After losing my fiancée, in the beginning stages of this journey, I found out from the autopsy he died of esophageal cancer. We had no idea. I searched for others to relate to and I came across this group. At almost 2 years later I am still fascinated with how involved they are in all of our lives. The admin chats with each of us who are having a hard time just to reassure us that we aren't alone. The personable nature, the education they have provided, is invaluable.
I was choking on food for at least 2 years prior to diagnosis. It NEVER dawned on me a growth was in my esophagus!! 2012 diagnosed, chemo & radiation. They wanted to put in a feeding tube, at the same time they put in the port, I said no. If I needed it later we could do it. 2013 the cancer was back in the same spot. I could not take any more radiation. I was put on an expensive chemo pill. 2014 the cancer was back again, chemo drip and a weekly blood cell shot that made me sick as a dog. 2015 University of Washington said surgery & they wouldn't know if it was possible until they opened me up. 2nd, 3rd, 4th opinions, same as U Of W. 9 hour surgery was a success. A couple years later I found the FB Group that has taught me so much!! Thank you ALL!!!
The ECAA is 100% run by volunteers, and they will help anyone in any way. Being a caregiver for someone with this type of cancer is a full time job. Knowing that there is an organization dedicated to helping patients and caregivers is a huge help!
I'm a 13 year survivor of Esophageal Cancer. I have found ECAware to be a very good resource for information and support during all phases of the disease-From diagnosis to staging to treatment, surgery, and aftercare. I'm happy to recommend them as in important and valuable resource for the EC Community.
ECAA supported me during difficult times when I felt overwhelmed. Without the former President of ECAA, I might have fallen many times throughout my journey.
Received so much positive support from this org and even to this day after almost 10 yrs NED! O I’m giving back by being a volunteer on the Board
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Stage 3 EC - 8 yrs free now- ECAA has helped me during my recovery by reading other posts and knowing I’m not alone in this. So much positivity in the EC community helping raise awareness for this cancer - it’s a very caring organization
My husband was diagnosed with esophageal cancer 17 months ago. Esophageal cancer isn't as widespread as other cancers and the mortality statistics aren't good. Esophageal Cancer Awareness Association gave me so much support. The information that others posted helped make sure we were making the best choices for treatment.
Thank you.
I was diagnosed 3 years ago with stage 3, n1 esophageal cancer. I have had 2 surgeries, 3 rounds of chemo, radiation and a year of immunotherapy. This group, the information shared and the support provided continues to be invaluable to me. It is an amazing community of people who help lift up those in need physically and emotionally. I am so grateful!
I reached out to Christopher Hawley several times before, during, and after my husband’s time on hospice. He was always so compassionate, understanding and relatable to my situation, as well as all who have a connection to this horrible cancer. I truly didn’t want to join any of the esophageal Facebook pages, but would have been so lost without them. Prayers for Christopher, his team, and all those afflicted with esophageal cancer. God bless them all.
First I would like to recognize Christopher who is the administrator for the nonprofit (The Final Journey Esophageal Cancer EC Aware ) Christopher is an outstanding leader for us here. My story I recently lost my husband to Esophagus Cancer and I was desperately looking for help with my loss and maybe to find others who have lost their loved one from this horrific disease. I was on Facebook and I looked up Esophagus cancer and their I found The final journey Esophageal cancer .
This was a God send . I can’t express enough how much this non profit website has helped me through my difficult time with losing my husband . Everyone is like family .the stories we share with one another has truly made a difference In knowing the battle my husband went through was the exact same experience for others. . You gain answers and a lot of knowledge on this cancer . It’s been lifesaving for me ❤️
This is a wonderful group that really supported me through information and advice when I was diagnosed 7 years ago. They are very supportive on Facebook and have lovely administrators. Their website was very helpful, and their videos made me hopeful when diagnosed with this devastating disease.
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I was diagnosed in January of 2016 with esophageal cancer. I went through chemo, radiation, and an esophagectomy. ECAA was there for me through their members and their videos. They gave me hope when I really needed it. I am doing well, back at work, and living my life.
I was diagnosed with Stage 4 esophageal cancer almost 4 years ago. In searching for a place to connect with others I found EC Aware! They are such an amazing organization, they've helped not only me but countless others as they navigate their journey. I thank this organization from the bottom of my heart. A big shout to our administration associated with the organization. Christopher Hawley does an amazing job in keeping the page up and running.
