Newly Diagnosed here

bshort71

Just found out last Tuesday, April 12th. Still don't know stage or many other details. Had a stint placed in so I could swallow better but still not able to eat very much. 

Had CT scan in the hospital and also have some nodules in my lungs. Having PET scan next week which I guess will tell more.

Still so many questions to be answered, plan to be figured out, etc. I have been told I'll definitely be getting radiation and chemo soon. And met with surgeon who will do esophogus replacement when/if radiation and chemo makes it possible. So much info in the last 3-4 days I don't know what to do with it all.

I'm 45, never thought my life could change so quickly. I'm very scared.

Just wanted to join the group, say hi, and wish every good luck with their fight. I'm sure I'll be back on often. Just don't know what to do about anything or what else to say right now.

Everyone just says "you have to stay positive." I know I need to but just very hard right now as it's all so new. But I'm trying.

Sorry if I'm rambling. Just confused right now about EVERYTHING.

-Brad

LorettaMarshall

Brad~Pull up a chair~This a long - long letter-hope it helps U

Dear Brad:

You’re right where all of us were when we first saw a CT scan report that had our name on it.  “Bewitched—Bothered—and Bewildered” you bet, and throw in SCARED to boot!  You’ve got a right to be confused about EVERYTHING—WE UNDERSTAND.

Now Brad, first of all let me say this by way of a disclaimer.  “Medical information that I share with you is not intended to be used as a substitute for professional medical advice, diagnosis, or treatment. You should not rely entirely on this information for your health care needs. Ask your own doctor or health care provider any specific medical questions that you have.”

That said, I don’t want to scare you out of your wits because I think you’re already there.  However, having observed Esophageal Cancer “up close and personal” since my husband’s diagnosis of “Adenocarcinoma at the GastroEsophageal (GE) junction”, I cannot count the number of great people that we have met along the way on this site and elsewhere.   Just in case you didn’t know, when you “click” on the name of the person posting, up will come an “about me” page.  Some have written extensively explaining their condition and/or treatments.  Others have only “signed in” and not answered any of the questions posed there.  So I’ll not try to tell you everything “about me” and my husband who is now in his 14^th year of Survival from Esophageal Cancer, Stage III, and (T3N1M0).  You can read more there.  That means little to you now, but it will as time goes by.  You are so new that what you know has already “overwhelmed” you.  Your fears are legitimate.  This is a devastating cancer diagnosis, even when one knows that they will definitely be a candidate for surgery.  But in order to keep your head above water, you have to “live one day at a time—one treatment at a time!”  At this point, trying to figure out the future is fruitless.  Coping with the present is all you need to be doing. 

Now Brad, depending on the places where the cancer has spread will determine the “stage” of the cancer.  For instance, my husband’s cancer was in the late stage when first diagnosed.  All four walls of the Esophagus had been penetrated, and two lymph nodes adjacent to the Esophagus were also found to be cancerous.  I will compile a list of references that will be helpful for you to have a better understanding of the order of things.  And I will tell you upfront, I’m very longwinded, so anytime you see a letter from me, more often than not, you’d better pull up a chair.

Incidentally, I am a Stage IV Ovarian Cancer patient myself, age 77.  So I write from experience as a caregiver to my husband, William, since 2002, and as a terminal cancer patient myself, having been diagnosed in November of 2012.)  I am not into holistic procedures—no snake venom treatments for me.  Now if there were clinical trials that proved snake venom was recommended for standard treatment of Esophageal Cancer or Ovarian cancer—well maybe—but so far it’s not anything recommended by top medical facilities.  And also, I don’t plan on taking a trip outside the country for some “magical cure” not available to us here in the USA.  I thank God for all the learned doctors we are so blessed to have here in our great country.  We give God credit for keeping us both sane! I thank Him too for leading us to some great surgeons and oncologists who have cared for us along the way.  People choose to handle their cancer diagnoses in different ways, but for us we find inner strength in God that enables us to have a positive attitude, even though we wish we had never heard the word CANCER.   

Now in a condensed form (difficult to do) back in 2002, my husband had a persistent lone hiccup each time he started to eat anything—no difficulty swallowing—just a hiccup.  After 2 months I said, “Something’s wrong with you.  I haven’t had hiccups since I was a kid!” So I made an appointment with the doctor, never expecting anything serious to come of the visit.  From there our Internist arranged a quick appointment with a Gastroenterologist for an Endoscopy.  Within 3 days, the Endoscopy was completed, and the “fix was in.”  ESOPHAGEAL CANCER.  It is certain that all of us identify with those raw emotions that surge through our being at hearing those words.  The gastroenterologist called me on the phone to tell me the news!  My phone rang at 2:30 PM the day following the Endoscopy.  “Mrs. Marshall, this is Dr. Ryan.  I do wish that you had stayed around yesterday.  I needed to talk with you.  Your husband has cancer!”  My husband was sitting next to me when I answered the phone, so he heard me say, “How do you spell Esophageal?”  “Squamous?”  So yes, Brad our world changed in a minute just like yours. 

The following day, we were back in our Intern’s office.  He called Dr. Ryan himself and said, “Are you sure you have the right William Marshall?”  Our doctor of 30 years had tears in his eyes, when he hung up the phone.  I still remember that conversation.  It’s as fresh in our memory as though it were yesterday.  From there our doctor set us up an appointment with the local Thoracic Surgeon here in town, who was known as the best in Tidewater.  From there the testing began.  A reference below will inform you of all the tests you will be subjected to in order to correctly diagnose the extent of your cancer. 

We knew nothing about this cancer, and at first just went blindly along, listening to the doctor, and doing as we were told.  We didn’t know what questions to ask, and neither does anyone else when they’re first discovered to have this cancer.  Not having the benefit of any research information, as soon as we heard the words CHEMOTHERAPY, we hit a brick wall.  We said to ourselves, “We’ll just skip chemotherapy.  That stuff will kill you!”  Now mind you that was the “dumb & then uninformed” (but not now) Marshall couple speaking.  We actually told the surgeon that we definitely did NOT want any chemotherapy.  He didn’t let on at the time as to how dumb we really were.  Now “dumb” in the sense of “not knowing the facts re EC”, not as lacking good sense Brad.  His secretary called us no less than 3 and 4 times encouraging us to make an appointment and consult with an oncologist.  It took us a week to decide to make an appointment with the oncologist, because we knew his name was synonymous with “chemotherapy”.  But just to “please the surgeon”, we “finally” agreed to go see Dr. Paul Conkling.  He never “pushed” us to have the chemo, but he did tell us that in his experience those patients who chose to have pre-op chemo had better success. 

(Now I know that clinical trials bear out the fact that tri-modal treatment is best—that being pre-op chemo/radiation & then surgery.  Sometimes when the cancer is diagnosed as “early” an Esophagectomy is performed, only to find more cancer in some of the lymph nodes that first thought.  In that case, post-op chemo is recommended.  Tri-modal treatment is definitely advantageous.)

And it took us about 3 or 4 days after that visit to decide to go ahead with the surgeon’s advice and have the chemo/radiation treatments first.  So Brad, you’re way ahead in accepting the fact that chemo and radiation produce the best results for anyone contemplating having an Esophagectomy.

