Despite research and treatment options for mesothelioma making advancements over the years, there are still sadly very few long-term survivors of this aggressive cancer.
Despite a poor prognosis, there are still some mesothelioma patients who beat the odds.
Long-term survivors like Wendy Holmes and Heather Von St. James provide hope.
Survivorship care plans are created to help ensure a quality of life after treatment.
Survivors may face ongoing physical and mental side effects even long after treatment.
Despite a grim prognosis, there is still hope. Patients have beaten the odds and hopefully with more time and research, mesothelioma patients will have an increasingly better chance of long-term survival.
Long-Term Mesothelioma Survivors
Wendy was diagnosed with stage 4 mesothelioma in 1998 and originally told she only had 12- 18 months to live if she underwent chemotherapy. 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.
Heather Von St. James
Heather was diagnosed with malignant pleural mesothelioma in 2006. She was only 36 years old and had just had 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 treatment option: surgery that would remove her left lung, the cancerous lining of the lung, and replaced 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.
Mavis was told she had only 3 months to live when she was diagnosed with mesothelioma in 2006. In her home the UK, the standard treatment for mesothelioma is a chemotherapy 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. Since the trial, Mavis has been in remission for nearly a year.
Stephen Jay Gould
Evolutionary biologist and paleontologist Stephen Jay Gould was diagnosed with peritoneal mesothelioma in July 1982. His thirst for research and statistics led him to the discovery that the median survival for the disease was just 8 months. But in his research, Gould realized the odds were in his favor for living beyond just those 8 months and ultimately 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 learning 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 to try to halt the disease. His alternative treatments and positive attitude worked, and Kraus is the longest-living mesothelioma survivor today.
On her 50th birthday, Galy received one of the worst presents possible: the discovery of peritoneal mesothelioma. While teaching her fitness class in Australia, Galy discovered a lump on her abdomen and other unusual signs like bloating that led to her diagnosis. Her family supported her, giving her hope and happiness throughout her difficult cancer journey. After several surgeries and many near-death experiences, Galy beat the disease and went back to planning trips around the world.
Support for Survivors
The cancer journey continues through survivorship, and every one is unique. Though hearing the cancer is gone is a happy time, survivors still face their own struggles as they adjust to the “new normal.” Some survivors have long-term physical side effects from treatment or the cancer itself, while others need to find ways to cope with mental side effects.
It’s important for survivors to know they are never alone and there is help available to get them through whatever hardships they face after cancer.
Survivorship Care Plans
Survivorship care plans are created by a survivor’s medical team to help ensure a quality of life after treatment. In survivorship, monitoring and maintaining health are the top priorities.
- Patient’s health history
- Details of the cancer diagnosis and treatment plan
- Long-term effects of cancer
- Long-term or late term effects of treatment
- Recommendations for medical follow-ups and ongoing care
- Promotional health strategies
A recent study from the American Cancer Society surveyed long-term cancer survivors to find out what kind of information survivors want most to improve these survivorship care plans. The results included:
- What cancer screenings for other cancers to have
- Possible long-term side effects to expect from treatment
- Behaviors to adopt for a healthy lifestyle, including diet and exercise
- Cancer resources and information, including support groups
- Information for family and caregivers to better support survivors
The more information and support survivors have will ultimately lead to a better quality of life through the rest of the journey.
Physical Side Effects
Side effects patients experience can vary widely based on an individual’s cancer case and their course of treatment. Some side effects may occur during treatment and persist afterwards, while others may experience late-term side effects sometime after treatment has finished. Some people may not experience any side effects, but it’s still important to monitor any changes in your body that may be a result of treatment.
- Nerve damage (neuropathy)
- Fatigue and overall feeling weaker
- Bone and joint problems
- Intestinal problems
Some patients may experience additional side effects depending on their treatment. Luckily, there are some ways survivors can help combat these issues. In general, keeping active and physically fit can help overcome and combat some of these debilitating side effects.
Physical therapy may be an option for some survivors experiencing physical side effects. It’s becoming a more standard treatment in after-cancer care, since it has many different branches that can tackle a variety of these issues. Physical therapy may be helpful for those facing nerve damage, and can help improve nerve function or compensate for dysfunction. Therapeutic stretching and strengthening the body will also enable many survivors to better handle any pain experienced.
Researchers have also found aerobic exercise has been particularly helpful for survivors facing fatigue, nerve damage and lymphedema. Strength training in moderation will enable survivors to recondition the body, and in turn feel less weakened or fatigued.
Occupational therapy is also becoming more widely used to help survivors more easily overcome limitations in regular day-to-day activities in normal life and at work. Occupational therapy has different methods to enable survivors to live a quality of life and reach their fullest potential at work. Some takeaways from occupational therapy include preventive tips, strategies to ease tiring activities and conserve energy, and cognitive strategies to improve concentration.
Mental Side Effects
A cancer diagnosis is mentally and emotionally draining, and even in survivorship patients will often face many mental obstacles to overcome. Some of these issues may happen intermittently or can be long-lasting, so it’s important for survivors to seek the help they need to tackle these challenges.
- Difficulties with memory (sometimes called “chemo brain”)
- Difficulty concentrating
- Survivor’s guilt
- Post-traumatic stress
Something as simple as keeping a detailed journal of important information or events can help combat chemo brain or any memory problems. Exercise for the brain, like crossword puzzles, can help the brain better retain information as well. While easing back into normal life, establishing a daily routine with repeated motions can help bring the brain out of a fog.
Some strategic coping methods can also help. For example, crisis intervention focuses on problem solving and various coping skills. Cognitive behavioral therapy (CBT) has also helped many survivors manage their stress. CBT focuses on identifying triggers and learning how to manage them and replace the stressful thoughts with more positive and balanced thinking.
Having a good support system can be the best way to overcome these mental and emotional side effects. Joining a support group can help survivors connect with others facing similar problems and learn their methods of coping. For others, it may be more beneficial to find a licensed therapist or counselor to provide emotional support and coping mechanisms for any of the mental barriers faced.
Your cancer journey doesn’t end after treatment, and you should never be afraid to reach out for help for any of your needs. In addition to your medical team assisting with your ongoing care, here are some other organizations that can help you in your survivorship.