Can I ask if there are many people on the site that had the squamous variety of oesophageal cancer. I had to have 75% of my oesophagus removed as the cancer was stage 3 and in the middle of the oesophagus. I am 8 months post oesophagectomy and am getting wheezing in my chest on some days. I am wondering if this is caused by aspiration as the stomach has been pulled up so near to the top of the trachea? I had a CT scan and all was clear in the lungs, thank goodness. I’m sleeping on a bed wedge propped up with two pillows and take omeprazole late afternoon and then gaviscon before sleep. Just wondered if any other people who had squamous cell had the same issue?
Thanks
Nicola
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Da1sychain
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Hi. I'm one year on from having a full oesophagectomy (Ivor Lewis) I had squamous cancer about a third of the way up I we t3 with lymph nodes affected I had wheezing for a long time I found that deep breathing excercises really helped I still get discomfort where they had to do a thoractomy (need to check my spelling) I still feel tight in the chest sometimes.Its early days yet. Have a chat with your Upper GI nurse she/he will be able to give you advice, you can also phone the OPA office and they can put you in touch with other patients that you can talk to.
Just be kind to your self it takes a long time to recover. Reach out to others there is lots of help out there and this is a super forum with lots of lovely people who can help.
Thanks for your reply. Sounds like we had a similar staging. I am guessing from your username that you are from Kent? I am near Canterbury. Did you go to St Thomas’ hospital in London for your Ivor Lewis? I’m really glad to still be here but find I get quite anxious. I was trying to figure out if the wheezing was due to the procedure or whether I have developed a bit of asthma (I have allergic rhinitis). Also had pneumonia and pulmonary embolism when I was on the chemo but thankfully lungs are clear now. I will have a chat with my specialist nurse but she gets quite busy so I try not to bother her too much. I find my questions are building up though so I will need to have a chat with her. How are you feeling now? They say it takes a year to start feeling a bit like yourself again. Best wishes, Nicola
Hi Nicola.Yes I'm fom Kent, near Maidstone and I had the good fortune to go to St Thomas's for my operation. Aren't they a fantastic team?
Your problems with breathing are probably due to the the way they operate. Don't worry about calling your nurse specialist whenever I phoned mine she just said "That's what I'm here for ". I was very anxious about almost everything for the first few months so I think it might be normal. I used to write everything down before I phoned the Upper GI nurse and tick things off when they were dealt with. I don't know when I stopped being anxious I think it just got less over time.
If you are anxious any time macmillan are there to talk to they may not be medical qualified but sometimes you just need to talk things out.
Hi! I had the squamous type but not the surgery just radiotherapy so I guess I'm no help but I wish you well. I take the Omeprazole morning and night if thats useful info. Good luck!!
Thanks for your reply. It’s interesting that you did not have surgery and am pleased that radiotherapy worked for you. I’m trying to find out whether it’s silent reflux (perhaps need to take more omeprazole/gaviscon) or whether it’s mild asthma.
I had squamous cell stage 3 near junction with stomach. I am 3 Yr 6 months on and still get a tight chest at times when out in cold, windy weather. Breathing exercises help a bit and I have a ventolin inhaler which helps a bit but I try not to use it. My chest x rays were clear but, as my GP remarked , lungs take a bashing in the op. Basically, I think it may be just one of those things about altered anatomy
Hi grandylynda, thanks for your reply. Yes, my wheezing is definitely worse out in the cold weather. I’m beginning to think it might be a touch of asthma so I might have a chat with my GP. It’s interesting you have got an inhaler for times you might need it. Do you get reflux as well? I was wondering whether I got the silent reflux as I don’t get heartburn but do have lots of air bubbles come up in the morning when I wake up. Does it get easier 3years 6 months on?