I have been volunteering on the board of ECAA for almost six years now. ECAA provided support to my husband during his treatments and at his bedside when no one else did. Throughout its history, ECAA has impacted thousands of lives. The organization does not pay any salaries or overhead, which means that 100% of tax-deductible contributions go back into our communities. Your contributions support our social networks, NCCN, clinical studies, and the Patient Advocate Foundation (PAF), just to name a few. If you are diagnosed with EC, please make ecaware.org your first stop in fighting this cancer. Love to all.
I am a thoracic surgeon in California and have been a part of ECAA since 2021. They have done a fantastic job putting the PATIENT and their family FIRST and providing great compassionate care and support for everything from medical advice to hospice to social support which many of my patients have enjoyed and really benefited from. I like to volunteer, all NON-paid in any medical especially surgical advice for esophageal and gastroesophageal cancer. The more info you know the better, second opinions are always advised as well. I'll attach some videos of the operation I and many others perform so you can see firsthand. Thank you. https://www.ctsnet.org/article/standardized-operative-approach-total-minimally-invasive-ivor-lewis-esophagectomy-hostile
https://www.ctsnet.org/article/minimally-invasive-esophagectomy-after-pediatric-nissen-fundoplication-esophageal
https://www.youtube.com/watch?v=CRbY7tD_zsc
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My name is Jeffrey Velotta, MD, and I am a thoracic surgeon at Northern CA Kaiser Permanente and have a dual appointment at UCSF Dept of Surgery as well and one of my passions is esophageal cancer awareness and treatment. I have come across ECAA by way of Twitter and Instagram and have read some great stories from patients. This is very inspiring and motivating as a surgeon. I believe that we should be treating patients with this cancer very aggressively with combined multimodality treatment which obviously often includes surgery. The great innovative thing now is that we can do and have perfected the minimally invasive esophagectomy (MIE) completely VATS and laparoscopically with great results even in the elderly and comorbid patients and you don't need a feeding tube. I just want to offer hope to all the patients that think there is nothing left for them to do or that they are too sick or too old or too advanced disease for surgery or that SURGERY is too dangerous and too many complications. I believe that was an older more outdated way of thinking about this cancer and subsequent operation. With newer techniques and more importantly data and publications to back it up, I believe we should be offering more operations to patients and show that they can still have a decent good quality of life. Cheers to this great forum, and keep on trucking b/c we will for sure as a thoracic oncology group to fight this disease. And now with immunotherapy after surgery, it is even better for SURVIVAL with more things coming down the pipeline, so hang in there!! Thank you
ECAware is providing insights and awareness about a disease has hit close to home. Thank you ECAware for your continued efforts to make more people aware of the preventative actions that we can take to decrease the risk of this awful disease.
When I was diagnosed with stage 4 Esophageal Cancer I was terrified. I looked for a place for information and found our site. It's been invaluable to not only me buy countless others.
The Folks in this Wonderful Non Profit.....We call EC (Esophageal Cancer) THE BEAST... It is a cancer that so often RE-OCCURS... And it PACKS a DOUBLE WHAMMY...because most of the time YOU CANNOT EAT..a tumor blocks your esophagus or the opening to your stomach AND then the Chemo treatments use the WORST DRUGS in the regimen for cancer.. Some Chemo treatments last 50 hours. I found this EC Awareness Assoc.. after being diagnosed as a Stage 4, undergoing chemo/surgery all while losing 100 pounds...I was BEAT DOWN! When I discovered this HOPEFUL, loving Place... The Admins and People were soooo KIND and friendly. It was like the sun rising after a dark & terribly long night. They had stories, experiences and knowledge to share and do so WILLINGLY. They encourage you to HOPE...HOPE TO LIVE! They also provide a large amount of resources for help & knowledge of this Deadly disease. I give this Non-Profit my highest Accolades and Referrals.
This summer, my dad died only four months after being diagnosed with esophageal cancer. That's not to say he didn't experience symptoms before then; we spent years begging for someone to diagnose him. By the time they found his "textbook case" of esophageal cancer, it was already in his liver and brain.
