Note: This blog was originally published on September 3, 2020 and was updated on January 23, 2023 with more information regarding mesothelioma quality of life.
Mesothelioma is an aggressive and rare type of cancer caused by exposure to asbestos. Due to the rarity of mesothelioma, it can be challenging to diagnose and treat, which can often lead to a poor prognosis or poor quality of life.
A negative mesothelioma prognosis can seem devastating, but there are ways to combat this type of cancer and the effects it can have on the patient’s life. The medical field is constantly evolving by developing new diagnostic tools and treatment methods. Advancements toward diagnosis can improve the accuracy of mesothelioma diagnoses and effectiveness of treatment.
There have been significant improvements in mesothelioma diagnosis and treatment, which has led to the prioritization of patient quality of life during treatment.
Mesothelioma patients often experience quality of life issues due to their diagnosis:
- Shortness of breath
- Difficulty breathing and swallowing
- Severe chest or stomach pain
- Anxiety and depression
- Post-traumatic stress disorder (PTSD)
- Feeling of injustice from their exposure to asbestos
There’s a feeling that the patient’s life is “out of their control,” which is a very common and valid feeling among mesothelioma patients. Asbestos exposure is the only proven cause of mesothelioma, and there’s no way to proactively know who was exposed or when they were exposed.
Mesothelioma Guide details everything you need to know about maintaining or advancing to a higher quality of life when living with mesothelioma.
Mental Health Struggles Faced by Mesothelioma Patients and Caregivers
Several studies have examined the relationship between having mesothelioma cancer and struggling with mental health conditions such as depression, anxiety and post-traumatic stress disorder (PTSD).
Depression and anxiety are often struggles of cancer patients who feel their life has been upended and forever changed by the disease. Many people with cancer feel they are unable to live a normal life due to the disease, which is one reason why they develop depression.
PTSD is linked to cancers that often return after treatment, which is also called recurrence. Mesothelioma often returns after treatment and scans showing no signs of tumors because microscopic cells hide in cavities and begin growing after therapy ends. People with mesothelioma fear the disease will return, or already experienced it return before, and develop PTSD for annual checkups or routine scans.
A study published in the European Journal of Oncology Nursing reported 96 survey responses from people with mesothelioma and their caregivers. In the study, a clinical level of depression was reported by 29 participants (30.21%), anxiety by 48 participants (50%), and PTSD by 32 patients (33.33%).
Three main themes from interviews with 10 patients and 11 caregivers were a need for better support services and struggles with social connections and communication.
What Defines Quality of Life?
According to the National Cancer Institute, quality of life is defined as the following: “The overall enjoyment of life. Many clinical trials assess the effects of cancer and its treatment on the quality of life. These studies measure aspects of an individual’s well-being and ability to carry out activities of daily living.”
Now, we know what quality of life means: Doctors and researchers initiate studies to evaluate the impact of cancer on a patient’s well-being. But what else do researchers consider when gauging the effects on a patient’s well-being?
Quality of Life and Well-Being
Mesothelioma Guide content writer Devin Golden interviewed Lara Traeger, PhD, a clinical psychologist at Massachusetts General Hospital, to discuss mesothelioma quality of life and well-being.
Dr. Traeger plays a foundational role in The Transitions Program at Massachusetts General Hospital. The Transition Program involves a series of post-treatment counseling sessions to learn about mesothelioma patients and their quality of life. She started this program to keep a line of support and communication with patients who have completed cancer treatment.
In the interview, Dr. Traeger used one word to describe quality of life – well-being. When asked to elaborate on the meaning, Dr. Traeger stated that analysts and researchers focus on several varying factors when inquiring about a patient’s quality of life.
Physical Health
A patient’s physical health can have a direct impact on their quality of life or well-being. Physical health is often characterized as the absence of disease or serious illness, which can be significantly affected by mesothelioma diagnosis. Between symptoms, treatment and side effects, the patient’s physical health can take a hit.
