Cancer Survivors Network

Dear Sanjeev:

You have come to a good site. We have patients and caregivers on this site. All are interested in the same thing. Where are the best doctors? Whom can I trust? What should I do first? Am I or my loved one going to live or die? Just what is Esophageal Cancer anyway?

First, let me tell you that "there is life after Esophageal Cancer", but you must be the one to aggressively pursue the answers. That is, even though, you do not know what questions to ask.

Without being repetitious, if you will key in the "Search block my name "WilliamWMarshall", you will see lots of postings of things other patients have asked about. I am a seven-year survivor of Esophageal Cancer Stage III. If you are like I was at the first, I hardly knew how to spell "ESOPHAGEAL", much less know what Stage 3 was. The only "stage" I was used to knowing about was when I saw actors or musicians on a stage.

Well, for starters - and I hardly know where to begin, I am wondering what are your choices as a citizen of India?

Here in America when we have a persistent pain, we go to see our private doctor, generally. Some people do not have private doctors but there are public health hospitals that accommodate some. Sometimes people go to the Emergency room at a hospital if they are in pain and do not have a doctor of their own. From there they are referred to some other medical facility, once they have been treated initially. Here in America, no one is turned away from a hospital because they have no insurance. But the private doctors do ask for payment either from the patient directly or an insurance provider. We purchase insurance from multiple companies who operate to provide medical insurance. The price varies, depending on the policy we choose and our ability to pay of course.

My difficulty in talking with you will be that I do not know how you as a citizen of India choose your medical care. Is it all provided by the government, unless you can afford additional insurance? It sounds like you may have a "government plan", with the option of purchasing insurance from a private company. In either case, this is what my course of action was when I received my diagnosis.

Being brief is not my style, so be prepared to spend some time reading this. I suggest you print it out. I am not an authority, just an inquisitive patient, who wants to know all I can about Esophageal Cancer and then pass it along to others. I only reference reputable sources. Others who read your posting will have different things they would like to say.

First – How did I come to know I had Esophageal Cancer? I had a persistent hiccup. It only occurred once and when I ate. After 2 or 3 months of this, my wife insisted we go see our good "Internist" that had treated us for the last 30 years, Dr. Wadi Acra.

Second – He was the type of doctor who never hesitated to say what he "knew or didn't know" and was never remiss in referrals. In this case, he had no idea what might be wrong and suggested I have an ENDOSCOPY immediately. He called and set up an appointment with a GASTROENTEROLOGIST.

Third – I had an Endoscopy within the next couple of days. Results show ESOPHAGEAL CANCER.

Fourth – I was referred to a THORACIC SURGEON who explained the whole operation to me in detail. I am going to be very frank. There was no stage of “denial” in my case. I believed everything the doctor said. He said it was one of the worst operations one would ever want to have. I will not elaborate more at this time, because you will be overwhelmed with things that must be taken in their order and one day at a time.

Fifth – My Thoracic Surgeon told me that he recommended CHEMOTHERAPY and he was going to put me in touch with one of the best ONCOLOGISTS in town. That turned out to be the best advice I was given. Although at first I was reluctant to receive the chemotherapy treatments because I had heard such horrible stories. Now brace yourself, there are horror stories. For some the side effects are horrendous, for others they are mild.

Sixth – I finally agreed to go see my local ONCOLOGIST who recommended aggressive treatment. Now by this time, I had already undergone several testings with Cat Scans and Pet Scans and EUS (Endoscopic Ultra Sound), etc. to determine exactly to what level of penetration the cancer had advanced. So before you can know exactly how your cancer is to be treated, you must have these extensive tests to determine how far the cancer has infiltrated the Esophagus and/or other organs or lymph nodes. This is extremely important. This is known as STAGING.

