esophagus cancer advice

My dad has just been diagnosed and advised that surgery is not an option as the cancer has spread to his cells. As far as I know he will get chemotherapy. I would really like to talk to people who have dealt with this type of cancer as I am not coping very well and am scared of what the future holds. Thanks in advance
  • Hi and welcome to the forum.  I am sorry to read about your dad's diagnosis and understand the turmoil your family are going through.  There is a gentleman called Davek on the site who also has oesophugal cancer and has been through chemotherapy treatment. He has a thread called 'and now we wait'. I am sure he would be happy to help and answer your questions if he can, so suggest you put a post on his thread just in case he misses yours. Please also remember that you can talk to the nurses here Monday to Friday - their free-phone telephone number is shown on this page. I hope you get the help you need and keep in touch to let us know how you and dad are doing. Take care x

  • Hi Toothfairy,

    Just like to add my welcome to our lovely Max's. When someone we love is diagnosed with cancer, It is a very scary time. I speak as someone who has had prostate cancer and who has also lost several close family members including my mother to cancer so I know what it's like from both sides.

    We all try to put on brave faces to our family and the world while inwardly suffering terribly. I often say the careres are the forgotten victims of cancer because most of the attention is focused on the patient while the people caring often dont get the help they need.

    This is where this site is so good for we have a very varied mix of wonderful people on here who know from personal experiance what you are going through and will do all they can to offer emotional help and support.

    Please take care of yourself and keep in touch. Sending best wishes to you and your family, Brian.

  • Hi. I'm having problems posting. Will try later. Please ask any questions you like - I received the same news as your Dad in October 2013. Had chemo and now living with Cancer. Best wishes Dave

  • Hi Toothfairy,

    You are at one of the worst steps of the process having received the bad news but still unsure about what comes next.

    Has your Dad been referred to and met his oncologist yet? The oncologist should go through the results of his various tests and scans and discuss his prognosis and what treatment options are available. There are a range of options - whichever are recommended will depend on a range of factors. All cancer cases seem to be subtly different from the others depending on the results of the tests. In my case surgery was ruled out because the primary cancer had grown around my aorta - a blood vessel the width of a hosepipe which is directly connected to the heart.

    I found that the hardest words my family had to cope with were "inoperable" and "incurable". At the time these seemed very final and didn't leave much room for hope. However, my body was able to tolerate the chemotherapy and the cancer I have responded well to the chemo - not only did it stop growing but it shrank by over 50% as did the secondaries. It hasn't been completely eradicated but, so far, it hasn't started growing again and I'm living my normal life. I'm under no delusions that it won't start growing again, but the future looks a lot brighter than it did in October 2013 when I was first diagnosed.

    Please feel free to ask me any questions you like. I may not be able to answer some of the clinical questions but the Cancer Nurses on the forum will be able to provide solid information and advice.

    It is probably too late to give this advice, but I will anyway, this is based on my own mistakes! Try not to give into the temptation to Google about Oesophageal Cancer. There is some good advice out there, but there is also a plethora of advice and information which is out of date, well-meant but ill-judged, inaccurate and simply wrong. The CRUK and MacMillan websites are about the best there are.

    Also try to avoid any information more than about 3 or 4 years old. This will be based on data collected up to 10 years ago and treatments and outcomes have improved since then. Old survival rates are particularly scary and should be avoided. I'm not pretending they are great now, but they are a lot better than they were as recently as 5 years ago. 

    I'm so sorry you, your Dad and your family find yourselves in this awful situation and can only empathise with what I know you must be going through.

     

    Best wishes

    Dave