Below are stories from people who have been affected by esophageal cancer. They are people who are going through their journey with esophageal cancer, survivors, family members of those who passed away from esophageal cancer and family members of those who are currently undergoing treatment for esophageal cancer.
We are very thankful to these men and women who have shared their personal experiences with us in order to bring awareness to this devastating cancer.
Too often, esophageal cancer is ignored and disregarded. There is a tremendous need to bring not only awareness but tools and resources to encourage early detection and advocacy and actual funding for esophageal cancer research. These personal stories do just that. They are each equally important and deserve to be published. Please do not reproduce any of these stories without our permission. You may contact us with any questions or comments.
Do you have an experience with esophageal cancer that you would like to share either publicly or privately? To learn more, please visit: Share Your Story.
Personal Stories of Esophageal Cancer:
Sara, In Loving Memory of Father: William B.
My Dad started having swallowing problems in August, 2019. He was 68 years old at the time, retired, but working hard labor side jobs to keep him fit and busy. My Dad was always a hard worker. That summer, a tornado and high-speed winds caused a lot of damage in the nearby towns, as well as the small town my parents lived in.
My Dad started to noticeably lose weight and began choking on food, feeling like he could not swallow and had a build-up in his throat. This was a man who loved food and suddenly was not able to enjoy the foods he loved. He felt more tired than ever before, after some 50-years working before retirement. He went to a doctor in town (being in a remote location, healthcare providers were slim). The doctor told him he was anemic but probably working too hard, as many people were after the storm. He was sent home. We could not believe this is the answer he received.
We sought out a nurse practitioner in town, but she was on vacation for three weeks. He could not get in to see her until almost a month later (which was then in September, 2019). She felt he should get a scope (endoscopy), which could not be performed until mid-October, 2019.
After the scope, the doctor walked in shortly after, with that grim look on his face. We knew it was bad. He told us my Dad had cancer – two tumors found on the junction of the esophagus. He told us we needed to “get on this” quickly. My Dad had a CT scan that day.
The next week, he met with an oncologist who told him he had stage IV metastatic esophageal adenocarcinoma. It was already in the liver, in the lungs, lymph and left hip. He told him to go home and live the rest of his life, doing what he wants. When my parents asked about prognosis, he provided the grim details, along with a poor bedside manner: 4-7 months without chemotherapy, 1 year with chemotherapy.
As a family, we agreed a second opinion was in order. We achieved this with a new appointment in a different healthcare system, known for medical research. This oncologist was much more promising, giving treatment options to my Dad, giving him hope. Although it was palliative, his hope was to give my Dad more time. That oncologist, based in another city two hours away, partnered with former colleagues, now a part of another hospital system.
My Dad had a great team, composed of aggressive doctors involved in research and clinical trials. He began chemotherapy in November, 2019. The first scan revealed some growth of the liver tumors. The scan in January, 2020 revealed stability – nothing had grown. He was switched to a new chemotherapy combination that had good results for some areas, but growth in others.
The next scan revealed that the chemotherapy had stopped working. He was switched to immunotherapy, which made everything grow more aggressively. By July/August, 2020, they tried a different chemotherapy combination that seemed to shrink the liver and esophageal tumors considerably – his cancer team felt encouraged by this. However, it spread into his other hip.
By September, 2020, they ran out of options when things started growing again. We sought a third opinion through a contact at a prestigious hospital system in another state. That cancer team suggested a few more options and more PDL1 tests to hopefully find more targeted therapy. Those results were the same when he started treatment, so any promising immunotherapy, my Dad would not be a candidate for. They suggested targeted radiation and an oral chemotherapy pill. My Dad’s cancer team was on board with this new path. However, my Dad started complaining of a lot of back pain.
On his next treatment date, he was instead referred to the hospital for pain management. What was found was that he had bone on bone in his spine. A surgeon performed a routine surgery to clean up that area so that he had some relief. He read recent scan results to my Dad after the surgery: the cancer had spread to the bones and the spine. He mentioned a couple of options, but basically told my Dad he did not have much time.
My Dad healed and felt better but started having trouble walking. Getting increasingly weaker, and soon, could not swallow again. A feeding tube was put in October, 2020. By late October, my Dad had a lot of trouble walking and with balance and his voice was becoming hoarse. By November, he was using a cane and then a walker. He started radiation on the esophagus to be able to eat again – 5 days in a row of this. He only had one dose of the oral chemotherapy pill.
The day after, he could no longer get out of bed on his own. His legs gave out. He needed a wheelchair and was even more weak. A whisper was no longer, as he had no ability to talk. We communicated with him through writing on paper. Soon, he lost all ability to write. By mid-November, 2020, he lost all ability to walk on his own but still wanted to be taken to the bathroom, shower, etc. It was getting too difficult and too risky for my siblings, Mom, and I to carry and lift him. He started exhibiting the signs of end of life, which I had been researching for some time.
He started hospice November 18, 2002. By Thanksgiving, 2020, he tried to enjoy dinner with us, but only lasted 10 minutes at the table, horrifically choking on his food. He was bed-ridden after this. He could no longer eat solid foods and only used his feeding tube. In the beginning of December, 2020, he started withdrawing, sleeping most of the day and totally bed-ridden – no interest in getting up anymore.
On December 7th, we were told by the hospice nurses that “it would be soon.” That last week of his life will never leave my mind. Watching your parent become a shell of the person he was, a skeleton, not really knowing his surroundings or who the people were that were taking care of him (his family), is the most painful, yet rewarding experience I have had in my 42-years on earth. I would never change that, as I was able to spend such quality time with my Dad.
On December 12th, my Dad passed away at 7:39 AM, surrounded by his soul mate and wife (my Mom), my brother, sister, me and his two adoring dogs. He is missed beyond belief. We still do not understand why this cancer is not prevented. Why there is little awareness about it. Why it is still considered a rare disease yet is increasingly affecting men and women as the years go on. It has a poor prognosis no matter what. On his deathbed, I told my Dad that I would keep his legacy alive and that I will do whatever I can to be involved in the awareness of this deadly cancer that made me a fatherless daughter.