Stages run from up “0 to IV”. As the number increases, the severity of the cancer increases. Thus it is very important to know if the cancer is found only within the ESOPHAGUS itself or has advanced to other organs as well. The stages are always written in Roman numerals, but it is also is expressed in "staging" terms. My stage was Stage III, (T3N1M0) That meant that the cancer had infiltrated all the muscular layers of my Esophagus, with infiltration of one lymph node (N1) near my Esophagus, but had not metastasized (M0) to any other organ. Believe me that is a good diagnosis, if one must have cancer of the Esophagus. The further the cancer is spread, the more difficult it is to curtail. Most often Stage III is considered operable.

In Stage IV, there are 2 different levels, but I will not go into detail here except to say this. Sometimes a Stage IV patient can have an operation if lymph nodes are found to be "near" other organs, but not yet penetrated the actual organ itself. I have not personally known any Stage IV patient to have an operation when the cancer had ALREADY PENETRATED ANOTHER MAJOR ORGAN. I have read of some who have had successful chemo and/radiation treatments who were diagnosed Stage IV, and subsequently were able to have an operation. Still others are diagnosed as Stage IV and told that they will not be able to have an operation. So it will vary depending on where the cancer is found and the depth of penetration. That is up to the doctor and the patient to decide what they want to do. Some want to only opt for PALLIATIVE treatment to try to contain the spread of the cancer.

I will tell you that from all I have observed, and what my Oncologist first advised, that those patients who choose to have chemotherapy and/or radiation first seem to fare better than those who go directly for the operation without the benefit of pre-op treatments. Clinical trials seem to bear out this as well. It seems that the mortality rate is decreased with a combination chemo/radiation pre-op treatment. This web link details many of the things that will be beneficial to you.

This is a precise document from the NATIONAL CANCER INSTITUTE – HEALTH PROFESSIONAL VERSION that, among other things, explains in detail the staging of Esophageal Cancer, the best tests to determine the extent of the cancer’s intensity, results of clinical trials. If you study this in detail, you will have more questions than your doctors can probably answer! It was updated July 2, 2009. I suggest you print it out, extensive though it is. Highlight the parts that pertain most to your case. If you have not had extensive testing to determine the stage prior to radiation, I question the wisdom of your physician. This is a very inclusive summary of Esophageal Cancer. I will include another reference that is not as advanced, but serves as a primer for those wishing to know more generalized info, but at the same time very accurate.
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Here is that website link for the extensive summary from the Cancer Institute.

http://www.cancer.gov/cancertopics/pdq/treatment/esophageal/healthprofessional/allpages/print#Section_12
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“Purpose of This PDQ Summary

This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about esophageal cancer prevention. This summary is reviewed regularly and updated as necessary by the PDQ Screening and Prevention Editorial Board.

Information about the following is included in this summary:

• Esophageal cancer incidence and mortality statistics and information about esophageal cancer risk factors.

• Interventions for esophageal cancer prevention.

• Benefits and harms of interventions to prevent esophageal cancer.

This summary is intended as a resource to inform clinicians and other health professionals about the currently available information on esophageal cancer prevention. The PDQ Screening and Prevention Editorial Board uses a formal evidence ranking system in reporting the evidence of benefit and potential harms associated with specific interventions. It does not provide formal guidelines or recommendations for making health care decisions. Information in this summary should not be used as a basis for reimbursement determinations.

This summary is also available in a patient version, which is written in less technical language.”

Sanjeev--An example of the information contained therein follows: Different drugs are prescribed for different people, but the staging is of utmost importance.