Yes, I do get reflux as well, often silent i think. Not sure it gets easier but you get more used to coping with it which I suppose does make it a bit easier. I think adapting is a long slow process and can be a bit up and down
I had squamous cancer, total oesophagectomy plus part gastrectomy, post operative recovery takes a long time but slowly I found it got easier by gradually walking a short distance daily until I was able to walk 2 miles every day. Now I have to walk shorter distances and rest before continuing. I did have my operation in1994 so after nearly 27yrs I am slowing down. Best wishes for your journey, sometimes some of the simpler solutions help but all the side effects change from time to time Sally
Hi Sallym, Wow 🤩 27 years. That’s brilliant and I am encouraged by your experience. I am going to follow your example and try and get out walking a lot more. Does the eating get better as you progress? I’m still on metaclopramide which is pushing everything downwards but need to come off it. When I come off it the food seems to stay in my stomach much longer and is uncomfortable. I have had two stretches but they said I might need to have more. I’m not complaining as I am so pleased to still be here, just trying to improve things if I can by trial and error. I’m really hoping I do as well as you have done. Nicola
8 months on is a very early phase for the New Normal anatomy to settle. The mental acceptance of this new normal will benefit everything.
lungs need exercising, brisk walks slowly progressed if you can else other lung related exercise can do wonders.
Irrespective of the type of the oesophgaeal cancer or the %age of the resection, the symptoms you have are normal for a healthy surgery survivor.
The sheer physical close proximity of the relocated stomach within the Thorax area will make lungs compressed and this may for some become a chicken and egg situation. Perservered exercise, patince with acceptance mindset will yield effective outcome.
Thanks for your reply and reassurance. I was taking metaclopramide which was pushing everything downward but since coming off it have found that I get more of a full feeling for longer and lots more gurgling air coming up which I am guessing means silent reflux which is concerning me. I’m drinking more water and taking more exercise. I don’t smoke and have very little alcohol. I only have one coffee a day, eat my last meal about 6pm and sleep on a bed wedge. I have found dairy causes an acid feeling in the stomach so have pretty much cut that out apart from a bit of milk in tea. I do eat quite a bit of sugary stuff so am wondering if I should try cutting that down but there comes a point where you wonder what is left to eat if you keep cutting stuff out.
I am 6.5 years post op, Ivor Lewis, half my stomach, 2/3 oesophagus and 4 lymph nodes removed. Over the years I've had problems with "reflux" and breathing (due to aspiration). I've had so many scans, x-rays and tests I've lost count, and so far I am still all clear. My main concern is damage caused to my lungs.
I recently started seeing a new Doc, who has a lot of directly related experience. It's early days yet but he's suggested I can slowly reduce my PPI intake to 80mg/week, rather than the 40mg/day I was previously on. I am also managing my condition with diet, exercise, breathing exercises and time management.
I have almost completely cut out caffeine and sugar, having found that both exacerbate the reflux, and try not to eat anything at all after about 6.30pm. I get some kind of exercise every day as this speeds up my metabolism and therefor my digestion.
I find that if I can stick to this I sleep fairly well, have no reflux and, after about a week, start to feel really very healthy and happy.
I don't have a wedge pillow but have raised the head end of my bed by about 8" and sleep with seven pillows, depending how I feel. I rarely take anything else but occasionally use Gaviscon or similar, if I feel the need after dinner.
Having used PPIs every day for six years, I recently had a bone density scan, which showed that it is already slightly low, though not dangerously. I've found it difficult to drink milk as it's hard to digest, but now take a calcium supplement and drink half a pint every day, or have some yogurt.
My goal is to reduce the amount of drugs I am taking to an absolute minimum, using diet and other healthy techniques to manage my condition and live as normal, happy and healthy life as I possible can considering.
Hi Nick, thanks for your reply. What you have written is very helpful. I was worrying about taking the PPI because of the side effects. I am taking 20mg and gaviscon advance, but am still getting a bit of throat irritation from the gurgle air coming up and sometimes am wheezy. I’m concerned that the air coming up might be an indication of silent reflux. I asked a doctor and they thought it could be (a bit vague) and to try a different PpI (esomeprazole) but I read up on that one and there seems to be some court cases in USA because it can cause Kidney problems so I am not too keen.
Interesting that you found sugar exacerbates the reflux. I found dairy did but didn’t really think about sugar and I do eat quite a bit of sugary foods so that’s something to think about.
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