New - Oesophageal Cancer

Hi everyone,  I found out last week that I have Oesophageal Cancer. I am shocked because I don’t feel poorly and I look okay. I’m waiting to see a consultant next Wednesday, I’m guessing to discuss my treatment going forward. I’m staying optimistic about this, I really don’t feel ready to “hang up my boots”, so to speak. 
Can I expect to get worse before I get better? 
Words of encouragement would be greatly appreciated!  Thanks in advance. 

  • Hi, I was diagnosed in February with oesophagus cancer and I have had no symptoms and felt fine as well except for getting blood clots.  Unfortunately they have told me that I am Stage 4 but have started chemo as palliative care but it’s all a bit new to me so appreciate advice like you.

  • Oh dear Lainee, looks like we’re in the same boat, although I don’t know what stage I’m in yet……I guess I’ll find out next Wednesday. We have to be strong I know! 

  • H Linda / Lainee

    I was diagnosed in February this year after suffering reflux and indigestion symptoms. I was found to be stage 4 with metastasis to my liver and put on  chemotherapy for 6  x 3 week cycles and immunotherapy for up to 2 years. I’m currently 2/3 of the way through cycle 4 and feeling well apart from tiredness. Since starting treatment I haven’t needed to take any pain medication and if anything my symptoms seem to have improved. I’m waiting for scan results but my oncologist seems happy with my reaction to treatment so far.

    Steve M

  • Hi Steve…..thanks for your message, it sounds very encouraging. I hope your scan results show improvement! 

  • Hi. I was diagnosed with esophagel cancer 2 weeks ago. Its localised. I am due to start 3 rounds chemo to shrink tumour before surgery. Saw surgeon this week and he seems positive about outcome.

  • Hi  Kells. I have been taking Lansoprazole for a long time, but last October I was getting problems with indigestion, so phoned my Doctor to ask for a stronger dose of Lansoprazole. .But she said that it would be wise to be checked out. So within four days I was having an endoscopy.. the result was'nt  great.  They discovered a tumour in my oesophagus...I am a fit 78yr old male, and because of that I was able to  start an invasive course of chemo .Followed by major surgery to remove the tumour. I was told the the cancer was caught early and had not spread , [it was stage 2] a further course of chemo was planned , but not needed  now, as all seems to be clear after the surgery.  I have my three monthly follow up after surgery in August and hope to be told that they will see me in five years.  My recovery will  take a while and have to be careful with my diet , but I have kept positive all the  while, even throughout the bad reactions to chemo. Stick with it Kells , dont  think about it too much , take things day today and you will  soon  be where I am  now,  ATB Takliwa

  • I'm due to start FLOT chemo in 2 weeks. Is that the type you had? 

  • Hi Laine, i was diagnosed in Dec 2021 with oesophagus cancer and also I am stage 4 receiving chemo as palliative care. Can I ask how are you tolerating the chemotherapy.

    Wishing you all the best

  • Hi Steve I saw your post and wanted to find out a little more about your situation if you don’t mind me asking I was diagnosed with stage 3 in July 2021 and started chemo/radiotherapy for 12 weeks, as a curative option it’s not worked fully as cancer cells are still there in my oesophagus, they seem to think it may have gone to my lungs but can’t be certain so are treating me like it has and have offered me immune therapy. How did you find it? I’ve asked about surgery and they’re saying no as it’s in a difficult place 

  • Hi Clarab

    Sorry to hear about your situation. I was diagnosed with stage 4 Oesophageal cancer with small tumours on my liver and so not offered surgery but my oncologist put me on a combination of chemotherapy and Immunotherapy as pallitive care with the aim of extending survivability.

    The chemo is for 6 x 3 week cycles and I am halfway through number 5. This is Oxalipilatin and Capacitabine (Xelox or capox) and the immuno is Prembolizumab (Keytruda) which is prescribed for up to 2 years.

    The intraveinous chemo takes 2 hours to deliver but the imuno only 30 mins.

    I've been feeling ok and eating normally but the last 2 cycles of chemo have left me feeling very tired for the first week then I seem to bounce back. The oxalipilatin does have neuropathy side effects for about a week afterwards which makes drinking or touching anything cold feel like being connected to mains electricitry !

    I did have a scan 5 weeks ago but am still waiting b for the radiology report and can only be guided by my last oncology meeting where my oncologist seemed to think lack of too many side effects and the way I'm feeling was encouraging.

    I was contacted yesterday and told the scan report is back and I'll get the results next week at my oncology appointment so have everything crossed.

    He remindeed me that chemo would cease after cycle 6 but reassured me that it is a targetted treatment and overall does less collateral damage than the chemo so I shoudn't experience so much tiredness once on immuno only.

    I hope this helps and that your future treatments are successful.

    Regards, Steve