After, I found out that EC is extremely common and easily detectable. If found early, it can be treated. But none of my dad's doctors knew what to look for. We didn't know either. If we had known the symptoms and risk factors for EC, there's a good chance my daddy would still be here
That is why organizations like EC Aware are so important. The more people that know about this terrible, common, and easily-treated cancer, the fewer stories like mine there will be. They were here for me as a grieving family member, and they are working tirelessly to help more of these stories end happily.
My wife was diagnosed with Esophageal Cancer in 2011. It was a long hard journey for my wife and family. I was the primary caregiver. It is through work of ECAA that helps keep me sane and with hope. The organization is beyond supportive and they truly care and they expect nothing in return. I can’t say enough good about this organization.
My brother in law suffered with Esophageal cancer. It was horrible. My sister found out that not much was known about this disease and there was very little support for those suffering with the disease and for their families. She got very involved with ECAA. NOW, there is a high level of support that provides information and comfort for the patient, the family and friends. If I ever encounter another person with this disease, the first thing I would recommend is that they contact ECAA for help and support.
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I found this group when my dad was diagnosed with EC and it was a great resource during his treatment as well as after he passed. Esophageal Cancer is a devastating disease the work that ECAA does helps everyone including patients, caregivers and survivors.
I was diagnosed with Esophageal Cancer at age 53 in 2011. I underwent chemo radiation and major surgery. My doctor's put me in touch with ECAA who provided me with much needed support from a then Board member who had previously been through this treatment plan. The support was beyond helpful, and he and the organization went out of their way to follow up. ECAA cares about the person whether that be the patient and/or the caregiver. ECAA exemplifies their mission and it is done 100% by volunteers. I later become more involved with ECAA and I'm proud to now be a board member of ECAA.
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ECAA was there to support me through my EC diagnosis, treatment and surgery and thereafter. This organization manned by all volunteers is simply amazing. They truly care about people and work so hard to raise awareness. I was blessed and honored when asked to join the Board. I now see from the Board perspective how much need there is for support and awareness. This disease is devastating, but ECAA provides much needed support and raises much needed awareness to help people and families, This organization goes above and beyond and I’m very proud to be associated with ECAA.
This group has been a lifesaver for me caring for my husband who is in remission with esophageal cancer. I have received incredible emotional support and information that has been invaluable to me. It truly has been a blessing to me in such difficult and challenging time in my life. I highly recommend this resource.
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My husband was diagnosed with EC in July 2019. I was devastated and afraid. . I found this group on Facebook. I feel like I am not alone. I have gained insight and knowledge through this organization. I feel comforted. 24-hours a day I can find answers to my questions. I also have been given hope by their sharing new forms of treatment This organization is an invaluable resource to me. I am so grateful for their being there for me during this difficult time.
Thanks to the Facebook support groups that EC Awareness Association has provided, I was able to help my father before he passed. The groups helped me find ways to handle what was happening to him, gave me support, gave me information that was useful for both me and my mom as caregivers and for him as the patient. And when he went into hospice, the groups were so supportive and helped me prepare and to understand what was happening. Without this group, I'm not sure we would've done as well as we did.
ECAA is a wonderful organization that helps those dealing with this cancer. They are caring and knowledgable.
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Esophageal Cancer Awareness Association helps patients, caregivers, friends and family associated with this disease. This all volunteer organization is comprised of caring people who have been through this journey.
I have battled Esophageal Cancer since my diagnosis in late 2018 and been a member of this organization nearly the whole time thereafter. I was diagnosed stage 3 and am now fighting stage 4. I have directly benefited from the educational opportunities, and support of my fellow patients and broader community. I am in hospice these days, my vision is going, I rely on various mobility aids, I am increasingly tired, and I don't do some things I would out of a sense of pragmatism. Like anyone, I have my good days and bad. I am fortunate to have found this EC family to remind me of my resilience and to give me a mechanism to give and receive support from a community.