“Stage Information

The stage determines whether the intent of the therapeutic approach will be curative or palliative. The American Joint Committee on Cancer (AJCC) has designated staging by TNM classification. [1]

TNM Definitions

Primary tumor (T)

• TX: Primary tumor cannot be assessed
• T0: No evidence of primary tumor
• Tis: Carcinoma in situ
• T1: Tumor invades lamina propria or submucosa
• T2: Tumor invades muscularis propria
• T3: Tumor invades adventitia
• T4: Tumor invades adjacent structures

Regional lymph nodes (N)

• NX: Regional lymph nodes cannot be assessed
• N0: No regional lymph node metastasis
• N1: Regional lymph node metastasis

Distant metastasis (M)

• MX: Distant metastasis cannot be assessed
• M0: No distant metastasis
• M1: Distant metastasis

• Tumors of the lower thoracic esophagus:
• M1a: Metastasis in celiac lymph nodes
• M1b: Other distant metastasis

• Tumors of the midthoracic esophagus:
• M1a: Not applicable
• M1b: Nonregional lymph nodes and/or other distant metastasis

• Tumors of the upper thoracic esophagus:
• M1a: Metastasis in cervical nodes
• M1b: Other distant metastasis

For tumors of the midthoracic esophagus, use only M1b because these tumors with metastases in nonregional lymph nodes have equally poor prognoses as do those with metastases in other distant sites.

AJCC Stage Groupings

Stage 0

• Tis, N0, M0

Stage I

• T1, N0, M0

Stage IIA

• T2, N0, M0
• T3, N0, M0

Stage IIB

• T1, N1, M0
• T2, N1, M0

Stage III

• T3, N1, M0
• T4, any N, M0

Stage IV

• Any T, any N, M1

Stage IVA

• Any T, any N, M1a

Stage IVB

• Any T, any N, M1b

The current staging system for esophageal cancer is based largely on retrospective data from the Japanese Committee for Registration of Esophageal Carcinoma. It is most applicable to patients with squamous cell carcinomas of the upper third and middle third of the esophagus, as opposed to the increasingly common distal esophageal and gastroesophageal junction adenocarcinomas. [2] In particular, the classification of involved abdominal lymph nodes as M1 disease has been criticized. The presence of positive abdominal lymph nodes does not appear to carry as grave a prognosis as metastases to distant organs.[3] Patients with regional and/or celiac axis lymphadenopathy should not necessarily be considered to have unresectable disease caused by metastases. Complete resection of the primary tumor and appropriate lymphadenectomy should be attempted when possible. “
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Sanjeev - You will benefit from knowing about all the cancer drugs.

The National Cancer Institute also has a DRUG DICTIONARY which is extremely helpful.

http://www.cancer.gov/drugdictionary/
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Another link I find beneficial is the MIRIAM WEBSTER ONLINE MEDICAL DICTIONARY. Not only will it give you a medical definition, it will also pronounce it for you. This will give you confidence in knowing that you will be able to pronounce the terms properly when conversing with medical professionals.
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http://www.merriam-webster.com/medical/esophageal

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Sanjeev, you would be wise to check out the many types of radiation available in the area where you live. We have machines that can zero in on the tumor itself without the danger of touching another organ in the process. Some other hospitals are not equipped with the latest technology and cannot radiate as precisely as others. I am sure what I am saying is most likely overwhelming, but I find you to be where I once was. I knew absolutely nothing. Actually it has taken me a good deal of time to understand what has actually happened within my body. When I went into the Operating Room, I did not know as much as I do today. And mind you, there is much more that I do not yet understand, but I do not have the luxury of spending untold hours to find out what years of study have revealed about EC.

Do you have a good person to accompany you to the doctor's visits? Can you be treated quickly in India? It's a good idea to take someone with you.

It is a good idea to start a file in which to keep all your findings. I would suggest a composition notebook in which you keep all the dates of your appointments, the doctor’s names, and their opinions. Also, keep track of the treatments you received when and where. List any symptoms you have during the period of time from now on and mention them to your doctor. Have a doctor that will tell you the truth, the entire truth.

There is little time to live in the “Land of Denial”. Time spent there should be brief, because the time spent lingering there will be time wasted on finding the best method of treatments.

