Squamous cell Stage 3, Inoperable currently.

Hi

Welcome to the forum, it's good that you've reached out. A lot of people on here have adenocarcinoma and have had chemo-operation-chemo, but there are a few of us who have squamous cell carcinoma. Some had chemo & radiotherapy then the operation, some had just chemo & radiotherapy.

I didn't have immunotherapy or dilation so I'm afraid I can't offer any advice about those, but there are other people on here who have got on really well with immunotherapy. 

I was 53 when I was diagnosed with squamous cell carcinoma, mid oesophagus, T2N0M0, in March 2021, peak covid times. The tumour blocked my oesophagus completely, I ended up in hospital on a drip then had a stomach feeding tube fitted, through which I syringed 6 Fortisip and all water, medicines etc every day. I didn't have a pump running overnight like some other people. Standard treatment plan would've been chemo and radiotherapy then operation but at the MDT meeting it was decided that due to the covid pressures on the hospital, they wouldn't be able to guarantee to be able to do the operation within their desired time limit after the chemo & radio. Instead they said they'd give me high strength chemoradiation which would give me an 18 month window to have the operation. I had 4 cycles of cisplatin by iv, and also capecitabine tablets twice a day for 12 weeks (dissolved and syringed through feeding tube). Plus 25 radiotherapy which started on the same day as the 3rd cisplatin. I'm on the (now closed) SCOPE2 trial which was testing different combinations of chemo, and also whether having a higher dose of radiotherapy was beneficial. It was a randomised trial and I wasn't chosen to have the high dose of radiotherapy. 

I had mixed feelings about all of this. If it wasn't for covid I would've had the operation, would I be ok just having chemotherapy and radiotherapy? On the other hand I was relieved to not have the operation. In the end I had to trust the oncologist and I knew I could have the operation within 18 months if needed. 

I became very weak before treatment started, and I suffered a few side effects from the chemo & radiotherapy. However the treatment worked really well for me, my tumour shrank after the first chemo and I was able to start nibbling cheesy biscuits that crumble easily (it was lovely to taste anything after weeks of nil by mouth). 

Four years on my oesophagus is scarred from the radiotherapy so it is narrower and less stretchy than before. I have to eat slowly and chew everything very well. I didn't have acid reflux before treatment but I do now, so I stick to a bland diet, nothing spicy or fatty, no fizzy drinks, no alcohol. I take Lansoprazole once a day. 

After treatment finished I had an endoscopy plus alternating CT scan/PET scan every 3 months, then it was every 6 months endoscopy/CT scan (no more PET scans). I've just had my latest endoscopy and CT scan. The endoscopy scan looked all clear, random biopsies were taken as usual. I am seeing my consultant on April 17 to discuss the results. Fingers crossed it'll all be ok. 

I realise I'm very lucky that chemotherapy and radiotherapy worked so well for me. I hope my story gives your dad some encouragement. 

Congratulations on your upcoming wedding! It's lovely to have something happy to look forward to. 

Take care,

Amanda x

Hi

Back in Feb 24 I was diagnosed with inoperable stage 4 oesophageal cancer. The 6cm tumour was at the junction with the stomach and the prognosis from the Oncologist was very bleak. By a stroke of good fortune I managed to get on a clinical trial at UCLH where the condition has completely turned around. I’m on a combination of Chemo (FOLFOX) and Immunotherapy (Nivo.) I have a scan every 6 weeks and, for the last 4 scans the tumour has shrunk to the extent that shows ‘Complete Response’ to treatment. I have experienced some side effects - mainly neuropathy but really nothing serious. Loss of appetite too - but that seems to be improving now that some elements of the chemo have been eliminated. Overall I’m feeling good and easily coping with everyday activities- - gardening, dog walking etc I’m a reasonably fit 78. So keep positive - the combo of immuno/ chemo has certainly worked so far for me. Fingers crossed they’ll work for your dad too! Hope he gets to sink a Guinness at your wedding!

Good luck

David

Dear Aisdono

Although you have asked to hear from those specifically with squamous cell carcinoma ( and I understand the reasons for that).  Apart from the histopathology my situation is fairly similar to your father’s T3N0M0, inoperable with residual malignancy following a course of chemoradiotherapy. 
My team are now focussing on local control. I am receiving brachytherapy the aim of which is not to cure but delay the need for a stent. Do you know if this treatment has been considered by your father’s team to improve his swallowing? . I don’t know enough about it to know if it can be combined with systemic therapy or after proton therapy. But it might be worth asking? 
I hope you all enjoy the wedding and make some happy memories x 

You are one of the “miracles” I am assured exist. A very uplifting account.  Would you share your tumour type please is it squamous or adeno carcinoma? 

Thanks so much Amanda

Hi Rosiee, Thank you for this reply! I am not sure if Brachytherapy is an option- although I will definitely bring this up. His oncologist said he's not a massive fan of stents so this oculd be a good option. They did do a balloon dilation and said this is an option that can be done frequently too. 

What therapy did you have to maintain local control?

Hi, brachytherapy is the therapy for local control (the intent is to delay intraluminal growth). 

Hi David,

Wow – the same treatment my Dad will be starting next Tuesday. That's amazing, I'll be showing my Dad your response. I'd love to send you a private message if possible. 

We had our meeting yesterday with the team to review FOLFOX/opdivo side effects and my dad was worried he'll feel miserable. However they said it's tolerable and some people work full time on this regimen. They seemed to highlight neuropathy, diarrhea, nausea and fatigue as the big ones, which they gave us medications to manage if need be.

Again, hoping we can time his third dose in May to where he gets disconnected from the home pump and then gets a 2 week break for the wedding end of May, before he gets his 4th dose.

They plan to do 4 doses, then a scan in June to evaluate.

Was this your initial treatment from diagnosis or did you do another chemo before this?

So appreciate hearing from you, it's so helpful to connect with those who were on the same treatment and had success!

xx

Hi David and welcome to the forum. I just wanted to ask why you were graded at stage 4 if the tumour was only 6cm?

Hi Bob

Really I have no idea. I was entirely new to the whole experience back then - that’s simply the info I was given. I don’t want to badmouth the hospital but the experience was not good. Before I could even sit down at our first (and only) meeting the Oncologist advised ‘ You do realise this is palliative don’t you?’ When I realised I was eligible for a trial I jumped at it and the care at UCLH has been exemplary. 
Prior to that I had received no treatment so the chemo/ immuno combination was my first introduction. I have that every 2 weeks and come home with a pump. After about 15 sessions the chemo components were modified to drop the Oxaliplatin which I believe was responsible for the relatively mild side effects including neuropathy which I currently still experience. As far as I’m aware although the last 4 scans showed complete response the little demons may still be lurking somewhere. Hence the continuation of the chemo/ immuno mix. My tumour is not squamous but hope the account of the treatment is helpful.

All the best

David