Now in that regard, after thorough testing, a stage will be determined.  May I mention one thing here?  All Esophageal Cancer patients should be tested to see if they are HER-2 Positive.  Some patients have an overactive cell that produces cancer cells more quickly than would otherwise be happening.  If they are found to have this over-expressive gene, a drug known as HERCEPTIN is prescribed.  It is separate from the chemo drugs but is given in conjunction with them.

According to the stage of the cancer, surgical possibilities will be determined.  Now my husband was blessed to be diagnosed with Stage III because the cancer was confined to the Esophagus and 2 local lymph nodes.  Therefore, he was considered a “surgical candidate”.  Now if his Stage had been a “IV”, no surgery would have been given, but still chemo and radiation would most likely have been prescribed.  Chemotherapy circulates throughout the entire body in search of cancer cells and kills them, unfortunately good cells are killed as well.  But you will recover, believe it or not.  The radiation is designed to “shrink” the tumor.  Surgeons prefer to schedule surgery 3 to 4 weeks after the pre-op treatments are completed.  Radiation can build up scar tissue, so the sooner the surgery is performed, the better, if surgery is a possibility. 

At the completion of my husband’s pre-op treatments of 5-FU and Carboplatin via infusion with a “medi-port”,  a PET/CT scan indicated the tumors had been eradicated completely.  That was great news and cause for a celebration.  But—we had already been told that even if the test showed “no cancer”, that an Esophagectomy would still be NECESSARY.  The reason being that often tests can miss a minute cancer cell that may not be detected until the actual surgery takes place.  This is a common practice.  And so we never entertained the idea of NOT having surgery, even though the chemo/radiation treatments were such a great success.  And we certainly know the wisdom of that now. 

Occasionally, a patient will be able to have a cancerous nodule surgically removed without prior treatments, but that is only in the earliest of stages.  Most often this cancer is not detected until it is in a late stage.  And speaking of stage, when the cancer is found to be in another major organ as well as the Esophagus, it will be Stage IV.  In that instance, only chemo and radiation are usually prescribed.  When the cancer has spread it is called Metastasis. Even then there are helpful things to make the patient’s quality of life better.

So my husband’s stage of “T3N1M0” meant this.  T=tumor—N=node—M=Metastasis.  So the T3 meant that the cancer had infiltrated all 4 of the muscular walls of the Esophagus.  The N1 meant that 2 or 3 lymph nodes next to the Esophagus were also found to contain cancer.  The M0 meant that there was zero Metastasis.  That’s the best news we could have had. 

The next best news we had was that we learned that there were different types of Esophagectomies.  And most often, it would depend upon the surgeon’s “basic training” in performing Esophagectomies as to which surgery one would most likely have.  In that regard, our first Thoracic surgeon here in Tidewater, was not trained to perform a totally-laparoscopic procedure that consisted of small band-aid cuts as opposed to the 2 massive incisions in the original Ivor Lewis surgery.  Dr. Ivor Lewis first experimented with removal of the Esophagus as a treatment for this kind of cancer back in the mid 40’s.  And for many years afterward all surgeons were trained in that procedure. 

In the mid 70s a surgeon, Dr. Mark Orringer, at University of Michigan improved on the original Ivor Lewis surgery.  It was called the “TransHiatal Esophagectomy – THE).

Then in the mid 1990’s, a doctor named Dr. James D. Luketich pioneered a “new” totally laparoscopic way of removing the diseased Esophagus.  This procedure is called the Ivor Lewis Minimally Invasive Esophagectomy (MIE) for short.  It is no longer considered “new” since it’s now been around and proven to be very effective for 20 years.  Now many, many surgeons in training are being taught to perform the latest, most advanced, laparoscopic minimally invasive techniques.  Dr. Luketich trains many thoracic surgeons there in Pittsburgh. 

Just about 10 days prior to having the “oldest” type of surgery, we learned about the “newest” way of performing an Esophagectomy.  So we called the University of Pittsburgh Medical Center and asked if we could have an appointment with Dr. Luketich.  Dr. Luketich did not require a referral and our insurance paid for a SECOND OPINION.  A second opinion is recommended Brad.  That way your diagnosis will either be confirmed, or else some additional suggestions as to how to best deal with your particular diagnosis may emerge. 

Now Brad, to be totally honest, I’m concerned about these statements.  You write—“Still don't know stage or many other details. Had a stint placed in so I could swallow better but still not able to eat very much.  Had CT scan in the hospital and also have some nodules in my lungs.”

From letters written here previously few have had any major improvement in eating after having a stent placement.  Some have complained of excessive coughing and back pain just to name a couple.  As for the lung nodules, I pray they are not found to be cancerous.  The PET/CT scan will be the determining factor in what treatments will be given. In any event, finding the very best doctors that are trained and “experienced” will be to your advantage.  Experienced thoracic surgeons in large medical hospitals that major in Esophagectomies are best.

So I will tell you that we went to UPMC not knowing what to expect, but after a careful review of my husband’s complete record, and an examination by Dr. Luketich himself, my husband was pronounced a “good candidate” for the MIE.  We “flew home on the wings of an angel”, made hasty arrangements for a dear friend to take care of our 4 young grandchildren in our custody at the time, and went back to UPMC for a Minimally Invasive Esophagectomy on May 17, 2003.  William was in ICU for one day, moved into a step-down unit on Day 2—moved out to the regular floor on Day 3—passed a Barium Swallow test on Day 4, and released from the hospital on Day 5.  On Day8, we boarded a bus and went downtown shopping!  Ever since that time my husband has been a model patient for this type of Esophagectomy. Granted everyone does not do this well right off the operating table, but newbies need to know that there are success stories of survivors, thank God!

So the first thing we would want you to know is that there is a more invasive (TransThoracic - TTE) Esophagectomies, often known as “open” surgery.  And then there is the least invasive, the Minimally Invasive- MIE) surgery.   Unless you have mitigating medical circumstances, the choice should be yours to make.  If surgery is warranted, and the surgeon you are presently dealing with does not know how to perform an MIE, I would suggest you seek a 2^nd opinion with one that is versed and experienced with the MIE.  At the University of Pittsburgh Medical Center the Ivor Lewis MINIMALLY INVASIVE ESOPHAGECTOMY is now their “routine” surgical procedure.  Rarely do they perform “open” surgery on an EC patient anymore. 

Now Brad, there is oh so much more I could tell you, but for the time being, I will tell you that there are success stories.  Needless to say, this is a perilous journey, but by being informed about this cancer, and “owning it”, your anxiety will be lessened.  The less time lingering near the “land of denial” will serve you well.  You sound like one who wants to truly know the best way to attack this monster.  The more you know, the more confident you will be about the best steps to take.  Make a list of questions that you have and discuss them with your doctor.  Our doctors always took the time to put us at ease, and never treated us as a “number.”  You are as deserving as the next patient waiting to see the doctor.  You need to feel confident that you are getting the best advice possible, and that you “understand” all those big words the doctors use.  So don’t be shy. 

Knowing what to expect and still maintaining a positive attitude will serve you well.  Lastly, my husband would be delighted to share his experience with you personally if you want to talk to him.  Below my name I will post a letter written by a good friend of mine named “Sherri”, whose husband was diagnosed with Stage IV at the age of 48.  Her husband, Jim, lived 2 years after his diagnosis.  At the time of diagnosis, he was the picture of health, and then all of a sudden, just like you and my husband, he learned he had Esophageal Cancer.  Sherri would be delighted for me to share anything she wrote during her time on this discussion forum.  Her contributions were invaluable, and I have saved most everything she ever wrote and have saved it in my own personal file.

