Tumor in the esophagus

Hello Sun,

I'm sorry you find yourself here.  I want to make a few points that may be useful to you.  First, the folks on this forum are not medical professionals.  We have lived through our own EC journey, but nothing you hear here should replace the counsel of actual oncologists.  Speculating on your cousin's prognosis with practically no information (like you've presented) would be irresponsible.  Speculating on your cousin's prognosis even with full information would also be irresponsible on our part, as no one here is an oncologist.  Even a qualified oncologist wouldn't speculate about your cousin online.  I know I have been given a 7-8 month prognosis by a world class oncologist and she was off by a lot.  That was 2011 and I just got back clean PET/CT results Tuesday.  I'm unfamiliar with Indian hospitals and the Indian health care system, but a second opinion is almost always a good idea.  You can compare different ideas and approaches and figure out what will work best for you.  If both places agree exactly, you are at least likey to know exactly where you stand.  One thing I always advise people in this situation is to make sure you are at a good hospital with good doctors.  It is a mathematical fact that half of all doctors and hospitals are below average.  The most important thing in your control is that you can get to the other half.  EC is serious business.  It shouldn't be treated by the hospital down the street because it's convenient.  It's worth some inconvenience to get to better doctors at a better hospital.

A last tidbit is my usual rant.  Please make sure your cousin is tested to determine his HER2 status.  It can be critically important.  That is why I have beaten back stage IV EC.  

Best Wishes,

Ed

Dear Sun ~

Say no more “Sun”—we know how devastated you are.  I will agree with Ed that we are not medical professionals, but many here are long term survivors.  Not being familiar with health care costs in India, I couldn’t begin to tell you where to go for a 2^nd opinion, but I would strongly advise that you see if your cousin can get one.  I do note that according to info on the web that Tata Memorial Cancer Center in Mubai treats 60% of their patients for free.  It is a “government hospital”.  As such one can easily understand that no doubt it is taking a long time for your cousin to be tested in the proper way.  Adequate and expedient testing is the name of the game when one is known to have a tumor in the Esophagus.  First it has to be “staged” and that requires several tests even before one can begin to know how to treat it.  I will attempt to answer your 3 questions in this manner.

1. You ask, “Can the experts on this forum speculate on his prognosis, cure, etc.”  That’s an “easy NO”.  But do we have lots of success stories here.

2.  You ask, “Is it necessary to rush him through surgery at other place/hospital as tests are getting delayed at Tata's?”

Answer right off is “NO”, it would be most unwise to “rush him into surgery at another hospital for this reason.  Tests need to be completed prior to treatment of any kind.  Sometimes a surgery is warranted, depending on the stage, and sometimes surgery is NOT possible if cancer is found in more than one major organ.  The word is metastasized meaning spread.  It would then be classified as Stage IV and here in the states, only “palliative measures” are prescribed—mainly radiation and chemotherapy.  So surgery without knowing the extent of the cancer would be unthinkable.

However, there can be cancer also detected in the lymph nodes, but the location of the cancerous nodes will make all the difference in how the cancer should be treated.  If all the nodes are “local” to the Esophagus and not found in any other major organ, then there’s a good possibility that chemotherapy and radiation can eradicate them. 

In the case of my husband, his Stage of cancer was Stage III.  (T3N1M0)  Now I know that this means nothing to you at present just as it did us.  We didn’t know anything about Esophageal cancer. It was a total shock to us as well because he only had a persistent hiccup each time he began to eat.  His cancer was located at the junction where the stomach and the esophagus meet.  The official diagnosis was “Adenocarcinoma at the “Gastroesophageal junction” AKA “GE” junction.

Knowing what I know now, I would NOT have him go “under the knife” without knowing exactly what the surgery was intended to accomplish.  As a matter of fact, we were so anxious to “get on with surgery” that we almost refused to undergo neoadjuvant (before surgery) chemo and radiation.  Little did we know that the choice was not open to us.  Our thoracic surgeon said we should first consult with an oncologist to see what the best options were.  We now know, what we did not know then.  Clinical trials here in the states indicate that the “tri-modal” approach that consists of “pre-op” (neoadjuvant) chemo/radiation and then surgery is the preferred approach for the best outcomes.  The chemo and radiation work together to shrink and/or totally eliminate the tumors.  Nevertheless, even if pre-op chemo/radiation did fully eradicate the tumors as far as scans go, often there is some residual cancer too small that is still present in the Esophagus, even though the scans showed “complete eradication.”  And for that reason, it would be most unwise to not proceed to surgery once the pre-op treatment is completed.   

