I think that I have Esophageal Cancer, I am extremely scared

Hello “pcschultz”

Thank you for being so honest about your drinking.  Hope you won’t mind if I give a little “grandmotherly advice” along the way since I have grandchildren in your very age range.  You’ve probably been reassessing the priorities of your life by now since you believe there’s a possibility that you may have Esophageal Cancer.  It is good that you’re honest enough to tell me that you use alcohol.  Guess you know that alcohol is one of the culprits that is believed to be a strong contributor to Esophageal Cancer.  So I would say that you might want to reassess the wisdom of the use of alcohol.  Frankly I’ve witnessed a lot in my 78 years and I have yet to see the benefit of alcohol consumption.  I will say that the possibility of EC is a sobering thought.  Many a life has been ruined and a meaningful life forfeited by alcohol.  And so I do hope that you are not addicted at this young age.    

Now I will tell you that having monitored this site for the last 15 years that it is not unusual for someone your age to be diagnosed with this cancer, although it is diagnosed far more often in others older than you, and in more men than women.  Since I’m not one to mince many words, I will tell you that the symptoms that you describe are eerily similar to one who may be found to have Esophageal Cancer.  So at this point, I, for one, will not try to cheer you up by attempting to “reassure” you that you have nothing to fear.  You may—or you may not.  That’s an uncertainty at this point.  Knowing what I know, and what I know that other veteran survivors on this forum know, you are wise to have scheduled an upper endoscopy next Monday, April 10, 2017.  So I, for one, will certainly want to know the results of that test. 

Difficulty swallowing is certainly a frequent problem that finally causes a person to pay a visit to their doctor.  In my husband’s case, I noticed that he was consistently having one hiccup when he took his first bite of food.  After that, everything seemed normal.  He had no other symptoms that would lead me to think there was something wrong.  However, after observing this for a couple of months, I said, “We’ve got to go to the doctor and see what’s wrong with you.  I haven’t had the hiccups since I was a kid.” 

So off we go to see our wonderful Internist of 30 years plus.  We had absolutely no clue that a hiccup was a symptom of Esophageal Cancer.  We had never heard of that cancer.  Well, the Internist said, “I have no idea what your problem might be but I would say it’s most likely gastric related.  You need to be seen by a Gastroenterologist.  And so, he called up one of his cohorts and set us up an appointment for the very next day.  So on a November day, close to Thanksgiving, 2002, we find ourselves at a place we’d never been before, to see someone we had never met before, and had no clue as to what a Gastroenterologist would find. 

And probably anyone who has read any of my comments will already know this part of our story.  After the “upper Endoscopy” (which is only the beginning of tests if cancer is found), we came home not knowing any more than when we came.  The doctor, nor nurse, told us anything that day.  The nurse did say, “Now don’t let him drive for 12 hours or so, and he might have a sore throat.”  Okay that was no problem, and so we came home.  We were not overly concerned about the outcome of the test, it just seemed like a “routine” test to be sure “nothing was radically wrong!” 

Well, the next day my husband and I were both sitting at our computers, when the phone rang about 2:30 P.M.  I remember most every word, but the very first ones were the ones that sent SHOCK WAVES through me.  My heart sank to the floor, when the person on the other end said, “This is Dr. Ryan calling.  I do wish you had stayed around yesterday.  I needed to talk with you.  Your husband has cancer!”  Now that’s traveling at the speed of light, from a hiccup to cancer in 2 days!  Then I started asking questions and he answered truthfully with words I couldn’t even spell, much less understand the severity of them.  I asked, “How do you spell Esophageal?  Squamous?” 

So the following day, we returned to see our Internist because he wanted to see us as soon as the results were known.  As we sat at his desk, he placed a call to the Gastroenterologist and said, “Are you sure you have the right William Marshall?”  The answer came back in the affirmative first by the tears in our doctor’s eyes, and then in the words he shared.  From there, our world was turned upside down, and the trauma, the tears, the testing began.  Our calendar was filled with appointments with people we had never met before, and we had to place our lives in their hands.  I say, “Our” because I said, “When my husband has cancer, I have cancer.”  No doubt, others who have a spouse with cancer feel the same way.  Incidentally, my husband was 65 at the time and we were raising 4 grandchildren! 

So now that I’ve raised your anxiety level, I will tell you that our story has a happy ending.  After all the tests, his cancer was determined to be Adenocarcinoma at the Gastroesophageal junction.  (GE junction—the place where the lower end of the Esophagus and the stomach meet.)  It was considered to be in the advanced stage—that is “T3N1M0”. 