So Brad—wish it were as simply as saying “Cheer up—don’t worry—everything’s gonna’ be fine—but I believe that would not be fair to say at this point since you don’t really know what you are facing.  But as always, begin this journey with the attitude that you’re gonna’ make every effort to know all you can, find the best doctors, become a survivor,  and aspire to help others along in their journey for years to come.  We are pleased to be able to help new patients along the way.  We like to think of ourselves as just a couple of beggars telling another beggar “where to find a piece of bread!”  God bless you as you start this journey, Brad.

Wishing you the very best,

Loretta (&William) Marshall, EC Stage III (T3N1M0), Minimally Invasive Esophagectomy at UPMC May 17, 2003—now celebrating 14^th year of remission with no evidence of disease (NED). 

______________________________________________________________

(Letter from my friend Sherri) - “"APRIL 15, 2010 - 6:29 P.M. - FOR THE NEWLY DIAGNOSED

You are about to enter the roller coaster from Hell.  Unfortunately, you don't have time to feel sorry for yourselves.  You must move on to fight the beast.  Whether you are stage I or stage IV, only believe half of what is told and rely on your own knowledge of yourself or your loved one, with the exception if you get a doctor who is upbeat and willing to go the extra mile for you.  Remember whatever they tell you is statistical, clinical or factual, and that they don't know you as an individual.  Since coming on in June of 2009, I have read many stories whereas the patient, or the spouse,  is afraid to confront the doctors,  or to get a second,  or even a third opinion.  I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.

Remember to question everything and anything and if the doctor doesn't like this then find another.  Remember that you are the patient and that they are working for you.  Research everything and talk about it in your appointments.  Never be frightened to ask questions.  Even better is when you are with the onco staff, ask then whom I may call to get immediate answers.

Know your cancer!  Look up where it may metastasize to and be one step ahead with questions or clinical trials.  Don't hesitate to ask them about the HER2 gene and has my tumor been tested? Remember to ask about supplements that can help you while you are on chemo or radiation.  Ours allowed us to do what we wanted, especially for chemo-related neuropathy.

When you are first diagnosed, we sit their numbly, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing.  Well believe it quickly, take a few deep breaths and begin the fight. The ones that delay treatment are the ones that suffer in the long run.  Don't dwell on "I should haves," or "I could haves," it's too late for that. Get going on the cure or the treatment.  You can still lead a productive life.  Push yourself and do not give up hope.  Ever!!!

Only God knows when it is your time.  Have faith in yourselves and know that you are not alone.  We are here to answer your questions to the best of our ability.  We have been through heartache.  We have lost loved ones dear to us. We have cried together over someone we have never met.  We are a family and you may not like what we have to say but we care and have the experience.

You will meet people here that have experienced it all.  We have people that have been fighting for their lives all along but continue success.  We have our "not-a-surgical-candidate" patients that have overcome their projected life spans and are doing well.  We have people that have had the surgery and have been cured or are in remission.  We have had many who have lost their loved ones but still come on to help others.  They share their experiences without a second thought.  Many give out their personal phone numbers to help some and others become great friends even though they have never met.  Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of esophageal cancer.

Good luck and best wishes to all of you in your fight against esophageal cancer.  There will always be someone here to answer your questions the best they know how to.  Remember that we here have had success no matter how old you are.  Our goal is to beat it now or in the future by helping others. You are never alone!

Sherri"
 _____________________________________________________________________

1.  http://www.cancer.gov/types/esophageal/hp/esophageal-treatment-pdq#section/all

NIH Esophageal Cancer Treatment–Health Professional Version (PDQ®)

2.   http://www.gastrojournal.org/article/s0016-5085(08)01431-5/fulltext

HER2 Amplification in Micrometastatic Esophageal Cancer Cells Predicts Prognosis - Herceptin is a humanized antibody, designed to target and block the function of HER2, a protein produced by a specific gene with cancer-causing potential. The mode of action of Herceptin is unique in that it activates the body’s immune system and suppresses HER2 to target and destroy the tumor.

3.  http://www.roche.com/media/store/releases/med-cor-2010-10-21.htm

“FDA approves Herceptin for HER2-positive metastatic stomach cancer…First targeted medicine shown to improve overall survival in HER2-positive stomach and gastroesophageal junction cancers…”

4.  http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/

“Esophageal Cancer Information Center

Knowledge is power. Are you facing a new diagnosis, recurrence, living with metastatic disease, or supporting a loved one through their cancer journey? The Cancer Connect Esophageal Cancer Information Center has current, evidence-based information for you. Get the facts about esophageal cancer early detection, treatment, and survivorship, and stay up to date with ongoing esophageal cancer research that could impact your treatment decisions through our daily cancer news…”

5.   http://chemocare.com/chemotherapy/drug-info/default.aspx

Chemotherapy Drugs and Drugs often Used During Chemotherapy.  I find this link most informative.  It will list side effects of each chemo drug, and how to best cope with them.

6.  http://www.healthline.com/directory/3dbodymaps

A great resource that gives 3-dimensional views of all the body parts, so you can understand the closeness of one organ to another.

7.  http://www.cancerresearchuk.org/about-cancer/what-is-cancer/how-cancer-can-spread/where-cancer-can-spread

Good information on what cancer is and how it spreads.

___________________________End of references_________________________

 

 

Deathorglory

Hello

Hello Brad,

 

Sorry to hear that you're joining the group here.  I hope you get the best possible news from your testing this week.  If they're talking radiation and surgery, then you may well be in an earlier stage.  Radiation and surgery typically aren't options for stage IV.  It sounds empty, but you really do need to stay positive.  Other options do no good for anyone.  No matter what idiocy you might run into on your EC journey, someone on this board has probably already dealt with it.  Please post questions or frustrations here, you'll find sympathetic ears.  I'm 48 now and was 40 when I started.  I know how it feels to wonder how you can be hit with this at such a young age.

I hope you have a good support sytem (and don't hesitate to use them) and that you receive the best possible prognosis,

 

Ed

bshort71

LorettaMarshall said:

Brad~Pull up a chair~This a long - long letter-hope it helps U

Dear Brad:

You’re right where all of us were when we first saw a CT scan report that had our name on it.  “Bewitched—Bothered—and Bewildered” you bet, and throw in SCARED to boot!  You’ve got a right to be confused about EVERYTHING—WE UNDERSTAND.

Now Brad, first of all let me say this by way of a disclaimer.  “Medical information that I share with you is not intended to be used as a substitute for professional medical advice, diagnosis, or treatment. You should not rely entirely on this information for your health care needs. Ask your own doctor or health care provider any specific medical questions that you have.”

