Oesophogeal cancer

Hi LizzieJ

Your obviously in a place that you would not like to be in and mostly all of us have at one time or another been there on this site so we can appreciate the torcher you are going through. Unfortunately the waiting and decision making is possibly the worst part of the journey you are now on, once the decision is made I found the follow-on treatment easier than the waiting, of course that doesn’t mean the treatment isn’t easy but I felt you get so much more support once you start. I had 6 rounds of Chemo and 35 Radiotherapy, the later to me was the difficult part as it becomes tiring just in the process of going each day, but I carried on working throughout to help me take my mind off it all. The RT took it’s toll also on my neck stoma and that really got to me, the tiredness etc hit me the day after my last round of RT and I was literally flat on the sofa for 2 weeks but it was all worth it as I am in cancer remission for 12 months, I still have 3 monthly MRI contrast scans and 3 monthly meetings with the Oncologist and my ENT Consultant so I feel so grateful that they still care.

One of the main things you can do if you are getting mixed info and problems is to speak with either the Specialist Nurses or a MacMillan Nurse which whilst I have my own Team for ENT (speech Therapists) I did find them difficult to locate with OS cancer but there will be some and they can help you co-ordinate the different teams.

I hope all will become more clear for you and please keep in touch with this group as we can help as much as we can from our own experiences but if you have any problems with what is coming you can always use the ‘ask a Nurse’ who will give you info via email or you can call them

Please bear with it you will get there, Take care

Tony

Thank you Tony. Yes, the waiting is the worst. It's good to hear your experience,  and I will certainly keep in touch with the group. 

Hi Tony sorry to butt in I am new here and have just posted my story - Can I ask do you have a stoma on your neck after removal of your oesophagus??  This is what I may be having done after chemo and was wanting to know what to expect post surgery and how difficult that time is.  Thank you 

Hi Katie,

I’m sorry your in this position and can understand your problems re decision of what to do regards options.

Unfortunately my stoma is not for as you describe, mine is a Laryngectomy, I have had my voicebox removed which means my feeding tube has been separated from my breathing airway so called a neck breather, I eat in  a normal way, so unfortunately mine is different form your proposed operation. I have had 2 separate Cancer’s in 2 years both unrelated

Along with this I still have a voice via a prothesis in my back throat which when I speak with the HME filter pressed in my air transfers to the feeding pipe and the voice comes out via my mouth as normal so what you have described I can’t say much more, have they given much more information as to the outcome other than feeding, if so may be able to offer further support, always remember with this Community you will get others that may have had similar or you can ask the nurse at the top and they will possibly be able to give more information.

 Ask a Nurse 

I always advise anyone on here to ask questions with your team – before you attend a consultation take along your Husband and write down before you go all the thoughts both of you have because believe me I was forgetting things until I got home, reading your journey I’m sure you know this but I did it with my second one and seamed more prepared, my first was 2020 so it was a rush job as the Consultant wanted the work due to Covid restrictions !!

Please come back if any of us can help
Take great care

Tony

Hi LizzieJ, so sorry you find your self here, I shouldn’t really be on the Oesophagus site as my husband had his stomach removed in Jan so we’re on stomach site but just wanted to say I know how you feel as we were dealing with Notts and Lincoln hospital, it’s hard and seems to take longer but we got there in the end. My husband didn’t have chemo as surgeon said over 75s don’t do so well with it, he’d 80 next month but managed the surgery ok. He also has kidney cancer and Lymphoma cancer, with having yearly CT scans for his kidney that when stomach and Lymphoma were picked up, we start on the Lymphoma next month?

I have bladder cancer I’m 11 years clear grade 3,  I’m not sure if your husband had his bladder out, I didn’t but I had BCG treatment. Good luck to you both, x

Thanks Tony for replying and gosh it sounds as if you have been through a lot!  I have been fighting cancer all my life and have attended hospital most of my life.  Thought was over the worst when I got my stomach out but then told about this cancer in 2 places.  The waiting is horrible not knowing what is going to happen, but have taken heart from some of the replies for Oesophageal cancer in that the time they give you is not always exact.  So I can hope that I might get past the 9 months diagnosis - fingers crossed.  I am hoping someone on here has had the sort of operation I'm thinking of going for.  Good luck and I hope you stay cancer free. 

Katie