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Living with stage 4 oesophageal cancer

Thetelfordwolf62
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Just over 4 years ago,I was diagnosed with oesophageal cancer,during the start of the covid pandemic,I underwent 4 rounds of FLOT chemotherapy,then a 2 month wait for Ivor Lewis surgery,I spent 10 days in ICU.Returned home while I gained strength before another 4 rounds of FLOT chemo .

I was told if I get to 2 years,I’ve probably cracked it ..then 2 years 4 months later I lost my voice,was sent for a CT scan after being told it’s probably a viral infection,however results revealed it has returned to the same area and now inoperable,I have since had 6 rounds of CAPOX chemotherapy which was incredibly hard going ..and after another CT scan revealed had spread slightly to lymph nodes.

I was then given 10 rounds of radiotherapy,and currently awaiting results of what situation I am in now ..I feel like I’m running out of options,still hardly any voice 18 months later and now a continuous dry cough

is anyone else out there in similar circumstances,Regards Marc aged 63 

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    Hello Marc, 

    Thank you very much for coming here to share your stage 4 oesophageal cancer story. Being diagnosed with oesophageal cancer during the covid pandemic must have been tough. You've been through so much in the last few years and the chemotherapy treatment seems to have been hard going. I am sorry to hear that the CT scan revealed it has spread slightly to the lymph nodes. Well done though for getting through all this intensive treatment, the chemotherapy and the radiotherapy and I hope that you won't have to wait too long for results - let us know what the results have shown if you don't mind I hope that all this treatment you have bravely been through will have been beneficial. It must be so hard too to be living without any voice for the last 18 months - I hope that you are still managing to communicate ok with your friends and loved ones. Do mention this continuous dry cough to your medical team so that they can look into it and hopefully have some suggestions that will help. 

    I hope that you will meet other members of our forum who are going through something similar at the moment. One important member springs to my mind  who also had a stage 4 oesophageal diagnosis and has therefore been through something similar and I also noticed this thread by  who at the age of only 32 was diagnosed with stage 4 oesophageal cancer 9 months ago and he mentioned also having a spread to lymph nodes. He was at the time waiting to start chemotherapy and I hope that you will be able to chat and exchange experiences. Feel free to respond to his thread too if you would like to do so. 

    I hope that you will be able to connect via the forum with others who have had a stage 4 oesophageal cancer diagnosis and that you will be able to support one another. 

    We're all here for you anytime you need to talk to others who understand what you are going through. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

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     Hi  , firstly, I am terribly sorry to hear you are going through this experience. Although everyone is unique and different, allow me to share my story with you below. You can also read my initial posts from when I was first diagnosed in May 2023. (Also thanks to  for the tag).

    Here is my story that I have recently posted to another online forum:

    At the age of 32, in May 2023, I received the devastating diagnosis of stage 4 adenocarcinoma after a few weeks of experiencing difficulties with swallowing. An endoscopy revealed a substantial 7cm mass, and subsequent CT and PET scans revealed metastasis to multiple lymph nodes, resulting in an unfortunate incurable disease.
    In June 2023, I commenced six cycles of palliative chemotherapy (comprising cisplatin and capecitabine) alongside herceptin due to my HER2 positive status. Midway through treatment, a scan in August 2023 indicated a significant 50% reduction in tumour size across all affected areas.
    Subsequently, I discovered that I was PDL1 positive, making me eligible for keytruda immunotherapy. However, obtaining both herceptin and keytruda concurrently through the NHS was not funded. Fortunately, with the assistance of my oncologist and after a successful appeal, funding was eventually granted through my private health insurance provided by my employer.
    Upon completion of chemotherapy in November 2023, subsequent scans indicated regression of lymph nodes to normal size and a significant reduction in the primary tumour, described as 'unmeasurable / mild thickening'. Chemotherapy was then stopped, and treatment continued with herceptin and keytruda.
    Again, a recent CT scan in January 2024 reported stable disease, prompting further discussions with my oncologist. Requesting a deeper conversation for additional options.
    To my surprise, my oncologist recommended a PET scan to explore potential avenues for curative intervention—a term I never imagined hearing. I approach this new development with cautious optimism, acknowledging the importance of advocating for oneself throughout this journey. This PET scan will look at the previous disease sites and is due to take place in March.
    I felt compelled to share my story here to offer a ray of hope.
    Sometimes, seeking second opinions and being proactive in discussions with healthcare providers can uncover treatment options that may otherwise remain unknown. Though the journey may be challenging, there is always hope to hold onto.
    I'm open to questions and discussions and would love to help other patients and caregivers in any way.
  • Offline in reply to Moderator Lucie

    Hi Greencarpet and TheTelford Wolf,

    I wish I could give words of wisdom, but I’m afraid you’ve both got more relevant  experience than I have. 

    In 2013, I was told that my primary oesophageal cancer had grown like a fist around my aorta. This ruled out any surgery or radiotherapy. Further test showed I wasn’t suitable for hormone therapy! 

    One the plus side, I’m now almost ten years beyond the prognosis I was given.

    Good luck

    Dave

  • Offline in reply to Greencarpet

    Thanks for your reply,I was busy yesterday what with kids and grandkids,and my head is all over the place at present,but that’s good to hear.I don’t however have health insurance,but my question tomorrow to oncology is immunotherapy an option,as apart from chemo I can’t see any more options.

    This  waiting game is the worst,are they going to say it’s chemo or,you have so long,without it,I am a positive person and remain happy and active,but I also read life expectancy is 5 years from diagnosis and this is the start of year 5,time will tell,and tomorrow may give me further hope,

    I wish you good health,keep in touch and I will let you know the outcome kind regards, Marc

  • Offline in reply to davek

    Wow..how do they monitor it,do you have regular CT scans,And has it grown anymore it must be a worry ,Marc

  • Offline in reply to Thetelfordwolf62

    Hi again,

    For the first 9 years I was having a CT scan every 6 months for monitoring. 

    I then asked them to review all my scans from first to last - like an animation. They indulged me and were surprised to see that over the years my primary and secondaries had continued to shrink (without further treatment) until there was no visible sign of cancer apart from shadows which may be scar tissue where the cancer used to be. 

    I’m now having a CT scan every November. 

    I’m convinced it will eventually return, but I try not to let the fesr of that get in the way of enjoying these unexpected years of life.

    I feel incredibly lucky - especially when I remember that I was told in September 2013 that I might not make it to Christmas and that palliative care was my only option.

    Good luck!
    Dave

  • Offline in reply to davek

    Wow,your incredibly lucky ..and long may it continue..

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