Cancer back after Oesophagectomy

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My mum had an Oesophagectomy 2 years ago and since then it has been a difficult road but she has been relatively stable. Cancer free but she had a lot of difficulty with eating, weight loss, and generally feeling exhausted. She was very active with gardening etc prior to this so it has all been a huge adjustment and I think she has felt like her body is not the one she has known.

Anyway, she ended up back in the hospital for the past 2 months ish due to extensive gagging and difficulty breathing etc. That was all ‘dealt’ with so to speak with multiple scans done throughout which had all consistently been coming back clear. However, she had to return to hospital due to some persistent pain she was having in her lower left side.

We have spent the past week under the impression that it has been a kidney infection and so relatively easy treatment with some antibiotics to clear it. However, I have just been with her at the hospital as the doctor came and told herthat they have found cancer in her ‘kidney and lower spine’ and are looking at chemo and radiotherapy. 

I was very close to passing out in the hospital as it was an enormous shock especially when we had thought it was something so simple left bothering her and that she would soon be back on the road to feeling better. I also had the rather horrific task of telling my brother and dad when I came home.

Now I have absolutely no idea what is going to happen or what any of it means. Trying to resist googling as it can often trigger some spiralling for me. I feel selfish even writing about my feelings when she is going through this but she always puts on an incredibly brave face in the midst of it all. 

I pretty much went deaf after the first sentence from the Dr and cannot remember anything else at all what was said. There is a multi disciplinary meeting tomorrow which I’m sure will discuss treatment options etc but I cannot help fearing the absolute worst. 

I am very close to my Mum and in my 20’s and so I very much still feel like I ‘need’ her so really struggling to cope. I have had anticipatory grief and anxiety ever since she was diagnosed so can’t see myself handling this particularly well. 

Looking for some support, similar stories. I want to know there is hope but need to figure out how to cope if not. 

Not such a happy new year for me but I hope others looking for support are having a good night. 

  • Hi,

    It can come as a real shock when you receive the diagnosis and that often makes it hard to take in and remember the information you are given. That is only natural so don’t worry about contacting your medical team and asking them to tell you again. As you know from your previous experience with oesophageal cancer, it can take a while to get a treatment plan in place and this waiting period can be one of the hardest to get through. Your mum is clearly very lucky to have you in her corner to help and support her through whatever treatment plan she receives. Having practical things to do (like taking her to appointments, sorting medications, etc) will probably help you to cope but there are professionals and organisations which can offer support too. I wish you both well for whatever you have to go through… CB

  • Hearing the diagnosis is awful and then taking it in i do feel for you.My hubby has osophegal cancer too and cannott have surgery as he isn't fit enough,so its a hard road of chemo and radiotherapy for him.No i don't think you are selfish for saying how you feel,i was coping well until the last week or two.Thinking to much makes me tearful etc..his treatment starts on Jan.6th.Contact the specialist nurse for some support and possibly Macmillan in person.Take care of yourself  your Mum will need you.

  • What an awful end to 2024. I'm sorry your Mum is going to have to go through more cancer treatment. Others have said before to write down questions for the MDT meeting.

    This is a great forum to offload so it's good that you're here.

    Look after yourself while looking after your Mum x

  • Hi Violet,

    How are you holding up and how is your mum?  Have there been any updates on any treatment plans for your mum?  I hope they have give you some sort of hope.

    I want to let you know you are not alone and I am in a similar boat but with my dad.  I have the same trauma, feelings as you completly.  My dad had the ivor lewis and was clear for a year.

    Then a few months ago, he started to loose weight quite rapdily, lost 6kg, loss of apetite and some of the symptoms he previously had before started coming back such as feeling discomfort when eating.  They did an endoscopy, and CT which all came back and clear.  Then he got omitted to hospital due to a suspected infection/ pneumonia.  They found liquid in his chest which they took for testing which came back with the dreaded news that his cancer is back, it is advanced and it is no longer localised, the fluid showed squamous cancer cells of the ospheageal cancer which means that it is a recurrence. 

    Our surgeon had said that curative treatment is no longer available and my dad is being refereed to see if they are any options to help prolong his time here, they mentioned more chemotheapy or immunotherapy if the cancer type allows it.  At the moment we are just waiting for his appointment with the specialst.   I too find it so hard to not spiral and google, which I am afraid I have been doing.  I totally get it, it is so difficult to see any light or hope when we see and hear stats that are so poor. Its been the hardest journey, one minute celebrating the success of the surgery, and being clear, and the anxiety easing and feeling you can breathe again and then to get the worse news.  I know it feels like the world is crumbling beneath you. Simialr to how you feel, I can't even image how my poor dad feels, when they are the ones going through it.   If you ever need someone to talk to, im here.. i totally get it.