I'm Scared!

HI Lisa,

I am so sorry to hear about your husbands diagnosis.  It is a very scary, horrible cancer.  My husband was diagnosed in May 2012 also Stage 3 and had pretty much the same treatment as your husband.  His surgery was August 30, 2012.  He had a minimally invasive esophagectomy.   He was 63 years old at diagnosis and has made a remarkable recovery.  He has remained cancer free since treatment and other than some adjustments for his new plumbing, he has returned to a fairly normal lifestyle.  

My husband would tell your husband that a positive attitude, laughter (even when you don't feel like laughing) and a top notch medical team are key.  We have been very fortunate and are enjoying life today, traveling some and spending time with grandkids.  

We wish you and your husband the best of luck on this awful adventure.  This cancer can be beat.  

Sally

Dear Lisa,

     Paul has given you some good advice.  I want to add only a few things from our own experience.  My husband was diagnosed with EC in March, 2013.  He was Stage II N0M0.  He went on a clinical trial.  So his treatment was 12 weeks of chemo and six weeks of radiation.  Your husband's treatment is somewhat different.  My husband was a "responder", meaning that post treatment PETs and CT scans showed large reduction in his original tumor.  There is no way to know, prior to treatment, who will be a "responder" and who will not - at least not now.  A lot of new cancer research is focused on determining the exact variation of EC each person has, so as to better select the chemo treatment.  

     My husband said the period after his treaatment, but prior to surgery is when he felt the best.  He regained most of the weight he'd lost prior to diagnosis and during treatment.  Just prior to surgery, your husband should have a new PET or a CT scan.  The results should be available the same day.  Ask her oncologist to explain the report for you.  This will tell you alot about where he stands going into the surgery, i.e.  Where you get the surgery matters a lot.  You want someone who specializes in this surgery and who uses a non-invasive, robot assisted technique.  Robot assisted surgery can be very precise, making much smaller cuts, with very little blood loss and a remarkably low infection rate.  It is not out of line to ask how many times per year your surgeon performs esophajectomies.   When I asked this question, I was looking for an answer of 40 or more times per year.  

     You don't mention a J-tube.  My husband got one prior to his chemo treatment and it stayed in past his surgery.  The care of the tube will be high priority and probably fall mostly to you.  J-tubes are finicky, they clog and they leak.  JTube care includes protecting the skin, which will be exposed to digestive secretions when the tube leaks.  You can ask your surgeon to refer you to an ostomy nurse.  This person was a life saver for us.  Ostomy nurses care for surgical openings all the time.  They can order ostomy supplies that are, believe me, very useful.  The one rub is that ostomy supplies are considered wound supplies, not surgical or oncology supplies.  Your surgeon or oncologist may have to prescribe them in order for them to be covered by insurance.

     Post surgery, my husband also experienced pain in his stomach and sometimes nausea after eating.  It varied from mild to absolutely flattening. He lost all the weight he regained after treatment but prior to the surgery.  He said, post surgery, that food became his enemy.  It is absolutely true that post surgery, his relationship to food and beverages (from water to alcohol) altered completely.  My husband discussed his after-meal problems with both his oncologist and surgeon.  It was the surgeon who prescribed medication to deal with the problem.  The medication worked.  He takes it prior to eating and the pain/nausea have not ceased, but are now under control.  It has made life alot easier.  We were also told, through a friend, that mints and gum containing xylitol had the unintended side affect of relieving this kind of pain.  We tried it.  The mints worked but not the gum. My husband uses the mints when he is snacking and starts to feel something in his stomach.  He is two years, post surgery, now, and he still struggles with weight loss and stomach pain.  

     Post surgery, your husband will also need to sleep at an angle and always on his back.  We just recently discovered that snorkeling and scuba diving brings up the acid from his stomach.  So, we have cut this activity out of our lifestyle.  I think, post surgery, it is very easy for EC survivors to lose muscle mass.  We are still trying to figure this out.  We think weight bearing exercises are one solution.

     I hope this helps.  Every person is different, so our experience may differ radically from yours.  My husband recently passed the two-year mark.  Honestly, we are scared every day.  We stay positive and take one day at a time.