surgery not knowing if it would be able to happen, but it did. He had the remaining FLOT chemo and had a 60% response. He is currently having chemo radiation as the margins weren't clear after surgery, but they do think this is the end of the treatment. You are embarking on a rollercoaster (ours has lasted just over a year) there will be bad times, but there are good times too. You must hold on to the hope that things will get better and you must look after yourself. My husband is 55 and we have two kids who are 16 and 20. If your husband doesn't like the fortisips, try the fromage frais or luxury yoghurts with cream from Marks and Spencer, they have the same calories as the fortisips and taste way nicer (according to my husband). Feel free to get in touch is you need any help, even if its someone to rant at. It is not fair, it is a hard road, but if we got through it so can you. Take care.