Bernadette, In Loving Memory of Husband: Bruce
In December 2019, my husband, Bruce, noticed he was having trouble swallowing. We also noticed that his appetite was not great and he had a slow weight loss. I suggested that he get it checked out. Our primary care physician ordered a barium swallow that did show some irregularity. Our primary care physician then ordered an endoscopy that took forever to get.
On February 6th 2020, the result of his endoscopy was adenocarcinoma of the esophagus. We went to a Boston Hospital and his diagnosis was a small tumor at the very bottom of his esophagus. It was Stage III, but the lymph nodes are not involved.
It was decided he was going to have chemotherapy and radiation followed by surgery. He started treatment right away and did well with the chemotherapy and radiation. However, errors were made during his surgery that ultimately killed him. He died July 18th 2020, about 4 months after his diagnosis.
Tom M., Survivor
Today I am a 62 year old white male, originally diagnosed with stage IIB over 10 years ago at the age of 51. After the original diagnosis and a later PET scan, before my surgery, my staging was changed from IIB to III.
I spent 16 days in the hospital. I went in weighing approximately 210 pounds and I came home weighing 167 pounds. I underwent preoperative chemotherapy and radiation and then postoperative chemotherapy treatments.
Related post surgical events:
1. I had a second surgery approximately 3 months later, after experiencing a large abdominal incisional hernia.
4. Regurgitation of meals beyond anything other than small feeding portion size.I consider myself fortunate to be here today, but the side effects of the life saving surgery and treatments are very life altering and were never really discussed by any of those I received treatments from at the time.My biggest regret, with a high insight perspective, were the 5 plus years I lived in fear of a recurrence. I let the cancer and the fear of the return of my esophageal cancer define me.Note: Eight years after esophageal cancer surgery, I was diagnosed with prostate cancer, had it removed only to have a chemical prostate cancer recurrence some three and half years later. I underwent radiation treatment and currently am doing fine.
Brenda L., Survivor
“In January of 2016, one of my brothers passed away from pancreatic cancer. Six months later, my youngest brother was diagnosed with stage 4 colon cancer (NED today).
In 2017 I had noticed I was having difficulty swallowing food but thought it was from the lapband I had; thinking it had twisted sideways. I needed it to be made medically necessary to be removed. I went to the GI doctor and explained my family history.
He agreed a colonoscopy was needed; I told him I’ve been experiencing reflux but he wasn’t concerned, “let’s give meds”. I lied and said I had coughed up blood just to get the endoscopy. It was scheduled for November 17th. That was the day my life was forever changed! I woke up to hear “you have Esophageal cancer “. Then the fight began; T3N0M0!!!! Chemo and radiation therapy, Ivor Lewis surgery. I’m two years post op and NED (by the grace of God).”
Todd C., Survivor, Diagnosed in October 1988:
“Every year about this time I find myself in awe that I have been blessed with another year. You see it was the first week of October 1998 that I was diagnosed with Stage III esophageal cancer.
Really, I had few symptoms, a little indigestion, nothing exceptional. Sometimes when I would eat there would be pain directly behind my breastbone when I would swallow, but it would be fleeting and manageable. My wife upon a visit to our family doctor with one of our children, mentioned my symptoms to our doctor who advised her that I should get scoped. When she shared this with me, I of course blew it off as nothing and didn’t think any more about it.
A month or so passed, one day I received a call from our family doctor asking me if I had made an appointment to get scoped yet, I replied that I had not. He encouraged me to do so, and to do it sooner rather than later. I remember hanging up the phone and thinking that it was quite odd to get a call from our doctor, he really wasn’t an alarmist and I didn’t really have that close of a relationship with him. Still, I ignored his advice.
One day while walking into work I was eating a banana while crossing the parking lot. I took a bite, chewed and swallowed, stopping me immediately in my tracks. I couldn’t breathe in or out, and it felt as if someone had stuck a knife in my chest. I waited slightly hunched over for the pain to ease and to be able to take a breath again, and as in the past, this did occur, and I went on about my day thinking that it was going to be a rough one. Again, I chose to ignore the warning sign.
I was 6’2” and weighed roughly 240 lbs. solid, an ole farm boy. I loved to work, and I loved to eat, but for some reason I found myself changing my diet, almost without even realizing it until I had lost about 30 pounds in a one-month period. I found myself down to about 210 lbs. and told everyone around me how easy it was to lose weight. Why I had simply made a few changes in my diet and look, I dropped 30 pounds in a month.
It was at that point that I started to put all the pieces together, the pain, the heartburn, my doctors concern to a point where he contacted me, the unintentional diet change, and of course the weight loss. I decided it was time to get checked. It had been about 4 months since my wife had made the initial statement to our family doctor about my symptoms.
I was referred to a wonderful gastrointestinal doctor and on the day of my scope I asked him what exactly we were going to do. He explained the procedure and added that he really didn’t expect to see anything alarming, but if he did, he might biopsy it. Upon completing the scope he told me that I had some irritation and bleeding in my esophagus right at the gastroesophageal junction (GEJ) where the stomach and esophagus come together, and because of that he did take some biopsies, but did not expect them to be anything.
Three days after my scope, I received a call at work from my doctor. He explained that he had received the report on my biopsies and that it came back “suspicious”. I asked suspicious of what and he stated that I had cancer. I asked what I needed to do. He said I would need at minimum a surgery and I told him that he was a surgeon and I liked him so okay.
His reply was NO. I said “oh, you don’t do that kind of surgery”, and he assured me that he did, but he would not do mine. I asked why, and he told me that at 36 years old I needed the best of the best and he was not it. He went on to inform me that there were doctors in the area that would do it, but not to let them. Obviously at this point I realized the gravity of my condition.
I ended up at case Western University Hospital in Cleveland, Ohio in the hands of some wonderful doctors, Dr. John Murphy, now retired, Dr. Judy Clayman now retired, and Dr. Amitah Chak, still there and an absolutely fantastic individual.
I completed 5 weeks of radiation, a Gastroesophagectomy via Ivors-Lewis pull up method, followed by 6 months of chemotherapy with Cisplatin and 5FU. I had 5 lymph nodes in my chest that were removed, come back positive, but no (metastasis) METs to any other organs.
There are many, many details, concerns, scares, etc. along the journey that I began in that first week in October of 1998. But I am here, I am healthy, I live a very, very full life. I work at my job 50+ hours a week. I have horses, and donkeys, and other livestock that I care for at home. My wife and I enjoy travelling and life is good.
