Welcome to the forum Nuttella although I'm sorry to hear your daughter has been diagnosed with oesophageal cancer.

Hopefully some of our members who have had this diagnosis will stop by soon to share their stories and advice but in the meantime, you're very welcome to find out more about the treatment your daughter is due to have on our website.

I hope this helps but if you have any further questions, or would just like to talk this all through with someone, then do give our cancer nurses a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

We're thinking of you Nuttella and wishing your daughter all the best with her treatment.

Kind regards,

Steph, Cancer Chat Moderator

Hi

Sorry that your daughter has been diagnosed with oesophageal cancer. It's a very worrying time for all of you. 

I had oesophageal cancer, T2N0M0, in March 2021, I was 53, healthy, quite fit, it was all a huge shock. I had chemotherapy and radiotherapy at the same time, no operation. (A lot of people have chemo -operation-chemo). My tumour (6cm) was squamous cell carcinoma, mid oesophagus and had blocked my oesophagus completely so I ended up in hospital on a drip then had a stomach feeding tube into which I syringed Fortisip, water and medication as I was unable to swallow anything at all. I was offered to go on the SCOPE2 trial (which has now closed) where some patients were randomly chosen to have a higher dose of radiotherapy. I agreed to go on it but I was not chosen to have the higher dose so had standard dose. 4 rounds of cisplatin chemo by IV which took 6 hours each time, and capecitabine chemo tablets at home twice a day every day for 12 weeks. 25 radiotherapy sessions which started on the same day as the 3rd chemotherapy. It was hard work. I had lost weight due to not being able to eat, I was weak and exhausted. I felt nauseous but wasn't actually sick - they give you anti sickness meds - just felt generally very rubbish. After the first chemo the tumour shrank a bit and I was able to nibble cheesy biscuits (they crumble easily). Towards the end of radiotherapy my oesophagus became more inflamed and it was harder to swallow again but that only lasted a couple of weeks. It took me many months to start to feel better, regain my fitness etc. I'm 2.5 years clear so far. My oesophagus is scarred so I have to take small bites and chew everything thoroughly. I now have acid reflux which I didn't have before, so I'm on Lansoprazole and I eat a plain diet, nothing spicy or fatty. But I'm here and I'm well, so that's ok. 

I hope that helps. Best wishes to your daughter and all your family as she goes through this.

Hi there,

Thank you for replying and so pleased to hear that you have been clear for two and a half years. My daughter first saw a nurse practitioner in October  ( as you probably know, Drs appointments are few and far between) because she couldn’t swallow very well and was told it was acid reflux and given omeprazole, which she refused to take. Unfortunately she didn’t insist on seeing the Dr. until January when swallowing became really difficult and she was also vomiting She also has squamous cell carcinoma but in the lower part of her oesophagus, she has had two endoscopies, the second being an ultra sound but they were unable to get the probe down because of the narrowing. On Wednesday she had an laparoscopy and has to wait until this Friday for the results. Although the NHS have been brilliant getting her booked in quickly for these procedures, we find waiting around for the outcomes extremely stressful. It is fortunate (if you can call it that!) that she has squamous cell rather than adenocarcinoma because she can have chemo radiotherapy, hopefully without surgery. With adenocarcinoma, the choice is only chemo followed by surgery, which the consultant has told us is absolutely brutal! Thankfully my daughter can eat fairly well but doesn’t have much of an appetite, only small portions and soft food. On Easter Sunday she had an iron transfusion due to severe anaemia but now seems to be regaining a little more energy. The weight loss since the condition started has been rapid, she was 13 stones but now weighs 8 1/2, hopefully she won’t go any lower. As she continuously states, “ I am not done with living yet!”. I really hope that you continue to thrive and hope that my daughter will too. Once again, thank you for your kind words of support, they were very much appreciated

Hi Steph,

Thank you for your kind words and support. We will fight the good fight!

Hi

Yes, the waiting is awful. Once your daughter has a treatment plan hopefully you will feel that things are starting to get somewhere. 

I'd noticed I could feel food going down my oesophagus in 2019, googled it (yes I know I shouldn't have), took Gaviscon daily for a month despite not having acid reflux and it went away for 6 months, no problems at all. Then it came back. Went to GP in Dec 2019, did a H Pylori breath test which came back negative, given Lansoprazole. Took that for a month, made no difference, decided to just monitor it myself and changed diet. At the same time we had a lot of family issues, my dad was very ill as the covid lockdown started, he died July 2020. My sisters and I had to look after mum. Basically I just ignored my health problems till I could only eat soup and custard. Struggled to get a GP appt, finally had a phone call, I asked for a gastroscopy, I got an appointment within a fortnight but things got much worse before then and I couldn't swallow water so ended up going to A&E and admitted to hospital on a drip. Had a nasal feeding tube fitted then a stomach feeding tube. Gastroscopy found a tumour blocking my oesophagus. The staff were as stunned as me. I didn't fit the profile - female, 53, non smoker, didn't drink a lot - I've seen so many people like myself diagnosed with oesophageal cancer, it feels like the profile really needs to be changed so that GPs are more aware that its a possibility. It was a huge shock, I'd not even thought about cancer, I'd thought it was a stricture or hernia. Turned out the back pain I'd had between my shoulder blades was the tumour pressing on my spine, I thought I'd pulled a muscle. (Consultant thought the tumour had probably been growing for a year). Came home from hospital a fortnight later having been taught to syringe Fortisip and all medication into stomach feeding tube. I'd lost about half a stone before going into hospital then lost about another stone altogether during treatment. I've put it all back on again. I don't drink at all now, I can't tolerate fatty spicy foods but I do like chocolate!

