Newly Diagnosed

Dear Colleen & Pam ~

It goes without saying that everyone who reads your posts are not going to be happy that yet others are facing diagnoses of Esophageal Cancer.  Depending on the stage of the cancer, different treatments will be given.  Mixed emotions and bewilderment are certainly understandable. 

So Colleen, we will be praying for you as you face this dreaded appointment tomorrow. 

And Pam we want to know just how much and what kinds of testing you have already undergone. 

Questions are the order of the day, and we will try to be of help along the way.  Understand that we offer our suggestions based on our personal experience with Esophageal Cancer.  Anything we say should be discussed with your medical team of course.  But as a newbie, you have no way of knowing the extent of questions there are to be asked!  And though you are understandably filled with more questions than answers at this point, you can get up to speed quickly, and that is ever so important. 

If you’ve read my post, most often I am quite lengthy because I like to give helpful references and it’s up to the patient to “do their homework.” 

 And what is my connection you may ask?  My husband, William was diagnosed in November of 2012 with Adenocarcinoma of the GastroEsophageal (GE) junction, EC Stage III (T3N1M0).  He underwent pre-op chemo and radiation prior to his Minimally Invasive Esophagectomy at the University of Pittsburgh Medical Center. When a patient is diagnosed with Esophageal Cancer that is operable, a tri-modal therapy is best, that being pre-op chemo/radiation and then surgery. 

It is a totally laparoscopic surgery with small band-aid size cuts.  And believe me, we ladies would rather have no scars than 2 large massive ones as is the case with the original Ivor Lewis Esophagectomy first developed in the mid 1940s by a Dr. Ivor Lewis, hence the name.    I won’t go into detail at this time as to the different surgical procedures, only to say that the latest tried and tested Esophagectomy, the Ivor Lewis Minimally Invasive Esophagectomy was pioneered by Dr. James D. Luketich at the University of Pittsburgh Medical Center.  He is renowned and a brilliant Thoracic Surgeon, and I can recommend no one more highly.  It is the surgery widely practiced at UPMC. 

My husband was a model patient who was in and out of the hospital in 5 days, and downtown shopping with me on Day 8.  I took pictures all along the way.  Now I don’t mean to make it sound like a piece of cake.  It is major surgery, and comes with some readjustments as to sleeping positions and eating habits.  But that is for later.  A correct diagnosis and treatment plan is of utmost importance. 

There are 4 different homes in Pittsburgh for out-of-town patients and their families.  You can register to stay there, when you know the day you will be arriving.  The fee is nominal compared to the hotels there.  Once there, a hospital bus stops at each of the homes, and carries the patients to the medical facility where they are to be seen.  When last I checked the phone number was 412-647-7555.  There is a state of the art Hillman Cancer Center there, and that is where we go for annual checkups. 

I couldn’t begin to tell you in one letter all the things you two need to know, but I will offer a few basic items of utmost importance as referenced below my name.  And as an aside, sometimes patients like to discuss things here by private e-mail at times.  This site does discourage listing your e-mail publicly because you may get messages you don’t care to receive from total strangers having nothing to do with Esophageal Cancer.  My husband and I will be glad to talk with either of you if you want to send us a phone number and/or a personal e-mail as well.  Either way stay in touch.  All of us here have unique experiences and between us all, we do possess a wealth of helpful information. 

If you are a surgical candidate, choose a major hospital where Ivor Lewis Minimally Invasive Esophagectomies are one of their specialties, and their surgeons have performed so many, they can “do it with their eyes closed.”  Well, not really—but I’m talking EXPERIENCED and then some!  Since my husband has now been a survivor into his 14^th year, I can recommend no one more highly than the pioneer of the MIE.  His name is Dr. James D. Luketich and he is at the University of Pittsburgh Medical Center.  We simply called up and said we wanted a SECOND OPINION.  Dr. Luketich did not require a referral.  Thankfully, our insurance covered a second opinion at that facility, and the rest is history.  My husband and I are overjoyed to still be enjoying life together. 

Needless to say, we are sorry to meet both of you under these circumstances, but if you’re a quick learner and don’t linger too long in the pit of despair, (which is totally understandable at this stage) perhaps you can be equipped to make the best decisions sooner that could well eliminate major regrets later.