There are still side effects, and life changes that I live with today, but nothing that can’t be managed.
I don’t know why I have been fortunate enough to survive this devastating disease. I have not made the best lifestyle choices along the way every time, but for whatever reason I am good.
A cancer diagnosis, no matter how bleak, is not a death sentence. I am proof of that. I am grateful to have had fantastic doctors, a wonderful wife, and incredible support team.
My fervent hope is that research can come up with the answers and cures to prevent others from having to take the path that I had to go down.”
Dara M., In Loving Memory of father: Joe M.
Dara is the lead event coordinator for the annual Esophageal Cancer Awareness Run NYC events.
For many people, indigestion, acid reflux, GERD and heartburn are ailments that can be treated with common over-the-counter medications. More severe cases of gastroesophageal reflux might require stronger drugs that can be prescribed by a doctor for as long as symptoms persist.
This was how my father, Joseph M., began his battle with esophageal cancer.
Even though my dad was a smoker and drank when he was younger, there were no signs or symptoms of any complications until ten years after he’d been working at a print shop in Queens, New York. Exposed to paint thinners, chemicals and other toxic fumes that emitted from heavy machinery at work, he came home every day wreaking of industrial substances.
His heartburn began around 2005 and was a mild nuisance, which he solved by devouring dozens of boxes of Tums every week. When he went to the doctor a couple of years later to complain of more painful indigestion, as his diet began to change because he couldn’t eat spicy foods or enjoy pasta sauce the way he used to, they prescribed pills like Nexium to quell the stomach acid and discomfort.
We thought his chronic heartburn would simply need continuous medication until the afternoon of Fourth of July in 2008, when we were in the city and on our way to see the Macy’s Fireworks display – a father/daughter tradition we had for several years. We went to a delicious chicken place that had some awesome cornbread! It seemed to happen so abruptly – as my father was in the middle of eating, food suddenly became lodged in his esophagus. We didn’t know it was even possible for food to get “stuck” in this digestive tract, but he couldn’t get water or any food to flow down to his stomach.
Suffice to say, our father-daughter day was cut short as we left the city and he tried to push the food down with more water, which only worked for so long. Eventually, the food that was lodged in his esophagus slowly dissolved and the scare of seeing my father not being able to eat was only part of the problem.
Another trip to the doctor – and explaining to a gastroenterologist what happened – seemed to rip open another bag of unwanted surprises. The blur began as my father was given appointments with specialists months after that Fourth of July incident. X-rays showed that there was some type of obstruction and tissue inflammation in his esophagus. By September or so, doctors finally ordered my dad to have an endoscopy so they could biopsy the cells.
There were all sorts of words and medical terms thrown around as my dad was scrutinizing and amending his diet – Barrett’s esophagus, esophagectomy…but I will never forget the day we met with a surgeon who followed up on the gastroenterologists findings. The day they told us my father had esophageal cancer. My reaction to this years later remains a numbing haze, even though I recall wondering what this disease was! I knew cancerous cells could develop anywhere in the body, but this heartbreaking news led to a slew of nightmares that me, my dad and I’m sure thousands of other families have had to experience after initial diagnosis.
At first, doctors recommended chemotherapy and radiation to shrink the cells and advised us that surgery was a last resort to remove the cancer and any infected lymph nodes. Before my dad’s chemo and radiation even began, his oncologist recommended my dad have a port-a-cath – or chemo port – placed in his chest to administer medications and blood tests. I will never forget how my dad went in for what was supposed to be a simple outpatient procedure the week of Thanksgiving for the chemo port but instead, as the doctors were inserting it into his body, the tube punctured his lungs. Not only did he miss Thanksgiving of 2008 because his left lung had collapsed, his chemo/radiation treatments were set back by a few weeks as he recovered from the painful blow.
As many cancer patients experience, my dad endured rough chemotherapy treatments and his appetite – along with the cancer – was very slowly shrinking. He was ordered to have endoscopies every few months, which became a scary routine to prep for and recover from. We were told his cancer was in Stage 3 and that there was a chance he’d fight it – even after it seemed to go into remission for a couple of months in summer of 2009.
The hardest part of seeing a loved one suffer as they battle esophageal cancer is knowing that they can’t eat normally, even after rounds of chemo and radiation. Their diets completely change – if they can manage to eat at all – and losing weight becomes a major concern, as they’re not able to take in the nutrients the body needs to function. Drinking nutrition shakes and supplements was also sickening at some point.
Sadly, in early 2010, my father found that the cancer cells had returned. We also returned to the idea of surgery. This would ultimately involve, as the oncologist told us in detail, having part of the esophagus removed and surgeons pulling up and rebuilding a portion of the stomach. This invasive procedure would be two-pronged. Yes, it would essentially remove the central portion of the cancer and some lymph nodes, but there was also the risk of the cancer spreading post-surgery.
One of the worst aspects of having an esophagectomy, as I’ve heard from others with the same experiences, is not being able to eat for weeks or months after the surgery. If my dad opted for the surgery, he would have had to use a feeding tube for a long time and the recovery from the procedure would have possibly been ten times worse than continuing short-term treatment.
My father looked to me for direction – continue with chemo or go under the knife? I couldn’t honestly bear to see my dad having any more invasive procedures and by spring 2010, he painstakingly asked me to enroll him in a hospice program. What drove the knife through my heart was knowing he didn’t want to die and he didn’t want to become a statistic of a cancer that neither of us had ever heard of until 2 years before when he was diagnosed.
It was during this time, as my dad was provided with heavy medications at home, that I began looking up esophageal cancer on social media. I started reading other families’ experiences and diagnosis. It was truly unbelievable to me that all of us experienced this same journey – many only lasting 2-3 years before the battle became too much to handle nutritionally, mentally, physically, emotionally and medically. A lucky handful were able to say they were survivors after surgery.
Every story I’d read, and still read today, is filled with shock at how insurance companies refuse to cover some of the tests for esophageal cancer in its early stages. And then I question, can this cancer be caught early enough somehow to prevent or slow down cells from becoming cancerous? Are doctors ignoring the serious warning signs and pushing pills like they did to my dad before that doomed day which changed our lives?