Mental Health
Prioritizing mental health has become more prominent in the last few years, so it makes sense to consider it when evaluating a patient’s quality of life and well-being. Mental health encompasses a patient’s emotional, psychological and social well-being. Any effect on a patient’s mental health will have a similar effect on how the patient thinks, acts and feels.
Life Satisfaction
Although life satisfaction can have a wide ranging meaning for different people, it’s an important aspect in measuring quality of life. Essentially, it is the patient’s view of their own quality of life
From a doctor’s perspective, it is the degree to which the patient is able to complete desired tasks, whether it is walking the dog, climbing a mountain or pouring a glass of water.
There is an endless spectrum to determine one’s quality of life or well-being, but physical health, mental health and life satisfaction are the nuanced aspects that primarily make up this complex topic.
As we know, well-being and quality of life are subjective concepts, which is why Dr. Traeger and her counterparts ask open-ended questions during The Transition Program’s counseling sessions to fully understand how a patient is feeling.
Dr. Traeger’s efforts to prioritize patient support and communication after treatment are vital to the overall well-being of mesothelioma patients. Hopefully, this will push other treatment programs and professionals to also incorporate a quality of life check-in before, during and after mesothelioma treatment.
These challenges, and more, are what Dr. Traeger hopes to address through the counseling.
“You might have the assumption that after treatment is over it’s a celebration and life goes back to the way it was,” Dr. Traeger said. “That may be the case sometimes and to some degree, but there are a lot of unexpected challenges that can happen after treatment is over. Our study is designed to help people navigate those unexpected challenges.”
If you live in the northeast and are looking for treatment, Massachusetts General Hospital is one of many in the region that help people with mesothelioma. Even if you live elsewhere in the country, our team can help you find a cancer center that prioritizes improving your life expectancy and quality of life. Email our patient advocate and registered nurse, Karen Ritter, at karen@mesotheliomaguide.com.
The Art and Science of Mesothelioma Treatment
Mesothelioma treatment can be challenging – both physically and mentally – for a patient and their loved ones. Due to the rarity of this cancer, it can be difficult to find experienced mesothelioma specialists or effective treatment locally. Many of the top mesothelioma doctors work for nationally ranked mesothelioma cancer centers, which may not be close to home.
Aside from difficulty locating a specialist and setting a treatment plan, most mesothelioma treatment options are aggressive. Mesothelioma can spread quickly, and treatment needs to work faster.
The key to the best mesothelioma treatment is prioritizing the patient’s quality of life, while also focusing on effective treatment.
In an interview with Mesothelioma Guide, Dr. Edward Levine, Chief of Surgical Oncology at Wake Forest Baptist Health, says there is a balance between art and science in mesothelioma treatment.
The science side of treatment involves:
- Type of treatment
- Dosage of treatment
- Frequency of treatment
- Survival rates
- Tumor response
The art of treatment focuses on the patient’s quality of life:
- How will the patient respond mentally?
- What are the side effects of treatment, and how will it affect the patient?
- What is the patient’s current health condition, and will it worsen due to treatment?
- Will the treatment work effectively?
As we know, mesothelioma is an aggressive cancer and can spread uncontrollably throughout the body if not treated timely. Most cases of mesothelioma are diagnosed in later stages due to lack of symptoms. It is more to be diagnosed with advanced mesothelioma than early stage mesothelioma.
Advanced mesothelioma typically requires aggressive treatment because the cancer has likely spread to other parts of the body. This is when the value of treatment and quality of life collide.
Finding the Balance Between Aggressive Treatment and Quality of Life
Determining the value of length of life versus quality of life is just one of the many obstacles mesothelioma patients can face. This is not usually a decision a doctor can make; it is up to the patient on how they choose to move forward.
