Squamous Cell cancer lower oesophagus - anyone else?

Hi A.Walker. I have read that some people are offered the Chemo+Radiotherapy route for SCC without surgery, but for me the MDT went straight to the route that I followed. Have you looked at the Oesophageal Patient Association website? I also found this very useful. If there is anything I can help you with, please do not hesitate to contact me. With best wishes, Julie. 

I didn't have acid reflux before diagnosis but I've got it now and my oncologist says I'll probably be on Lansoprazole for life (so I take a multivitamin which includes b12 because there is osteoporosis in our family and use a magnesium oil spray on my feet to stop toe cramps). My symptoms before diagnosis started about 18 months before, being able to feel my food going down (that went away for 6 months then came back) then struggling to swallow certain foods, awful burps, pain in upper back (I had no idea at the time that this was related). This was during covid so I struggled to even get a phone call appt with GP - eventually did, explained and asked for Gastroscopy. That was booked for 2 weeks later but things got much worse before then and I couldn't even swallow water so ended up at the local walk in centre then a&e on a drip in early March 2021. In hospital for 18 days, moved from one ward to another as there was no room - in was in 5 different wards during that time, just wherever there was a bed. It was a terrible time to be in hospital, no visitors allowed, staff pushed to the limit. The gastroscopy found a tumour blocking my oesophagus. Had nasal feeding tube put in and pump fed for a couple of days. Then a stomach feeding tube put in and taught to syringe feed Fortisip. I was very weak and so tired from no sleep in the hospital. Was very glad to get home. Struggled with feeding tube when got home, Fortisip didn't like me, especially banana flavour! Chronic diarrhea. Ended up on neutral flavour and I could tolerate that. 

Oncologist said that standard procedure would've been chemo, op, chemo, but they were struggling to do operations because of covid so they said as mine was squamous they'd do radical chemoradiation and offered me the SCOPE 2 trial. Decided to go for it. But then wasn't chosen for the higher dose radiotherapy. 

That sounds an awful time for you. My daughter (aged 32) had breast cancer treatment during lockdown. I used to drive her to hospital for her chemo, but I couldn’t go inside with her. Dropping her off was heartbreaking. Yo must have felt terribly alone. I’m glad you’re through to the other side. 

It was awful, as it was for many people at that time. But we got through it and I'm grateful that I'm doing ok. 

Hi Mel,

How are you? I've been thinking about you, how were your results? 

Amanda

Hi Amanda 

Oh thank you for thinking of me.  That's so kind 

I got a call the day before my results were due (Wednesday) to say they weren't in. So now I'm waiting until this Thursday when hopefully they'll be in. If not, it'll be the Thursday after.  Strange that when I was in hospital the consultant got the results on the same day

I'll update you when I hear.  Thank you

Mel 

Amanda

Have you finished your radiotherapy?  I see you were having chemo-radiation and wondered how this is gping?  

I had been reading up on the Scope 2 trial and incase they'd put me on it but as I'd had radiotherapy at 22 for Hodgkins disease I guess thus is why they didn't do it.  Chemo-radiation is supposed to be the gold standard foe SCC and chemo-surgery-chemo is more for Adrenacarcinoma from what I've read.  So I believe you're on the right path.  Where are you at in treatment? I'm assuming tail end of radiotherapy (which I found particularly hard but got through it.)

Good luck

Mel

Hi Mel

That's very frustrating for you. I hope you get the results soon. The waiting is very difficult. At least when you get the results you know what you're dealing with. 

Amanda 

Hi Mel

I had my treatment in 2021, I'm 2 years clear. It was hard, I was weak and exhausted but I got through it ok and it's worked for me (so far). I have tests every 6 months now. I had my CT scan in Dec but am still waiting for an appt for the gastroscopy with dye - it's the dye part that's causing the issue as they're telling me there is only one doctor who can do it and his booking list isn't open. I'm due to see my consultant on Jan 30 to discuss the results but previously I've been told that biopsy results take 2 weeks so at the rate I'm going I'll have to postpone the appt to see the consultant - it's just frustrating as I set my mind on it. As with yourself, the waiting is stressful. 

We'll get there in the end!

Amanda 

Hi, 

How are you doing? Hope you're getting lots of rest and your swallowing is improving.

Amanda