Squamous Cell cancer lower oesophagus - anyone else?

Hi Amanda

Thank you for your reply, this is all very new for me and I wasn’t even sure I should join a forum but everyone seems so supportive I’m pleased I did!

I am due to have 5 weeks of radiotherapy everyday and at the same time, 1 day a week to have 2 different chemotherapies! After that, fingers crossed, I will be considered for surgery - all very daunting but I’m sure once the treatment starts I will get the hang of it.

I am getting very close to having to have a nasal feeding tube which is freaking me out a bit.

Thank you

Hazel (Braeside)

Hi Hazel

I didn't have the operation, just the chemo and radiotherapy. Lots of other people on here had the operation so there's lots of useful information for when you reach that point. 

My tumour blocked my oesophagus completely and I couldn't even swallow my own saliva so I ended up going to the walk in centre then was sent to A&E (this was at the height of covid) and staying in for a couple of weeks. I was on a drip for 4 days then had the nasal feeding tube fitted. I'll be honest, it's not pleasant initially but you do get used to it. I was pump fed for a few days then had the stomach feeding tube fitted (my Macmillan nurse said it feels like being kicked in the stomach by a horse and she was right, it was very painful to begin with). After I'd been shown how to syringe Fortisip, water and medication through that, I came home. 

The hospital staff were all lovely, even though the hospital was at it's limit during covid.

I found it very overwhelming at the beginning and I had a bit of a wobble, just the enormity of it all, plus I was very weak by this time. But you do get into the swing of it, a new routine. I bought a separate calendar and ticked the days off which I found helped. 

I was 53 and otherwise fit, a non smoker, didn't drink much at all. It was a huge shock. 

You'll get through this. We're all here to support you. 

Take care,

Amanda 

Hi Braeside. Just sending you my best wishes for your forthcoming treatment. Fingers crossed you will have few symptoms and get through the treatment well. I was diagnosed last May and started treatment of Chemotherapy in June, plus Radiotherapy at week six. I found it almost became routine, even the 25 daily sessions of Radiotherapy. It does pass by and you soon become familiar with the staff and the procedure. It’s a case of getting through it and feeling that you’re fighting back. Thinking of you, Julie

Hi Julie

Thank you for your reply and support,

I know it’s going to be a hard few weeks but weirdly I am looking forward to getting the treatment started!

I’ll keep you posted.

i hope you are doing well

Many thanks

Hazel (Braeside)

Hi Hazel. I understand what you mean. I felt more positive and in control once the treatment had begun. I had an  Oesophagotomy 31st October last year, so I’m now four and a months on and doing really well; just got back from Bologna and looking forward to more holidays. My blog details my story. Best wishes and keep in touch. Julie x

Hi Braeside, welcome to the club! Hope all goes well with your treatment. I finished my chemo and radiotherapy just before Xmas, and was very weak and lost my swallowing completely. But now I am feeling much better and going to the gym, going for regular walks, and enjoying food again. You start with the advantage of being fit and healthy, and I know you will get through it. Keep in touch and let us know how you are progressing. Best wishes. 

Hi Julie, Thank you, that really gives me hope. We should have gone on a cruise to the Caribbean at Christmas but had to cancel because of all this so to know that you have just been away is fantastic. Hope you had a good time and your planning your next trip! Hazel x

Just wondering how everyone is doing? I’ve had very good news, as the chemo and radiotherapy seem to have worked. Scans show no spread and biopsies are clear. Just need some further endoscopies to dilate up my oesophagus and improve my swallowing. 

Hi there

I noticed from your profile that you were offered the operation after your chemotherapy but decided to decline. I've yet to start my chemo but am already worried about the operation. What was it that made you take the decision to not have it?

Wishing you all the very best

Anthony 

Hi Bob.

Probably better explain that I’m a retired doctor. The first specialist I saw was the surgeon who offered me the surgery. He hinted that there had been a heated debate at the MPT meeting (the multi-professional team that meets to discuss cancer cases) - so I knew the offer was a little controversial. He also told me I would need chemo first, then surgery, then more chemo and radiotherapy. When I saw the oncologist prior to chemo, I asked about treatment options and she said that for my type of oesophageal cancer (squamous cell) the main treatment was radiotherapy with chemo to help it along. There was no evidence that surgery would improve my survival chances, but there was no evidence it wouldn’t either - because there was just no real evidence one way or the other -  so it was up to me. Meanwhile, I’d read about the risks and complications of surgery (in a paper written for anaesthetists responsible for aftercare on ITU wards - so with a heavy emphasis on risks!). The surgery sounded horrendous and I trusted the oncologist, so I went with her plan of 12 weeks chemo with the last 5 including radiotherapy. 

If you have adenocarcinoma, I understand the best treatment is chemo + radio + surgery. That’s why I started this thread, because squamous cell cancer is different from the commoner adenocarcinoma of oesophagus. 

By the way, this isn’t intended as medical advice. You need to ask questions and trust your specialists to offer you the best treatment for your particular circumstances.

Whatever you decide, my very best wishes for your treatment. It’s a tough road but you are not alone.