ESOPHAGEAL CANCER WHY I RESEARCHED

Why and what I learned from researching esophageal cancer.

I never heard of cancer of the esophagus until the year 2000 when my fifty-six-year-old husband received a STAGE III ADENOCARCINOMA AT THE STOMACH JUNCTION diagnosis.

At the time, a friend whose husband died from this cancer warned me, “Do not research this cancer.”

I ignored her warning for two reasons. 1. I couldn’t go into this fight blind. 2. I needed all the information available to best support, my husband.

Did I wish I hadn’t researched esophageal cancer? Yes! Did I know I had to study this cancer? Yes

What I found jolted me to the core. We had entered the fight of our lives. Even then I knew the chances of losing my husband to this cancer weighed heavy on the high side.

Did I share with my husband what I discovered? NO! WHY?

My husband was a life-long athlete, mountain climber, and alpine racing coach. His calm no quitting courage, positive approach to challenges, underpinned by his faith were nurtured and rooted in the disciplines of an athlete.

As devastated by what I read about the poor long term survival statistics of this cancer, I understood that stepping on hope had no place in the fight for his life.

IN 2000, ESOPHAGEAL CANCER WAS AMONG THE FASTEST GROWING CANCERS IN THE UNITED STATES AND REMAINED SO IN 2020. IT AFFECTS OVER 18,000 PEOPLE PER YEAR. ALTHOUGH IT IS A DEADLY CANCER, I READ IT RECEIVES 2% OF RESEARCH FUNDING GIVEN TO THE TOP THREE FUNDED CANCERS.

Thankfully, in recent years, cancer foundations recognized the need to study this disease and collaborations in research are ongoing between doctors studying the genomic side to understanding esophageal cancer, and the doctors identifying immunotherapy targets, and new clinical trials against esophageal cancer. Through studies related to the trial help in better understanding of why some EC patients respond positively to immunotherapy and some patients do not respond well.

In the time frame between 2000 and 2003 the genomic factor and immunotherapeutic information had not taken place.

I can only speak about the esophageal cancer journey my husband and I shared. While many of the advances in treating EC were not known during my husband’s fight, he signed on to volunteer to take an experimental drug that is now approved and used in EC treatments.

Yes, I ignored the do not research this cancer warning.No, I did not like what I read. In fact, I hated it, it horrified me. But it made my resolve stronger to support Werner with the courage he asked of me. Once we established how he wanted to handle managing his cancer and what I would take on, we became a team.

What I handled

  • The medical insurance and its challenges.
  • Using the resources of a care manager to have a human voice to bring any challenges to the table. And there were some.
  • Scheduling appointments and doing pharmacy runs.
  • Scheduling the family and friends who volunteered to be Werner’s early morning chauffeur for the two and half hour six-week daily round trip to the medical center for radiation treatments. All this allowed conserving Werner’s energy. After returning from his treatments, he went back out on the mountain to work with his alpine racing staff.
  • Nutrition – I followed the nutritionist’s guidelines and prepared recipes to boost protein and calories.
  • In effect besides being Werner’s wife, lover, friend, I became cook, bill payer, sometimes at home nurse with guidance from Werner’s medical team, household manager, keeping family members here and in Switzerland up to date, listening, and anything else surrounding the logistics of navigating cancer.

Why did I handle the long to do list?

Werner needed every ounce of energy to combat the assaults of cancer and the treatment side effects. Lifting the to do list burden off his shoulders supported his ability to be out on the mountain to do the work he loved.



Check out the Website ESOPHAGEAL CANCER AWARENESS ASSOCIATION THERE YOU WILL FIND OTHER CANCER WARRIORS AND THE CAREGIVERS WHO SUPPORT EACH OTHER WITH QUESTIONS, RESOURCES AND ENCOURAGEMENT.

Esophageal Cancer New Study

Cancer New Study

I read that esophageal cancer is an increasingly common disease and represents 1 percent of new cancers diagnosed in the United States. Though it may be common, but an easy to treat cancer it is not. What has not changed dramatically since 2000, is its survivability. Esophageal cancer articles I read in 2000 seem to contain the same outcome in 2017. Within five years of an esophageal cancer diagnosis, four out of five patients do not survive. While new cases of esophageal cancer are among the fastest growing cancers, treatments given today are similar to treatments offered in 2000 and often have the same failure to help results.