That said, I don’t want to scare you out of your wits because I think you’re already there.  However, having observed Esophageal Cancer “up close and personal” since my husband’s diagnosis of “Adenocarcinoma at the GastroEsophageal (GE) junction”, I cannot count the number of great people that we have met along the way on this site and elsewhere.   Just in case you didn’t know, when you “click” on the name of the person posting, up will come an “about me” page.  Some have written extensively explaining their condition and/or treatments.  Others have only “signed in” and not answered any of the questions posed there.  So I’ll not try to tell you everything “about me” and my husband who is now in his 14^th year of Survival from Esophageal Cancer, Stage III, and (T3N1M0).  You can read more there.  That means little to you now, but it will as time goes by.  You are so new that what you know has already “overwhelmed” you.  Your fears are legitimate.  This is a devastating cancer diagnosis, even when one knows that they will definitely be a candidate for surgery.  But in order to keep your head above water, you have to “live one day at a time—one treatment at a time!”  At this point, trying to figure out the future is fruitless.  Coping with the present is all you need to be doing. 

Now Brad, depending on the places where the cancer has spread will determine the “stage” of the cancer.  For instance, my husband’s cancer was in the late stage when first diagnosed.  All four walls of the Esophagus had been penetrated, and two lymph nodes adjacent to the Esophagus were also found to be cancerous.  I will compile a list of references that will be helpful for you to have a better understanding of the order of things.  And I will tell you upfront, I’m very longwinded, so anytime you see a letter from me, more often than not, you’d better pull up a chair.

Incidentally, I am a Stage IV Ovarian Cancer patient myself, age 77.  So I write from experience as a caregiver to my husband, William, since 2002, and as a terminal cancer patient myself, having been diagnosed in November of 2012.)  I am not into holistic procedures—no snake venom treatments for me.  Now if there were clinical trials that proved snake venom was recommended for standard treatment of Esophageal Cancer or Ovarian cancer—well maybe—but so far it’s not anything recommended by top medical facilities.  And also, I don’t plan on taking a trip outside the country for some “magical cure” not available to us here in the USA.  I thank God for all the learned doctors we are so blessed to have here in our great country.  We give God credit for keeping us both sane! I thank Him too for leading us to some great surgeons and oncologists who have cared for us along the way.  People choose to handle their cancer diagnoses in different ways, but for us we find inner strength in God that enables us to have a positive attitude, even though we wish we had never heard the word CANCER.   

Now in a condensed form (difficult to do) back in 2002, my husband had a persistent lone hiccup each time he started to eat anything—no difficulty swallowing—just a hiccup.  After 2 months I said, “Something’s wrong with you.  I haven’t had hiccups since I was a kid!” So I made an appointment with the doctor, never expecting anything serious to come of the visit.  From there our Internist arranged a quick appointment with a Gastroenterologist for an Endoscopy.  Within 3 days, the Endoscopy was completed, and the “fix was in.”  ESOPHAGEAL CANCER.  It is certain that all of us identify with those raw emotions that surge through our being at hearing those words.  The gastroenterologist called me on the phone to tell me the news!  My phone rang at 2:30 PM the day following the Endoscopy.  “Mrs. Marshall, this is Dr. Ryan.  I do wish that you had stayed around yesterday.  I needed to talk with you.  Your husband has cancer!”  My husband was sitting next to me when I answered the phone, so he heard me say, “How do you spell Esophageal?”  “Squamous?”  So yes, Brad our world changed in a minute just like yours. 

The following day, we were back in our Intern’s office.  He called Dr. Ryan himself and said, “Are you sure you have the right William Marshall?”  Our doctor of 30 years had tears in his eyes, when he hung up the phone.  I still remember that conversation.  It’s as fresh in our memory as though it were yesterday.  From there our doctor set us up an appointment with the local Thoracic Surgeon here in town, who was known as the best in Tidewater.  From there the testing began.  A reference below will inform you of all the tests you will be subjected to in order to correctly diagnose the extent of your cancer. 

We knew nothing about this cancer, and at first just went blindly along, listening to the doctor, and doing as we were told.  We didn’t know what questions to ask, and neither does anyone else when they’re first discovered to have this cancer.  Not having the benefit of any research information, as soon as we heard the words CHEMOTHERAPY, we hit a brick wall.  We said to ourselves, “We’ll just skip chemotherapy.  That stuff will kill you!”  Now mind you that was the “dumb & then uninformed” (but not now) Marshall couple speaking.  We actually told the surgeon that we definitely did NOT want any chemotherapy.  He didn’t let on at the time as to how dumb we really were.  Now “dumb” in the sense of “not knowing the facts re EC”, not as lacking good sense Brad.  His secretary called us no less than 3 and 4 times encouraging us to make an appointment and consult with an oncologist.  It took us a week to decide to make an appointment with the oncologist, because we knew his name was synonymous with “chemotherapy”.  But just to “please the surgeon”, we “finally” agreed to go see Dr. Paul Conkling.  He never “pushed” us to have the chemo, but he did tell us that in his experience those patients who chose to have pre-op chemo had better success. 

(Now I know that clinical trials bear out the fact that tri-modal treatment is best—that being pre-op chemo/radiation & then surgery.  Sometimes when the cancer is diagnosed as “early” an Esophagectomy is performed, only to find more cancer in some of the lymph nodes that first thought.  In that case, post-op chemo is recommended.  Tri-modal treatment is definitely advantageous.)

And it took us about 3 or 4 days after that visit to decide to go ahead with the surgeon’s advice and have the chemo/radiation treatments first.  So Brad, you’re way ahead in accepting the fact that chemo and radiation produce the best results for anyone contemplating having an Esophagectomy.

Now in that regard, after thorough testing, a stage will be determined.  May I mention one thing here?  All Esophageal Cancer patients should be tested to see if they are HER-2 Positive.  Some patients have an overactive cell that produces cancer cells more quickly than would otherwise be happening.  If they are found to have this over-expressive gene, a drug known as HERCEPTIN is prescribed.  It is separate from the chemo drugs but is given in conjunction with them.

According to the stage of the cancer, surgical possibilities will be determined.  Now my husband was blessed to be diagnosed with Stage III because the cancer was confined to the Esophagus and 2 local lymph nodes.  Therefore, he was considered a “surgical candidate”.  Now if his Stage had been a “IV”, no surgery would have been given, but still chemo and radiation would most likely have been prescribed.  Chemotherapy circulates throughout the entire body in search of cancer cells and kills them, unfortunately good cells are killed as well.  But you will recover, believe it or not.  The radiation is designed to “shrink” the tumor.  Surgeons prefer to schedule surgery 3 to 4 weeks after the pre-op treatments are completed.  Radiation can build up scar tissue, so the sooner the surgery is performed, the better, if surgery is a possibility. 

At the completion of my husband’s pre-op treatments of 5-FU and Carboplatin via infusion with a “medi-port”,  a PET/CT scan indicated the tumors had been eradicated completely.  That was great news and cause for a celebration.  But—we had already been told that even if the test showed “no cancer”, that an Esophagectomy would still be NECESSARY.  The reason being that often tests can miss a minute cancer cell that may not be detected until the actual surgery takes place.  This is a common practice.  And so we never entertained the idea of NOT having surgery, even though the chemo/radiation treatments were such a great success.  And we certainly know the wisdom of that now. 

Occasionally, a patient will be able to have a cancerous nodule surgically removed without prior treatments, but that is only in the earliest of stages.  Most often this cancer is not detected until it is in a late stage.  And speaking of stage, when the cancer is found to be in another major organ as well as the Esophagus, it will be Stage IV.  In that instance, only chemo and radiation are usually prescribed.  When the cancer has spread it is called Metastasis. Even then there are helpful things to make the patient’s quality of life better.

