Hi has anyone survived this after being told they can’t have surgery due to distant lymph node above collarbone involved? Fit and healthy otherwise, so been a complete shock.
I can understand that this diagnosis has come as a shock and I hope you're coping as best as you can. Don't be afraid to lean on those closest to you for support when needed and do talk to your medical team, as they may help address the question you have.
It's difficult for us on the forum to answer but, if you'd like to speak to a cancer nurse outside your team, we have a free nurse helpline available if there's anything you'd like to discuss over the phone. The number is 0808 800 4040 and lines are open 9 to 5 Monday to Friday. You can also find information on many aspects of oesophageal cancer on our website.
Like you i was recently diagnosed with oesophageal cancer. I had an endoscopy and they told me there and then! Totally in shock like you, wasnt expecting it. It is an adinocarcinoma lower oesophagus. So far mine is T3 N2 Mx The x is because they found 2 areas on the ct that could be spread or not! Im waiting on a pet scan to find out. The waiting is dreadful thats for sure. If there is sread then im going to be palliative only.
I have found many stories of eople that have survived inoperable o.cancers on the macmillan forum, so lets have hope x
I was diagnosed with T3N3M1 and given a prognosis of between 2 and 6 months without chemo and up to 18 months with - in October 2013. Surgery and radiotherapy were ruled out because the primary had grown around my aorta.
The survival rate at the time was 3% for 5 years. Survival rates have slowly increased since then and our cancer is one of conditions CRUK is striving to improve diagnosis, treatment and outcomes for as a priority.
Being fit and well should help your body tolerate and complete the planned treatment. My case is unusual, but not unique. A couple of years ago I attended a CRUK conference as a patient rep. There was a conference dinner in the evening with no formal seating plan. By coincidence, both people sat next to me were stage 4 OC survivors more than ten years post-treatment.
I have just been so very, very, lucky. My oncologist prescribed the right chemo for me, I was fit enough to tolerate the high dosage, my T cell count remained high which helped avoid pneumonia or similar and then inexplicably my cancer continued to shrink for a year after my chemo ended. I’m told that my immune system probably learnt to identify the cancer cells and attack them - but no-one knows for sure.
Best wishes - I hope his treatment goes well. Dave
Sorry to read about your diagnosis. You are right, the waiting and the uncertainty is horrendous. Despair is our worst enemy because it can lead to us making bad choices such as refusing treatment which could extend or even save our lives.
A lot of people get phased when they hear the words inoperable and palliative. Surgery is just one option and many people conflate palliative care with end of life care. Even some health professionals are guilty of that. One MacMillan nurse offered me a visit to our local hospice to enable me to make an informed choice about my end of life care … this was before I’d even started chemo! I told her through gritted teeth that this was an inappropriate and insensitive suggestion!