Before my husband’s diagnosis, I had never heard of cancer of the esophagus. I know from experience the uphill battle esophageal cancer demands are not for lack of outstanding oncologists, gastrointestinal and thoracic surgeons, and their comprehensive teams. Simply said, this cancer is the beast.

But hope lies in physicians, and scientist’s dedication to understanding esophageal cancer’s molecular character thereby raising new possibilities discover new treatments to give folks afflicted with esophageal cancer a better and longer life.

THE SIXTH GATE - LIVING NORMAL THE ABNORMAL

Next Post: What I learned from The Cancer Genome Atlas and why that matters for hope on the horizon.

                                                                                                                                                                  Photo Credit: Stefan Zwahlen

 

Esophageal Cancer Then and Now

ESOPHAGEAL CANCER  THEN AND NOW                                                                                                              

  • THEN THE YEAR 2000 
    Only basic information available
    Hard to find meanings of staging
    Scarce esophageal cancer awareness
    Difficult to treat
    Survival Statistics dismal
    Generally advanced stage at diagnosis
    Few support groups available –  2 Wonderful sites – EC Café/ EC Support                                                                            
  • How I Learned About Esophageal Cancer
  • My chance encounter with a woman I had not seen in twenty years was instrumental in my introduction to esophageal cancer.
  • When she finished telling me the story about her husband’s death from cancer, I felt compelled ask her what kind of cancer he had and what motivated him to seek medical help. She said he had esophageal cancer and sought medical help because of swallowing difficulties. Her answer triggered the  images of my husband’s multiple episodes of swallowing difficulties. It was the catalyst to convince him to seek medical attention.
  • THEN _SWALLOWING DIFFICULTIES SEEMED TO BE THE PREVALENT INDICATOR TO SEEK MEDICAL ATTENTION – OUR EXPERIENCE

  • In November 2000 my husband’s diagnosis from the endoscopy procedure was advanced esophageal cancer. 
  • Next the staging determined whether the purpose of his treatment was curative or palliative.
  • A palliative classification meant no surgery, maintain the symptoms and no cure.
  • His cancer, Stage III T3 which meant,
  • Tumor invaded adventitia, probable N1, which meant, regional lymph node metastasis, adenocarcinoma of the distal esophagus with extension to gastric cardia.
  • He became a candidate for surgery because of no metastasizes to the liver.
  • Recommendations were: chemo-radiotherapy prior to surgical resection.
  • Surgical resection in April 2001, Transthoracic partial esophagectomy, Ivor Lewis Pull-up.
  • Important to us 
  • Treatments and surgery were done at a major medical center and teaching hospital.
  • In 2004,
  • 14,000 new cases of esophageal cancer were diagnosed and more than half of these cases were adenocarcinoma affecting the glands in the lower third of the esophagus.
  • In 2005
  • Researchers reported adenocarcinoma of the esophagus was the fastest rising cancer in the U.S. 
  • The rise of this cancer the researchers suggested might have been attributed to awareness and earlier screening.
  • NOW 2016 – WHAT’S NEW                                                              
  • More Research Online sites ripe with Esophageal Cancer information Awareness
  • Advertisements for Barrett’s Syndrome, and Acid Reflux
  •  Earlier screening means esophageal cancer is treated earlier bettering survival.
  • New Therapeutic drug treatments Online Support Groups
  • Esophageal Cancer Awareness Association excellent for help and support from patient and caregiver warriors.  
  • WHAT HAS NOT CHANGED
    The prevalence of Stage III OR IV AT diagnosis
  • Is listed in the top ten most lethal cancers
  • Still difficult to treat
  • Still waiting for a cure  

April Is Esophageal Cancer Awareness Month – If You Experience Difficulty Swallowing, Run Don’t Walk to Your Doctor, Please!

 

APRIL IS ESOPHAGEAL CANCER AWARENESS MONTH

Since 2000 treatment and longer survival from esophageal cancer has improved significantly. Squamous cell and adenocarcinoma are the two groups of esophageal cancer.

