stage 4 oesophageal cancer

32 year old male. Sadly I have been diagnosed with stage 4 oesophageal cancer. A 7cm adenocarcinoma tumor was found on my lower esophagus with spread to several local lymph nodes. Currently no other spread to other major organs. Confirmed with biopsy via endoscopy and CT scan.

My only symptom prior to the endoscopy was slight dysphagia. At the initial meeting with my health professional I was told this was most likely gastritis but recommended an endoscopy as a precaution.

A further PET scan also detected lights in my neck and under my tongue. Doctors are unsure if this is related to the same cancer or if I’ve been unlucky enough to also have a separate lymphoma cancer. More testing is required to confirm this.

Needless to say I’m absolutely devastated. The doctor has told me this is not curable but I may be able to prolong my life with chemotherapy. He said radio is not an option but I don't understand how he has come to this conclusion when the full diagnosis is yet to be complete.

Before I can start chemo, I am waiting for biopsy results from the potential lymphoma in my neck. This may take a few weeks before being confirmed, then I can start the right treatment for me.

If anyone has any advice for me that would be much appreciated. My family still think there is a chance I can reverse/survive this but from reading online I have severe doubts about this.

Parents
  • Hi GreenCarpet

    I'm really sorry to hear about your diagnosis, someone very close to me in my family is going through a similar ordeal. I'd offer a few suggestions.

    Firstly I'd ask the doctor about the chemo regime you're going to start for this (pending your biopsy). The ones generally used are FOLFOX (two drugs) or FLOT (three). Given your age you may want to think about FLOT even though the side effects can be pretty bad.

    There really are some success stories out there for people who respond well to chemo, despite size or stage. I also recommend that you ask about mismatch repair, PD-L1 status and HER2 status from your biopsy as this will inform your plan (but most doctors do this now as standard). I think radiotherapy is used generally for upper or mid oesophageal tumours and possibly why your doctor didn't recommend it, although if your PET indicates it's higher up too, you may want a second opinion. You may also benefit from getting a second opinion generally, just to be sure that your current doctor is offering the best advice for you. 

     

    I wish you the best, please DM me if you feel like you want to. And don't give up hope, this is an awful disease but there are people who have come through it. 
     

    Giving my very best to you and your family xx

Reply
  • Hi GreenCarpet

    I'm really sorry to hear about your diagnosis, someone very close to me in my family is going through a similar ordeal. I'd offer a few suggestions.

    Firstly I'd ask the doctor about the chemo regime you're going to start for this (pending your biopsy). The ones generally used are FOLFOX (two drugs) or FLOT (three). Given your age you may want to think about FLOT even though the side effects can be pretty bad.

    There really are some success stories out there for people who respond well to chemo, despite size or stage. I also recommend that you ask about mismatch repair, PD-L1 status and HER2 status from your biopsy as this will inform your plan (but most doctors do this now as standard). I think radiotherapy is used generally for upper or mid oesophageal tumours and possibly why your doctor didn't recommend it, although if your PET indicates it's higher up too, you may want a second opinion. You may also benefit from getting a second opinion generally, just to be sure that your current doctor is offering the best advice for you. 

     

    I wish you the best, please DM me if you feel like you want to. And don't give up hope, this is an awful disease but there are people who have come through it. 
     

    Giving my very best to you and your family xx

Children
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