Squamous Cell cancer lower oesophagus - anyone else?

This is great news! Excellent. What a relief for you. 

I'm ok, had a gastroscopy with dye last week which showed no signs of cancer. I've got a CT scan on May 20th. Both those tests not really due till July as I'm seeing my consultant on Aug 12 for my 3 year check up but all appointments have gone out of sync. My swallowing mostly ok as long as I take small bites and chew thoroughly. As my tumour was mid-oesophagus, the radiotherapy went through my lungs (oncologist said it had to go through either heart or lungs and lungs was preferable. Luckily my lung test prior to treatment was very good) and it has affected my breathing at times - whilst walking up steep hills with friends and talking at the same time it is noticeable. But otherwise ok. 

Amanda

Hi there,

I found your post very interesting regarding your treatment.

My daughter aged 50 has been diagnosed with stage 3 squamous cell oesophageal cancer. It is at the junction to the stomach (GOJ) and 8cm.

After all the scans, laparoscopy and tests etc., I went with her to see the first consultant who said her treatment would be chemo + radiation and no operation as he stressed that the operation is absolutely brutal and her life would never be the same again. We were so relieved with this option. This meeting was on a Wednesday

However, she had a phone call a week later from the hospital after the MPT meeting on the Friday after, to say that there was only one option, which was radiation, chemo and an operation. Obviously we were in complete shock and we made another appointment to see another consultant to find out why the treatment had suddenly changed as this is the usual treatment for adenocarcinoma as this is the only option.

We saw another consultant and he said they had decided at the MPT that this was the best treatment because of the stomach involvement. The cancer is on the lesser curve with a small tail just entering the stomach. This was all based on images taken two months ago.

So my daughter signed the papers to go ahead with treatment on June 3 but in the meantime had a zoom call from a consultant at a well known London hospital. The consultant stated that both options were viable but her preferred approach would be the first option as she did not think my daughter would cope with going straight into radiotherapy. Her weight loss has been rapid, going from 10st to 7st 12oz, although she can still eat sloppy foods. She also stressed that my daughter should start treatment, which ever one she chose, as soon as possible. 

After this, she requested another appointment with a consultant, who told her there was no other option than the operation as there was 30-50% cancer in her stomach and that the tumour was 11cm long. He was very surprised that she could still eat, which raises the question, is it as bad as he says?

My daughter is speaking to the second opinion consultant on Monday to ask more questions as she also stated that the tumour was 8cm and did not say anything about a significant amount of cancer in the stomach.

We wanted to transfer treatment to this London hospital but she said that they would have to start all over again with tests and scans as the present ones are two months old.

All of these opinions are from the same scans and we feel that something is just not right, the thought has crossed our minds that she is being used as a Guinea pig. This cancer is very rare and usually in the upper or middle of the oesophagus.

My daughter starts treatment on Monday 10 June with a great deal of apprehension.

Hi,

Did you have GOJ squamous cell cancer? My was refused this treatment.

Well you've been through the wringer on this haven't you? Which is just what you DON'T need at a time like this. Can I clarify, the tumour is at the junction with the stomach? This would suggest that it's andenocarcinoma and not squamous cell. It's definitely not rare as this is where acid reflux/bile enters from the stomach.

I'm stage 2/3 having a 5cm mass at this junction too. I'm having 4 rounds of FLOT therapy and the plan is then to operate with a further 4 rounds of FLOT afterwards.

I have to agree that on researching the operation, even though I'm booked for the minimally invasive, keyhole type robotic surgery it would appear that the repercussions are massively life changing and am going to have the same discussion with my MDT after my first rounds of chemotherapy are finished and I have the results of the following scans.

Wishing your daughter all the very best on her journey to beat this evil disease

Hi Stephanie69

Thank you for joining the group. As you said yourself, it is rare to have squamous cell carcinoma down near the stomach, and perhaps this is what is causing the conflict in opinions for treatment. 

I was diagnosed in March 2021 during the height of covid. At the time they told me that due to hospital constraints and as mine was mid oesophagus SCC T2N0M0, ust chemoradiation would be the treatment plan. They said if it hadn't been for covid, the standard treatment plan would've been chemoradiation then operation. So whilst it's common to just have chemoradiation for SCC, sometimes they do say operation too. 

It is very frustrating to be given two different reports from the same test results. I hope that your daughter gets some answers when she speaks to the consultant on Monday. 

You mention her rapid weight loss and that she can still eat sloppy foods - has she tried Fortisip/Ensure drinks to increase her calorie & nutrition intake? 

Julieanne60 (on this thread) had chemo, radio and then operation for her squamous cell carcinoma but it was higher up in her oesophagus.

Take care,

Amanda 

I am so sorry to hear about your daughter, and how difficult it must be for her to have such conflicting advice.

My squamous call carcinoma was at the gastro-oesophageal junction too and there was apparently a heated discussion at the MDT meeting. One surgeon wanted to do chemo first, then surgery, followed by radiotherapy and chemo. He won the argument and I saw him first. But when I saw the oncologist about starting the chemo, she made it clear that there was no evidence that surgery would improve my survival chances, but also no evidence it wouldn’t. There just wasn’t enough evidence one way or the other. In the meantime, I had read all about the operation and, when she said this, I felt intense relief and decided to not have the surgery.  

Everybody is different though, and I suspect your daughter has more stomach involvement than I did. It is so difficult though, with the pressure on to start treatment and such conflicting advice. 

Please keep in touch and let us know what happens. Very best wishes. 

Hi Stephanie69. I’m so sorry to hear of your daughter’s diagnosis. It is especially hard when you are given conflicting advice. I hope that you can get some clarity over the next few days and weeks as to the best treatment. My input into your post is to say that whilst the operation is a major one, in my opinion, it wasn’t as bad as I thought it might be. True, the operation is a long one but you are completely unaware and when you wake you are given so many different types of pain killers that the pain is bearable. The other thing that I found was that having a major operation, the intensive care and the specialist care was so kind and caring and attentive that I never felt worried. Just very well looked after. Obviously I do not know your daughter’s fitness levels, but she is relatively young and therefore hopefully has more stamina than an older person. How is her weight going? I added as many high calorie foods as I could (cream, full cream milk, butter, olive oil) to my diet, but appreciate people have different tolerance levels regarding food and this disease. I am in no way trying to sway your daughter’s decision, but I thought I would try to give some encouragement that the operation might not be as fearful as you imagine. 
Thinking of you and your daughter, and hoping that whichever treatment she decides to follow goes well. Best wishes, Julie

Hi Stephanie69

How did your daughter get on with the second opinion consultant? Did she manage to get some answers? I hope that she has managed to get a treatment plan that she's happy with. 

Take care,

Amanda 

Hi Amanda,

The second opinion consultant said that both treatments were viable and should be started as soon as possible. My daughter has completed her first week of five and decided to go along with the second treatment recommended. Monday is chemo, Paclitaxel & Carboplatin, for three & a half hours plus radiotherapy, then just radio from Tuesday-Friday. At the moment, apart from feeling a little sick in the mornings she feels relatively good & surprisingly she can still eat.

After the five weeks she has to wait two weeks before having a CT scan to see the results. Wouldn’t it be amazing if it has all gone?

Thank you for keeping in touch and hope that your next consultation is good news.

Wishing you all the best,

Glenis

Hi Glenis

I saw my consultant this morning, good news, 3 years all clear. Next gastroscopy and CT scan will be in 6 months so I can relax for a while.

How is your daughter getting on?

Best wishes

Amanda