In 2000, when my husband received his diagnosis (from acid re-flux disease) of Stage III adenocarcinoma at stomach junction (GE Junction), which included cancer visible inches into his stomach (called cardia), also known as distal junction, information about this cancer was minimal and optimistic survival time was not very optimistic.

By 2004, studies showed some advancement in epidemiology, etiology,diagnosis, staging, prevention and treatment, and possibilities for surgery. A stage IV in 2000 pretty much meant surgery not an option. Still in 2004 long-term prognosis remained somewhat poor.

In 2013, an article in the World Journal of Gastroenterology esophageal cancer was one of the least studied and deadliest cancers around the world.

Adenocarcinoma esophageal cancer sadly has earned a ranking of six in mortality among all the cancers. and its incidences have risen sharply. However, the good news is that  research into the causes and risks of this lethal cancer are also on the rise.

In 2015, The American Cancer Society, estimates about 16,980 new esophageal cancer cases will be diagnosed.( Men, 13,570 – Women, 3,410)

Now the survival is 20% of patients at diagnosis surviving five years and beyond. While in 2000, a whooping 5% of patients survived at least 5 years after diagnosis.

Of course, catch it early and the survival rate and perhaps even remission rise sharply.

Risk factors for esophageal adenocarcinoma are: Acid Re-flux, (GERD)  Barrett’s Esophagus, smoking, and obesity.

Although in an article, The Epidemiology of Esophageal Cancer, written in The World Journal of Gastroenterology, said, “no particular risk factor is responsible for the rising incidence of esophageal adenocarcinoma.”

In our family, my husband’s uncle died from esophageal cancer.  Our youngest son, born with an acid re-flux issue, now in his thirties, he schedules medical monitoring, and watches his diet.

What preventive daily home measures can you take?

  • Quit Smoking
  • Eat Vegetables, raw vegetables are more protective than cooked vegetables.
  • Eat fruit
  • In both fruits and raw vegetables, vitamin E, C and Carotene are protective.
  • All that to say this… research to understand what foods, smoke and other ingested materials, affect the health or deteriorate the lining of the esophagus.

Again, hear me yelling, if you are having trouble swallowing get help immediately. Difficulty swallowing is what sent us running to the doctor for help.

Perhaps if we realized the swallowing issue was not just indigestion, my husband and I may have had a chance for more years together.

Who I Am and Why I Write

  Who Am I

Artist, Pianist, Teacher, Writer, Child of God

Why I Write

I write because esophageal cancer forced my family on a journey we did not choose.

I write because the suffering esophageal cancer delivers on families and their loved ones leaves me breathless.

I write because of the Helper I turned to when facing terminal cancer with my husband, Werner. It broke my heart, and tested my courage and faith.

I write because I was his wife, lover, friend, and support during the three years we journeyed the esophageal cancer road together.

I write because of who protected me from despair.

I write to testify to one man’s never quit courage, perseverance, and faith when esophageal cancer assaulted his physical strength, emotional well-being, and his will to live.

I write because I must.

I write because it was his story, my story, our story!

Diagnosis Terminal Cancer-Part I

DSCN3871“I look to the mountains, where will my strength come from?

January 2003 – Who can save my husband – this mountaineer, a dad, a man of integrity, courage and faith, this man known as a “great guy.” Who can save him from terminal cancer? Can his doctors, can God, can I? When all the answers are no and the agony of terminal cancer trumps coping, how can I sustain my courage to face what is coming?

By Christmas, Werner said to a friend who said, “How are you doing?”  “When I wake, I don’t have any energy. I feel wiped – out. I’m just hanging on.” It set my alarm bells ringing.

On January 28, 2003, the sun rose pale and cold and the cancer wheels ground forward. As usual, we walked in silence from the parking lot and into the hospital for the appointment to hear the CAT SCAN results. Holding hands, we walked our beaten path along the oncology corridor. As usual, we stopped to look at the artwork displayed doing its job to distract. In crowded Oncology, we found an empty love seat along the wall. We sat. We waited. Having had lots of practice, we waited well. He read. I wondered.

The nurse called our name. I said, “Okay, love, here we go.”

Always upbeat, he slipped his arm around my waist. “We’ll be fine.”

We entered the back rooms where test results might mean a matter of life or death.