However, mesothelioma specialists, like Dr. Levine, have extensive experience and can help the patient and their loved ones make a clear decision. In his interview with Devin Golden, he notes the learning curve for physicians and hospitals, saying that it can take years to develop the niche for treating a cancer as complex as mesothelioma.
Some patients are determined to beat cancer and live the longest life possible, while some would rather opt out of treatment and live out their last days at peace. Many studies have tried to pinpoint what exactly makes a cancer patient more inclined to try a radical treatment in an attempt to save their life.
One study specifically focused on why patients choose quality of life over length of life with the goal of understanding patient preferences and attitudes toward their cancer treatment and what they are willing to exchange to lengthen their lifespan.
Researchers evaluated thousands of medical articles that discussed topics related to:
- Quality of life
- Cancer
- Length of life
- Health utility, which is a number describing the health status of a patient, ranging from zero (death) to one (full health)
- Decision making, which requires patient participation or treatment choice
The results showed that cancer patients understand the value of both quality of life and length of life and experience complex feelings and emotions when faced with a difficult decision, such as length or quality of life.
A majority of the advanced cancer patients studied chose to prioritize quality of life over length of life. There were some cases where patients agreed to participate in aggressive treatments in order to live for one more day. In other cases, patients would decline any treatment at all. Those patients who declined treatment chose their current quality of life over any negative treatment side effects and a possible extension of their life.
It was also noted that patients made their decisions based on the mesothelioma survival rate. If the patient felt their prognosis would improve, they were more likely to sway in that direction. Regardless of the type of cancer, patients felt that quality of life and length of life were equally important when considering treatment. However, there is evidence to show older patients typically chose quality of life, while younger patients were more inclined to prioritize the length of their life.
The study concluded that the patient’s choice between quality of life or length of life is completely dependent on the individual patient’s decision making skills. When making an important decision such as cancer treatment, there are many elements to consider aside from medical information: age, family dynamic, prognosis, life satisfaction and many more varying factors.
As Dr. Levine said, mesothelioma is a complex cancer that takes years to understand. Patients can be even more complex, and prioritizing quality of life when making a treatment plan is one of the most important aspects of medical care.
Focusing on Quality of Life as a Mesothelioma Patient or Caregiver
Feeling overwhelmed by doctors, hospitals, a mesothelioma diagnosis and an aggressive treatment plan is a common feeling among mesothelioma patients and their loved ones (caregivers). Mesothelioma treatment can cause uncomfortable side effects, which can inherently decrease a patient’s quality of life.
To keep some sort of normalcy, there are many ways to maintain or improve quality of life during and after mesothelioma treatment.
One of the most common ways to maintain quality of life is by practicing pain management and taking pain medication as prescribed. However, pain medication does not always eliminate pain; it typically reduces pain levels to manageable.
Many researchers have conducted studies attempting to understand the burden mesothelioma can be on a patient’s mental and physical well-being.
One study notes the importance of therapeutic patient support to address and lighten the burden of mesothelioma. The study specifically mentions the significant need for therapies that focus on acceptance, hope, patient empowerment and promote patient choice.
As quality of life has become more of a priority for patients, doctors and caregivers, many therapies promoting patient well-being exist.
Alternative Treatment Options for Mesothelioma Patients
There are existing alternative treatment options that can boost quality of life for a mesothelioma patient. Some of the methods are unconventional and may not be practiced by mesothelioma specialists, but there is evidence to support positive patient outcomes.
Alternative medicine is not known to cure mesothelioma or lead to remission, but it is known to be helpful with the anxiety, uncertainty and the many other complex feelings that come with a devastating cancer diagnosis.