My family got the call on October 16, 2010, a little over 12 hours after we had to place my father in a facility for hospice. I was only thankful that he wasn’t suffering anymore and he wasn’t fighting to stay alive.
Over the past few years, as I looked back on my father’s battle, I became a runner and subsequently found that it was rewarding to participate in 5K races for a good cause. I’d run races bringing awareness to ovarian cancer, another disease for which there is no screening, as well as testicular cancer.
However, after much research, I’d discovered there were no functions or races to benefit esophageal cancer in New York City. With a growing number of New Yorkers being exposed to toxic fumes and work conditions, no matter how healthy their lifestyles are, I was surprised to find that no one was sponsoring an event to bring this complex cancer to the forefront of the public.
As I continued to read stories about those whose lives were taken by esophageal cancer, I noticed the trends in diagnosis, treatment and lack of awareness/education. Finally deciding that I wanted to help spread the word to more people in my city and give others tools to recognize their own health conditions, I scoped out an organization that could assist with my new mission.
I came across the Salgi Esophageal Cancer Research Foundation on social media and started 2019 with a simple phone conversation with the organization’s Executive Director, Christina. We also shared the same experience, as she explained the passing of her grandfather came after a similar struggle I’d gone through with my father.
With no races/walks, fundraisers or awareness events in my city aimed at esophageal, I proposed we host an event in Brooklyn at Prospect Park in April to bring light to the lesser-known cancer. After a little more research, I decided it would be a great idea to find a race organization to provide the provisions for the event. Working out the details with elitefeats, a race organization I’m quite familiar with, helped bring the mission to life.
Fundraising for esophageal cancer awareness is more than just about coming to our event in September and running for a cure. Through sponsorship and dedication to spreading the word, my ultimate goal is to provide others with tools to make themselves and their loved ones more vigilant when it comes to their digestive health.
The “Esophageal Cancer Awareness Run NYC” will serve as a resourceful awakening for many New Yorkers who aren’t familiar with this disease. I’m also hoping it will somehow reach medical experts and specialists who often brush off those signs or are hesitant to diagnose something that can become more serious.
Stories like my dad’s are becoming more and more common and it doesn’t get any easier to recall the way his life ended. My passion now is to keep his memory alive by hosting this fundraiser that will hopefully help others write a different story in years to come.
Borden, Survivor. Story by wife, Mary A.
My husband was diagnosed on March 3, 2009 with stage 3 Esophageal cancer. He fought it with chemo and radiation first then after 2 months if intensive treatments had the 9.5 hr surgery to remove the cancer. He had to learn how to swallow again and ate through a feeding tube for 7 months. It was such a scary time for us. Jump ahead to ten years later, he’s doing great!!! He survived with lots of care and prayer. My prayers were answered and I hope his story will help others know, yes you can beat this awful disease!
Natasha L., In Loving Memory of husband: Randall L.
My husband just passed away. when we found out he had esophageal cancer it was already Stage 4. We found out the day after Christmas 2017. He passed away February 8, 2019. This disease i am wishing and hoping gets more noticed more than it has. we never heard of this disease.
When we found out the disease had affected his liver, and nodes, it was contained for a while. Then after 8 months it started growing again. The doctor changed medicine, that lasted for a few months. Overall, he wasn’t having problems with the chemo, he was doing fine. We took several trips. Later his blood test showed growth, so his doctor decided to use Keytruda (pembrolizumab). He only had one treatment because November 2018 we though he had sciatic and it never got better, it got worse. After an MRI showed tumors were on his spine and on the brain, he got radiation treatment for two weeks and he was fine, just weak from the treatment.
Then he started coughing up blood. I took him to the hospital, and they found out that the area where the cancer was, was irritated and some old food was stuck there. During all this he would eat pretty good. In the later stage he would choke a few times and decided not to go out to restaurants and just eat at home. However, the doctor pushed the stuck food down, he was ok after that. Then he coughed up blood a couple more times. The doctor discussed with us about doing surgery, but that would narrow the esophagus even more, so it was decided to have him take an antacid pill prior to eating. That helped for a while. at the same time, he was getting weaker.
We went for an appointment about two weeks before he passed, and the doctor told him he was too weak for chemo or Keytruda. So, the doctor put him on hospices. He asked the doctor how long does he have and the doctor said 2 1/2 to 3 months. Well, that didn’t happen. we signed up with hospices on February 1, 2019 and he passed away on February 8, 2019. That was too fast. However, I did notice that between the time the doctor told us no more treatment my husband could not hold a water bottle he would drop it. He could not operate the remote control. January 14, 2019, he was walking ok, using a cane then a week or so later, he had to use a walker. His feet, ankles and legs swelled, they gave him Lasix (furosemide), that didn’t help. His legs felt like 10 pounds each. This all happen with a couple of weeks. I guess his body just could not take it anymore. The cancer had spread. I will miss him dearly!
Jerome J., Survivor Story by wife, Beverly J.
The story I am about to tell, is how my husband, Jerome, survived esophageal cancer. My husband owned a painting company and we were getting ready for work, and he said to me “it bothers me to swallow sometimes,” and he pointed to the area. I said “here, try this that I take for my acid upset.” He did and the next day I asked him did it help? He said “yes, but I think I still want to see a doctor about it.” So we went to our [primary care provider], and told her what is going on. She sends him to have the necessary testing done, and the results came back cancer of the esophageal tube. None of doctors in our small town had dealt with this, so we were sent to Ohio State Hospital. The doctor there told us he wanted to do his own biopsy to make double sure. We got the same results. But the surgeon told him, “somebody up there, (pointing to the sky), was really looking out for you, the size of your tumorous cancer, is no larger than a nickel, and people usually don’t [find it at this size.] They started him on very aggressive chemotherapy, and radiation. On June 13, 1996 the surgery was done and he’s been fine since.
In Loving Memory of Darrin L., by Sherry L.
My brother was 57 years old when he was diagnosed with esophageal cancer. One day he wasn’t feeling well and walked into the E.R. at a local hospital where he lived. He was diagnosed with esophageal cancer which had spread to his spine, abdominal and neck lymph nodes, but not his brain. He fell in the hospital and was unresponsive for over 10 minutes, CPR was performed, and he coded. He was admitted to ICU, coded again, and was placed on life support.