In our tiny windowless exam room, we sat in our usual worn waiting chairs. But nothing about this day turned out usual. Werner’s nurse stayed. She usually left after she entered Werner’s vitals and weight loss in his health chart.

Werner’s oncologist arrived, and pleasantries followed. “Hi, Carla and Werner. How are you?  Nice to see you. How’s the skiing Werner?” All the while Werner lived with cancer’s assaults on his body, his extraordinary energy and continued active involvement always amazed his medical team.  His oncologist said, “How are you doing?”  “Great,” was Werner’s reply.

And then the silence hung heavy and lingered too long before the hammer came down shattering our world like the breaking of a crystal glass.

“The CAT Scans are back, and I am afraid the news is not good. We are sorry to tell you that your cancer has returned.”

“Bummer,” said my beautiful husband.

I dared not look at him.  My fragile emotional hold retreated to a hiding place for protection.  I reached for his hand and held on tight to hear cancer invaded Werner’s lymph nodes, pancreas, and liver. It spider-webbed around vital organs prohibiting surgical removal. Cancer acted like a parasite. It ate his food first sucking out the nutrients and left him the trash. And then came the worst, “There is no cure. Perhaps six months.”

Everyone’s eyes fastened on us. Tense. Silent. Waiting. How will we respond? Anger, hysterics, blame?  No, we sat. We did not move. The atmosphere in the room felt oddly calm.

The oncologist broke the silence and offered the palliative program chemotherapy and without hesitation, Werner said, “I will fight. When do we start?”

As if on cue, a palliative care doctor arrived followed by his nurse and Werner’s nutritionist. After we had accepted all the palliative help offered, we stood to leave, amid hugs and good wishes. Werner walked half-way through the door, turned and said, “I am going skiing tomorrow.”

 

Part II: Beyond coping when facing a loved one’s terminal cancer. Who Will Help?

“My strength comes from God who made the mountains.”

Carving for a Cure- Loon Race Team Ski-A-Thon

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APRIL IS ESOPHAGEAL CANCER AWARENESS MONTH

Norris Cotton Cancer Center & Boston Children’s Hospital Benefit From Loon Race Team’s Efforts. Over $10,000.00 Raised from the First Annual  Ski-A-Thon Fundraiser, Carving for a Cure for Cancer, Held at Loon Mountain, Lincoln, NH,

IN MEMORY OF WERNER ZWAHLEN, WHO LOST HIS BATTLE WITH ESOPHAGEAL CANCER JUNE 27, 2003                                                                                            

The money will be shared with Norris Cotton Cancer Center At Dartmouth Hitchcock Medical Center in memory of Werner Zwahlen, for esophageal cancer research. Werner was Alpine Director of Loon Race Team until his death.

 In January 2003, Werner’s cancer returned. Because cancer invaded his vital organs and metastasized throughout his body, surgery was impossible.  Along with the cancer’s return facing terminal resided in our lives. Werner chose to fight. Palliative chemotherapy bought time. At the end of the bad news session, he announced to his medical team crowded into the small exam room, “Tomorrow, I’m going skiing.”

Everyday, he skied. He headed for the mountain to work with his coaching staff and young racers. No one knew that underneath his ski clothes, his once strong athletic body weighed a scant 100 pounds.  Remnants of  steely muscle covered his bones, like loose clothing.   Characteristic of Werner, he used his strength to turn his attention to helping others. Courage, tenacity, and faith, kept him standing.

His family is humbled and honored to see his legacy continue to encourage and help others. We are grateful to the families and young racers of the Loon Race Team for organizing the first annual Ski-A-Thon, Carving for a Cure.  

 Fifty percent of the money donated will go to Boston Children’s Hospital in Samantha (Sammi) Burns name. She is now in remission.                                                                                            

Photograph by Stefan Zwahlen – stefanzwahlen6strings@gmail.com

The Sixth Gate – Living Normal the Abnormal

    December 2000, January 2001, February 2001 

   Werner began the aggressive chemotherapy protocol against Stage III  esophageal cancer. He received the standard chemotherapy drug, Docetaxel.  When his medical team asked  if he would like to volunteer to become a research patient for an experimental  cancer drug, Werner responded without hesitation, “Let’s just do it.”

