Breakthroughs in treatments give patients hope for long-term survival.
Though prognosis is poor, there are long-term mesothelioma survivors.
Patients must maintain checkups and monitoring after finishing treatment.
There are a variety of support resources for mesothelioma survivors.
While there is no cure for malignant mesothelioma, there is hope in the stories of long-term survivors. Survivors can provide advice on living with mesothelioma and recovering from the disease. Many patients have undergone extreme treatments with the support of experienced mesothelioma specialists and their loved ones, allowing them to overcome the deadly disease and live full lives.
Support for Survivors
Facing a mesothelioma diagnosis and going through an array of aggressive treatments can substantially change a patient’s life. From being out of work to emotional strain with family and loved ones to the toll on the body, patients often seek to find a “new normal” after beating their cancer.
Understanding Physical and Mental Side Effects
Despite ridding cancer from the body, patients are still likely to face an array of side effects, both mental and physical. Ultimately, the side effects that one experiences will differ on a case-by-case basis. However, there are some common side effects worth considering.
Potential Post-Treatment Side Effets
- Fatigue and weakness
- Nerve damage (neuropathy)
- Bone and joint problems
- Intestinal problems
- Difficulties with memory or “chemo brain”
- Post-traumatic stress disorder
- Difficulty concentrating
- Stress or anxiety
- Survivor’s guilt
- Feelings of fear
- Feelings of isolation
While the potential side effects may seem overwhelming, there are many coping methods patients should consider including maintaining a healthy diet, staying physically fit, asking for help from others, doing memory activities and brain exercises, and keeping a journal to document their experience. Palliative treatment may also be an option, as well as supports like counseling or occupational therapy to help maintain a high quality of life.
Establishing a Survivorship Care Plan
After an individual has completed treatment for malignant mesothelioma, he or she should develop a survivorship care plan with their medical team. This is a way to fully address further checkups and monitoring, and establish expectations for the future. A survivorship plan may include:
- Collection of medical records and complete patient health history
- Knowledge of potential long-term side effects
- Details regarding their cancer diagnosis and executed treatment plan
- Overall health strategies and goals
- Recommendations and appointment setups for medical followups and ongoing care
- Potential recommended screenings for other types of cancer
- Behaviors to adopt for a healthy lifestyle, including support groups
- Information for family and caregivers for how to better support survivors
- Contact information for doctors and cancer centers used during treatment
Mesothelioma Survivor Stories
Hearing the stories of mesothelioma survivors can help patients find hope and relatability with others that have battled and won their fight against the cancer.
Inspiring Survivor Stories
Heather was diagnosed with malignant pleural mesothelioma in 2006, at only 36 years old after just giving birth to her baby girl, Lily, three and a half months earlier. Originally given just 15 months to live, Heather knew that wasn’t an option. With the support of her husband, Cam, they traveled to Brigham and Women’s Hospital in Boston for a newer, risky mesothelioma treatment option: surgery that would remove her left lung and the cancerous lining of the lung (extrapleural pneumonectomy), and replace her diaphragm and lining of her heart with surgical gore-tex. After surgery, Heather faced chemotherapy and many rounds of radiation that proved extremely difficult on her body, but the risky treatment paid off; Heather has been cancer-free for 11 years. Connect with Heather.
After being diagnosed with stage 4 mesothelioma in 1998, Wendy was given a life expectancy of 12–18 months, if she underwent chemotherapy. Wendy had no symptoms and was shocked at the diagnosis. With the hope and unwavering support offered from her mother, best friend and oncologist, Wendy fought the disease as hard as she could. After three rounds of chemotherapy and her own holistic remedies, Wendy was cancer-free. It wasn’t an easy journey, but with the right support system and medical care team, Wendy was able to channel her strength and become a mesothelioma warrior. Wendy stresses the importance of asbestos awareness: “As far as asbestos is concerned, please educate yourself! This stuff is still around us…Ask and demand the knowledge of whether asbestos is in that facility. Bring awareness to others around you about this topic.”
Mavis was told she had only 3 months to live when she was diagnosed with mesothelioma in 2006. In her home in the UK, the standard treatment for mesothelioma is a chemotherapy drug called Alimta, but after months of this treatment, her tumors started to grow back. Growing weaker from the aggressive cancer, Mavis sought out clinical trials. After joining a few that didn’t work for her case, Mavis joined a trial testing an immunotherapy drug, Keytruda. Mavis experienced remission after a successful round with Keytruda, and continues her battle against mesothelioma with hope, offering inspiration to other mesothelioma warriors.
Evolutionary biologist and paleontologist Stephen Jay Gould was diagnosed with peritoneal mesothelioma in July 1982. Through his interest in research and statistics, he discovered that the median survival for the disease was just 8 months, but, that the odds were in his favor for living beyond the statistic. His discovery led him to pen the important article “The Median Isn’t the Message,” which remains a source of hope for cancer patients today. Gould survived for 20 years after his diagnosis and ultimately died of an unrelated lung cancer in 2002.
Paul Kraus was given just weeks to live after his peritoneal mesothelioma diagnosis in 1997. He had been exposed to asbestos as a young boy in Australia, which has the second-highest mesothelioma death rate in the world. Kraus decided to undergo more unconventional treatment methods, turning to a strict diet and other alternative medicine in an attempt to halt the disease. With success, Kraus is the longest-living mesothelioma survivor today.
David Curtis was being treated surgically for a hernia, when his doctor found a peritoneal mesothelioma tumor. David did not have any symptoms, so his diagnosis came as a surprise and was later linked back to frequent exposure to asbestos as a child. He underwent a drastic surgery, removing his peritoneum, omentum and abdominal organs, along with a heated chemotherapy wash. After a long recovery, David soon went back to work full-time, a peritoneal mesothelioma survivor.
Though now fully banned in the UK, the hazards of asbestos exposure are still emerging in patients diagnosed with mesothelioma years after their exposure, as was the case with Stephen Henley. As a geologist, Henley traveled to a chrysotile asbestos mine and processing plant, where he faced a one-time exposure. After experiencing mild symptoms and seeking a checkup before a large trip, Henley experienced early detection of pleural mesothelioma. With surgery to remove his pleura and radiation therapy, Henley is now a long-term mesothelioma survivor, enjoying his life with his wife and family.
Additional Resources for Mesothelioma Survivors
When planning their journey ahead, survivors should lean on the support options available to them for peace of mind and to get answers to any of their questions. There are many support groups and community resources available to both survivors and patients to help them through their journey, during and after treatment.