There was no neurological activity and he passed away two days later within minutes of being removed from life support. I don’t believe it was the esophageal cancer that killed my brother. I believe it was the result of the fall. My brother had worked up until the day he walked in to the E.R. with abdominal pain, had no prior medical history, other than a tonsillectomy when he was 12 years old.
No one knows how long he had cancer, but he lived life to the fullest until he passed away. Had he been treated for his cancer, the doctors said he might live six (6) months. I believe he suspected something was very wrong, but chose to wait until he couldn’t take the pain anymore.
My family is devastated for the loss of my brother; my 85 year old father cried and said “no one should have to bury their child.” You don’t hear too many people being diagnosed with esophageal cancer, but when one is diagnosed, the prognosis is poor.
In Loving Memory of Karen P., by Katie M.
Diagnosed at thanksgiving (2017) and passed about 6 weeks later, (January 2018.)
The story of our Karen is a story of adventure, love, passion, inspiration and courage.
In a cramped, plain waiting room in UM hospital, a crowd grows steadily from morning ‘til night. These are the close friends, closer friends, family, crazy swimmers, drinking buddies and running buddies of a woman who has lived a full and intense life, a woman who made everyone she met feel important and accomplished, included.
Karen is only 49, but has crammed at least 100 years of living into that time. She often seems both more youthful than her age and also wiser than her years. And so, the people who fill the waiting room and share their favorite memories of Karen on this private Facebook group come from a range of decades, backgrounds and locales. But we are equally enamored of her for her spirit, kindness, energy, forgiveness, optimism and endless passion.
Karen is an Ironman triathlete (yes, she’s qualified and raced Kona, we say when we brag about her) and a multiple-time Boston Marathon qualifier and finisher. She really is cool. This past year, she has cared tirelessly and lovingly for her mother. She always talks adoringly to anyone who will listen about her amazing, brilliant, successful brother and sister; they are royalty. It is clear from listening to her talk, that she has found a kind companion in Pat. She is devoted to that running dog, Buddy. In fact, Karen only knows amazing people and animals, rock stars; this is because, by knowing Karen, you are thereby elevated. To know Karen is to be instantly inspired and mesmerized. It is also to be loved. She would drive hours for a short visit, a long run, to be supportive, to cheer on a friend’s athletic endeavor, to try a new lake or join in on a fun race. Karen is passion, strength and love incarnate. She doesn’t do small.
So it shouldn’t have surprised her loved ones (aka: admirers, aka: us), the hundreds of people wanting to make the pilgrimage to UM hospital, the friends on each coast and multiple continents, that she would also finish dramatically. We were all able to Google esophageal cancer and see what the prognosis is. But this is Karen, she never does things the average way. She is strong and amazing. She baffles people routinely with her astounding feats. I can’t be the only one who really believed she would pull off a miracle. But I really did believe it.
Our Karen is a big personality in a strong and wiry little frame. A bundle of energy, like a hummingbird and a cheetah all at once, with a whole lot of lovey dog for good measure. She is full of and surrounded by love. A soul with the amazing gift of taking in the fuel of love from others and multiplying and reflecting it out tenfold. Even as she is suffering the cruel effects and pain of this disease, she is easing the discomfort and pain of others, making US feel better.
She finished Ironman Maryland strong, healthy and passionate on Oct. 7. She started a new job she was excited to throw herself into with the same passion soon after. She doesn’t do small, even with cancer. She is bigger than life and that fed the disease too fast. Her courage, passion and energy once again serving as incredible fuel, but this time for her undoing.
Now the 100s, probably thousands of us made to feel part of the elite who know her, stream (physically and virtually) into Ann Arbor for another hug, kiss, cry, laugh, story. We all desire one more chance to love her up, one more chance to tell her how important she is in our lives, one more fix of Karen, who makes everyone a star when they reflect her brilliance.
Lisa D., In Loving Memory of husband: Scott D.
My husband died 8 weeks after his official cancer diagnosis in 2015. He had just turned 49 the month before his death. He started with acid reflux, GERD, and Barrett’s Esophagus while he was still active duty Navy. Doctors told him every 3 years for a scope was okay. It wasn’t, it should have been every year as we would have caught it a lot sooner. It’s heartbreaking to see the one you love not be able to swallow even his spit because the tumor fully blocked his esophagus and his bucket list before he died was to swallow a drop of water, which did not happen. Horrible, Horrible disease. Trying to do some good out of a horrible situation and started a scholarship fund in his name and we give out yearly scholarships at Woonsocket (RI) High School where he graduated from in 1984 along with a scholarship to someone military related in the Virginia Beach area as he was a retired Navy Senior Chief, serving 23 years… Visit the following link to the website so you can see my very handsome husband who is missed tremendously. sdecoste.org.
Sheri S., In Honor of Father: Bill S.
I vividly remember the day my father was diagnosed with this horrible disease. I was 8 months pregnant with my 2nd child. The doctor told him he should start making arrangements because, he would not be alive in a year. It was almost a year before we even heard of someone who had survived for more than 3 years. That was 21 years ago this coming April (2018).
Today (February ,2018), my father placed 3rd in the Masters division at the Southern Erg Sprints indoor rowing championships. He was coxed by my son, who was born 4 ½ years after my dad’s diagnosis. For all of you out there who are feeling defeated by this disease, there is hope. People don’t just survive this disease they can thrive after it.
Meredith H., In Loving Memory of Stan H.
My name is Meredith and I’m here to share not my story, but my father’s. Due to his diagnosis of esophageal cancer, he is not able to share it for himself. My father was diagnosed with stage 3 esophageal cancer in 2011 at the age of 49. Because of his history of GERD and also lack of health care testing available, we did not discover his cancer until it was already spread to his lymph nodes. At this time I was only 17. He underwent surgery to remove the cancerous section of his esophagus and to remove his lymph nodes in December 2011. The surgery was a great success and with chemo and radiation, he was on the track to being cancer free. But he began to act different.
His balance was off, he was making simple mistakes such as forgetting my name, and he didn’t seem like himself. After multiple seizures we discovered a massive brain tumor on the left side of his brain. On April 11th 2014, my 18th birthday, my father had brain surgery to remove the mass. Again, it was successful and at this point him and my mother moved to Houston to get treatment from MD Anderson cancer research hospital. There they did clinical trials and hoped to stop the spread of his cancer. But in November 2014 we received the news that the cancer had spread to his brain, bones, liver, and lungs. At that point he went on hospice and April 12th, 2015, the day after my 19th birthday, my father went home to heaven.
