Oesophageal cancer - end of life care/progression

Dear MikeHa

I am very sorry to hear this about your family member and send every best wish that they are as comfortable as possible.

i don’t have any answers to your questions but i have the same or similar questions to yourself so shall follow your post with interest.

In my case, I have been “lucky” enough to have had mild symptoms prior to diagnosis June 2024 and since definitive chemoradiotherapy had an 18 month period where I have been asymptomatic. There was a small amount of residual malignancy in my oesophagus. No evidence of spread although with this disease micrometastisis is assumed and I have been under surveillance for either local or systemic progression. 

As anticipated. I am now beginning to experience symptoms that may be indicative of disease progression.  Swallowing is starting to become troublesome, I have acid reflux at night and cough up mucus/saliva.

Other than this, like your relative, I am active and feel well.  Weight stable. 

The MD team have organised a CT scan and a swallow test for me. Then I suppose we will discuss treatment options.

I note your relative has not had treatment. Was this declined by them or the MDT. For I anticipate having to make the same quality of life vs quantity of life decisions. 

Like your family I have no idea what to expect when it comes to next steps and estimation of life expectancy as the disease becomes very advanced and I have not seen any postings on here from patients or their families who have declined  treatment.

Regards 

Thank you for replying and sharing, best of luck with your next CT and tests.

Our relative chose not to have treatment due to age, impact of treatment and prognosis following it, in effect, it was considered to be so invasive with little upside and they preferred to have a gentler time.

Sound very similar to my thinking. 
I know the moment I start the chemo option that I can tolerate I will have unpleasant side effects including losing my hair that’s a certainty. But - my chemo option has a very slim chance of effecting anything beneficial and even if it does these effects will be short lived.  Plus I don’t want to spend precious time travelling to and spending time in hospital receiving treatment on this basis. I have never felt so ill-informed to make a decision. I’m not blaming my care team for this. This disease is so unpredictable no one has the answers. 

Hello, 

My Dad died in Dec 25, he did have treatment which was eventually stopped and in May 25 he was given about a year to live. 

I'm not sure exactly what you're asking for but if you think it would be useful to ask me questions I'm happy to answer them as best I can. 

Thanks for your reply and sorry for your loss. 

I think we’re all just trying to understand what the progression looks like but rapidly realising there is no normal route or timeline 

Ultimately for my Dad his cause of death was a ruptured gallbladder which the cancer caused. From that point of diagnosis it was 2 weeks until he died. As the cancer had spread to his spinal cord we think it had possibly also spread to his brain as he was increasingly not making sense which was very distressing for us and for him. 

He also appeared to gain weight but this was false as he was gaining fluid. 

He was increasingly tired and slept more, and had less of a desire to eat. 

Fortunately we have a local hospice and he was able to die at home as he wished and they provided excellent care for him and for us. 

There is no normal route or timeline, I suggest all you can do is ask the healthcare professionals you're engaged with and ask for their opinions and advice with regards to changes or new symptoms. 

Thinking of you at this difficult time, it's so very hard on all people involved. 

Hi Mikeha.

I am sorry you have to go through this with your family member and prognosis is difficult to hear. I was actually given just 6 months, 8 months ago when I was considered too high risk for further treatment. Prognosis is their best guess based on experience so I find it best not to focus on that aspect as everyone is different.

I am actually doing really well apart from regular chest infections. I can still eat most foods but tend to stick to a softer diet.

I frequently tell my family that my team is there to support them too and will happily answer any questions they may have. Have you tried speaking to any of the nurses caring for your relative? I am sure they will answer any questions you may have.

Sharon 

Hello Sharon, thanks for sharing your experience and great to hear you’re outrunning your prognosis, I hope you keep well as long as you can. 

It’s good advice about the team supporting others, I’ll try that. It’s hard though as the patient is both deeply private and seeking to be protective of us all. 

Take care