Hi all, I am quite new to this site having only recently been diagnosed with OC (almost 2 month now) at the age of 56; have had a variety of scans and endoscopes and been told that the outlook is pretty good and they will operate.
My TNM score (don't mean to make it sound like a tv quiz show lol) is T3 N 1 -2 M0; starting chemo next week but I was wondering from your experience if you could suggest what questions I should ask the surgeon when I meet him!
Any advice much appreciated
You are very welcome!
You could ask whether you have adenocarcinoma or squamous cell carcinoma. Adenocarcinoma tends to be lower down towards the stomach and is often associated with acid reflux.
The T score is the extent of the tumour and how far it has gone through the wall of the oesophagus. N means node involvement, and only having one involved is good. M means metastatic spread so M0 is also good news.
The surgeon may operate conventionally or may do it laparoscopically (ie keyhole). Either way, your oesophagus will be removed and your stomach re-shaped and joined up to the stump of your oesophagus, so it will end up in your chest! This sounds scary but it is a well understood surgical technique.
The chances are that the surgeon will make final decisions about the details of the surgery after the chemotherapy because the idea is that the chemotherapy will shrink the tumour and make the surgery more successful. Research has proved this to be the best method.
One thing you might think about is to try and get into an eating routine 'little and often' before the surgery so that this does not come as too much of a change afterwards. 'Get fit and get fat' before the surgery is something that some of the surgeons say to build yourself up before the operation, but you will have to see how you feel.
I think you can be reassured that although this surgery is complicated, the surgeons who do it are highly trained and experienced.
If you want to talk to patients who have had the surgery themselves a while ago the OPA would be able to help. Their helpline number is 0121 704 9860.
The other things to remember are:
People often use this site when they want to share ideas about problems; there are many other patients who do not experience those difficulties - complications are not compulsory! David Kirby, who started the OPA had this surgery in about 1983 and is still alive and well, and there are many others who had the operation many years ago and have a good quality of life today.
Keep talking to your wife / loved one about how things are progressing, because you will end up going through this together. Inevitably you will shield each other from some things, but it is a great test of a relationship and you will both need to value each other and your friends. You will both need treats from time to time. You may need to sort out arrangements about keeping interested friends informed about your progress without them ringing the home all the time. It is quite a challenge talking to others about the diagnosis and the treatment. You will probably come across people who will spectacularly say the wrong things - but it's not necessarily their fault that they do not understand how you are feeling: but you will find great support and friendship from unexpected quarters.
Thanks for the answer, I already know the TNM meanings as the oncologist and Mc'Millan nurses have been very supportive and informative (McMillan info pack). A good idea to start a little and often eating regime, I was thinking are there any specific things I need to ask about the surgery such as the surgeons success rate of ops being infection free and stuff like that.
Generally speaking the centres that do most operations have the best outcomes.
There is audit material around.
I was at a meeting this morning when a similar topic came up, so this is a very generalised comment. The operation is done after an assessment on your general fitness. Some people, particularly of a certain age, have a likelihood of having other conditions as well, so sometimes it is worth checking with your doctor to get as fit as you can, or to bring forward treatments so that there aren't any last minute hiccups in your pre-op assessment.
I was 54 when I was diagnosed with a T3N1M0 adenocarcinoma of the lower oesophagus, so very similar to yourself. That was seven years ago. If I had known then what I know now, I would have asked more questions about the possible side effects of the chemo and what do if I experienced any of them. I suffered terrible constipation after my first cycle of chemo and was unprepared for it. (Diarrhoea is more common and the hospital had given me anti-emetics to counter it).
You can find information about your hospital's success rate and complication rate for this type of surgery on the internet, as well as the latest patient experience survey, but, if you've already chosen a hospital and started treatment, it's probably a bit late for that. Personally, I wished I had done more research and chosen a better hospital, but the surgeon was brilliant and I'm still here.
The advise about getting as fit (but not necessarily fat) as you can before starting treatment is very sound.
Good luck.
G
Thanks spikey. Not got any serious effects from chemo only slight nausea / lethargy but early days yet ( 2 weeks in). Trying to exercise 3 daysper week using rubber exercise bands frpm ebay. Pretty good as you can alter intensity as you workout and as i don't feel up to my old gym sessions it's ideal. Taste has more or less deserted me already but find pineapple juice or mint sauce (in food) livens things up acceptably.
Main thing is you are still kicking around.
From a Carer’s Perspective 
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