Esophageal cancer does not have nearly enough research, funding, or available information. If my father had been more aware of the cancer and the necessary testing, he could have been tested sooner and would probably still be with me today. Growing up and watching my father suffer through this cancer has completely changed my life. I am now a graduated nurse who works on an oncology floor. My goal is to spread awareness of all cancers and to teach the importance of early detection. I want to make esophageal scopes a mandatory test for all adults over the age of 50. This can provide early detection and save so many people. I miss my father more and more each day, but I’m hoping that by using his story, I am able to help save more lives and to spread awareness about esophageal cancer.
Susan B., In Loving Memory: Elliot
In 2009, my husband Elliot was the picture of health at 60 years young: active, energetic, and vibrant. Elliot was a wonderful husband, dedicated father, and a dentist who loved his work and his patients. He was an avid golfer, fisherman, and woodworker. He played poker with the guys and was a passionate and enthusiastic sports fan of his favorite teams.
Elliot was so full of life and seemingly healthy that when he was diagnosed with Stage 3 esophageal cancer, we were both shocked and devastated. Like many silent acid reflux sufferers, we missed the signs. For years, Elliot would wake up at night, aspirating, choking on stomach acid. We attributed it to a poor diet, not to a serious underlying condition. Elliot didn’t seek medical help until he started having trouble swallowing and felt a lump in his throat that wouldn’t go away, a common silent acid reflux symptom. But then, it was too late.
Elliot fought hard for four years but lost his battle to cancer in 2013. Family and friends miss him every day.
In caring for Elliot, I learned all I could about esophageal cancer, silent acid reflux, and GERD. I attended the Institute for Integrative Nutrition to learn more about how diet and nutrition can both contribute to and heal acid reflux.
In honor of Elliot’s life, I have developed the Healing Acid Reflux online program. It’s my dream to help heal thousands of acid reflux and silent acid reflux sufferers, so they and their loved ones can enjoy long, healthy, happy lives. Please visit my site to learn more about Healing Acid Reflux Naturally.
*Please note: The views and opinions of the author expressed herein do not necessarily reflect those of the The Salgi Esophageal Cancer Research Foundation, nor is the information provided indicated to replace professional medical care. Speak with your doctor before making any changes to your health.
John H., Survivor
Five years ago today I was told that I have esophageal cancer. After telling my wife we both sat down at a computer and started researching. What we found was a dismal assortment of treatment options and not much chance of beating this terrible cancer. The diagnosis was terrifying given my odds of surviving 5 years at 17%(stage 2b). Well, five years later here I am, still alive and kicking.
Now the rest of the story. At the time of my surgery I weighed 350 pounds. I now weigh 160 pounds. Over the last 5 years I have averaged a weight loss of .7 pounds per week. Until this past week I had become convinced that whatever was still causing the weight loss was probably going to continue until it killed me. As it turned out the continuing weight loss was due to a hernia in my chest wall. I was having intestines slip thru the hole in my chest and over time parts of the intestine started to die. This was causing pain whenever I would eat or drink anything. Given the pain whenever I ate or drank anything I was unable to intake enough calories day to day to survive. Earlier this week the intestines got trapped outside the chest wall and wouldn’t retract. Having the intestine trapped resulted in terrible pain and emergency surgery to fix the hernia. Now 4 days out of surgery I’m able to eat and drink without pain and for the first time in years I’m able to consume enough calories on a daily basis so that I don’t lose weight but will actually maybe gain a pound or so.
Five years ago I didn’t have much hope of surviving this terrible cancer. But I have survived and will continue to fight to make it another 5 years. So, if you’re just recently diagnosed or have been fighting the good fight for some time now, don’t lose hope and always keep fighting. You CAN survive so keep fighting!
Colleen C., Diagnosed at age 29
My name is Colleen and I am currently 31 years old. In March of 2016 at the ripe age of 29, I went to see a GI doctor for chronic heartburn but now I was experiencing intense stomach aches. My doctor essentially thought it was ulcers and wanted me to have an endoscopy done. Low and behold my doctor found a tumor where my stomach and esophagus intersect. The next day I was diagnosed with stage 2 esophageal cancer and my honeymoon was abruptly put on hold. I was a newlywed and scared out of my mind to be diagnosed with a “rare” cancer. I was also the youngest patient my hospital had ever seen with this type of cancer. Because they had the tumor “exactly where they wanted it” without spreading the completed esophagectomy surgery 2 weeks later. It was then followed by fertility treatments, chemotherapy, and radiation. I spent my 30th birthday recovering in the CVTU learning how to regain my new “normal” life. Learning how to re-eat was absolutely quite the struggle; in fact i’m still learning my limits. I work out more, watch what I eat, and try to not let anything get in the way of my sense of humor. If I didn’t make fun of myself and what I was going through I would have never made it out of this horror story. Just because I’m now in remission doesn’t mean I don’t live with the fear everyday that cancer can return. I try to keep my mind busy and my anxiety at bay. I’m loving life and doing my best to advocate early detection for symptoms such as acid reflux and heartburn. Thank you for being an outlet for me to turn to!
Kaitlynn G. In Loving Memory: Timothy P.
April 8th was my birthday all I remember was my father sitting at the table with his head down and not eating. Something was wrong but the doctors kept sending him home. He was losing weight rapidly cause he couldn’t swallow. The doctors said he was anorexic but he so desperately wanted to eat. He loved to cook but he couldn’t enjoy any of it himself. I convinced my Dad to let my friend who is a nurse come to check on him.
When she came down from his room she looked concerned and said if we are willing then we should call to have an ambulance come for him. We decided to wait since he had an appointment the next day. We had to lift him into the car. He and my mom came out of the doctors office and said nothing. We got home and he went to bed. My mom said he had esophageal cancer.
At that point it was near the last week in April. The next day my mom called for an ambulance because he no longer could sit up without help and she couldn’t lift him. They brought him to the U of A hospital in Edmonton. They were optimistic that they could remove the cancer but wanted to do another scan first. The scan came back and the cancer had spread through out his body and there was nothing they could do. So arrangements were made to bring him home.