Some forms of alternative treatment options are:
- Acupuncture – Inserting tiny needs into the skin at certain points on your body to relieve aches and pains
- Aromatherapy – A relaxation technique using fragrant essential oils to provide a calming sensation and relieve stress
- Cognitive behavioral therapy (CBT) – A type of talk therapy, usually conducted by a therapist, to help the patient respond to adverse feelings in a positive manner
- Exercise – Regular physical activity can strengthen the immune system to better fight off cancer and help the body recover after surgery or treatment
- Hypnotherapy – A therapist helps the patient relax and enter a deep state of concentration while talking the patient through stress and anxiety management
- Massage therapy – A licensed professional kneads the patient’s body to relieve muscle stress and tensions
- Meditation – A state of deep mental concentration, usually focused on deep breathing; this can be done at home or with a professional
- Music therapy – Listening to music, playing instruments and writing lyrics with the intent of taking your mind away from stress and anxiety
- Tai chi – An exercise that combines deep breathing (meditation) and gentle movements (light exercise)
- Yoga – A combination of meditation, exercise and stretching that requires enough strength to sustain your own body weight
- Marijuana – A form of cannabis doctors sometimes recommend to help patients reduce pain, stress and anxiety
Palliative Care for Mesothelioma Patients
Another way to maintain or improve quality of life as a mesothelioma patient is by participating in palliative care, a noninvasive type of medical treatment aimed at improving quality of life.
The most common ways to improve quality of life for mesothelioma patients by reducing pain from symptoms, decreasing mental and physical stress and minimizing the fear of dying. Palliative care also has the potential to extend life expectancy by a few weeks or months.
The treatments used in palliative care to increase quality of life are often:
- Draining fluid from the mesothelium (pleura, peritoneum and pericardium), helping organs to function properly
- Reducing pressure against the chest or stomach
- Supporting the patient in any capacity – emotionally, mentally, physically and socially
- Offering support and guidance to caregivers
Specialists usually recommend a combination of medical, spiritual and psychological aspects to meet treatment goals. Some examples are relaxation practices, lifestyle and diet changes and counseling.
Palliative care can have similarities to certain alternative treatment methods when it comes to incorporating medical, spiritual and psychological aspects. However, the two approaches differ in the fact that palliative care can provide medical treatment, such as:
- Low doses of chemotherapy or radiation
- Noninvasive surgery
- Pain-relief medications
Many patients might associate palliative care with late-stage cancer when aggressive treatment is no longer effective. Scientific research has proven palliative care can help in early stages of mesothelioma as well.
Support Groups for Mesothelioma Patients, Caregivers and Loved Ones
Feeling supported as a patient, caregiver or loved one of a patient is so important. A mesothelioma diagnosis can make one feel alone and isolated, as they may feel their life is out of their control.
There are many support groups available to mesothelioma patients, caregivers and patient loved ones. Joining a support group can have many benefits as they create communities among people going through similar life experiences. It can make people feel less alone and understood.
Support groups can help build confidence in hospitals, doctors and treatment plans. By joining a support group community, you can listen to others share experiences or show your own. Sometimes, you may find others have been treated at the same hospital, by the same doctor or with the same treatment plan.
Mesothelioma is challenging to understand as a patient, caregiver or loved ones. Speaking to others with similar experiences can provide inspiration and hope, making it easier to trust the doctor’s plans.
Finding a community in a support group and sharing difficult emotions and feelings that accompany a mesothelioma diagnosis can help the patient or loved one feel comforted and accepted. Being vulnerable with a group of people can build a strong community and may reduce the stress of the diagnosis. Knowing you have others who can relate to your experience is a comforting feeling.
There are many ways to get connected to a group of similar people. Some hospitals or cancer centers offer in-person support groups, while the majority of support groups can be found online.
One study focuses on patient and caregiver support needs. The results showed that patients and caregivers want to meet other mesothelioma patients and caregivers to share their experiences and feel understood. It can be very difficult to navigate a mesothelioma diagnosis alone, which is why joining a support group can be beneficial.
Improving Quality of Life After Mesothelioma Treatment
Life after mesothelioma treatment can look and feel different, but there are many helpful ways to boost quality of life.
As we know, quality of life is based on many varying factors, such as physical health, mental health and life satisfaction. A slight change in any of these factors can have an impact on the others.