How did he manage the time his protocol demanded? How did he carry on with his responsibilities as Alpine Director of Loon Race Team and Holderness School Alpine Ski team coach while ongoing treatments?  One way –  Werner’s way. To his protocol team, he said, ” If you can’t schedule my treatments first thing in the morning, I am not going through with this, because I need to be on the mountain by noon every day.”

Werner’s treatment protocol included chemotherapy twice a week for two months, followed by five days a week for six weeks of radiation mixed with chemotherapy. When the time for the radiation treatments to begin, Werner faced driving an hour one way over mountain roads to arrive at Dartmouth-Hitchcock Medical Center. When family members, friends, and colleagues heard about this schedule, they not only wanted to help preserve Werner’s energy, they wanted to spend time with him. So they joined to become a team of chauffeurs. Once we knew the schedule for Werner’s treatment protocol, a friend or family chose and signed on a particular calendar day to be the driver.

During the six-week daily radiation therapy, a friend or family member walked into our kitchen at 7 o’clock in the morning. They always arrived with a smile. After coffee, hugs, and few laughs, the two travelers left the house for the hour drive to the medical center.

These faithful family members, friends, and colleagues showered us with the love of giving. Their time with Werner preserved my energy for later. Werner did not miss a day on the mountain.

                                      

         

Top Photo: The Big Sky Gate photograph taken by Stefan Zwahlen

THE SECOND GATE – DENIAL

We walked towards the hospital exit doors. We left behind the patient beds, normal days, and life, as we knew it. We pushed open the hospital door, exited and entered the second gate of Werner’s Run, denial.

“Why did you tell her that I have cancer?” Werner sat at the long kitchen table looking at me as if I told a lie.

I had just said good-bye to my mother who telephoned to ask the results of the endoscope. I told her that the endoscope results were malignant.

Incredulous that he asked me such a question, I stood at the end of the kitchen table with my mouth hanging open…angry, stunned, speechless.

He wasn’t finished… “I don’t want my staff, the kids or the club members to know. I can handle this by myself. No need to make a fuss over it.”

Classic Werner, a stoic Swiss. He expects us to go on as usual and pretend that cancer has not entered our home. Am I to keep this a secret? I realize we are both in shock, but he can’t ask me to deny that we are walking down an unknown and frightening path. I am all too aware of his need to keep all things private, emotions, and what he accomplishes, but this confrontational question and request for secrecy is unacceptable.

Holding back tears, I said, “My love, you are going to lose your hair. How will you explain that to your staff and family?”

Without looking up, he sipped his tea. I sat down next to him. We didn’t touch or speak. In that long tortuous silence, I began to realize, when cancer strode across our home’s threshold, it brought with it other baggage containing its own set of psychological, emotional and spiritual rules. I knew if Werner left the table now and walked out the door enclosed in his usual silence, a wedge would develop between us. Shocked, stunned, sad, whatever I felt or he felt, we had to communicate right then or an unhealthy stoic silence would set the standard throughout this fight. I prayed, please don’t leave the table. Cancer without physical treatment will multiply, fester, and finally kill. Denial has the same possibility to kill us.

Smothered in the silence, I waited. Finally, Werner said without looking up, “OK, you can tell your family, but no one else, not yet anyway. Give me some time. I will figure out how and when I tell my staff.”

“I respect that. One thing we cannot do is to hide.”

Relieved, I still tread softly, because, not only is he an emotionally private man, he carries on with whatever he does, without the need to talk about it.

“We need to put everything about this cancer on the table, so that Stefan, Jurg, family or friends won’t be afraid to ask a question, or talk about it with us. I need to talk about it. I can’t bottle it up. You know that people will want to offer help and encouragement. Helping will also be a comfort for family, friends, your staff, and your racers, because they care about you. What happens to you will emotionally affect others. Forcing my silence will build a barrier between you and me, our children, family and friends. How can we handle this challenge if we can’t speak about it?”

He took my hand in his and finally looked at me. “Just give me some time. I know this is hard for you. We’ll be ok.”

He kissed my cheek smudging my tears. I stood up, picked up his cup and put it in the dishwasher. He got up from the table, folded me in his arms, and said, “I love you. We’ll be Ok. I am going out for a bit.”

Tasting my tears, I smiled at him and whispered, “Ok.”

Together, we made it through the cancer’s second gate – denial.

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