So my husband’s stage of “T3N1M0” meant this.  T=tumor—N=node—M=Metastasis.  So the T3 meant that the cancer had infiltrated all 4 of the muscular walls of the Esophagus.  The N1 meant that 2 or 3 lymph nodes next to the Esophagus were also found to contain cancer.  The M0 meant that there was zero Metastasis.  That’s the best news we could have had. 

The next best news we had was that we learned that there were different types of Esophagectomies.  And most often, it would depend upon the surgeon’s “basic training” in performing Esophagectomies as to which surgery one would most likely have.  In that regard, our first Thoracic surgeon here in Tidewater, was not trained to perform a totally-laparoscopic procedure that consisted of small band-aid cuts as opposed to the 2 massive incisions in the original Ivor Lewis surgery.  Dr. Ivor Lewis first experimented with removal of the Esophagus as a treatment for this kind of cancer back in the mid 40’s.  And for many years afterward all surgeons were trained in that procedure. 

In the mid 70s a surgeon, Dr. Mark Orringer, at University of Michigan improved on the original Ivor Lewis surgery.  It was called the “TransHiatal Esophagectomy – THE).

Then in the mid 1990’s, a doctor named Dr. James D. Luketich pioneered a “new” totally laparoscopic way of removing the diseased Esophagus.  This procedure is called the Ivor Lewis Minimally Invasive Esophagectomy (MIE) for short.  It is no longer considered “new” since it’s now been around and proven to be very effective for 20 years.  Now many, many surgeons in training are being taught to perform the latest, most advanced, laparoscopic minimally invasive techniques.  Dr. Luketich trains many thoracic surgeons there in Pittsburgh. 

Just about 10 days prior to having the “oldest” type of surgery, we learned about the “newest” way of performing an Esophagectomy.  So we called the University of Pittsburgh Medical Center and asked if we could have an appointment with Dr. Luketich.  Dr. Luketich did not require a referral and our insurance paid for a SECOND OPINION.  A second opinion is recommended Brad.  That way your diagnosis will either be confirmed, or else some additional suggestions as to how to best deal with your particular diagnosis may emerge. 

Now Brad, to be totally honest, I’m concerned about these statements.  You write—“Still don't know stage or many other details. Had a stint placed in so I could swallow better but still not able to eat very much.  Had CT scan in the hospital and also have some nodules in my lungs.”

From letters written here previously few have had any major improvement in eating after having a stent placement.  Some have complained of excessive coughing and back pain just to name a couple.  As for the lung nodules, I pray they are not found to be cancerous.  The PET/CT scan will be the determining factor in what treatments will be given. In any event, finding the very best doctors that are trained and “experienced” will be to your advantage.  Experienced thoracic surgeons in large medical hospitals that major in Esophagectomies are best.

So I will tell you that we went to UPMC not knowing what to expect, but after a careful review of my husband’s complete record, and an examination by Dr. Luketich himself, my husband was pronounced a “good candidate” for the MIE.  We “flew home on the wings of an angel”, made hasty arrangements for a dear friend to take care of our 4 young grandchildren in our custody at the time, and went back to UPMC for a Minimally Invasive Esophagectomy on May 17, 2003.  William was in ICU for one day, moved into a step-down unit on Day 2—moved out to the regular floor on Day 3—passed a Barium Swallow test on Day 4, and released from the hospital on Day 5.  On Day8, we boarded a bus and went downtown shopping!  Ever since that time my husband has been a model patient for this type of Esophagectomy. Granted everyone does not do this well right off the operating table, but newbies need to know that there are success stories of survivors, thank God!

So the first thing we would want you to know is that there is a more invasive (TransThoracic - TTE) Esophagectomies, often known as “open” surgery.  And then there is the least invasive, the Minimally Invasive- MIE) surgery.   Unless you have mitigating medical circumstances, the choice should be yours to make.  If surgery is warranted, and the surgeon you are presently dealing with does not know how to perform an MIE, I would suggest you seek a 2^nd opinion with one that is versed and experienced with the MIE.  At the University of Pittsburgh Medical Center the Ivor Lewis MINIMALLY INVASIVE ESOPHAGECTOMY is now their “routine” surgical procedure.  Rarely do they perform “open” surgery on an EC patient anymore. 

Now Brad, there is oh so much more I could tell you, but for the time being, I will tell you that there are success stories.  Needless to say, this is a perilous journey, but by being informed about this cancer, and “owning it”, your anxiety will be lessened.  The less time lingering near the “land of denial” will serve you well.  You sound like one who wants to truly know the best way to attack this monster.  The more you know, the more confident you will be about the best steps to take.  Make a list of questions that you have and discuss them with your doctor.  Our doctors always took the time to put us at ease, and never treated us as a “number.”  You are as deserving as the next patient waiting to see the doctor.  You need to feel confident that you are getting the best advice possible, and that you “understand” all those big words the doctors use.  So don’t be shy. 

Knowing what to expect and still maintaining a positive attitude will serve you well.  Lastly, my husband would be delighted to share his experience with you personally if you want to talk to him.  Below my name I will post a letter written by a good friend of mine named “Sherri”, whose husband was diagnosed with Stage IV at the age of 48.  Her husband, Jim, lived 2 years after his diagnosis.  At the time of diagnosis, he was the picture of health, and then all of a sudden, just like you and my husband, he learned he had Esophageal Cancer.  Sherri would be delighted for me to share anything she wrote during her time on this discussion forum.  Her contributions were invaluable, and I have saved most everything she ever wrote and have saved it in my own personal file.

So Brad—wish it were as simply as saying “Cheer up—don’t worry—everything’s gonna’ be fine—but I believe that would not be fair to say at this point since you don’t really know what you are facing.  But as always, begin this journey with the attitude that you’re gonna’ make every effort to know all you can, find the best doctors, become a survivor,  and aspire to help others along in their journey for years to come.  We are pleased to be able to help new patients along the way.  We like to think of ourselves as just a couple of beggars telling another beggar “where to find a piece of bread!”  God bless you as you start this journey, Brad.

Wishing you the very best,

Loretta (&William) Marshall, EC Stage III (T3N1M0), Minimally Invasive Esophagectomy at UPMC May 17, 2003—now celebrating 14^th year of remission with no evidence of disease (NED). 

______________________________________________________________

(Letter from my friend Sherri) - “"APRIL 15, 2010 - 6:29 P.M. - FOR THE NEWLY DIAGNOSED

You are about to enter the roller coaster from Hell.  Unfortunately, you don't have time to feel sorry for yourselves.  You must move on to fight the beast.  Whether you are stage I or stage IV, only believe half of what is told and rely on your own knowledge of yourself or your loved one, with the exception if you get a doctor who is upbeat and willing to go the extra mile for you.  Remember whatever they tell you is statistical, clinical or factual, and that they don't know you as an individual.  Since coming on in June of 2009, I have read many stories whereas the patient, or the spouse,  is afraid to confront the doctors,  or to get a second,  or even a third opinion.  I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.

Remember to question everything and anything and if the doctor doesn't like this then find another.  Remember that you are the patient and that they are working for you.  Research everything and talk about it in your appointments.  Never be frightened to ask questions.  Even better is when you are with the onco staff, ask then whom I may call to get immediate answers.

