Inoperable Cancer

I was diagnosed with Oesophageal cancer after an endoscopy on 2nd February this year. I was seen by a surgeon who thought I was an ideal candidate for surgery as I was a fit and healthy 74 year old with no other medical issues and had always kept active. I underwent 23 doses of radiotherapy and 5 doses of chemotherapy starting on 23rd March to shrink the tumour ahead of surgery. However, after a CT scan on 16th May I was told I had an enlarged Lymph close to my aorta and 2 enlarged nodules in my left lung. The surgeon said it was now impossible and too dangerous to operate, he wouldn't be able to access the lymph gland to remove it. I have had a PET scan now and am waiting for an appointment with the oncologist to see if he offers any treatment. To be honest I don't think I could face any more anyway. I am not well at the moment, I am being treated for a lung infection, on second antibiotic, first one made no difference. I have a terrible cough and am very breathless. I can cope with that though, it's the pain in my neck that is getting me down. I have pain on the left side of my neck under the jaw that  sometimes just gets me down. The nurse and the GP wondered if it was radiotherapy damage, but I wonder if I have the cancer now in the lymph on my neck. I am controlling the pain with painkillers but  I can only have 8 paracetomol a day, the GP is trying me on Iboprufen but it's a bit miserable. It's been a pretty horrible year so far, but so much waiting, my oncology appointment is still 2 weeks away. I feel a bit lost.' 

  • Hi I am sorry to hear this unexpected news. I don’t have any experience but I would say focus on getting better from the lung infection and recover from the treatment. Really look after yourself.  At the moment you are hurting and feeling weak but that will change. Take it day by day and try not to worry about what might happen.  xxxx

  • Thank you so much for the encouragement x

  • Hi there, have you spoken with your GP with regards to stronger pain relief. I am on a low dose of morphine which comes in a patch. Not saying this would be suitable for you but might be worth asking to help with the pain. 

    wishing you all the best

    Max

  • Hello, 

    I’m sorry too that you are having such a rough time, it’s difficult to stay positive when you feel so low.  Did the chemo and radiotherapy shrink the tumour at all?  If it would help you would it be worth getting a second opinion from another consultant?  I know that some surgeons are reluctant to take on more complicated cases (my husband went through a very difficult time before his oesophagectomy) so it’s worth thinking about.

    Sending you all good wishes x

  • The chemo and radiotherapy did shrink the tumour and all the pain I had swallowing and pain in my chest has now gone. What I didn't know was that the pain got worse when the treatment finished and for two weeks after it was painful to swallow anything at all. I am pleased about that but it just seems like you pass one hurdle to come up against another. I'm a bit backward about coming forward so haven't thought about another consultant but thankyou for your suggestion. 

  • It’s good that some of the pain has gone, that must be a relief for you and the fact that the tumour has shrunk is something positive too.  Was there any mention of any change in the lymph gland?  

    I have mentioned this before elsewhere, the Oesophageal Patients Association are very supportive and informative - they were so kind to me when I was struggling with my husband’s diagnosis so perhaps you could have a chat with them.  

    When it came to my husband’s treatment I must admit I soon learned to stamp my feet loud so that everything moved at a reasonable pace.  It wasn’t always easy but I have no regrets!

    x

  • Thank you, I didn't know about the association I'll certainly look into it, I am not very good at stamping my feet and neither is my husband! Perhaps I should learn. The PET scan results should be back now but it is still 11 days until I see the oncologist and find out if anything has grown.

  • Sorry I’m late replying, the waiting must be stressful and time goes by so slowly.  I hope there’s some positive news following the PET scan, do let us know.  In the meantime keep an eye out for those hob nailed boots! x

  • Hi, I was thinking about you and wondering if you have seen the oncologist yet or if you have heard anything about the PET scan.  If not I hope it’s not too much longer before you get some answers. x

  • I saw the oncologist yesterday, it was brief because he was more concerned about my breathlessness and sent me for x rays, I'm to see him again. He did tell me that the PET scan showed no progress of the disease since the MRI in May, which was good news. He wants me to have 3 weekly chemotherapy to control the cancer as it can't be cured. I had tests and another scan, the chest infection is clearing up but I do have scarring in my lungs from the radiotherapy so the symptoms were worse. The oncologist didn't mention Imunotherapy which some people on this forum have had success with, so when I see him again I will ask if it's suitable for me.