To improve quality of life, a patient should make an effort to enhance their physical health, mental health or life satisfaction. For example, a small change in a patient’s mental health can have a lasting effect on their life satisfaction, whether it’s positive or negative.
There are small ways to steadily improve quality of life after completing mesothelioma treatment
Setting and achieving goals is one way to build up confidence, which in turn could boost the patient’s quality of life. By setting attainable goals and reaching them, the patient can see they are capable of completing significant tasks and might have feelings of accomplishment when reaching certain goals. This can build up the patient’s mental state.
As we know, each of the quality of life factors can have domino effects on each other, so a boost in mental strength can have positive effects on many other factors.
Helping a patient cope with uncertainty after mesothelioma can be extremely helpful when attempting to improve quality of life. Patients can experience loss of certain physical or mental abilities after completing mesothelioma, and it can have significant effects on the patient’s well-being. Implementing coping strategies to help the patient handle losses or uncertainty can substantially improve the patient’s outlook on life.
One of the primary subjects that make up the idea of quality of life is life satisfaction, which can translate in many different ways for many different patients. Every patient has a different standard for life satisfaction, so working with them to understand and achieve their ideals can enhance their quality of life.
These are some small tactics patients and their loved ones can implement to their lives to uplift the patient and prioritize their well-being.
Hospice Care for Mesothelioma Patients
Mesothelioma is an extremely aggressive cancer, often diagnosed in advanced stages, meaning treatment can be ineffective. Sometimes, advanced stage mesothelioma patients are recommended to end treatment and enroll in hospice care.
Hospice care is an end-of-life care for patients with advanced stage illness. It can be a sensitive topic for a mesothelioma patient and their loved ones, but patients and loved ones should find peace in knowing the patient will be comfortable and pain-free in their final months.
Hospice care health professionals understand how challenging it can be for the patient and their loved ones to transition to hospice care, but they work diligently to provide peace and comfort.
There are many comforting aspects of mesothelioma hospice care:
- Nurses working in hospice care are on call 24/7 and will visit the home of the patient to provide care or medical treatment.
- Doctors will monitor and manage the patient’s medication, increasing or decreasing the dosage if necessary.
- Patients, caregivers and loved ones can receive emotional support, counseling and end-of-life advice if desired.
- A nondenominational spiritual care provider can be available to travel to the patient’s home for support.
When a loved one transitions to hospice care, it can take a toll on loved ones and family members. To relieve the stress, hospice care can provide peace of mind and comfort for a spouse, sibling, child or grandchild.
Support options for family members includes:
- Anticipatory loss or bereavement counseling
- Advice for caregivers
- Funeral arrangements
- Naming beneficiaries
Frequently Asked Questions About Living with Mesothelioma
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What's the longest someone has lived with mesothelioma?
The longest reported survival time for a mesothelioma patient is about 20 years. However, this is rare and the average life expectancy for mesothelioma patients is typically 12-21 months after diagnosis. Early detection and treatment can improve a patient's prognosis. -
How does mesothelioma affect your life?
Mesothelioma can have a significant impact on your life, both physically and emotionally. Symptoms can include difficulty breathing, chest pain, weight loss, fatigue, and coughing up blood. Treatment options may include surgery, chemotherapy, immunotherapy and radiation, which can also have side effects. Additionally, mesothelioma can cause emotional distress and financial strain due to medical expenses and lost income. It is important to seek support from loved ones, healthcare professionals, and mesothelioma support groups. -
How long do you live after being diagnosed with mesothelioma?
The life expectancy for mesothelioma patients varies and depends on several factors, including the stage of the cancer, age, overall health, and type of mesothelioma. Unfortunately, mesothelioma is an aggressive cancer, and the prognosis is often poor. However, with early detection and aggressive treatment, some patients have been able to survive for several years after diagnosis. It is essential to discuss your specific case with your doctor to determine the best course of treatment and management plan. -
How fast does mesothelioma progress?