You, of course, are permitted the usual emotions we all share in common, of shock, numbness, bewilderment, sadness, anxiety, sleeplessness, disbelief, etc. but ultimately you must quickly advance to “acceptance” stage so you can make objective decisions. You exhibit a good attitude by reaching out at this stage of your cancer. There are some who refuse to believe the doctors. Some never do any research because they do not want to know the whole truth. Others “jump in with both feet” and say, “we’re going to lick this cancer”. Those are the aggressive ones with the most stamina and willingness to endure the pain and suffering to get to the “Survivor” stage.

At this point, I should probably explain a couple of sayings that have a lot of meaning behind them. They carry with it an element of truth and humor as in, “You’ve got to put on your "Big Boy Underwear with no lace”.

For the ladies, it is “Put on your Big Girl Panties”.

Both have the same connotation—face the truth—don’t shrink in fear—face the situation with a positive attitude—don’t wimp out—do what the doctor tells you to do—don’t by a cry baby, etc. Lori writes under the name of “Moe and Papa”. She is the author of that expression. We always say we will ship a pair by “Faith Federal Express” to anyone who needs a pair. Angels deliver them always "just in the nick of time".

And then there is another young lady named Cathy, 24 years old now, who writes under the name of Kitten.

She was diagnosed with Stage III Esophageal Cancer, the same as I, but when she underwent her operation, the cancer was found to be much more extensive than doctors first believed. Herein lies the benefit of pre-op chemo and/or radiation. Her doctors underestimated the extent and therefore, she had to be subject to chemo and radiation in quite an aggressive manner soon after her operation. Naturally she wasn’t fully recovered from the operation itself before her body had to take on the added burden of coping with side effects of post operative therapies.

Kitten has suffered intensely and is presently in the hospital once more. It seems that the cancer intends to win the battle and savage her body in unbelievable ways. She, on the other hand possesses an unusual degree of maturity for a young lady her age. She refuses to "give up". We all have admired her stamina and look up to her as a role model of what one soul can suffer and still have a “song in their heart”.

Kitten motivates and inspires us with her favorite motto. “Life isn’t about waiting for the storm to pass, it’s about learning how to dance in the rain”. We have also dubbed her the “Cat with 9 Lives” because God has brought her back from the brink so many times.

Incidentally, anytime you place your cursor on the name of the person posting the entry, it will take you to a site that tells you more “about the person themselves”. Each person may enter any information they wish on the “About Me” page. Some choose to be verbose; others have only a few words. There is also a place for private e-mails if you wish to send someone in particular a message and would rather not have it in print for all to read. So the longer you stay with it, the more you will become familiar with all the information on these pages.

I will tell you why I now believe so strongly in pre-op treatments. It is for this reason. Cancer cells multiply rapidly. They go in a cycle of 2 then 4 then 8 then 16 then 32, etc. Each cell reproduces itself. It is an insidious invasion of cancer cells. The only bad thing about chemo is that it kills both good cells and bad cells. The other thing is that it goes throughout the body. CHEMO hunts down the cells, whereas RADIATION zeroes in on one particular area. Both CHEMO and RADIATION have side effects. No two people will respond the same way to the very same drugs. So it is possible that you will not have the horrible side effects that some have to undergo, and it is possible that you will suffer extreme side effects. Be prepared to experience either. There is nothing simple or easy about the chemo or the radiation.

Seventh – I agree with you that you have made the right decision to have radiation prior to the operation. I do question why you have not mentioned chemotherapy. I had both.

I had two 96-hour continual hours of intravenous chemotherapy via a Bard port. One infusion was at the beginning and one closer to the end. I also had a total of 5 weeks of radiation. Incidentally one of my doctors who determined the type of radiation I should receive came from your country, India and the other doctor was from Russia! They said they preferred to err on the side of caution when administering radiation because other organs could be damaged, in my case especially the heart, and the damage would be irreparable. Also some side effects of radiation take years to surface, while chemotherapy “talks back to you right away”.

Chemotherapy and/or radiation are usually given together here as a medical procedure. As more chemo enters the body, the more the side effects begin to surface. Depending on the type of chemo, the side effects will be different.

