When Ellen Patton found out she had pleural mesothelioma at just 41 years old, doctors gave her devastating news: She likely had only 12 to 18 months to live.
More than 25 years later, Ellen has defied every expectation. Now recognized as the longest mesothelioma survivor still living today, she continues to inspire patients and families facing their own diagnosis.
Long before immunotherapy transformed the treatment landscape for mesothelioma, Ellen was already searching for answers beyond the conventional options available to her. That persistence would ultimately become one of the defining chapters of her mesothelioma survivors story.
“It’s important for me to share my story, so I can get the word out that there is hope,” Ellen said. “Although a doctor will say, ‘You’ve got a year, year and a half,’ there is still hope — and I’m an example of that.”
Choosing Life After a Mesothelioma Diagnosis
At the time of her diagnosis, Ellen was finally beginning to feel hopeful about the future again. After spending 15 years in Georgia, she went through a divorce and moved back to Maryland to be near family. It wasn’t exactly where she’d imagined she’d be, but it felt like a fresh start.
Like many mesothelioma patients, Ellen initially experienced breathing problems and other health issues that didn’t immediately point to cancer. So when the diagnosis was mesothelioma, it caught her completely off guard.
“My first question to the doctor was, ‘How do you spell that?'” she said. “I didn’t know anything about mesothelioma.”
Doctors at Johns Hopkins hoped surgery would remove the cancer. But once they opened her chest, they discovered the disease had already spread extensively. With surgery no longer an option, Ellen was told her life expectancy was only about a year to a year and a half.
“I was scared at first,” she said. “Once I realized I had a choice to live or to get ready to die, I decided to live.“
Instead of putting her future on hold, Ellen focused on living the life she still had. “I acted as though I was going to be here for a while,” she said. “And that made a big difference for me.”
Get our Free Survivors Guide to read more inspiring mesothelioma survivor stories and learn how others have navigated treatment and survivorship.
Searching for Answers Across the Country
Ellen believed there had to be something more she could do. She and her family began looking up mesothelioma specialists, seeking opinions from leading doctors in Illinois, Massachusetts, and Maryland.
“I decided I was going to go to different specialists around the country,” she said. “I had a lot of friends and family who did a lot of research also.”
No matter where she went, the message was largely the same: There were few treatment options available, and none of the specialists could offer the kind of hope she was searching for. Through it all, Ellen leaned on the people closest to her.
“I’ve got three sisters. All my sisters went to all the appointments with me,” she said. “I had such a supportive family.”
Ellen’s support system gave her the determination to keep searching for answers when others might have stopped. As it turned out, the breakthrough she was looking for was waiting in an unexpected place.
Becoming an Early Adopter of Immunotherapy for Mesothelioma
A friend told Ellen about a clinic in the Bahamas that was offering an immune-based therapy years before immunotherapy became widely available in the United States.
The decision came with significant challenges. The treatment wasn’t covered by insurance, required international travel, and hadn’t yet become a standard approach for mesothelioma. Even so, Ellen felt it was worth pursuing.
For nearly 8 years, she flew to the Bahamas twice a year, staying for about 2 weeks at a time. Clinicians drew blood samples each morning and used them to prepare injections that she received later in the day. Eventually, she was administering as many as 12 injections a day herself.
“At first, it was very frightening,” she said. “After a while, like anything, you get used to it, especially knowing that there’s a good reason for it.“
The treatment came with a steep financial cost, but Ellen believes it played an important role in her survival. She also met other mesothelioma patients at the clinic and saw firsthand that every journey was different.
“Not everybody has made it,” she said. “I’m probably one of the luckiest ones at this point. But it definitely was worth every second and every penny that I had.”
Making the Most of the Time She Was Given
The years that followed were filled with experiences Ellen once worried she might never have. She bought a home, spent more time with family, and traveled extensively, visiting Ireland, England, Europe, Bermuda, and the Bahamas. She also toured the Vatican and took an Alaskan cruise.
“I had a lot of living that I still needed to do,” she said. “I did so much that meant so much to me.”
Doctors had given her a terminal prognosis, but Ellen wasn’t willing to stop making plans for the future. Travel had always been important to her. Having lived overseas for several years as a child, she said, “Traveling is really in my blood.” Visiting places she’d always wanted to see was one way to continue building the life she envisioned for herself.
Ellen faced fears, setbacks, and uncertainty along the way, but she tried not to let those moments define her life.
“You can’t be ‘poor pitiful me’ all the time,” she said. “Sometimes you can — trust me, sometimes I do — but that’s not going to get me much further in life.”
Legal Compensation Made Treatment Possible
As Ellen searched for answers after her diagnosis, she also needed help understanding her legal options. While undergoing treatment in the Bahamas, another patient told her about Simmons Hanly Conroy, a leading mesothelioma law firm. She contacted them as soon as she got back home.
Unlike other attorneys she had spoken with, Ellen immediately felt a personal connection with the firm.
