Hello to Oesophageal Cancer People

[christinebrown3]

Hi it's nice to know I'm not the only one suffering with this at the moment I have only some low grade cells and near the stomach high grade was to go and have an operation but it was cancelled as they found the low grade cells where they were going to cut so now it's all up in the air waiting to have a dye test just to get a good picture of the whole of my oesophagus to see what can be done. Chris

[Kathyhtak]

Hi Chris, This must be a very worrying time for you. The 'up in the air' is frustrating. All I would suggest is that you maintain a healthy lifestyle so you are as prepapred as you can be for whatever comes next, be that surgery, chemo or radiation. Try to have have some relaxation time as well, do whatever takes your mind off current worries - although that is easier said than done! I hope your dye test results are good and I wish you all the best. Please update regarding your situation when you can. Regards Kathy

[Gordon69]

Hi all I am a 45 year old. I was diagnosed with oesophageal cancer 12 months ago. I've had radiation and chemotherapy for 7 weeks last year then the 2/3 stomach removed. It has been 8 months since surgery. I feel a little better but weight gain is my biggest issue. I was never a big person but now I'm a walking skeleton. I started at 78 kg and now I'm down to 64 kg. I find dairy, ensure and protein drinks sends me straight to the toilet. I have 4 small children and hope I am around to see them grow up. It's been a roller coaster of emotions that's for sure. I've been an active and healthy person never smoked or drank excessive alcohol. It does not discriminate this dreaded cancer. As advised this cancer can come back and if I get to 3-5 years without cancer coming back I have a good chance of survival. The uncertainty of the future is still frightening. Would like to know if anyone has ideas on weight gain Regards Gordon

[Kathyhtak]

Hi Gordon Sorry to hear about your oesophageal cancer. Hopefully someone here will have some good ideas for weight gain. I have not had the surgery but when my cancer was raging and my oesophagus was almost fully blocked I lost a lot of weight. I found a food diary app was helpful in tracking what food I ate and how many kilojoules I needed to eat just to maintain my weight. I had to look at it as a challenge or job - didn't matter if I was hungry or not I ate. I did not have the issue of lactose intolerance then as you do (but I do have it now as a side effect of chemo!). Have you tried soy based drinks? Does Sustagen cause issues? Can I also suggest you look at the 'Smart Patients' website - it is a USA based site and there is a good number of esophageal cancer people who have had the surgery (which seems to be offered more readily in the USA) and some of the forum topics have been about regaining/maintaining weight post-surgery. All the best. Kathy

[christinebrown3]

It's now been 8 weeks that I had my Oesophagectomy lucky for me the cancer hadn't formed and this operation was so that in the future it didn't turn into cancer the operation wasn't very pleasant but have make it through. The worst is eating I find dairy is the worst and try to avoid I'm now on lactose milk and products that are the same only one hitch so far is that I had scar tissue grow over the opening which was something I wasn't aware of it has now been fixed so I am eating foods again when that happened I could only have fluids. I do feel for those that had to have chemo and radiation as that must have been awful to have gone through.