In my husband’s case, we “wised up” to the fact that the thoracic surgeon and the oncologist had a better idea than did we.  He had the pre-op workup plus the surgery.  He has been the model student for an Esophagectomy.  He underwent a laparoscopic Ivor Lewis Minimally Invasive Esophagectomy (MIE) at the University of Pittsburgh Medical Center in Pittsburgh, Pennsylvania.  There a Dr. James D. Luketich had pioneered the least invasive procedure that consisted of small band-aid size incisions.  My husband was diagnosed at age 65 and had his surgery on May 17, 2003.  He is now 81 and still cancer free—so there are success stories. 

So the most I can say is that since the Tata Center seems, shall I say, overloaded with patients that cannot afford to pay for their illnesses, I can easily understand the DELAYS!

So in that regard, if your cousin has the finances, and there are other hospitals that have a good track record for treating Esophageal Cancer patients, I would not hesitate to suggest he make an appointment for a SECOND opinion ASAP.

Might I make a suggestion?  If I were you, I would not be at all hesitant to call UPMC and speak to someone in Dr. Luketich’s office.  I would relay the story you have told us about your cousin and I would ask if he had a recommendation as to what doctors and what hospitals in India were best known for treating Esophageal Cancer patients.  Dr. Luketich is world renown and I’m sure he knows thoracic surgeons in India.  That is the key—who is best at treating Esophageal Cancer? This is MAJOR SURGERY and not to be undertaken by just any physician that calls himself a “surgeon!”

3. You say, “Any other information will be very useful and helpful.”  So in that regard, I would share with you several good sites here on the web that will tell you all you need to know.  And since my letter is already lengthy, let me just give you the link that I recently shared with another patient’s family member.  https://csn.cancer.org/node/317799

It seems the doctors were not telling them much of anything, and they didn’t know what questions to ask.  So please see this link and “consume as much of it as you can” in order to get the very best help for your cousin.  All of us who write regularly on this site are hoping that by “doing your homework” you will be better equipped to help your cousin make the best choices.  And we certainly hope that his cancer will be one that, when properly staged, will be one that can then turn out to be a story of success.  Now don’t get me wrong, it is a circuitous route, often the treatments prior to surgery are “daunting but doable”, so it’s not a “piece of cake” but there can be quality life after an Esophageal Cancer diagnosis.

We all know that a wonderful husband to his wife and 2 lovely young children are to be treasured.  We pray you and your cousin can get the proper treatment at the very best place and go on to live out a normal life span. 

May God give you wisdom to know where to go.

Prayerfully,

Loretta (& William)

P.S.  Incidentally, I always use a conversion chart to equate centimeters to inches.  5 1/2 centimeters = 2.16535433 inches

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1.     https://csn.cancer.org/node/317799

"ttsqky"~Things your doctors should B telling U & all new patients about Esophageal Cancer @ any stage

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2.     http://hillman.upmc.com/find/providers/james-luketich-439

Biography

“James D. Luketich, MD, is the Henry T. Bahnson Professor of Cardiothoracic Surgery in the Department of Cardiothoracic Surgery at the University of Pittsburgh School of Medicine, chairman of the Department of Cardiothoracic Surgery at the University of Pittsburgh School of Medicine, chief of the Division of Thoracic and Foregut Surgery at the University of Pittsburgh School of Medicine, director of the Thoracic Surgical Oncology program at UPMC and co-director of the Lung Cancer Center at UPMC. He specializes in all areas of thoracic oncology, including lung cancer, mediastinal malignancies, and esophageal cancer, as well as multidisciplinary management (combined chemotherapy/radiation/surgery) of esophagogastric carcinoma and lung cancer, and benign esophageal disease.

Dr. Luketich is board-certified in general surgery and thoracic surgery. He completed an undergraduate degree at Old Dominion University, Norfolk, Va., a master's degree in biochemistry from Vanderbilt University, and received a medical degree at the Medical College of Pennsylvania, Philadelphia. Dr. Luketich graduated medical school Magna **** Laude at the top of his class, being inducted into AOA his junior year, and graduating with the Surgery Award, the Medicine Award, the Endocrine Award, the Dean's Award, and the AOA Research Award. Dr. Luketich completed a residency at The Hospital of the University of Pennsylvania in Philadelphia, and fellowships in thoracic and cardiothoracic surgery at Cleveland Clinic in Ohio, Cornell University Medical Center, New York, and Memorial Sloan-Kettering Cancer Center, New York…”

2 Related Locations

• UPMC Hillman Cancer Center

Hillman Cancer Center

o    5115 Centre Ave.

o    3rd Floor

o    Pittsburgh, PA 15232
(412) 647-7555

• Department of Cardiothoracic Surgery, Division of Thoracic Surgery

UPMC Presbyterian

o    200 Lothrop St.

o    Pittsburgh, PA 15213
(412) 647-7555

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