Squamous cell Stage 3, Inoperable currently.

Thanks for the explanation David it seems your experience hasn't been great at the start but is getting much better now! My tumour was just under 5cm with a couple of affected local lymph nodes and I was told it was Stage 3 so that's why I was a bit perplexed by your original diagnosis 

Best Wishes 

Anthony 

Hi there, I was 67 when I was diagnosed with squamous cell carcinoma of the lower oesophagus. T3/4 N1 M0 in July 2023.

At first I was offered surgery and I felt relieved at the prospect the cancer could be cut out. But i needed chemo first, and when I saw the oncologist to discuss the chemo, she said the main treatment for squamous cell carcinoma of the oesophagus is radiotherapy, with chemo as a helper. There is no evidence that surgery increases chances of survival, but no evidence that it doesn’t. They just don’t know. 

I decided not to have the operation, but had 11 weeks of chemo and 5 weeks of radiotherapy.

Afterwards, a CT scan showed no further spread and an oesophageal biopsy showed no residual tumour. I was told they wouldn’t do regular scans but I must just let them know if I had any problems. I only have a 3 monthly check-up phone call with a specialist nurse.

Because I was still having some swallowing problems, I had two balloon dilations of my oesophagus last spring/summer, and I can now eat normally. I can’t eat spicy food or anything too hot. Cold drinks and fizzy drinks also upset me. Water is actually harder to swallow than food - not sure why!

Then, I got a nasty cough end of last summer, and so I had another CT scan in August (2024) and that was fine. The cough got better slowly, and I am currently well, although I still get tired easily and am not as active as I used to be. 

So, to give your dad hope, you can tell him I only had radiotherapy and chemo, and I’m still here nearly 2 years on. Hope all goes well with your dad and best wishes to your family.

Ruth

Ruth just seeing this now. Thank you SO much for this, it’s been so encouraging to read. I will be seeing my dad today and letting him know. He had his first infusion of folfox and opdivo immunotherapy on Tuesday, so far he’s pretty tired with little bits of nausea. He did notice that when he takes a drink of water, as soon as it goes down it results in an explosive cough as a reaction to it, which is weird and new. I’m sssuking maybe it’s because it’s a cooler temperature? But it’s left him scared to have nothing by mouth (luckily we use the j tube but we’re hoping he’d continue with some soups etc) 

Hi ,I too like your dad was diagnosed with stage 3/4 squamous cell oesophageal cancer in July 2022. My initial symptoms were not taken seriously and the fact that I was having trouble swallowing I was even prescribed ant depressants ! I kept on to my doctor until eventually she ordered an endoscopy which by this time the tumour was nearly blocking my oesophagus .After scans I was given the life changing and totally devastating news without treatment my life expectancy was 6 months.I had a peg fitted as by then I couldn’t eat solid food and struggled to sip ensures.My oncologist put me on radical chemotherapy which I can say was so tough ,I had no energy ,felt so unwell and basically could see no light at the end of the tunnel, I thought this was the end.After treatment stopped I even started to feel worse which I was told was normal.I relied on my peg totally to keep me alive as the radiation had scared my oesophagus .My first endoscope was not successful as he couldn’t pass the scope to get a biopsy so then my only hope was a guided dilation under X-ray  I thought I wound never be able to swallow again.Through the amazing skill of the doctor she managed to enlarge from 2mm to 5mm, she continued every month slowly , I was beginning to swallow liquid again.I had another biopsy taken and he couldn’t see any sign of the tumour. Wow,  scan also showed no tumour. I now have scans every 6 months and I’m just waiting for the recent one ,an anxious time. It has has been 2 1/2 nearly 3 years since my diagnosis which looked very very bad due to its size ,position and being inoperable ,I just want to give you hope that things aren’t always what they seem, please stay strong ,I was expected to be here but I am ! 

Hi there! Thank you so much for taking the time to share this! I'm shocked you are almost 3 years after diagnosis, this is what I needed to hear today. 

After chemo and radiation, my Dad was similar to you unable to eat. He did have some residual tumor unfortunately and that is why we are now on a new chemo regimen alongside immunotherapy which they believe is great for my Dad considering his high PDL1 score. hoping this then melts the remainder of the cancer away and keep it localised.

My wedding is end of May and they have him scheduled for a dilation then on May 15th which I'm hoping will allow him to eat more – they said he'd have 3 doses of the chemo/immuno then and may notice an improvement from that alone so he may not need the dilation but we have it just incase.

Praying for continual good news for you, are you back to eating normal now without the tube? Are you on any chemo or immuno or just surveillance scans?

Again thank you for giving me this hope!

Hi Aisdono,

Sorry I have no words of wisdom for your dad, , I only found out about myself on the 4th February, I’ve had 4wks of Radiotherapy and still feel quite rubbish, but I am very impressed with all the information that you have obtained. I was basically just told oh no it’s not dysplasia it’s a 4cm tumour, options are, a) do nothing and you’ve got 6-9 mths, b) 1wk radiotherapy maybe 18mths or 4wks maybe 3-5yrs and that was it, I’m getting a ct scan in 4wks, trying to get to see a consultant has just been a joke. I hope to see one after the scan and your post has at least given me an idea of what to ask so thanks for that. I live on my own, and don’t really have any close friends or family so I’m having to think of things for myself and when you feel a bit rough it’s hard to focus. Anyway lots of blessings to you all and hope you find something positive soon. Have a lovely wedding I’m sure it will be a special day xx

Oh wow Shortbread,

that’s great news, I wasn’t offered Chemo, just 4wks radical radiotherapy, which was also quite grim, but I can now as least swallow a little better, but you’ve just added another question to my list for the consultant when I eventually get to see one ( who knows) do you get regular scans/endoscopy’s?

Aw Tracy I'm sorry you're going through this. Glad my post can help. I am a nurse myself and if you need any help navigating this or knowing what to ask please please feel free to reach out to me or message me, i'm happy to help! xxx

I have had notification of a reply to this post. It was giving very dangerous misinformation. I am aware that the moderators of the site are looking at it but posting this in case anyone has read it without realising it is under review.