Sincerely,

Loretta

Wife of William, now age 79 and still in remission, MIE @ UPMC, (EC Stage III (T3N1M0) on May 17, 2003

Helpful references:

1.  http://www.upmc.com/Video/Pages/default.aspx?vcat=937;#3753ef4c-73b8-4be7-b0c7-9c5fd91b952c|Lung+and+Thoracic+Surgery

Video by Dr. Inderpal Sakaria talking about treatment at UPMC for MIE procedures (He is now located elsewhere but he trained under Dr. Luketich at the time of this video)  Note there are 2 Short Videos by Dr. James D. Luketich – one for Esophagectomies and one for treating GERD - “Esophageal Cancer: Surgical Innovations - ​James D. Luketich, MD, highlights advances in esophageal cancer treatment through innovative surgery. The UPMC Esophageal and Lung Surgery Institute is a leader in developing novel surgical approaches to minimize recovery time and scarring while maximizing results and quality of life for patients after surgery. “

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2.  http://www.cancer.org/cancer/esophaguscancer/index

This is an in-depth look into Esophageal Cancer, its stages and treatment options.

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3.  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…”

(My suggestion:  Note the block entitled “Esophageal Cancer Management.  When you click on each topic, you will learn more about that particular STAGE.  There is also information about “Clinical trials” as well.  That is something patients need to discuss with their doctors depending on the patient’s diagnosis.)

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4.  http://news.cancerconnect.com/esophageal-cancer-overview/

“OVERVIEW - The esophagus is the muscular tube that conveys food from the back of the throat to the stomach. It is located in the chest behind the sternum and the trachea, the main breathing tube leading to the lungs. The esophagus joins the stomach at the diaphragm, which is the breathing muscle separating the chest and lungs from the abdomen. The connection of the esophagus to the stomach at the diaphragm is called the gastro-esophageal junction. The gastro-esophageal junction serves as a one-way valve to keep stomach contents from being refluxed or regurgitated back into the esophagus…”

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5.  http://news.cancerconnect.com/newly-diagnosed/

“Newly Diagnosed - A new diagnosis of cancer can be a shock, making you feel out of control and overwhelmed. Getting informed can help alleviate these feelings. Remember, very few cancers require emergency treatment; you have time to learn about your diagnosis and treatment options, ask questions, and get a second opinion. This section is designed to help you address your initial questions before you move forward with your treatment…” 

• What is Cancer?
• Diagnosing Cancer
• Introduction to Cancer Treatment
• Your Cancer Treatment Team
• Optimizing Your Treatment
• Questions to Ask
• A Word about Clinical Trials
• Getting a Second Opinion
• The Role of Caregivers

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6.  http://news.cancerconnect.com/newly-diagnosed/getting-a-second-opinion/

“Always get a second opinion” is my advice.  Sometimes a person has gone to one doctor for so long that they are afraid they will “hurt their feelings” is they don’t take all their advice without double checking. Hey, you’re the one that’s facing this problem, and you want to go to the very best place possible, and have the latest of treatments once a definite diagnosis has been determined. 

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7.  http://news.cancerconnect.com/higher-hospital-volume-linked-with-better-survival-after-gastrointestinal-surgery/

“Higher Hospital Volume Linked with Better Survival after Gastrointestinal Surgery

According to the results of a study conducted in Taiwan, patients with stomach, liver, colorectal, or esophageal cancers have better survival after surgery if the surgery is performed in a hospital that handles a greater number of these surgeries. These results were published in the Annals of Surgical Oncology…”

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One last item:  Over the years we have met many others that have also been diagnosed with Esophageal Cancer, and most of them were on this link.  I have a dear friend named Sherri and early on she shared this letter.  She said, “Loretta share anything I have shared with you.”  So here is a copy of that letter.  Sadly, her husband was very young (48) and diagnosed with Stage IV Esophageal Cancer (inoperable).  While no Esophagectomy was possible, they did everything possible to make his quality of life as good as it could be even as they wrestled with this “EC giant!”  Sherri and I are both realists, therefore sometimes our letters may be a bit “strong” for some, but we want you to know everything we’ve learned as quickly as possible.  I have copies of much that she has written, and I consider this introduction to the "Newly Diagnosed" as very helpful.

"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"

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suesue1212 said:

Hi Colleen

I just read your post.  I too have been diagnosed this past week.....very scary, angry, sad...so many emotions. Do you have a partner/spouse? Sounds like you have a wonderfully huge family. I intend on keeping very close to this board for support as I am a widow with little to no physical support.  Lots of survivors on this board Colleen, let's not forget this.....Huge hugs from Texas, Pam

Hi,

I am a Stage 3 survivor.  Diagnosed April, 2012.  Wish you the best of luck and wanted to let you know to also check out the ECAA website and their Facebook page.  They are a large active group for lots of information and support. 

