Squamous Cell cancer lower oesophagus - anyone else?

 I had the same treatment starting in April for squamous cell OC but the radiation dose was higher as part of a trial. The last 6 months have been awful with fatigue, reflux, and the inability to eat more than a very soft diet. Things are beginning to improve slightly but it's a really slow process. The main thing is  my scan and endoscopy were clear, apart from patches of gastritis.

Hi, I'm 56, female. I was diagnosed with squamous cell, mid oesophagus, T2N0M0, in March 2021. I was otherwise fit and healthy, never smoked, rarely drank alcohol. The tumour blocked my oesophagus completely so I had a feeding tube in my stomach. I had chemotherapy and radiotherapy at the same time. I am part of the SCOPE 2 trial but didn't get chosen for the higher dose of radiotherapy. I had my two year all-clear in August. I've just had a CT scan and am waiting for a gastroscopy (with dye), due to see my oncologist at the end of January. My gastroscopy test results usually show scarring and areas of dysplasia but my oncologist says that is all normal and she is happy with everything. 

I was exhausted after the treatment. Slowly built myself up over the following year, walking a bit further every week. Today I'm not as fit as I used to be but I'm doing OK. I have to take small bites of food and chew everything thoroughly. I stick to plain foods, nothing rich, spicy or fatty, as that gives me awful acid reflux (still on Lansoprazole). And no fizzy drinks. But I do like chocolate!

My hair became a lot thinner during treatment but has grown back thicker and curlier which I am embracing!

Glad to hear you are beginning to improve, and really good news about your scan. Funny thing is that I felt really well before my diagnosis, with my only symptoms being a bit of extra tiredness (which I put down to age!) and some difficulty swelling chunky meat. Since then, with invasive investigations and treatment, I have felt truly awful! Anyway, hoping to feel better soon. Guess I need to be more patient.

That’s good to hear. I’m a non-smoker too (apart from smoking a couple a day when I was in the 6th form). I do drink, and like my whisky, but only in moderation. I’ve only had very occasional bouts of acid reflux - maybe two or three times in my life. It was such a shock to discover I had this particular cancer. I have a PEG tube in my stomach and can’t eat anything at the moment and can only swallow the tiniest sips of water. I miss food so much! Thank you for sharing your story and great news about your two years all clear. It gives me hope for the future. 

Thanks. People keep telling me to be patient, but it's hard isn't it?! Someone on this site said it took her about 18 months to get back to some sort of normality, so I guess there's a way to go yet! Like you,  I felt fine before diagnosis  - just hiccups when eating, and difficulty with meat and bread.

Hi

I'm a 53 year old female.  I've got Squamous cell carcinoma of the upper oesophagus. T4/N0/M0. I had chemotherapy (X4) with radiotherapy (×25) but not the trails everyone is talking about.  I've got no surgery planned due to the location and size of my tumour. I wonder if this is the reason I wasn't put on the trial.

Unfortunately, none of this worked well enough so I'm now on palliative immunotherapy.  Got a CT scan on 4th Jan and results 11th Jan to see if it's worked or not.

I didn't have any symptoms until food started getting stuck in my throat.   The cause was radiotherapy from 30 years ago when I had Hodgkins disease. So the treatment that saved me then has caused this current fight.  You'd think the hospital might have warned, checked, assessed me for this.  Hey ho.  

Take care

Mel

I'm sorry that the chemo & radiotherapy didn't work for you. I hope your test results show that the immunotherapy has worked. Please keep in touch. 

Hi there. Sorry to hear of your diagnosis. I used this site a lot, daily for the first few months after diagnosis, and found comfort in reading the stories of other people who were fighting this disease. I chose to tell very few people and this site gave me the connection with people who were in a similar situation to myself. I was diagnosed with SCC May 2023. Non smoker for 35 years, but did like a glass of wine. I was 63 when diagnosed and had no symptoms at all other than trouble swallowing, which would come and go. The tumour was quite high up and was identified as Stage 3N0M0. I too had 11 weeks of chemotherapy (4 infusions of Cisplatin and twice daily Carboplatin tablets). I also started Radiotherapy at week six and had daily doses for 25 days. I found that the Chemotherapy suited me quite well other than feeling tired and lethargic but I would nap in the day to help combat the tiredness. I managed to gain weight (told I should try to as I was quite low to begin with - my natural weight). I found that when I began Chemotherapy, after about three weeks I couldn’t feel any blockage, but once I began Radiotherapy, the irritation came back and towards the very end of treatment eating was difficult. This lasted for about two weeks after finishing the Radiotherapy then gradually improved. I had a three way operation 10 weeks after finishing Radiotherapy (open surgery through my neck, abdomen and right shoulder blade round to the rib area). I am now almost nine weeks on from the Operation.

I hope you find this of use. I’m going to put in all the details into a blog soon, in the hope that it gives others some comfort and the realisation that you are stronger than you know. Please use all the help you can get; I found all the medical professionals wonderful and caring. Sending you love, Julie 

Hi Julieanne, sounds as if we had the same chemo and radio therapy regime (mine was at The Christie). I was offered surgery too, by a surgeon, but was told this had caused controversy among the MDT and if I chose surgery I had to have the surgery before radiotherapy. When I saw the oncologist a few weeks later, I discovered that radiotherapy was THE treatment for SCC, so I chose to go ahead with the chemo+radio combo. I thought that meant surgery was no longer an option, so it’s interesting that you have actually had surgery following your radiotherapy.

Thank you for sharing your story. It’s comforting to know that others have gone through it, and gives me greater optimism for the future. Wishing you all the best.