Know your cancer!  Look up where it may metastasize to and be one step ahead with questions or clinical trials.  Don't hesitate to ask them about the HER2 gene and has my tumor been tested? Remember to ask about supplements that can help you while you are on chemo or radiation.  Ours allowed us to do what we wanted, especially for chemo-related neuropathy.

When you are first diagnosed, we sit their numbly, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing.  Well believe it quickly, take a few deep breaths and begin the fight. The ones that delay treatment are the ones that suffer in the long run.  Don't dwell on "I should haves," or "I could haves," it's too late for that. Get going on the cure or the treatment.  You can still lead a productive life.  Push yourself and do not give up hope.  Ever!!!

Only God knows when it is your time.  Have faith in yourselves and know that you are not alone.  We are here to answer your questions to the best of our ability.  We have been through heartache.  We have lost loved ones dear to us. We have cried together over someone we have never met.  We are a family and you may not like what we have to say but we care and have the experience.

You will meet people here that have experienced it all.  We have people that have been fighting for their lives all along but continue success.  We have our "not-a-surgical-candidate" patients that have overcome their projected life spans and are doing well.  We have people that have had the surgery and have been cured or are in remission.  We have had many who have lost their loved ones but still come on to help others.  They share their experiences without a second thought.  Many give out their personal phone numbers to help some and others become great friends even though they have never met.  Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of esophageal cancer.

Good luck and best wishes to all of you in your fight against esophageal cancer.  There will always be someone here to answer your questions the best they know how to.  Remember that we here have had success no matter how old you are.  Our goal is to beat it now or in the future by helping others. You are never alone!

Sherri"
 _____________________________________________________________________

1.  http://www.cancer.gov/types/esophageal/hp/esophageal-treatment-pdq#section/all

NIH Esophageal Cancer Treatment–Health Professional Version (PDQ®)

2.   http://www.gastrojournal.org/article/s0016-5085(08)01431-5/fulltext

HER2 Amplification in Micrometastatic Esophageal Cancer Cells Predicts Prognosis - Herceptin is a humanized antibody, designed to target and block the function of HER2, a protein produced by a specific gene with cancer-causing potential. The mode of action of Herceptin is unique in that it activates the body’s immune system and suppresses HER2 to target and destroy the tumor.

3.  http://www.roche.com/media/store/releases/med-cor-2010-10-21.htm

“FDA approves Herceptin for HER2-positive metastatic stomach cancer…First targeted medicine shown to improve overall survival in HER2-positive stomach and gastroesophageal junction cancers…”

4.  http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/

“Esophageal Cancer Information Center

Knowledge is power. Are you facing a new diagnosis, recurrence, living with metastatic disease, or supporting a loved one through their cancer journey? The Cancer Connect Esophageal Cancer Information Center has current, evidence-based information for you. Get the facts about esophageal cancer early detection, treatment, and survivorship, and stay up to date with ongoing esophageal cancer research that could impact your treatment decisions through our daily cancer news…”

5.   http://chemocare.com/chemotherapy/drug-info/default.aspx

Chemotherapy Drugs and Drugs often Used During Chemotherapy.  I find this link most informative.  It will list side effects of each chemo drug, and how to best cope with them.

6.  http://www.healthline.com/directory/3dbodymaps

A great resource that gives 3-dimensional views of all the body parts, so you can understand the closeness of one organ to another.

7.  http://www.cancerresearchuk.org/about-cancer/what-is-cancer/how-cancer-can-spread/where-cancer-can-spread

Good information on what cancer is and how it spreads.

___________________________End of references_________________________

 

 

Thank you so much

Not feeling too great right now but just wanted to say thank you for the response. I'm so glad to hear that your husband is doing so good and also wish you the best in your fight with your illness. I'll be back on soon to really read everything and try to ask some questions also I'm sure.

Thanks again and God Bless you both!

bshort71

Deathorglory said:

Hello

Hello Brad,

 

Sorry to hear that you're joining the group here.  I hope you get the best possible news from your testing this week.  If they're talking radiation and surgery, then you may well be in an earlier stage.  Radiation and surgery typically aren't options for stage IV.  It sounds empty, but you really do need to stay positive.  Other options do no good for anyone.  No matter what idiocy you might run into on your EC journey, someone on this board has probably already dealt with it.  Please post questions or frustrations here, you'll find sympathetic ears.  I'm 48 now and was 40 when I started.  I know how it feels to wonder how you can be hit with this at such a young age.

I hope you have a good support sytem (and don't hesitate to use them) and that you receive the best possible prognosis,

 

Ed

Thank you Ed

It's really great to hear from someone around my age who is doing so well. I hope to be able to tell the same story myself in 8 years.

Very, very kind of you to respond. Hope to talk more soon. Take care!

paul61

Take things one day at a time

Hello Brad,

Sorry you find yourself here. I was diagnosed at 61, and like you I was shocked because I was otherwise very healthy and active. The good news is, after surgery and chemotherapy, I am doing fine six years later. The whirlwind of tests and medical appointments you are about to go through can be overwhelming at times but if you just take one day at a time, and act on information as it becomes available you will get through.

Come back here often with questions or just to vent. We have been through this and can provide information and perspective.

Wishing you the very best as your treatment continues.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

 

Martha6315

Keep breathing

Brad - I wanted to let you know that there is lots of hope after you go through the fight.  One year after my surgery, I was on a plane to Kauai to celebrate.  I sent my surgeons postcards to thank them.  I can't say that my life hasn't changed or that I wouldn't rather have skipped 2015, but I made it and you can too! 

Good book is 100 Questions and Answers about Esophageal Cancer.

Be sure to get an experienced surgeon who has done multiple esophogectomies.  Don't believe the survival stats online.  They're old and don't do anything for your mindset.  Let people help you and be grateful for every day. 

Best wishes in your journey!

 

 

eclc

SHARING YOUR ANGER/CONFUSION/FEAR

Hi Brad,  Let me start by saying that I'm sorry that you are now a member of this website and also want to say that I'm happy that you're a member of this website since it can be therapeutic.  I was diagnosed with lung cancer when I was 34 years old.  I had my entire right lung removed and did heavy doses of chemo and radiation (just about killed me).  Now, 19 years later, I'm 53 and was just diagnosed on 7/8 with squamous cell esophageal cancer.  This time around it's going to be very difficult because of the surgery.  When my pathology report came in I started to get very worried about the esophagectomy...everything I read about it makes it something that I'm not happy about being on the receiving end.   So I went to Johns Hopkins (who has an excellent multi-discipline clinic for lung/esophageal) and spoke with several doctors and surgeons.  They came up with this doozie...Because my chest cavity had be violated 3 times (open lung biopsy, pnuemonectomy, and radiation therapy) there is no way to know what the inside of my chest looks like.  Because of my health (caused by my prior treatment) and the difficulty of this surgery, they're going to need at least two 'Attennding Physicians', and a Cardiac Anesthesiologist.  My surgery can be expected to go over 15 hours and my stay in the ICU will be fairly long.  When I finally get out of the ICU, my hospital stay is estimated at a minimum of 2 months!  They probably won't join my stomach back to my throat, instead they're planning on closing off the opening at the bottom and the top and having me eat out of a jtube for the rest of my life.  Up top they're going to put a drain in my neck for saliva to collect in an 'ostomy' back just below my shrit collar line.

Needless to say, I've had better days.  The funny thing is that the surgery that had me scared to death (esophagectomy) is now the surgery that I wish, more than ever, that I was having done.