As for me I had very mild side effects from both. My chemo medications were 5-FU & CARBOPLATIN. They worked well for me. At the end of my treatments tests showed "no evidence of cancer". However, I knew I would still be having an operation to remove the Esophagus.

My treatments were given in the early part of 2003. I was operated on May 17, 2003 at the University of Pittsburgh Medical Center by a great doctor, Dr. James D. Luketich. He is the pioneer of a less invasive medical procedure called the MINIMALLY INVASIVE ESOPHAGECTOMY. It is a laparoscopic procedure wherein I had 7 small band aid cuts. Only one incision was about 2 to 3 inches long where the Esophagus was removed. The other cuts were only an inch in length and only covered with band aids.

I was operated on May 17, 2003. My operation lasted 7 hours. I was only in Intensive Care for “ONE” day; I was in a STEP DOWN unit, the second day. By Day 3 I was out on the general floor and was discharged on Day 5. I had absolutely no problems and had a textbook recovery.

This is not the story for everyone, but this is my story. Others will tell you of their story and only wish they had been as blessed as I am. I am not the only Christian on this site that has placed their life in God's hands. He has answered me and others in ways we never dreamed possible. I give Him all the credit for bringing me through.

It pays to have a positive outlook, and to surround yourself with people who are knowledgeable about this cancer and caring friends who know how to pray. I often quote scriptures from the Bible. I CHOOSE TO BELIEVE it is inerrant and inspired by Almighty God. My purpose is not to offend, but in sharing my story, I could not leave out the element of my faith, because I do not know how I could have coped otherwise. So I always say, if you are offended by the names of Jesus, God or the quoting of scripture, please read no further. I will tell you upfront that is who I am. I hope we can communicate and that anything I might say will not be offensive to you. Yet I know there are Christians in India, but there are also other faiths as well. But this site is a place to share our own personal stories of how we came to be diagnosed with Esophageal Cancer, the treatments we were given, how we reacted, how we coped and what we wish to share with others. Many have said that they appreciate the information I have provided. It is my prayer for you as well.

You are beginning a long journey. There will be mountains to climb and valleys to avoid. It is an emotional roller coaster ride. It pays to be informed and to talk with survivors. I say "survivors", because you are probably thinking the same thoughts the rest of us were thinking when we first heard we had Esophageal Cancer. Esophageal Cancer—Oh my Lord—Am I going to live or die?? ? A most logical first thought. I am here to tell you that statistics are stubborn things. I will tell you that this cancer is one of the fastest growing cancers in America, even more so than Breast Cancer. I will tell you that there are a lot of deaths in the first year. These are just the cold hard facts. I am also here to tell you that my story defies the statistics and that many others have as well. Research is presently underway to identify chemo drugs that will target only the cancerous cells and not harm the good cells. Some 32 have been researched to date. God hasten the day when they become "standard issue". Presently they are not on the market.

Sanjeev - I will tell you that you are right to proceed with some pre-op treatments as soon as possible. However, I'm wondering--why is only radiation being recommended? Are you at a very early stage? Have you had a SECOND OPINION?

We always recommend a second opinion and our insurance companies most often pay for a second opinion. This procedure is costly. Quite naturally the insurance companies appreciate a second opinion as well. Either the second opinion will confirm the first diagnosis or tell you where they disagree. It is extremely important that you have a competent doctor that is thoroughly familiar with Esophageal Cancer. Some doctors even here in the states have rushed to judgment and performed surgery on patients much to the sorrow of the patient. "Do not take the word of only one doctor" is my advice.

What types of operations are available in India? Do you have confidence in your doctors? Do you have choices as to where you can go? Is there an Esophageal Cancer Support Group which you could attend?

I am not a doctor, I am only telling you what I have experienced and what I have come to believe, both through research on the INTERNET from reputable sites and from the experiences that others on this site have shared. You have made a smart move to come to the American Cancer Site. They have all the information you will need. In another letter I will give you some places to research for information, but you will be overwhelmed with all that you read. It will be one thing for you to read it, and quite another to experience it. You must remember ONE STEP AT A TIME, ONE DAY AT A TIME.