I had cisplatin and capecitabine chemo, my hair became a lot thinner but I didn't lose it all and its grown back thicker and a bit wavier. The skin peeled off my feet (I recommend Udderly cream which I'd read about on a cancer forum), I had neuropathy in my finger tips and feet (weirdly my finger prints changed and I couldn't use my finger print to unlock my phone), I had tinnitus which was awful at times but has mostly gone now, felt nauseous and generally rubbish, and totally exhausted. But after the first chemo the tumour shrank - the oncologist was stunned at how much it had shrunk - and I was able to nibble on cheesy savoury biscuits - Fortisip are very sweet so it was nice to eat something savoury. I struggled with some of the Fortisip flavours and eventually had the neutral flavour which was better. As the tumour shrank the back pain eased. I was on paracetamol throughout the day and was given oramorph too but didn't often take it. Chemo can cause constipation or diarrhoea, I had constipation so was given Laxido/Cosmocol sachets which I had to syringe through the feeding tube. For the radiotherapy skin sensitivity I used Simple shower gel and shampoo and slathered my front and back with E45 after every radiotherapy session. I'd read on a cancer forum to use a soft toothbrush and sensitive toothpaste. I didn't have any mouth ulcers but my mouth was generally mildly sore. 

After my treatment ended I had a gastroscopy (with dye), alternating with a PET scan or a CT scan every 3 months for two years. That was very hard. I had the tests, usually about a week apart, then see the consultant, think 'phew we can breath again' and within days the next appt would come through. It was relentless. The stress was awful. Plus because of covid I was still isolating which was hard. I'm now on 6 monthly tests, gastroscopy with dye and CT scan. No more PET scans.  As I type this the post has just been delivered and my next CT scan appt has come through for May 20th. I've already got my appt to see my consultant on Aug 12. That'll be my 3 year check up. 

I'll be honest. It's a hard journey. And it took me a year to get over it. But I didn't have to have the big operation and I am grateful for that. 

Most people who get oesophageal cancer seem to have adenocarcinoma, there aren't many of us squamous people on forums, so if you have any questions, please ask. And keep in touch, let me know how things go, when your daughter gets her treatment plan etc. 

Take care,

Amanda 

Hi Glenis

I can understand how upset you are about this news. It's hard when you've got your head around one treatment plan only to be told it'll be something else, let alone something that they've told you will be so brutal for your daughter.

A lot of people who have had the oesophagectomy are on the oesophageal cancer forum on the Macmillan website. I think you'd find a lot of really helpful support there, particularly the thread titled 'Last Flot tomorrow, CT scan on the 1st Feb'. It's a group of people who've all been through the chemo -operation-chemo treatment plan who support one another, and they're always very welcoming to new people. They're very honest about the difficulties of chemo and the operation, but there are also some very positive posts. I really think it's worth a look. 

I hope you can get some answers as to why the treatment plan has changed. 

Take care,

Amanda 

Hi Amanda,

Thanks for your reply. My daughter has had a second opinion and has decided on the same course of treatment that was initially offered, which is what you had. The reason being,  the second consultant does not think that she will tolerate going straight into radiotherapy which may result in not being able to have the operation. Her weight has now dropped to 7st 12lbs and treatment starts next week.

Hope your scan on 20 May went well, have you had the results back?

Regards

Glenis

Hi Glenis

How is your daughter? Has she started her treatment?

I'm seeing my consultant on June 20th, I'm hopeful everything is ok as I think they would've been in touch by now if there was a problem. But I'll still be incredibly stressed, the fear never goes away. 

Take care,

Amanda 

Hi Amanda,

So nice to hear from you. My daughter started her treatment yesterday with chemo which is Paclitaxel & Carboplatin, followed by radiotherapy, a really long day for her & hubby, but as they say “needs must”. Tuesday - Friday will be a quick visit for radiotherapy only and this whole process is repeated for five weeks. When this finishes she has to wait two weeks before having a scan. Fingers and toes crossed  the tumour is smaller, or even better, disappeared altogether. Wishful thinking maybe, but there is always hope.

She has a very positive attitude and is determined to beat the big C. At the moment she is anaemic as her haemoglobin and ferritin levels are low but has been prescribed iron tablets to counteract this. Surprisingly, she can still eat (mainly ice cream) and still drink.

Our very best wishes to for your appointment on June 20th. Fingers and toes crossed for you too and I look forward to hearing from you again

.Kind regards

Glenis