In closing, I wish you the best of luck in your pursuit of a disease free life!  I hope you continue to contribute to this site after your ordeal is over because there is alway someone looking for help out there.  I normally contribute to the lung cancer site and search the esophageal site for my current predicament.

Take care Brad...

pat

LorettaMarshall

Pat~As they say, "This is enough to make a grown man cry!"

 Oh my dear Pat,

 Agreed, how I wish you were ONLY having an Esophagectomy!  Once we talked to a fellow who was in need of an Esophagectomy.  He wondered if he would choose to have it done, because he didn’t want to sleep in an elevated position for the “rest of his life.”  And I thought to myself, though I didn’t tell him, “Well sir, there is another alternative, lying flat permanently as in deceased!”  Better to sleep in an elevated position than to be in a “permanent sleep I say!”  And what a blessing to be even be able to qualify as a “surgical candidate”.  For those who have gone through chemo, radiation and surgery and sometimes more chemo, no one has to tell them what it feels like.  For those who are contemplating having an Esophagectomy, no one can really tell them what it feels like until they experience it for themselves.   However, it’s wise to check out all the possibilities and go into it with your eyes open.

 And out of curiosity, even though the name Pat can be either a male or female, somehow I get the impression that you are a male.  Am I correct?  And may I ask if you are contemplating a SECOND opinion?  I surely hope so.  And of course, we always recommend Dr. James D. Luketich at the University of Pittsburgh, because we received such excellent treatments there.  They are on the cutting edge of technology and aggressive in their approach.  Although Johns Hopkins is an excellent hospital, their “treatment plan” would certainly have to be verified as the most credible plan of action by at least one other major group of thoracic surgeons, if I had to face this decision.  The plan you have outlined makes most of the stories here pale by comparison, and I probably am expressing the sentiments of many who are reading your story today. 

 Having just been diagnosed on July 8^th, your list of adjectives, anger, confusion and fear are understandable.  Certainly Johns Hopkins’ diagnosis is “hard to swallow.”  And I’m wondering how you’ve made out all these years with only one lung?  Have the surgeons mentioned chemotherapy prior to this “horrific surgery?”  And what symptoms did you have that ultimately led to this diagnosis of Squamous Cell Esophageal Cancer?  And one more question, what is your diagnosis?  Is it Lung cancer with metastasis to the Esophagus?  When cancer has metastasized, the Primary cancer is listed first and the organ to which it has spread is always listed second.  So I’m just wondering if the doctors are considering this as Lung cancer that has spread to the Esophagus, or a separate diagnosis that was not associated with the previous Lung cancer.   

 No one but you knows how much you’ve struggled and the pain you’ve endured.  And I’m certain in hindsight, you would say, “Yep it was awful, but I’ve had 19 additional years, and I wouldn’t trade them for the world.”  You’re the perfect example of being “between a rock and a hard place.”  I do understand why the docs say they don’t know exactly what they will find when until they can actually see inside your chest.  Is there any possibility of exploratory surgery?  Radiation can cause a terrific amount of scar tissue buildup.   As far as Esophagectomies are concerned, surgeons like to schedule the Esophagectomy as quickly as possible after chemotherapy sessions are finished.  Scar tissue is difficult to “cut through”.  When my husband had his Esophagectomy, surgery took longer because of scar tissue buildup from radiation.

 And now when thinking about what you’re facing, it makes our customary “after effects” of “dumping syndrome, excessive weight loss, new dietary habits, and sleeping in an elevated position” seem like child’s play by comparison.  You don’t write as one who is feeling sorry for yourself.  I think you’re grateful for the extra 19 years of being cancer free.  And I get the feeling, you’re contemplating risking this surgery in hopes of coming out the victor one more time. 

  Now, at age 53, you are describing an unbelievable and incredibly serious surgery, with life altering consequences.  You’ve been open enough to share that with us.  And I must say that as I read your letter, I cringed and said, “Oh God I wish all Pat had to have was an Esophagectomy.”

  Am I allowed to say this is heart breaking?  We are speechless.  We feel helpless, but we will pray for you to be guided as to where to go and what choices to make.  Like you say, this is a “doozie!”    You make the words of Helen Keller so true—“I cried because I had no shoes, until I met a man who had no feet!”

 Come back anytime,

 Loretta (& William) EC Stage III survivor of 14 years~ MIE @ UPMC by Dr. James D. Luketich, May 17, 2003

 

eclc

...and I did.

Loretta,

I should describe myself...I'm a 6'3"/260lbs (for now ) retired navy Senior Chief...oh yes, male by the way.  I AM getting a second opinion from Bethesda Naval Hospital (Army folks would call it Walter Reed, but no self respecting sailor would).  I am also working a third opinion with MD Anderson.  Last time around (lung cancer) I was diagnosed at Portsmouth Naval Hospital, sought a second opinion at Bethesda and a third at Memorial Sloan Kettering.  I could not agree with you more that other opinions are very important when we get a dianosis and prospective treatment plan.  A difficulty I am anticipating is finding a thoracic surgeon to perform the procedure and surviving a procedure that intense and long.  To answer your questions:

>>life without a lung has been difficult at times but, like you said, it beats the alternative.  These 19 years have allowed me to be the Best Man at my son's wedding and walk my little girl down the aisle.  Both weddings gave this old sailor a chance to wear his dress uniform as my son, daughter and son-in-law are all graduates of the Naval Academy (thanks to dad being a 100% disabled veteran).  I had to take things much slower through the years and am suffering with Stage C congestive heart failure because of the radiation/chemotherapy.

>>I was diagnosed with lung cancer because my legs swelled up (edema).  My wife made me go to the hospital to get checked out and, while peforming an xray to determine the extent of the fluid build up, a tumor was found in my chest.

>>fast forward 19 years and I went to the ER for shortness of breath that couldn't be explained.  A CT was done and tiny opacificatoins were seen in my remaining lung.  The pulmonologist suggested that I repeat my CT in 3 months.  Now think about that...this knucklehead is telling a guy with one lung to wait 3 months to see if he's got lung cancer!  I countered with "how about you give me a referral for a PET Scan".  He thought for a moment and then agreed.  When I had my PET Scan I also had the imaging facility send my results to my GP and Cardiologist.  Later THAT DAY, my GP called me to tell me that they found a hyperdennsity in my right chest (the left side wasn't active).  This alleviated my fear of inoperable lung cancer at least but now had me focused on this next hurdle. 

I want to point out three things for folks reading this.

1.  I had three opinions for my lung cancer and am seeking three for my esophageal cancer

2.  I pushed for my PET scan.  You have to take control over your health.  If you die, your Oncologist will have ANOTHER patient...your family only has ONE YOU.

3.  Always have your results sent to a Doctor with whom you have a good rapport who will tell share test results immediately

Regarding #3, I had to call that pulmonologist to get the results from my PET.  Granted, I already knew but I wanted to make him uncomfortable.  He told me that he'd have the folks at Johns Hopkins contact me...haven't heard a peep (I went to Hopkins on my own).

>>my esophageal cancer is N0T3MX squamous cell...caused by...you guessed it...cancer treatment from 1997.

Regarding my subject line...it was in response to yours...I'm sure everyone on this site can relate to shedding some tears...thank you Loretta for your kind words.