This group was more than a lifeline for my sister and family. Her son diagnosed at age 31. While recovering from the shock and trying to assist in the next steps of staging and treatment, the head of this group reached out to return a call and put my nephew in touch with a few other young
Survivors. It was a long year of both treatment and recovery and he is 4 years NED. As a nurse, I signed up to assist others and keep in touch with this group at least weekly. ECAA has been my and other family members choice of Facebook fundraisers since then. Rhonda, Christopher have supported so many (to name a few helpful survivors). Adding patient assistance and directing everyone to this website as a guide during diagnosis and treatment ensures all questions are answered correctly and proper treatment options reviewed. Cannot say enough of this site for an exceedingly rare and many times, rapidly progressing disease. I’m not sure where many would be without this guidance and research and ongoing support. Thank you.
I was diagnosed in Feb, 1974 with inoperable squamous cell esophageal Cancer. We actually had three opinions, all said nothing could be done, to get our affairs in order, I was given two weeks to six months to survive. Dr. Rodney Million, Radiation Oncologist, Univ. FL, Shands Hospital, agreed to treat me with radiation. It was to be the only treatment I received. I was declared NED on my first visit back the following June. The rest of my story is history. I have condensed this story and just want to write about how ECAA has been such a great help to me. I did not discover an on-line site until much later in my journey. It was the old ACOR site, prior to Facebook. I became rather active on the site and eventually attended the first esophageal picnic in Philadelphia, PA. Steve Preston and I are the only remaining patients that were at that picnic. I believe the conception of ECAA was made that day. On Steve's recommendation, I also became a Board member, but only served about a year. It was rewarding to watch as the organization found it's way too becoming the great, strong organization it is today! When I joined Facebook, I found the ECAA site which is now, EC Aware. I have become more active in this group, thanks to Christopher Hawley and serve as a moderator. I have corresponded with patients and caregivers all over the world, (You used to be able to google esophageal cancer and my name and e-mail would appear) all seeking information on how to survive. I can only share my story and give hope to others. My daughter was four when I was diagnosed, she is in the picture with me. I am now six months into my 48th year of survival and hope to surpass 50, who knows, it could be 60.
Great organization helping to raise awareness for esophageal cancer and treatment. They have been an awesome resource to me.
Wonderful, supportive organization that embodies their mission in all they do. My husband was diagnosed with esophageal cancer at 39. We got so much support from ECAA and their Facebook page. We are so thankful for the support they provided at each step.
I found ECAA after my husband passed away at 38 with stage 4 metastatic esophageal cancer. I wish I had found them when he was diagnosed perhaps he may still be here. I know with the support of the group on FB I don’t feel so alone. They are there for you all of the time.
https://greatnonprofits.org/org/esophageal-cancer-awareness-association-inc
This organization has and always will be held close to my heart. They were there when nobody else was. Rhonda the President made a special visit in visiting Carl while he was being infused. She also made it a point to come to visit him when he was critically ill. I do hope to see a treatment while I am on this earth.
Love this support group. Everyone story is different, but we are all here for each and everyone dealing with this devastating cancer! I’ve learned so much about this cancer and have received so much support!!!
I wish i had found this organization before i had my esophagectomy. But i did find it and am glad to say that all of the members one way or another have been a real help to me moving forward with dealing with EC. I was NED for over 3 years and now am stage 4 with Mets to lymph nodes. I am currently undergoing treatment and doing well. It is so go to know that if i am having a bad day there are many of my fellow cancer patients to help me through the day. You can donate to EC and also use Amazon Smile. It helps to help others going through what you are.
EC Aware is so much more. https://www.facebook.com/ECAware
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I found this organization back when my husband was dx in 2013 and they were my lifeline up to his passing in 2016. Since this time ECAA has remained my lifeline. ECAA has many times caught me before falling. Since this time ECAA has gracious enough allowed my to join the board whereas we continue to bring about awareness of this dreaded cancer of all cancers.
ECAA helped my Mom with support when she was diagnosed with Esophageal Cancer. ECAA support helped my Mom through a very difficult time with all the treatments and surgery. I am very thankful to ECAA for the support and kindness they showed my Mom.
Great assistance to those that are newly diagnosed. Support of research and policy changes that are needed
My wife was diagnosed with EC. At that time I came across ECAA looking for information. The support and information ECAA provided me was above and beyond. I would highly recommend this group, they are top-notch and do their mission with all volunteers. ECAA is truly a great organization.
