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:
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 Nicley
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 1st Annual Billy Bob Trot which will take place on Sunday, April 30, 2017 in St. Louis, Missouri.
April is Esophageal Cancer Awareness Month. Unfortunately, symptoms typically present once the disease has advanced into the final stages. It is estimated that 15,690 deaths from this disease will occur in 2017.
My Dad began to experience issues in November 2015. He described a feeling of “swallowing rocks” when he would eat. He gradually became unable to eat any foods. We knew that there was something wrong the day he threw his most favorite snack away in the trash, a bologna and tomato sandwich.
Whether he was just too scared 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. Dad passed away on April 28th that same year. To say watching his demise was heartbreaking, is an understatement.
Dad was a smoker for approximately 50 years. He had quit six years prior to being ill, but smoking was definitely a contributing factor. In addition, Dad had acid reflux which went untreated. He always preferred a flat surface to sleep and would never prop his head up with any additional pillows. As I mentioned, bologna and tomato sandwiches…it goes without saying, Dad did not have the best diet either.
Smoking, acid reflux and poor diet, all major contributors to esophageal cancer.
I miss my Dad so much. I would give anything to have him here with me today. Mom, Cameron and I have had to learn to adjust, which has been extremely difficult at times. The reality though, is that I can’t have Dad back. I had to find a way to redirect my sadness and anger, and at the same time, to do 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. A few months ago, I finally came across The Salgi Esophageal Cancer Research Foundation in Rhode Island. This foundation is a 501(c)(3) nonprofit charity working to raise awareness, encourage early detection and to fund research of esophageal cancer.
Over the last several months, I have worked with this foundation, along with St. Louis Parks, to coordinate a “walkathon” to support this cause, to raise awareness and to honor the best man I have ever known.
I am extremely excited and hope to see you at the walk in April! If you are unable to attend but would consider making a monetary donation, I would be most appreciative and grateful. If this event can provide awareness or result in an early detection for just one person, then this walk will be an absolute, complete success!!!
I thank you all for your consideration.
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.