Mayflower18~Special ltr 4U w/multiple references re Esophageal Cancer & treatments for Dad's cancer

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
in Esophageal Cancer #1

Hello Mayflower

Pardon me for not getting back to you sooner, but I have so many thoughts after reading your letter posted here: https://csn.cancer.org/node/310084

There are so many things I would like to share with you that I’ve decided to post them on a separate topic forum for this reason.  It takes a great deal of time to compile good information, reputable web links and videos that will help each person.  Since your dad is diagnosed with Esophageal Cancer, I have read more about Squamous Cell Esophageal Cancer.  More people in Asia seem to have Squamous Cell than here in the states.  Most diagnoses in America are Adenocarcinoma cancers of the Esophagus.  However, the work-ups are the same.  After the cancer is properly staged a group of medical specialists determine a plan of action.  There’s one “little hitch” though.  The doctors have “seen this cancer before” but the new patient has not!  So while the doctors are confident of what they plan to do to treat the cancer—the “newbie”—not so much.  Everything usually happens so quickly and we are thrust into a world of cancer—a place we never wanted to be.  So bear with me as I want to share some information in the way of personal testimony and excellent web links that will help you to understand more about your dear dad’s cancer, together with some useful and informative videos.  For that reason I’m putting this on a separate topic forum so perhaps others that will also be searching for information about Esophageal Cancer may also be helped.     

First of all, you are wise to reach out to Esophageal cancer “vets” who have been through the battle, and “lived to tell about it!”  Trust me, if I could, I would be there holding your hand as you work your way through a maze of uncertainty.  Paul, Ed and I often respond to those who access this site hoping to find someone that is knowledgeable and has had experience with Esophageal cancer.  We are survivors. 

One of the first things I wanted to do after learning that my husband, William, age 65 at the time, (Now 80) had been diagnosed with Stage III Esophageal Cancer, (T3N1M0) was to talk to some survivors.  How did they fare?  What doctors were the most help?  What kind of treatments did they have?  What kind of surgery did they have and how did they feel after?  How did their life change as a result of this cancer?  Was my husband going to live or die?  You will go through a whirlwind of emotions, uncertainties and questions at first because you are walking with your Dad on a new path that “he has never taken you before!”

So before I go further, let me share with you some good news.  My husband was diagnosed with Adenocarcinoma at the GastroEsophageal junction (GE) in November of 2002.  His only symptom was a lone “hiccup” each time he first swallowed his first bite of food.  That was it!  So the long and short of it was we went to our Gastroenterologist with a hiccup and came home with Esophageal Cancer!

William underwent pre-op chemotherapy treatments of Carboplatin and 5-FU, along with 25 consecutive treatments of radiation.  He had his pre-op (neo-adjuvant) treatment here in our hometown in Virginia.  We traveled to the University of Pittsburgh Medical Center for a SECOND opinion.  We learned that Dr. James D. Luketich had pioneered a new type of Esophagectomy back in the mid-90s.  It is totally laparoscopic and consists of only small Band-Aid size cuts.

 William’s Ivor Lewis Minimally Invasive Esophagectomy (MIE) was performed on May 17, 2003, and today we are celebrating his entering his 15th year of survival.  He is still in remission.  Twenty-three (23) lymph nodes were removed for pathology testing during surgery.  None were found to contain cancer so no post-op (adjuvant) chemo treatments were required.  That was a grand report.  He is a “poster-child” for EC cancer because everything worked out so well for him.  He attends Esophageal Cancer support meetings monthly and is a source of inspiration for those in attendance.  Now “Mayflower”, while you will find me to be a realist and often speak bluntly, I want you to know that there are both failures and successes when it comes to Esophageal Cancer patients.  And each time we meet a “newbie” we pray that they will enjoy the same successes we’ve been blessed with.  And that certainly goes for your Dad. 

An EC survivor has the advantage of “hindsight”, and that’s why we want to share our experience and help others along the way.    We had no idea how our experience with Esophageal cancer would end.  Even at this moment, we cannot “put this cancer behind us once and for all” because the possibility of recurrence has to be included in the mix.  However, we put those thoughts on the back burner.  Life’s too short to waste it worrying about the future because we need to “soak up the sun that’s shining today!”  And yes, saying “Live one day at a time is easier said than done” when you have been diagnosed with any kind of cancer.  You will have to “fight fear” to keep it from taking possession of your mental faculties.  Someone has wisely said, “Worry is interest paid on a debt that is not yet due!”  So true. 

In Paul’s reply to you, he certainly brings up a valid point about having to have “adjuvant (post-op) chemotherapy and trying to recover from the Esophageal Surgery at the same time.  Those of us who have struggled with chemotherapy and radiation know that for most of us extreme fatigue accompanied by a myriad of unpleasant side effects has been our lot.  We long for a “rest period” in between treatments. 

Just a note here—following surgery, EC patients have to spend the better part of each day eating “mini” meals in order to sustain energy while trying to recuperate.  My husband’s first meal post-surgery was 2 tablespoons of Cream of Wheat. That’s because the stomach is now serving as the new Esophagus (gastric conduit) and its capacity is greatly reduced.  My reply to “DogSavr” which is in one of the links below, outlines the dietary plan for post-esophagectomy patients.  There is quite a “learning curve” adjusting to a new way of eating and sleeping, but in the end it’s all worth it to be a survivor!

Incidentally, at the end of the surgery, usually the doctor places a “J-tube” (Jejunostomy) feeding tube in the small bowel to help with nutrition.  Surely that will be the procedure in India as well. Link below is hel

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