Dx and operation

Lee~Helpful info from William Marshall-in 14th yr of survival

Well good evening Lee:

Looks like you and my husband have some things in common.  He was 66 when first diagnosed with Adenocarcinoma at the Gastroesophageal junction (T3N1M0).  Am happy to tell you about “our” experience as an Esophageal Cancer survivor now into the 14^th year with no difficulties.

My husband only had a hiccup, but when we went for an Endoscopy that word “HICCUP” suddenly changed and was spelled “CANCER”.  From there we had two opinions.  First my husband had pre-op chemo of Carboplatin and 5-FU, and 25 radiation treatments, which totally eliminated all visible signs of the cancer.  However, we knew from the start that an Esophagectomy would be necessary because sometimes there will be cancer too small to be picked up on a scan, but is sometimes detected during the surgery. 

We had two opinions, the SECOND one being at the University of Pittsburgh Medical Center.  Dr. James D. Luketich performed an Ivor Lewis Minimally Invasive Esophagectomy.  During the procedure, 23 lymph nodes were removed for biopsy, and none proved to contain cancer.  That was a blessing, so NO post-op chemo was prescribed.

My husband was in the hospital for only 5 days total.  One day was in ICU, the second in a step-down unit, and the 3^rd day on the regular floor.  On day 4 he had a Barium swallow test to be certain the anastomosis (place where organs are rejoined) had “no leaks”, and on Day 5 he was discharged.  We were downtown Pittsburgh shopping on Day 8.

Of course, during surgery, a J-tube was implanted in order to provide nutrition because the food intake will be very limited.  Two tablespoonsful of Cream of Wheat was my husband’s “first meal” and he was “full.”  The J-tube is great and you needn’t be in a hurry to have it removed, because you will lose a good amount of weight, due to limited intake of food.  My husband lost 60# the first year, and it didn’t level off till almost a year.  So if you’re already thin, you will be thinner still.  However, my husband was “fat” at 275, and 6 ft. tall.  So he was just down to a nice size, and has maintained a 205-215 wt. level since then. 

And as for servings of food, you will eat many “mini” meals a day, and don’t drink liquid with your meals because your “intake capacity” will be very limited.  And you’ll find yourself eating all day long.

And it will take some time for your stomach and “insides” to adjust to the parts that have been “rearranged”, and often you will experience a time afterwards of what we commonly refer to as “dumping.” I won’t go into detail about that now, but MOST patients go through that “uncomfortable” period of time.  Let’s just be frank, it’s sort of like when one has diarrhea.  Bowel movements will be irregular at first, and not a pleasant experience.   But hey, you asked for it, Lee, and I’m just telling you what you will experience most likely, but it will take care of itself in due time, but at the first it will not be a pleasant time.  You know it’s often said when you attend some function, be sure you pay attention to the “EXIT” signs, well I’ll warn you to be sure you know where the “RESTROOM” signs are too!  Enough said.

But my husband had no complications during, or after the surgery.  His time in the OR was 7 hours, although that will vary with each individual.  As for pain, the pain the first day was “INTENSE”.  But you will have a morphine pump and you can press it anytime you need to and if that doesn’t fill the bill, a nurse will come in and give you something in addition to that.  He had no infections, and we couldn’t be happier.  Of course, it’s easy to write this letter, “after the fact”, but believe me the whole experience from diagnosis to recuperation is a time of wondering what might happen when, because you’ve never been here before.

You sound, “well prepared” since you will be having the very best surgery, that being the Minimally Invasive Esophagectomy.  Dr. James D. Luketich pioneered this laparoscopic procedure back in the mid-90s and it’s now the surgery of choice at the University of Pittsburgh Medical Center (UPMC.)  Rarely does Dr. Luketich have to revert to the “open” procedure, known as the TransThoracic Esophagectomy (TTE).

Moreover, he makes an incision on the right side of the chest lower down where the diseased Esophagus is removed.  Originally, this small incision was made in the neck area.  That was where my husband’s incision was back in 2003, but Dr. Luketich has now chosen to remove it at a place lower down.  This lessens the chance of damaging any pharyngeal or laryngeal nerves that are so sensitive and can sometimes be damaged during an Esophagectomy.  So you’re having your entire Esophagus removed, and reattached at the pharynx.  That’s how my husband had his removed.  Sometimes some surgeons only remove a portion of it, but I would choose to “take it all out.”

Now, you will be sleeping in an elevated position from now on.  Once a guy said, “I don’t think I’ll have the surgery if I’ve got to sleep in a semi-upright position the rest of my life.”  I thought to myself, “Well looks like you’ll have two choices, one being lying flat forever because you’re not going to live very long if you have Esophageal Cancer and elect to not have surgery, or you can have the surgery and hopefully have many good years to follow.

Now my husband sleeps on a foam wedge, but there are beds that can be purchased if that is more to your liking.  And since this will be necessary to sleep this way from now on, the doctor can write a prescription if you want to purchase a bed.  However, insurance companies will have special vendors that they choose to use, so if you go that route, be certain to check with your insurance company and see the exact protocol for purchasing one.  Don’t bother to get “bed risers” unless you want to end up at the “foot of the bed each morning.”  J

Now Lee you could tell us where you’re having the surgery, and who your Thoracic surgeon is.  Sixty-six is definitely not too old to have this surgery, and I hope you will have many years of a great quality of life. 