The “T” stands for tumor—the “N” stands for nodes—the “M” stands for metastasis which means spread to another organ.  For instance, when a person has been found to have the primary cancer in their Esophagus with some lung involvement, the name of the cancer doesn’t change.  In that case a person’s diagnosis would be Esophageal Cancer, Stage IV with metastasis to the Lungs.  That’s just an illustration.  But the treatment will be vastly different for a Stage IV diagnosis that involves one or more other major organs than for a Stage III or under. 

Well, “pcschult” now that I’ve done everything but put your mind at ease, I will tell you that my husband had a First and Second Opinion.  He had neo-adjuvant chemo of Carboplatin/5-FU and 25 rounds of radiation.  (Neo-adjuvant meaning “before” whereas “adjuvant” means after)  So at the end of his treatments his PET scan (part of the workup for suspected cancer) showed the tumor and the 2 local lymph nodes had been totally eradicated.  However, we had already been told by the thoracic surgeon, that even if the tumor had been totally eliminated that an Esophagectomy for removal of the diseased Esophagus would be necessary.  And now we understand why.  Sometimes the scan does not detect the full extent of the cancer, and during surgery more cancer may be detected.  And so we were prepared to go forward with surgery, even if all cancer seemed to have been eliminated.  Thank God when surgery was performed no additional cancer was found—nor was it found in 22 of the lymph nodes also removed for pathology purposes.  

Now, just in case you do have Esophageal Cancer, you need to know that there is more than one type of surgery to perform the Esophagectomy.  The best way is to find an excellent Thoracic Surgeon trained to perform the totally laparoscopic procedure known as the Ivor Lewis Minimally Invasive Esophagectomy.  It is called the MIE for short.  And may I say, “Liking your doctor and wanting to stay close to home” should NOT be the main criteria for where you have treatments!  That is unless you live close to a major medical hospital that performs the Minimally Invasive Esophagectomy as one of their “specialties”.  Why subject your body to large incisions, more pain and a longer recuperation period when it isn’t necessary?

My husband had his pre-op chemo/radiation treatments here at home, and then traveled to have his Minimally Invasive Esophagectomy at the University of Pittsburgh Medical Center on May 17, 2003.  The surgery was performed by Dr. James D. Luketich who pioneered this totally laparoscopic surgery back in the mid-1990s.  We are happy to say that just last week, my husband had his most recent PET scan as part of a semi-annual checkup, and there is still NO EVIDENCE OF DISEASE.  We are still celebrating our “resurrection” now almost FIFTEEN (15) years later.  William is now 80 years old. 

So first of all, I would love to hear that your Endoscopy did not reveal any Esophageal Cancer.  But secondly, if indeed you are found to be diagnosed with Esophageal Cancer, I would love for it to be in the early stages.  Third—I would wish for you every success and some 15 years down the road when you’re at the ripe old age of “44”, you will be sharing a positive story with a happy ending with others who will surely be writing here and needing help. 

Loretta- William’s wife

1. http://csn.cancer.org/comment/1548791#comment-1548791

(Here is a letter that I wrote to “mister_eko”.  He has since had a successful surgery, this much I know, but he hasn’t kept in touch.  By the way, if you click on the picture or the user name in the “blue block” on the left side of the topic under discussion, you will be able to see if the person has told us anything “about themselves.”  In your case, as in most others, I only see the date you joined which is today.  If you post in the future, I will be able to see the last time you were reading on this site.  Often people are reading, but not necessarily posting anything.  I will tell you that personally, I wish the people who write on here would check back in from time to time to let us know how things turned out.)

_________________________________________________________

 2.  http://csn.cancer.org/comment/1539581#comment-1539581

3.  http://csn.cancer.org/node/303304

I just got done fighting a different cancer and that is what brought me to this cancer site.  I am on here quit regulularly for my other cancer but i just went into have an endoscopy this week and have been doing an endoscopy every three years for about 10 years.  This is because about ten years ago i kept getting food stuck in my esophigus.  It did take me a while to finally get it checked out but i am sure glad I did.  After my first endescopy my doctor found what was called barrets desease.  He also called it pre cancer.  It wasnt cancer it was pre cancer.  I was put on the prescription medicine for prilosec.  I have it checked every three years.  Even last weeks edoscopy didnt have cancer.

Go get it checked out by a doctor.  You never know

Sounds a bit like Achalasia to me. I started with it as a teenager. I had surgery for it at 21 with mixed results and was a force feeder told I got Stage III esophageal cancer at 56. Then had Ivor-Lewis, chemo and radiation. It's 11 years later and I continue to have multiple problems. I think you shoul approach your gastro about Achalasia. It's rare. Good luck. Swallowing problems are so difficult.