Finally, I want to share a little known secret with my fellow patients and their caregivers.  Google corporate angel network.  I used them back in 1997 to get from the Virginia Beach area to NYC for my third opinion at Sloan Kettering.  I plan to use them again for my third opinion at MD Anderson in Houston, TX.  They offer FREE round trip flights for you and your caregivers to cancer centers and oncologists throughout the country for treatments and appointments.  Anyone thinking of using Lorretta's Dr Luketich in Pittsburgh or any other treatment center, they'll try to get you there free of charge...worth looking into.

pat

 

Deathorglory

eclc said:

...and I did.

Loretta,

I should describe myself...I'm a 6'3"/260lbs (for now ) retired navy Senior Chief...oh yes, male by the way.  I AM getting a second opinion from Bethesda Naval Hospital (Army folks would call it Walter Reed, but no self respecting sailor would).  I am also working a third opinion with MD Anderson.  Last time around (lung cancer) I was diagnosed at Portsmouth Naval Hospital, sought a second opinion at Bethesda and a third at Memorial Sloan Kettering.  I could not agree with you more that other opinions are very important when we get a dianosis and prospective treatment plan.  A difficulty I am anticipating is finding a thoracic surgeon to perform the procedure and surviving a procedure that intense and long.  To answer your questions:

>>life without a lung has been difficult at times but, like you said, it beats the alternative.  These 19 years have allowed me to be the Best Man at my son's wedding and walk my little girl down the aisle.  Both weddings gave this old sailor a chance to wear his dress uniform as my son, daughter and son-in-law are all graduates of the Naval Academy (thanks to dad being a 100% disabled veteran).  I had to take things much slower through the years and am suffering with Stage C congestive heart failure because of the radiation/chemotherapy.

>>I was diagnosed with lung cancer because my legs swelled up (edema).  My wife made me go to the hospital to get checked out and, while peforming an xray to determine the extent of the fluid build up, a tumor was found in my chest.

>>fast forward 19 years and I went to the ER for shortness of breath that couldn't be explained.  A CT was done and tiny opacificatoins were seen in my remaining lung.  The pulmonologist suggested that I repeat my CT in 3 months.  Now think about that...this knucklehead is telling a guy with one lung to wait 3 months to see if he's got lung cancer!  I countered with "how about you give me a referral for a PET Scan".  He thought for a moment and then agreed.  When I had my PET Scan I also had the imaging facility send my results to my GP and Cardiologist.  Later THAT DAY, my GP called me to tell me that they found a hyperdennsity in my right chest (the left side wasn't active).  This alleviated my fear of inoperable lung cancer at least but now had me focused on this next hurdle. 

I want to point out three things for folks reading this.

1.  I had three opinions for my lung cancer and am seeking three for my esophageal cancer

2.  I pushed for my PET scan.  You have to take control over your health.  If you die, your Oncologist will have ANOTHER patient...your family only has ONE YOU.

3.  Always have your results sent to a Doctor with whom you have a good rapport who will tell share test results immediately

Regarding #3, I had to call that pulmonologist to get the results from my PET.  Granted, I already knew but I wanted to make him uncomfortable.  He told me that he'd have the folks at Johns Hopkins contact me...haven't heard a peep (I went to Hopkins on my own).

>>my esophageal cancer is N0T3MX squamous cell...caused by...you guessed it...cancer treatment from 1997.

Regarding my subject line...it was in response to yours...I'm sure everyone on this site can relate to shedding some tears...thank you Loretta for your kind words.

Finally, I want to share a little known secret with my fellow patients and their caregivers.  Google corporate angel network.  I used them back in 1997 to get from the Virginia Beach area to NYC for my third opinion at Sloan Kettering.  I plan to use them again for my third opinion at MD Anderson in Houston, TX.  They offer FREE round trip flights for you and your caregivers to cancer centers and oncologists throughout the country for treatments and appointments.  Anyone thinking of using Lorretta's Dr Luketich in Pittsburgh or any other treatment center, they'll try to get you there free of charge...worth looking into.

pat

 

Rough Go

Pat,

Sounds like you're having a particularly rough go of it with your EC.  I don't even know what to say--seems like an absolute horror show.  You seem to have as good an attitude as possible about it, though, and I'm a firm believer that attitude and mental strength are invaluable assets in this fight.

Wishing you the best outcome,

Ed

eclc

agree

Ed,

First, thank you for your kind words.  I could not agree with you more about having a positive attitude.  My prognosis with my lung cancer was not very good.  I was told by the Chief of Oncology that there was a 95% chance I'd be dead within 5 years and he didn't think that I'd make it 18months.  That was 19 years ago.   I'm not saying that a positive attitude was the sole reason for getting through that time in my life...it certainly helped.  More importantly, you really have to fight off 'giving up' if given bad news.  I believe that I wouldn't be here today had I given up when I got that bad news.  I actually took it to be more of a challenge that I would prove them wrong.

I don't want to sound like some tough guy here either...when I was told about my prognosis, I cried.  I cried long and hard.  What else can you do when a doctor tells you that you're going to die?  The same thing happened with my esophageal cancer.  This is an emotional roller coaster that we're on.  The nice thing is that there are others who are in the same boat and there's strength in numbers. 

I've always said that the reason that I survived 19 years ago is to help others who are fighting this damn disease.  It's a total shock and numbing feeling when you're told that you have cancer...surreal...then the emotions and confusion sets in.  That's when folks like you and me and the others on this site come in.  We're a family of sorts and I am happy to be able to help my 'brothers and sisters'.

Thanks again Ed for your posting.

Pat

(ECLC = esophageal cancer/lung cancer)

tanseyj

Esophageal Cancer

Brad, sorry to hear about your cancer. But, as my motto says: 'Cancer is not a death sentence...It is a reason to live!' That has been my motto for about 2 years. You may be interested in reading through my 'so so' journal about my 2 Year Battle with Esohageal Cancer. http://thetanseys.webs.com/Cancer Update.htm    I will say it has been 'hell' for 2 years but I am now free of cancer? Although I can say that, it is always on my mind that it could re occur? You can read about my battle and see pictures of my life as well as anecdotes of what I was thinking during this trying time. I was unable to eat or even sip water for over a year and a half. I had a stent in my Esophagus that slipped down and caused a $45K flight to the hospital. I am now able to eat and drink! I now started bowling and playing softball again at age 75! There is hope after diagnosis! I live one day at a time and try to enjoy each day! A lot of cancer victims have read my page to see that you can beat cancer. It is taken from my Facebook page in which thousands of people prayed and gave me good wishes through this ordeal. The FB page was not about my cancer but all wanted me to keep updating. The link is on the webpage. Keep optimistic and enjoy humor in your life, even about the cancer. One thing I mentioned is that when I was a 'kid' back in the 50's we drove old hot rods. When the radiator hose 'blew out' we could patch it with an old bicycle innertube...lol. Guess it was not an option with my Esophagus? I was going to bring one to my op for the doc to use...lol? Seriously, you are going to go through a lot of 'hell' before you are cured! It is not just 'hell' for you, but your relatives and friends that stick by you? Financially, it can be devestating, even if you have insurance. I had one helicoptor ride that cost $45K. Beng 75 and a fixed income. . .???  If you like my page you can ask me any questions by email at: tanseyjrx@gmail.com (remove the x). Cheers!