 Now there is one more possibility, so I will mention it here.  A couple of weeks after my husband’s surgery, he began to have a dry cough and clear his throat quite often.  He had no other symptoms but mentioned it to Dr. Luketich during the checkup.  Dr. Luketich explained that sometimes a “dilatation or dilation” of the new gastric tube was necessary.  He explained that where the two organs are rejoined (anastomosis) sometimes a tiny ridge of scar tissue will build up inside the tube.  And sometimes a piece of food or liquid will lie around the edge instead of proceeding straight down.  So Bill was given mild sedation and the area was stretched slightly.  This is best performed while the tissue is soft and pliable.  And it is delicate tissue.  This happened again one more time during the first 6 months, and it has never been a problem since then. Dr. Luketich said it was quite common for this to occur.  He described it as a “cup & saucer” effect.  So if you picture a cup in your mind’s eye, and see the saucer around the edge of the cup, that is how the tiny ridge of scar tissue can form on the inside the new gastric tube.  So if you should develop a cough, or have any difficulty swallowing, you will want to mention this to your doctor.  And by the way, we would like to know what Stage you are, and what pre-op treatments you were given just for our own info. 

You will want to read some of the references below to let you know more about what to do post surgery.  So let’s hope you do as well as my husband, and “live happily ever after.”  If you want to talk to my husband, William, send me your phone number via private message, and he will be glad to share even more with you.  So you might just call this letter a “teaser.”  And if you’re married, knowing what to expect if things go as they should, will give both you and your wife great peace of mind, even in the midst of the anxiety that naturally accompanies a cancer diagnosis.  Even though statistics are grim for Esophageal Cancer survival because many present with a Stage IV diagnosis from the very beginning, being able to be a “surgical candidate” is a blessing indeed.

Lastly, I’ve put your name on the calendar for July 13^th.  You should do fine—it’s on a Wednesday and not a Friday!  J We will remind the Lord, as if He didn’t know already, that you’ll be needing His blessing, especially that day.  We’ll pray that the surgeon has had a good night’s sleep.  However, your diet will start about 3 days prior to surgery and will be “light” and “clear”, etc.  And on the eve of your surgery, you will have some kind of liquid to drink that will “clean you out.”  Ironically, what my husband drank was called, “Go Lightly!”  Now that’s the exact opposite of what you will experience.  If you’ve ever had a “colonoscopy”, you’ll get the idea! 

So be encouraged by our letter, and we’re hoping that you will have a successful Esophagectomy, and many years of a cancer-free life.

Wishing you all the best Lee,

Loretta (Wife of William Marshall, who had a successful MIE on May 17, 2003 by Dr. James D. Luketich @ UPMC.  William is now into his 14^th year of survival with no evidence of disease.)

P.S.  I have a good friend who answers lots of questions here as well.  His name is “Paul61”.  In addition to the UPMC post-op diet, Paul has additional tips on how to eat after the surgery.  One thing for certain, you don’t want to eat anything and then lie down.  Moreover, your last food should be eaten 3 hours prior to bedtime, if you don’t want to wake up during the night with a form of reflux.  Your stomach will tell you not to eat so much right before bedtime.  You’ll soon learn the routine.

1.  http://csn.cancer.org/node/301730

 Discussion on this forum discussing adjustable beds

2.  http://csn.cancer.org/node/298089

Another forum discussion about what to expect after surgery

3.  http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

“…What can I expect after surgery?

For the first few months after surgery, you may have problems such as:

Weight loss

• Dumping syndrome (nausea, diarrhea, abdominal cramping, light-headedness)

• Excess gas

• Trouble swallowing

  Your diet plan after surgery is designed to lessen your discomfort and allow you to enjoy eating.

  What type of diet will I have?

  You will have several types of diet. Your diet will change slowly based on your rate of recovery and how well you can tolerate food. The amount of liquids that you are permitted to have at one time will vary based on your doctor's recommendation. In general, your diet plan will advance as follows:

1.     Clear liquid diet, for the first few days after surgery

2.     Full liquid diet

3.     Soft diet…”

 

4.  http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx

Dumping Syndrome Diet

“Dumping syndrome sometimes happens after stomach surgery.

Dumping syndrome is caused by large amounts of food passing quickly into the small intestine. This causes symptoms like abdominal pain, cramping, nausea, diarrhea, dizziness, weakness, rapid heart beat, and fatigue. This diet will help stop the symptoms of dumping syndrome….”

5.  http://www.oncolink.org/coping/article.cfm?c=3&s=64&ss=158&id=989

Post-Esophagectomy Diet

“Esophagectomy is a surgery to remove all or part of the esophagus, which is the tube food moves through on its way from the mouth to the stomach. When the esophagus is removed, the stomach is pulled up into the chest and reattached to keep the food passageway intact. This stretching of the stomach takes away the ability to eat large meals, as there is no longer a large "holding area" for food to be digested. Nutrition is an important part of healing and preventing weight loss after surgery. Patients can experience nausea, vomiting, acid reflux, and dumping syndrome. This article will review some ways to decrease these symptoms. Check with your healthcare team for specific recommendations for your case.

After the surgery, the remaining esophagus may not be able to move foods as easily from your mouth to your stomach. Certain foods can block the esophagus or be difficult to swallow. Some people complain of food "sticking", or have midsternal (behind the breast bone) pain. This may be prevented or resolved by sipping fluids when eating solid foods, chewing foods well, eating soft or chopped foods and avoiding tough, gummy, or stringy foods.

You may also get gastroesophageal reflux symptoms, such as heartburn and reflux of stomach contents, causing intolerance to certain foods, especially acidic, fatty, and very hot or very cold foods. Gas and bloating sometimes occur after surgery. Therefore, you may wish to avoid foods that are known to cause gas.

Each person is different and will tolerate different foods. Only you can decide which foods 'agree' with you and which don't. Below are ideas that may help you to manage your symptoms. The most important guide is how you feel after eating a food…”

______End of references__________