When Sallie M. was diagnosed with pleural mesothelioma at the age of 87 in June 2013, her doctors advised against aggressive treatment.
They said the cancer was too progressed for surgery and that Sallie was too advanced in age to withstand the health effects of chemotherapy. They connected her with hospice right away, and she put her affairs in order.
Sallie took the news relatively well. She felt grateful for the good life she has lived, and peacefully accepted the prognosis. She had a talc pleurodesis to stop fluid from building around her lungs, and it offered great relief of her breathing difficulties.
Doctors expected Sallie’s health to quickly decline within months, but she shocked everyone as she continued to feel well. Sallie loved the hospice team, but after 22 months of hospice care it became clear that Sallie was stable. Hospice hit the road, and she’s been doing well while living in an active retirement community in southern California.
Sallie had a scan of her lungs done when she left hospice, just to see how things were looking. Only a few tumors were found around her lung. It seemed Sallie had a very slow-growing type of mesothelioma.
Without any anti-cancer treatment, she has outlived the typical one-year prognosis by more than a year.
Mesothelioma didn’t stop Sallie from enjoying her life. She managed the symptoms and took time to travel along the California coastline, staying beachside, appreciating the state’s landscape and pleasant weather.
“Thank you No. 1 for the talc pleurodesis, and No. 2 for not pushing treatment on me. I got to travel as a result,” Sallie says.
What Happens if Mesothelioma Is Left Untreated?
People newly diagnosed with mesothelioma often wonder what would happen if they turn down anti-cancer treatment.
What could happen varies depending upon the stage of the cancer and how quickly it grows. A fortunate few, like Sallie, end up with slow-growing cancer, but most cases of mesothelioma grow quickly. It’s also completely normal for a slow-growing cancer to suddenly grow and spread quickly.
Certain factors help people live longer with mesothelioma such as female gender, epithelial cell type, younger age and good overall health. Regardless of prognostic factors, survival is affected for most people who turn down treatment.
Survival is impacted
People diagnosed with the earliest stage of mesothelioma, known as stage Ia, live an average of two years without treatment.
Comparatively, patients who have aggressive surgery for stage I or II mesothelioma often live longer than three years.
Survival among people diagnosed in stage III or IV who forgo treatment can vary greatly depending upon several prognostic factors, including a person’s overall health, age, gender, tumor cell type and stage at diagnosis.
Most mesothelioma studies focus on how treatments can improve survival, so there is little research regarding survival in untreated patients.
However, an MD Anderson study did report survival for untreated cases in 2011. The study reviewed survival in 238 cases of mesothelioma diagnosed between 1977 and 2009. The average survival for untreated cases was 6.4 months. Treated cases lived an average of 11.3 months.
Survival rates are slowly improving with current treatment methods. A 2015 study of 380 mesothelioma cases diagnosed and treated between 1992 and 2012 reported median survival of 18 months for pleural mesothelioma and 75 months for peritoneal mesothelioma.
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Growing tumors affect symptoms
Without treatment, pleural mesothelioma tumors may quickly spread from their origin in the lining of the lungs to the rest of the chest cavity.
Physiological changes caused by growing tumors will cause symptoms that affect how patients feel. As tumors grow and spread, symptoms like chest pain, shortness of breath and coughing often worsen.
Peritoneal mesothelioma also progresses quickly without treatment, and symptoms like abdominal pain and swelling and digestive dysfunction usually worsen.
As both types of mesothelioma progress, other symptoms may develop such as weight loss, fever, night sweats, fatigue, difficulty swallowing, hoarseness and irregular heartbeat. The cancer can also cause high platelet count, high calcium and low sodium levels.
Palliative Care Improves Quality of Life
Managing symptoms to keep patients comfortable, known as palliative care, becomes the No. 1 priority when a patient turns down anti-cancer treatments.
Beginning pain management and other palliative care therapies as soon as possible can help patients maintain their quality of life.
Some people are reluctant to take pain medicine because they have fears about potential side effects and becoming addicted. Palliative care specialists have extensive experience helping people manage pain with medication and know side effects can be controlled.
Addiction is rare. It’s more important to keep pain to a minimum so patients can enjoy a higher quality of life.
Opiate-based pain medicine like morphine and tramadol are effective at controlling cancer-related pain. Certain antidepressants help to reduce pain, while steroids can reduce pain caused by inflammation.
Over-the-counter pain medicine, including NSAIDs like ibuprofen and Aleve, are helpful for mild to moderate pain. However, NSAIDs can easily damage the stomach’s lining and cause ulcers if taken for too long or in combination with alcohol.
Other palliative care treatments enable patients to live fuller lives. Complementary therapies like occupational therapy help patients engage in activities, while physical therapy helps people feel better in their bodies.
Ask your doctor for a referral to a palliative care specialist if one isn’t available at your treatment center.
As the cancer progresses, the time will come when it’s appropriate to make decisions about end-of-life medical care and legal matters.
It’s important to speak with your doctor about a legal order to allow natural death, also called an advance directive. This order allows you to decide in advance which forms of life support you approve of and how long they can be used. Assigning a power of attorney for health care and financial affairs can ensure your wishes are carried out.
Getting in touch with an estate attorney is wise if you don’t have a will yet. This is especially important for mesothelioma patients who receive compensation through asbestos trust funds or mesothelioma lawsuits.
If you haven’t looked into the legal options available to people with mesothelioma, consider talking to a mesothelioma attorney. If you decide to file a personal injury claim, but your cancer progresses and you pass away before trial or settlement, your family can file a wrongful death lawsuit. Compiling a detailed work history is helpful if your family is considering filing a wrongful death suit after you die.
Some people who refuse cancer treatment may experience backlash from family and doctors. Certain family members may not understand the situation and may have difficulty accepting a patient’s choice to refuse treatment.
Some doctors may push aggressive treatment because they have a goal to provide patients with more time, while others encourage patients to join clinical trials. Despite pressures you may feel from family or physicians, ultimately, you don’t have to receive any treatment you don’t want.
One of the greatest services available to people near the end of life is hospice care. To receive the Medicare Hospice Benefit, a patient must have a prognosis of six months or less, but there isn’t a six-month limit to services. Services will continue as long as necessary when a doctor verifies the patient continues to meet eligibility.
Cases like Sallie’s are atypical when it comes to mesothelioma, but some people can live comfortably for years with mesothelioma without anti-cancer treatment. Palliative therapies like pain management, physical therapy and the talc pleurodesis that Sallie had, keep mesothelioma patients comfortable as they live with the disease.
While it may feel scary to face the unknown after turning down mesothelioma treatment, palliative care can maintain quality of life and resources like hospice care. A good support system also helps people to live well with mesothelioma.