He was flown back to our local hospital which made him so happy since he had flown with the snowbirds in his military career. He said it was his final flight. He was placed in a beautiful room on the palliative care floor. I got to spend precious time with him asking all the questions I had never asked before. My husband I were the last ones to speak with him. I was the last to hear and say I love you with him. He was home for 3 days and on May 14th, surrounded by his family, me singing to him, and the sun shinning through his windows, he slipped into eternity. My son was born less than a year later and he has my father’s eyes.
Sonja N. In Loving Memory: Scott N.
My husband was diagnosed in 2013 with esophageal cancer it metastasized to his liver he lived 3 years after diagnosed I lost the love of my life November 29, 2016 he was only 54 years young.
Margie N., Livingston, Montana, 56 years old
Breast (17 years ago) and esophageal (9 years ago) cancer survivor…. living the good life!
Yasmine S., Diagnosed at age 29
My name is Yasmine, 31 years old from southern California. I was diagnosed at the age of 29, [with] 3rd stage [esophageal cancer]. [I had] 25 rounds of radiation, 7 rounds of chemo.
Underwent 3 major surgeries, removed my esophagus & a piece of my colon is in its place as well as part of my stomach. I had major complications and died twice, they brought me back to life. I’m married with two little girls!
In Loving Memory of Rosie I., Diagnosed in December 2014
Throughout my life, I never had any medical issues. Always healthy, never suffered from any of the symptoms or conditions commonly associated with esophageal cancer.
I started feeling like food was getting “stuck” in my esophagus, before it could get to my stomach, near the end of August, 2014. At first, I attributed it to heart burn or acid reflux, but over a few months, the stuck feeling got worse, and I started realizing that it wasn’t acid reflux coming up, it was a pain that happened only when I swallowed food.
I was engaged to my Fiancé, Mark on Nov.29, 2014 and 10 days later, after not being able to take the pain that eating was causing me, was diagnosed with stage 2 Adinocarcinoma.
My case was taken on by Princess Margaret Hospital in Toronto where I received a protocol treatment regiment of Taxol-Carbo chemotherapy every week for 5 weeks, combined with radiation every day, Monday – Friday for 23 sessions.
I completed treatment last week, had my CT Scan yesterday and will get my results on Feb.25th. If all worked out and the tumor shrunk, I will undergo surgery to remove the tumor and surrounding lymph nodes at the beginning of April, 2015.
My blog centres around dealing with the emotions and staying positive during this process.
To follow Rosie’s inspirational blog, click here.
Rosie Ienco-Colella passed away peacefully on August 5, 2016.
Rachel S. In Loving Memory: John Sitarz
In August of 2010, shortly after my graduation with my Master degree, my mom came to visit, and said “sit down, I need to tell you something.” Instantly, my knees got weak, and my stomach was in my throat. She put her arm around me and said “Dad was diagnosed with Stage 4 esophageal cancer a few months ago. We didn’t want to tell you until after you graduated, but he will be starting chemo next week”. I ran to the bathroom and was sick to my stomach and immediately drove an hour north, to my parents house, to be with my mom and dad. My dad just couldn’t bare to tell me himself, which is why he sent my mom. When we got there, my dad hugged me and said, “I need you to be strong for me. I need you to be strong for mom. I need you to be positive. We will fight this. We will beat this.”
We had no idea what to expect with chemo. Almost every weekend, for the next year, I made the hour trip up north to be with my dad. We had no idea what to expect. The chemo was hard on him. Made him violently ill. Took all of his hair. But through it all, he maintained his smile. He maintained his laughter. He maintained his spirit. He worked every day, and never once used it as an excuse to not work hard.
On his 59th Birthday, I went with him to get his blood work done. We went out for pizza. He just cruised around town. He told me that it was the best birthday he’s had. A few short days later, at his doctors appointment, his doctor said that it looked like the cancer was completely out of his body! We were so happy! We started to plan a cancer free party.
A few week later, my dad woke up dizzy. A few hours later, he couldn’t walk. He called for my mom, unsure what was going on. My mom was unsure if he was having a stroke, or what was going on, so she called 911. He was admitted in the hospital and it was discovered that one of the esophageal cancer cells had gotten through the blood brain barrier, and made its way into his brain. I was in the store, grocery shopping, when I got that call. I fell to my knees in the middle of the store, unable to hold back the tears. My boyfriend had to pick me up and help me to the car.
My dad was never able to leave the hospital. For the next 2.5 months, I went to the hospital as much as I possibly could. When I wasn’t at the hospital with my dad, I was in a daze of worry and anxiety. We did chemo, and radiation. Dad was a fighter and always said he just wanted to beat this monster. I was at work when I got the call from my mom. She said “it’s time to come home, Rachel. Dad doesn’t have many days left”. That night, the doctor stated it was time to put him in hospice. A few days later, we found a room for him in a hospice facility. 1 week after that, he passed away.
Esophageal cancer took away the strongest man I have ever known. Esophageal cancer took away my hero. Esophageal cancer took away the opportunity for me to ever have a father give me away at my wedding, or have my unborn babies get held by their Grandfather. If we had known the signs…if we had known that heartburn causes esophageal cancer, my dad may still be here today.
Vickie B, Diagnosed with esophageal cancer in May 2014
In March 2014 I had a routine scope [endoscopy] due to having Barrett’s Esophagus. The results came back with High Grade dysphagia. Went to UCLA and Dr. Muthusamy performed a scraping of the area. It came back Cancer Stage 1.
Doctor said I could have a 50 % chance of survival or get an esophagectomy for a 90% survival. I am a 56 year old woman with three children and 10 grandchildren. I chose 90% [esophagectomy.]
On May 12th 2014, Dr. Robert Cameron and his team did a full Transhiatal Esophagectomy (THE). While I was in the hospital recovering the pathology results came back and I am currently cancer free.
It has been a year and I am still healing but I am here and could not be more grateful to UCLA and their staff of Dr’s that so graciously brought me back to life. Every single day is a new day. I have a brother who passed away from esophageal cancer and another one who had stomach cancer and part of his intestines removed I am very blessed to be here.