“[Firm founder] John Simmons himself flew to Baltimore on a snowy day and came to visit with me at the kitchen table,” Ellen recalled. “He was so impressive that he sold me right there.”
Ellen said she knew from that first meeting that she had found the right legal team. “He was in it for personal reasons, and I knew that that was the law firm I wanted to be with,” she said.
“I’ve enjoyed every moment working with Simmons Hanly Conroy,” Ellen said. “The people there are the salt of the earth.”
Like Ellen, you may have legal options that can help cover treatment costs and provide financial security for your family. Get a Free Mesothelioma Case Review to learn more.
Get a Free Mesothelioma Case Review
Investigating Her Asbestos Exposure History
The firm’s investigation into Ellen’s asbestos exposure history also gave her a renewed sense of purpose. Working alongside investigators, she helped piece together the many ways she may have encountered asbestos throughout her life.
“I wanted more answers instead of just saying, ‘I’m going to settle for this and go on,'” Ellen said. “It gave me a purpose.”
Just as importantly, the financial compensation she received helped pay for experimental immunotherapy treatments that her insurance wouldn’t cover. It also gave her the freedom to stop working and buy a home.
Looking back, Ellen says the support she received from Simmons Hanly Conroy made an enormous difference in her journey.
“Whether I have a year and a half or 50 years, I want to be only around good people,” she said. “And I just feel like they’re good people.”
Turning Survival Into Advocacy
As Ellen’s years of survivorship grew, she felt called to help others. She became deeply involved in advocacy efforts through the Asbestos Disease Awareness Organization (ADAO), traveling to Washington, D.C., to attend congressional hearings and speak out about the dangers of asbestos exposure.
Whether speaking with lawmakers, attending public meetings, or sharing her story, Ellen wanted others to understand that mesothelioma affects real people and families.
“I wanted to be an actual patient at these hearings and put a face to mesothelioma,” Ellen said. “It was good for my soul.”
Ellen is still committed to educating others about the dangers of asbestos and correcting common misconceptions about its continued use.
“Asbestos is out there,” Ellen warned. “People think that it’s banned and nobody’s using it anymore, which isn’t true.”
Finding Love and Joy Again
One of the things Ellen struggled with most was wondering how her diagnosis might affect the life she thought she’d have.
“I expected at this point in my life that I’d be remarried, probably have kids, probably be a grandmother even,” she said. Ellen worried that no one would want to begin a relationship with someone living with a terminal illness.
“Right after being diagnosed, I thought, ‘Well, that’s gone. Who’s going to want to be involved with someone that’s got a death notice?'” Her sisters would tease her that she wasn’t going to find somebody in her living room.”
But life had other plans. Years later, family members invited an old friend, who Ellen hadn’t seen in more than 20 years, to visit while they were in town.
“He came over to see them, and it was just sparks everywhere,” Ellen said with a laugh. “So yes, I did find somebody in my living room.”
Ellen continues to enjoy time with family, pursue creative hobbies like painting and soap making, care for her mother, and spend time with the people she loves. “I just love living,” Ellen said.
Living With Mesothelioma Over 25 Years Later
Ellen has become one of the longest-living pleural mesothelioma survivors. This cancer has an average life expectancy of 4-12 months, but she’s still here over 25 years later.
Mesothelioma remains part of her everyday life. She still undergoes regular imaging scans and follow-up appointments. She uses oxygen and faces physical limitations that serve as constant reminders of her disease.
“Mesothelioma has affected me on a daily basis,” Ellen said. “But I’m just thankful that I was able to be here for all the new babies and weddings and so on.”
Today, Ellen spends much of her time caring for her 93-year-old mother and welcoming visits from family members who continue to be her greatest source of strength.
“I couldn’t do that without the support of God and them,” she said.
“Don’t Let Anyone Take Your Hope”
Having lived with pleural mesothelioma for decades, Ellen understands the fear that comes with a diagnosis. Her advice to newly diagnosed patients is simple: Never surrender hope.
“Don’t let anyone take your hope and your faith,” she said. “You always have hope.”
Ellen knows that not every patient will experience the same outcome she has. But she believes her story demonstrates that a prognosis isn’t a guarantee.
“The doctors aren’t God,” she said. “Seek out the right doctors, seek out the right people, and don’t give up hope.”
A quarter century after being told she had little time left, Ellen continues to inspire others simply by living the life she fought so hard to keep.
“I personally would rather live shorter, happy days than long, miserable days,” Ellen said. “Positive thinking is important.”
Mesothelioma Hope: Here for Every Step of Your Journey
More than 25 years after her diagnosis, Ellen continues to show what’s possible when patients have access to information, support, and hope.
At Mesothelioma Hope, we connect patients and families with:
- Leading mesothelioma specialists
- Treatment information and resources
- Legal guidance and compensation resources
- Free educational materials, including our Survivors Guide
If you or someone you love has been diagnosed with mesothelioma, call (866) 608-8933 or fill out our contact form to speak with a Patient Advocate.