The speed at which mesothelioma progresses can vary depending on factors such as the type of mesothelioma, the stage at which it is diagnosed, and the individual's overall health. However, in general, mesothelioma tends to be a fast-growing cancer with a poor prognosis. Early detection and treatment can improve outcomes, so it is important to seek medical attention if you suspect you have been exposed to asbestos and are experiencing symptoms. -
Can mesothelioma go into remission?
Unfortunately, mesothelioma is a very aggressive and deadly cancer, and it does not typically go into remission. However, there are treatments available that can help manage the symptoms and prolong the patient's life. It is important to work closely with a mesothelioma specialist to determine the best treatment plan for each individual case. -
Is there any hope for mesothelioma?
There is hope for mesothelioma, but the prognosis depends on several factors such as the stage of the cancer, the patient's overall health, and treatment options available. With advances in treatment and clinical trials, some patients have experienced improved survival rates and quality of life. It is important to consult with a specialist in mesothelioma to determine the best course of action for each individual case. -
Does mesothelioma affect the brain?
Mesothelioma typically does not affect the brain directly. However, in rare cases, the cancer can spread to the brain through the bloodstream or lymphatic system, which can cause symptoms such as headaches, seizures, and cognitive impairments. -
Does mesothelioma cause memory loss?
No, mesothelioma does not directly cause memory loss. However, some patients may experience memory problems as a result of chemotherapy or radiation therapy used to treat mesothelioma. In addition, mesothelioma can cause fatigue and other physical symptoms that can affect cognitive function. -
How do you feel with mesothelioma?
Mesothelioma is a serious and painful cancer that affects the lining of the lungs, abdomen or heart. Symptoms may include shortness of breath, chest pain, persistent coughing, abdominal swelling and pain, and fatigue. It is important to seek medical attention if you suspect you may have mesothelioma. -
Is mesothelioma always terminal?
Unfortunately, mesothelioma is usually terminal. However, early detection and treatment can improve the patient's quality of life and potentially extend their survival time. It's important to seek medical attention as soon as possible if you suspect you may have been exposed to asbestos and are experiencing symptoms such as chest pain or difficulty breathing. -
Is mesothelioma curable if detected early enough?
Unfortunately, currently there is no cure for mesothelioma. However, when detected early enough, treatment options such as surgery, chemotherapy, immunotherapy and radiation therapy can improve the patient's quality of life and potentially prolong their survival. Early detection is crucial for the success of these treatments. -
What is the average age of mesothelioma patients?
The average age of mesothelioma patients is around 70 years old. However, it can occur in individuals as young as 20 or as old as 90. -
How do you help someone with mesothelioma?
The primary goal is to provide patients with the most effective treatment options available. This involves a comprehensive approach that addresses not only the physical symptoms of the disease but also the emotional and psychological aspects that can accompany it. Treatment options may include surgery, chemotherapy, immunotherapy, radiation, and other palliative care measures. It is helpful to provide mesothelioma patients with information about the disease and help them make informed decisions about their care. Additionally, providing them access to resources such as support groups, financial assistance programs, and legal representation can be helpful. -
How do you slow down mesothelioma?
There is no known cure for mesothelioma, but treatment options like surgery, chemotherapy, immunotherapy and radiation can help slow down the growth of cancer cells and alleviate symptoms. Early detection and prompt treatment can also improve prognosis and increase chances of survival. It is important to work with a specialist who has experience treating mesothelioma to determine the best course of action for your specific case. -
What is the newest treatment for mesothelioma?
There are several new treatments being researched and developed for mesothelioma, including immunotherapy, targeted therapy, and gene therapy. However, the most effective treatment plan for mesothelioma still involves a combination of surgery, chemotherapy and radiation. It is important to discuss your specific treatment options with your doctor.
Sources & Author
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