Scott

Dear Colleen

          You may not feel like writing after you come back from having another Endoscopy today.  I remember the exact feeling of coming home after my husband's Endoscopy.  No one told me to stick around after the visit.  The next day, the phone rang at 2:30 in the afternoon.  The conversation went like this:  "This is Dr. Ryan.  I do wish you had stayed around yesterday.  I needed to talk with you.  Your husband HAS CANCER!”  Then he started using terms I had NEVER heard before.  I remember asking how do you spell, Esophageal Cancer, Squamous Cell.  I really didn’t know how to pronounce Endoscopy.  But from that day forward, I started looking up words.  When we went to the doctors, I would ask, “How do you spell that?”  I would ask pointed questions and I always got answers.  The secret is to know what questions to ask, because often the doctors are not going to say more than they need to say for fear you’ll “faint!”  And William and I swore “if we lived through this”, we would make it our goal to inform as many others as possible, as what to do, especially if they were having “heartburn.”  Oddly enough, my husband only had a hiccup.  Who would attach any medical significance to that?  Well, I said, “I don’t recall having hiccups since I was a kid.  We’re going to see the doctor and see what’s wrong with you.”  And so we did. To make a very long story short, a hiccup can be spelled “Adenocarcinoma at the GE junction” – Stage III – T3N1M0!

          Your visit today will begin a round of even more definitive tests to ascertain the exact stage and grade of your cancer.  (You say you already have been told you have Esophageal Cancer at the GE junction.)  Just wanted you to know that you have been on my mind ever since you wrote us a few days ago.  Being a mother of 3 and a surrogate mom to 4 grandchildren all from the same family, my heart aches for you.  I was in my mid-forties when my husband and I became “surrogate parents.”  We had a dear friend who volunteered to take care of our 4 for practically the entire summer of 2003.  That was an answer to prayer.  You know for us women, “mid-forties is a time when “changes of life” can occur.  This was certainly not how I envisioned approaching a “mid-life crisis”.  It certainly wasn’t what I had in mind, but we loved our grandchildren like our own.  Given the circumstances surrounding that time in their lives, we wouldn‘t hesitate to do the same thing again.  Life is often defined by the challenges we meet and how we respond to them. 

          Not being a mind reader, but a terminal cancer patient myself, I know many of the questions that run through our minds.  Questions about who is going to take care of this one, that one, etc?  How are they going to get along without me?  Yes I think I am that important to them.  And you have to be a strong woman to care for 5 children, and especially an autistic young son.  So I’m praying that someone is going to be there to step up to the plate and be a “surrogate mom” while you go through this difficult period in your life.  At this point, we who have “been there—done that” insofar as Esophageal Cancer is concerned know of success stories, and we certainly hope you will have nothing but the very best medical team.

          Colleen, you already had a “full plate full” before this diagnosis and I am just so very sorry that you are having to face another battle of a different kind.  I hope you are going to have a good support system of loving family and understanding friends, and that you will know when and what to say to your precious children that need you so much at this “fragile” time in their lives.  And that is not to say that this isn’t a “fragile” time in your life as well.  I can’t speak for others, but for me having the Lord as my inner strength, has kept me sane.   I don’t like the word “challenges”—I prefer to say “problems”, since I’m from the old school.  But I can tell you that our trials have served to strengthen our character and resolve and faith and we are more able to face life’s onslaughts than at previous times in our life.  Funny how each time we ever had a problem, we thought “nothing could be as bad as this”—and then along came something else even bigger.  So today, we have a sliding scale from 1-to-10 to evaluate life’s problems.  Ranking at the top for now is cancer.  We say, “If it ain’t cancer, it’s not a problem.”  Now understand that for the time we are only 77 and 79 respectively, so who knows what is down the road. 

           It is when we give of ourselves, that we find life most fulfilling.  To get a letter from one of your grandsons, now in college, just writing a card to say, “Thank You Grandma—I don’t know where I would be without you” is worth more than anything money can buy.  So I hope you have a lot of praying friends and those who will step up to the plate, and give of themselves.  We here will be praying and helping to the best of our ability to tell you where the EC “pot holes” are and where the EC “water holes” are. 

Love & prayers,

Loretta (& William aka Billy-EC III – T3N1M0) still in remission 14 years later!