I will tell you one thing we both have in common. The Esophagus is located in the same place on an Indian and an American, likewise every other body part. Pain is also something we have in common, so we have a commonality regardless of the language we speak.

I was very pleased with my doctor from India who oversaw my radiation. I speak with quite a few telephone reps located in India these days on the phone. It seems that our companies hire out a lot of their “maintenance/warranty" inqueries work to Indian reps. They are always smart and helpful, even though we need the jobs to stay here in America. If you cannot come to America, hopefully you can gain enough expertise by adequate research on the Internet to know what questions to ask. This is a good place to start and you have taken a good first step.

Oh I almost forgot, I was 66 years old when I was first diagnosed. I am now 72 and feel great. I have no physical limitations and take no medications. I maintain a weight of 205-215 for my 6 ft. frame. I have no diet restrictions, but must be careful of the quantities I consume at one meal. There is usually a considerable amount of weight loss immediately after surgery, but that stabilizes. For me it took a year. Also my body reacts differently to the types of food I eat. Your dietitian will advise you on what foods that are best and which ones may well produce diarrhea or excessive gas. But that is for another day. That is not your first priority today. My taste buds changed during the chemotherapy phase, but returned to normal after the treatments ended.

There is “LIFE AFTER ESOPHAGEAL CANCER and it is my prayer that you will be able to make the best decisions and become yet another SURVIVOR.

I will sincerely pray for you in that regard. Welcome to this site where there are people who genuinely care for others.

Prayers & Best Wishes

William W. Marshall
AKA “William66”
Virginia Beach, VA 23464

P.S. I would be remiss if I failed to mention the American Cancer Society and the Mayo Clinic sites. Below are the links for those as well.
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http://www.cancer.org/docroot/CRI/CRI_2x.asp?sitearea=&dt=12

http://www.cancer.org/docroot/CRI/content/CRI_2_2_4X_Treatment_for_esophagus_cancer_12.asp?sitearea=

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The MAYO CLINIC site is easily understood. It is the first place I started to learn more about my cancer.

http://www.mayoclinic.com/health/esophageal-cancer/DS00500

Sanjeev
I'm sorry to hear of your esophageal cancer situation. Your location does not make things easier.

As for my title to your query, PLEASE believe me when I urge you to read and heed my new and good friend William66. Short of having a very experienced MD as moderator, Bill is as good as it gets. He's been through the crucible of this fight before.

Me - I was diagnosed on July 24 of this year as T2N1M0 squamous cell cancer at the midpoint of my esophagus, not the junction of the esophagus and stomach. I have completed 6 weeks of pre-op chemothrepy with concurrent radiation; we from a military background refer to this as a "force multiplier" where both at the same time are more effective that just one of either singularly. I've been off chemo and radiation for almost a month now and my PET scan is to take place this Thursday. I'll then be re-staged, with the treatment plan adjusted as needed.

My very best wishes for success in your cancer battle.

Mike the Wild Goose

Our prayers go out to you.

First, I admit I have not read through all of William's post.

Now, I will give you some general thoughts. The key is the stage of your tumor/cancer and location. I know not what you have available in your country. Over here, we we often use a combination of staging approaches. This includes upper endoscopy with ultrasound evaluation and sampling of suspicious lymph nodes, CT scan, PET scan, and some will still do an exploratory laparoscopy/thorocoscopy lymph node sampling.

In general, neo-adjuvant therapy is a very common and useful first step in treating esophageal cancer. This can often result in a "locally unresectable"cancer being converted into a resectable cancer. Once completing a set amount of neoadjuvant therapy, folks are re-staged. Presuming all things look good at restage and individual's health is good, you should have an esophagectomy.

I believe Wiliam left some website links in his response and I encourage you to check those sites out as well.

OS