Kathy M, In Loving Memory: Neil Simpson, 1936-2006
I lost my father in 2006 to esophageal cancer. His diagnosis was made probably like most–indirectly. In early 2003, he had a stent put in an artery. Docs assured him he’d feel much more energetic afterwards. But that didn’t happen. Instead, he was even more fatigued than before. Then he started losing weight. After many more tests, doctors found the adenocarcinoma in his esophagus.
Dad went through radiation and chemotherapy in preparation for the horrific esophagectomy surgery. However, he failed the pre-surgical stress test because he had had a heart attack–which he thought was pain from the radiation. So instead of the esophagectomy, he had a triple bypass.
Even though we knew Dad’s illness was terminal, we were glad he dodged the esophagectomy bullet. He, and we, were terrified that he wouldn’t survive that surgery, which is the same surgical procedure used on Humphrey Bogart in 1956. That is an appalling testament to how little financial and scientific attention this disease gets.
Unfortunately the docs also learned that the chemo which had put his cancer in remission also caused his heart attack. So they had to use other medications, which weren’t as effective. Dad toughed it out. He wanted to live as long as possible because he had 15 grandkids to fuss over, enjoy, and love.
With fabulous doctors from University of Chicago and Northwestern University, Dad was able to do pretty much everything he wanted for 3 years. But even they couldn’t stem the tide of the disease which drowned him by inches.
I didn’t know that chronic heartburn was a precursor to EC. My earliest memory of my dad was his eating handfuls of Tums. Now that I know, I caution everyone who complains of heartburn.
Thanks to Salgi Esophageal Cancer Foundation for helping to raise awareness of this lethal disease.
In Loving Memory of Gary Stefano, Diagnosed with Esophageal Cancer in 2014
I was told I had esophageal cancer back in February 2014. After months of not eating and pain, my then girlfriend convinced me to get help. After my scope it was a world wind. I left the doctor’s office with several appointments already made for me. I had no idea what I was in for after the first week of testing, a surgery for a [chemotherapy] port and a feeding tube, I had no clue what either was.
The drama started: six rounds of chemotherapy and 29 visits to radiation treatment, not to mention several emotional breakdowns and a lot of doctor mistakes along the way. A team was put together and my wife and I found the best surgeon. Surgery was on June 12th I was so scared going that morning and almost backed out. I have had several surgeries in the past but this one they said was MAJOR surgery, what did I know.
So off I went to the operating room and after 20 days in the Intensive Care Unit and in extreme pain, I came home. Now four months later some of my doctors can’t believe how well I’m doing. I’m in the 3 percent class of survivors and when I go back for follow ups at the treatment center, where it all began I look around the waiting room and see all the new faces. The same blank scared stare the one I’m sure I had. I don’t know if I should be so proud of myself for what I have done or feel sorry for the new patients. What I do know is I am ALIVE and would like to help new people who are getting ready to go down that same road I was on not all that long ago.
Gary Stefano passed away on Wednesday, May 5, 2015
Sandra: Hywel Eastwood, Husband, Passed away from Esophageal Cancer
[My husband] passed away from esophageal cancer in May 2015 and I miss him dearly and my children do too.
Stacey Wright, whose father passed away from esophageal cancer.
Stacey is the lead event coordinator for the Annual Billy Bob Trot Events which take place in April in St. Louis, Missouri.
April is Esophageal Cancer Awareness Month. Unfortunately, symptoms typically present once the disease has advanced into the final stages.
“My father began to experience symptoms in November 2015; extreme fatigue, a specific feeling of “swallowing rocks” when he would eat, as he described it, along with chest and back pain. We knew that there was something wrong the day he threw his favorite snack away in the trash, a bologna and tomato sandwich.
Whether he was just too afraid of a doctor’s visit, or thought there wasn’t anything terribly wrong, the diagnosis came a little too late. Dad was diagnosed with Stage IV (4) esophageal cancer (adenocarcinoma) on February 17th, 2016 and passed away on April 28th that same year. To say watching his demise was heartbreaking is an understatement. After his passing, I had to find a way to redirect my sadness and anger and at the same time, feel that I was making a difference and doing right by him.
I decided to find a way to help with funding and research. What I learned is that there are not many funding opportunities for esophageal cancer in the St. Louis area. Over the last several years, I have worked with The Salgi Esophageal Cancer Research Foundation, along with St. Louis Parks, to coordinate a “walkathon” to support this cause by raising awareness and education. I am extremely honored to be a part of Salgi as the Missouri Chapter Representative for their foundation.
If this event can provide awareness or result in an early detection for just one person, then this walk will be an absolute success!!!”
Lori Welbourne: Ken White, Father, Diagnosed with Esophageal Cancer
This post was originally published on January 1, 2015 on the website: “On a Brighter Note” by Lori Welbourne. Thank you Ms. Welbourne for allowing us to share this inspiring story.
FATHER’S CHERISHED GIFTS:
Two months ago my dad called and as soon as I heard the sound of his voice I knew something was wrong.
“Hi, Honey,” he said softly. “Do you have a couple of minutes?” Instinctively my eyes welled up with tears and I could feel my throat constrict.
“Yes,” I said, bracing myself for the news he was about to deliver. His voice uncharacteristically cracked with emotion as he told me he had esophageal cancer. Feeling the quick onset of a throbbing headache and a shortness of breath I failed to stop myself from crying out loud.
“I don’t want you to worry,” he said. “I’ll be going for tests and we’ll find out what can be done. I’ll keep you informed. Just think positive thoughts, okay? There’s nothing we can’t handle.”
After our conversation ended and I hung up the phone I no longer tried to control my sorrow and allowed myself to weep with abandon.
Ken White was only 67 years old and had just retired in May. He was full of life and excited about the future. He’d been diagnosed with skin cancer and a slow-growing leukemia not long ago – both of which he’d downplayed as nothing to be concerned about. But this new discovery of a life-threatening tumor in his lower esophagus was alarming.
Brian, an esophageal cancer survivor shares his experiences and journey on his online blog titled “Sliding Thru the Mind of Me”. Unexpected weight loss and other alarming symptoms, including pain in his rib and difficulty swallowing at times led to his diagnosis. Brian notes in his blog that he “was about the same age as [his] father when he was diagnosed with his cancer.” You may visit Brian’s blog by clicking here.