This organization helped me a lot. Immediately after I was diagnosed and treated, I was looking for outlets for volunteering. Over the years I have been able to help in many ways: attending tennis tournament fundraisers, walk-a-thons, 5ks, 10ks, Charity Concerts, sending envelopes, handing out pamphlets, answering phones, emailing caregivers, website editing, social media support... the list goes on! So grateful I can give back as a survivor
ECAA is a wonderful organization that is dedicated to sharing information and building strength through knowledge.
For 18 months I thought this charity - or at least their FB “support” groups - incredible.
But that has changed.
Due to:
- one member pushing unrecognized treatments in which she claimed to have “no stake” (her own FB profile shows she’s a distributor) but no reaction from admins;
- another member posting “special info” about new treatments, for which one must “be nice” and “say please” for a private message, which was supported by the admins;
- the surge is interactions such as “never doubt that God almighty has a plan for you”, and
- the high numbers of supposed Christians who push the idea that it’s somehow a sin to stop treatment.
I’m better off without them.
Christopher M H. 06/13/2020
Mr. Wright each and every concern of yours was addressed . It is a shame you take away from ECAA's accomplishment of helping 1000's over the years. Also ECAA does not discriminate again any Religious sector so again I am sorry that you feel the way do and the separation was of mutual consent. We continue to wish you the best and if you ever need our assistance again in the future please feel free to reach out.
I am a three year post operation warrior with esphogeal cancer and have depended on this page to get information from people in the same boat as i Am in. My wife and i were out to dinner one night before a concert and i didn’t feel well after eating my salad and went to the bathroom and had a violent eruption of vomiting. I cleaned up and convinced my wife to find someone else to go to the concert with. She dropped me off at home and once again had violent vomiting and when she came in to see if i was alright she saw what looked like wet coffee grinds and declared that that was not normal so we went to the ER and three days later i was told that I had Esphogeal Cancer and I was in total shock and denial. My daughter works for a gastroenterologist and his partner did the scope and recognized my name. By the end of the week all of my dr appointments were set up. He had to pull in lots of favors but got it done. Dr. Brenner was a godsend and is in touch with me all the time. My daughter had never worked for a dr before but i guess God placed her inthe place she needed to be to be my spokesman. There were many times insureance company tried to deny certain test and she would fight them and demanded pier to pier consultations to get them approved. She knew the system and was on them like bulldogs attacking for me. I must say at 65 years old the past three years were the hardest i have ever had. It seems like i have had every side effect of every chemo that i have been given. On two occasions i was declared (NED) no evidence of disease and both times within the next few months the disease came back. All i could think was come on bring it on and we would change chemo protocol and start the fight over. About a year ago we found a clinical trial that used a combination of immunotherapy and Chemotherapy. A whole new set of side effects. My last blood test showed my thyroid numbers were elevated and immunotherapy has been put on hold until numbers come down. This is a beast we have to fight everyday. But NEVER GIVE UP!!!
In our area we do not have a nurse navigator. This EC site has served as one for our family. My family and I have been able to learn so much from the wonderful people on this site! Dealing with this cancer has been so difficult. We are so happy to have the mentors and support found here!!❤️
I found this amazing association when my father was diagnosed with esophageal cancer. I was desperate for answers and support. I found so much more, I found a family. People who had never met, but we all had one thing in common. I cannot express how grateful I am for this nonprofit association. Education and awareness not only supports patients, families, caregivers and friends, but it offers support from others that know what you are going through. After my dad passing at 63 years old April 24th 2019, I know how important it is to spread the word of awareness. My heart has been touched by the kindness we offer each other. Getting the word out of this deviating disease, may save lives.
I’m thankful to have found Esophageal Cancer Awareness Association Inc.
I was diagnosed w/EC over 22 yrs ago and one of the founding members of this great organization. Together, we have brought awareness to EC issues...including causes. We also answer [non-medical advice] questions thru a variety of avenues. Some folks contact us just to have somebody to talk to and have dealt w/EC personally. And we do a great job of that as well. 22 yrs ago...resources on EC were almost impossible to find. Today...the ECAA IS THE PLACE TO GO .
This is my go to site for information and support as my husband deals with Stage IV esophageal cancer. I have learned so much from fellow caregivers and have hopefully been able to offer support to other people dealing with this beast.
