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Living life after treatment and surgery for Esophageal Cancer.
In December of 2020 I was diagnosed with stage 3 Esophageal Cancer. After chemo and radiation in February and March of 2021, I had surgery to remove the cancer in May of 2021. For me the surgery and recovery were probably the toughest part of the process. Not to say the chemo and radiation were easy, they were not but the changes the surgical part of treatments have changed my life from here on. Life after I got home from the hospital at first would not have been possible without a lot of help. Little things you take for granted such as showering or even walking about your home couldn't be accomplished without help. Those things got easier over time but it was a challenge. Getting use to having to sleep at a 30° angle because laying flat means anything in you new redesigned stomach comes up while you sleep(very uncomfortable and dangerous for your lungs). With the new design of your stomach food is also a bit of a challenge. They give you a list of foods you will probably be able to eat and a list of foods you probably should stay away from. With me I found after time that you have to try different foods and your body tells you quickly if you can or can not eat that again. You will also find portions you can tolerate will be much less than you were use to. This means you eat many more times per day. In the end it has been worth it for me because I have been cancer free on my 6 month scans so far . Another scan in a month which will be 2 years since surgery, I pray they continue to show me cancer free. If anyone has any questions on my journey so far please reach out. I have a friend who mentored me in my journey which helped tremendously for me. As I have said and believe since my journey started we are all" STRONGER TOGETHER "
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Hello from Australia, Good to read your comments as above. I’m 14 months post surgery and have been able to gain 6 kilos (13 lbs) after losing 16 kilos (35lbs) in total by the time I was able to recommence a normal diet. Appetite is different, perhaps because gastric stretch receptor function has changed. This also means you have little or no idea when you’ve eaten enough. You quickly get to trust your visual assessment of manageable portion size. After 12 months, I started getting quite severe reflux and started taking Esomeprazole (PPI) - the dose required to control reflux is 60mg which is quite high. My surgeon has said that the reflux has to be controlled as it may cause a new bout of esophageal cancer. He also said that gastric tissue usually stops producing acid for 12 months or so after surgery. Has anyone else had problems with reflux and if so, how are you managing it? Some foods now need to be avoided or eaten in very small quantities - fatty / oily foods being the worse.
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1 ReactionMany of us do a few different things. And we have a few Aussies and Kiwis here and there who pop on our twice-weekly free Zoom calls.... next call is Sunday at 6am for me in California... which is 11pm Sunday evening in Brisbane... and 9pm Sunday evening in Perth.
Anyway... some of us switch PPIs to Omeprazole... or Pantoprazole... as maybe these work better. Some of us switch up the dosages by taking one 40mg pill in the morning... some take two 40s a day... one in the morning and one before dinner or a bedtime. Some switch to taking two 20s a day instead of 40s. Some also take Gaviscon Advance before bedtime to quell the acid in their tummies.
And oddly enough... we have some that go against convention and don't follow the rule of NOT eating within 2 or 3 hours of bedtime. Instead they do the opposite and eat a bunch at bedtime.... maybe a sandwich or bagel or whatever... it fills their new stomaphagus and basically acts like a seal... keeping the acid and bile in their tummies so it can't come up towards their windpipe (trachea). If you come on our Zoom calls you can talk to these folks.
Gary
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1 ReactionHi Gary, Thanks for your input and invitation. I’ll look into your suggestions and discuss with my GP as scripts will be required. It sounds like ongoing high ppi doses are not uncommon. Regards Geoff
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1 ReactionHere's the one-touch Zoom link if you'd like to join us and just listen or ask away... we're just EC patients and caregivers tending to each other... we know a lot! Our 6pm Eastern calls on Wednesdays would be 8am Thursdays in Brisbane, or 6am in Perth. Look forward to meeting you and discussing reflux control... which we do discuss quite often.
https://us06web.zoom.us/j/4550284795?pwd=UjBHQ0J2V1pOc21SOExTR2N1UXNpQT09
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1 ReactionSame!!!! I'm struggling with being very angry with the surgeon for not giving us any real idea of just how horrendous the surgery and recovery are. My husband had Ivor Lewis about 10 weeks ago. You name it, he had the complication. I think knowing how grueling and life altering this surgery would be would have at least opened up the discussion of if it was worth the risk. My husband is currently in the hospital again with pneumonia. He also has an incessant dry cough since his stents (for 3 leaks) were removed 2+ weeks ago, which we're getting discouraged by this because no one know what is causing the cough and if it will go away. Every step forward includes 3 backwards. I wonder if he'll survive this surgery at the end of the day. I'm struggling with being positive and being realistic. Life is very hard right now.
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2 Reactions10 weeks is just barely getting started on the post-op journey... so what is needed is a new mindset. It takes a year (minimum) to two years post-op to get somewhat back to normal. My second year post-op was waaaayyy better than my first year! Hang tough... come see us on our Zoom calls if you have questions... starting in 5 minutes or so (9am Eastern) today... Sunday.
Gary
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1 ReactionHello from Tasmania, I fully agree with Gary’s comments above. I’m 15 months post surgery - the first few months were pretty tough - sometimes it felt like I would never recover. Slow, progressive improvement followed from there. It really took 12 months to recover fully or more accurately to a stable new norm. To tell you the truth, I’m very grateful to be around to suffer the relatively minor inconveniences that the surgery now entails. It sounds as though your husband has had a particularly bad run of complications and I’m sorry to hear that that has been the case. Age, weight and fitness are no doubt factors in tolerating the surgery. Not much you can do about age, but the other two are within everyone’s control - fitness / exercise and a healthy lifestyle really do help. Getting the renewed perspective and mindset Gary suggested might be very helpful to you both. Best of luck with your recovery. Geoff
Hi Gary, I tried to attend the Zoom meeting Wednesday 8am EST Australia but could not find the link yo sent me - IT not my strong suit. Could you please resend the link and EC meeting times. Thanks Geoff (from Tasmania)
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1 ReactionOur twice-weekly EC Zoom calls are as follows:
In America,
Wednesdays, 3pm for me in California, which is Thursday 8am for you in Tasmania.
And Sundays, 6am for me in California, which is Sunday 11pm for Tasmania.
Tasmania may move their clocks at different times than we do in America... so adjust for that when those Daylight Savings days happen. Here's the link:
https://us06web.zoom.us/j/4550284795?pwd=UjBHQ0J2V1pOc21SOExTR2N1UXNpQT09
Gary
That’s great, thanks Gary. Geoff