I'm Scared!

Rockwallrich

My husband was diagnosed March 20, 2015 with T3N1M0 esophageal cancer. He just completed 28 days radiation, and 6 rounds(1 per week) of chemo. He is 51 years old and his tumor is 10cm at the base of the esophagus, none in stomach. He did have 2 lymph nodes that were positive. He will be having the Esophagectomy surgery in July. I would love to hear from somebody who has had this, and any suggestions for pre surgery preparations and post surgery advice. We are still in shock and want every chance for survival.

Thank you,

Lisa

We are being treated at Baylor Medical Center in Dallas, Tx.

Sammons Cancer Center

Sally.L

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

 

paul61

Sally.L said:

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

 

I had this surgery

Hi Lisa,

I had an esophagectomy with gastric pull up in December of 2009. I had the Ivor Lewis procedure (also called the “open surgery” procedure). I am thankful to say that over 5 years later I am enjoying my life with a few minor lifestyle adjustments. So far my scans and endoscopies have been clear.

In terms of preparation, I would suggest getting as much exercise as possible and once your husband has recovered from chemotherapy and radiation therapy; eating as much as possible to gain weight and strength. Most people who have this surgery lose a fair amount of weight during the time they recover from surgery and adjust to their new digestive system. Your husband is young, so that certainly works in his favor. It is proven that, the better physical condition a patient is in going into this surgery, the faster the recovery time after surgery.

After my surgery I spent three days in the intensive care unit, and seven additional days the thoracic surgery unit before I was discharged.  Two of the risk factors that are prevalent after this surgery are cardiac arrhythmia and pneumonia. They keep patients in ICU the first few days to insure if these issues occur they can respond very quickly. Luckily my time in ICU was uneventful.

They typically do an excellent job of pain management using both an epidural spine block and IV medication so I really had very little pain while I was in the hospital. Most surgeons do not allow any food or liquid my mouth for at least 5 days. This gives the anastomosis (the point where the resected stomach joins the remainder of the esophagus) time to heal. They then do an X-ray “sip test” to insure there are no leaks and assuming all is well, they will start him on a liquid diet.

I also had a “j-tube” (jejunostomy feeding tube) inserted during my surgery. This small tube goes directly into the small intestine and allowed me to augment my liquid and soft food diet with IV feed formula that was fed by a small pump during my sleep. I gradually progressed from liquid and soft foods to “normal foods” over a three month period. I have learned to eat very small amounts seven times a day. It took about a year for my new digestive system to get adjusted to the point that I could eat all the foods I liked with no issues.

Many patients have something called “dumping syndrome” shortly after surgery. This is caused when food moves too quickly from the stomach to the small intestine. Symptoms are nausea, dizziness, and diarrhea. The good news is that this does get better with time and the adjustment of his new digestive system. But it means that for the first few months certain foods (particularly dairy and foods high in sugar content) should be avoided. Over time he will find that he can eat larger amounts and more variety of foods but initially things that are high in protein and easy to chew and digest are best. In fact I learned to enjoy smoothies made with various kinds of fruit and protein powder to augment my calorie intake.

Your husband will need to eat slowly and chew thoroughly to avoid digestive issues with his new digestive system. Eating too fast or not chewing foods completely results in abdominal pain and sometimes diarrhea.

Recovery from this surgery takes time, but patience and taking things “one day at a time” are the best approach. 

This is MAJOR surgery but with time and some minor lifestyle adjustments (smaller more frequent meals and finding the foods that need to be avoided) life goes on.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Four Year Survivor

 

Rockwallrich

paul61 said:

I had this surgery

Hi Lisa,

I had an esophagectomy with gastric pull up in December of 2009. I had the Ivor Lewis procedure (also called the “open surgery” procedure). I am thankful to say that over 5 years later I am enjoying my life with a few minor lifestyle adjustments. So far my scans and endoscopies have been clear.

In terms of preparation, I would suggest getting as much exercise as possible and once your husband has recovered from chemotherapy and radiation therapy; eating as much as possible to gain weight and strength. Most people who have this surgery lose a fair amount of weight during the time they recover from surgery and adjust to their new digestive system. Your husband is young, so that certainly works in his favor. It is proven that, the better physical condition a patient is in going into this surgery, the faster the recovery time after surgery.

After my surgery I spent three days in the intensive care unit, and seven additional days the thoracic surgery unit before I was discharged.  Two of the risk factors that are prevalent after this surgery are cardiac arrhythmia and pneumonia. They keep patients in ICU the first few days to insure if these issues occur they can respond very quickly. Luckily my time in ICU was uneventful.

They typically do an excellent job of pain management using both an epidural spine block and IV medication so I really had very little pain while I was in the hospital. Most surgeons do not allow any food or liquid my mouth for at least 5 days. This gives the anastomosis (the point where the resected stomach joins the remainder of the esophagus) time to heal. They then do an X-ray “sip test” to insure there are no leaks and assuming all is well, they will start him on a liquid diet.

I also had a “j-tube” (jejunostomy feeding tube) inserted during my surgery. This small tube goes directly into the small intestine and allowed me to augment my liquid and soft food diet with IV feed formula that was fed by a small pump during my sleep. I gradually progressed from liquid and soft foods to “normal foods” over a three month period. I have learned to eat very small amounts seven times a day. It took about a year for my new digestive system to get adjusted to the point that I could eat all the foods I liked with no issues.

Many patients have something called “dumping syndrome” shortly after surgery. This is caused when food moves too quickly from the stomach to the small intestine. Symptoms are nausea, dizziness, and diarrhea. The good news is that this does get better with time and the adjustment of his new digestive system. But it means that for the first few months certain foods (particularly dairy and foods high in sugar content) should be avoided. Over time he will find that he can eat larger amounts and more variety of foods but initially things that are high in protein and easy to chew and digest are best. In fact I learned to enjoy smoothies made with various kinds of fruit and protein powder to augment my calorie intake.

Your husband will need to eat slowly and chew thoroughly to avoid digestive issues with his new digestive system. Eating too fast or not chewing foods completely results in abdominal pain and sometimes diarrhea.

Recovery from this surgery takes time, but patience and taking things “one day at a time” are the best approach. 

This is MAJOR surgery but with time and some minor lifestyle adjustments (smaller more frequent meals and finding the foods that need to be avoided) life goes on.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Four Year Survivor

 

I read this to my husband, it

I read this to my husband, it was extremely encouraging. 

Thank you so much for your feedback, knowing what to expect is so helpful. 

Best Wishes for your continued success in beating this!

Lisa

Rockwallrich

Sally.L said:

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

 

I can't tell you how much it

I can't tell you how much it helps to hear that stage 3 can be beat. Thank you for your feedback and for the encouragement! It's nice to hear that there is hope!

Lisa

JKGulliver

Our experience

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.