Diagnosed in June 2021

Hi

53 year old female, diagnosed with endocarcinoma of the oesophagus in June 2021. Radiological staged at T2N0M0. tumour believed to be only about 2 cm.

Major surgery was ruled out because of pre existing health conditions - and I agree that it wasn’t a route I was prepared to risk.

I was lucky to be included in a trial study and a sub mucosal dissection was attempted at the end of July. Tumour turned out to be 7cm and it was also discovered to be deeply invasive and re classified to T3. Unfortunately because of the deep invasion the tumour couldn’t be fully removed. 

Next step was chemo radiation which I started 5 weeks ago - I had my last of 25 radiotherapy sessions today and just have 1 week left of chemotherapy. (2 cycles - originally told I would have 4 cycles but concerns of chemo toxicity reduced that to 2 - but no one told me until I asked about the 3rd cycle!)

it has been a really up and down time. First I was told it was really small and curable. Then I was told it was bigger and not curable. Then I have been told now they are hoping for a cure. I almost feel as though I am the last to know anything and I don’t have the strength to fight for information.

I have found the radiotherapy unexpectedly hard. I had issues with swallowing eve before any treatment and it was even harder after the dissection - especially as I then had a major bleed 2 weeks after the surgery requiring blood transfusions and a rough 2 weeks in  hospital afterwards.

Swallowing even water now is really hard.

I find I can suck things like jelly until they dissolve in my mouth but that’s the absolute limit. Meal replacement drinks make me sick. I have lost 25% of my body weight now.

Trying to get even adequate  nutrition is causing me so much upset and distress. I am trying everything the dietician has suggested but I still can’t do it. A fotijuice (I can’t tolerate the milk based ones) takes me a whole day to sip. My blood tests show my body is just about coping with the lack of nutrition, other than low blood sugars (hence the fortijuice).
Now my radiotherapy has finished I move back to my local hospital dietician. She was pushing for a feeding tube even before I started radiotherapy, but the cancer centre didn’t want to go down this route.

I take antacid and oxetacaine, along with oramorph to drink and take my tablets. My other oral pain meds have also been increased - including morphine sulphate slow release and trauma doll slow release but the pain is really quite unreal as I am sure all of you understand.

I’ve been told my symptoms from the radiotherapy  will get worse for up to 2 weeks before they gradually start to subside - but I’m not sure I can cope.