Mesothelioma, or malignant mesothelioma, is a rare form of cancer that develops in the mesothelial lining, which covers the outer surface of many of the body’s organs. Mesothelium is a thin tissue that links several of our internal organs. Mesothelioma is defined and diagnosed by the part of the body it is found in. One of the main causes of mesothelioma is known to be exposure to asbestos. There are several types of mesothelioma, with pleural mesothelioma being the most common. Pleural mesothelioma affects the lining of the lungs, known as the pleura. Mesothelioma can also impact the lining of the heart, abdomen, or testicles. When mesothelioma occurs in the abdomen, it is known as peritoneal mesothelioma, while mesothelioma of the heart is known as pericardial mesothelioma. When it affects the testicles, it is known as testicular mesothelioma.(1, 2, 3, 4)
Every year, nearly 3,000 people are diagnosed with mesothelioma in the United States. While the mesothelioma incidence rate in the US had peaked in the late 1980s and in the early 1990s, the rates have since then gone down significantly. Most cases of this type of cancer are diagnosed in people over the age of 75 years and are observed more in men than women.(5, 6)
While it is not possible to cure mesothelioma, there are several treatment options that can help manage the symptoms.
Being handed a diagnosis of mesothelioma has a profound impact on a person’s mental and emotional well-being. This diagnosis comes with its own share of complications, including organ damage, pain, and unhealthy weight loss in most cases. However, the profound impact of being diagnosed with mesothelioma stems far beyond these physical problems. Let us take a closer look at the psychological and emotional impact of a mesothelioma diagnosis on patients and their families.(7)
Understanding the Psychological and Emotional Impact of Mesothelioma Diagnosis
Mesothelioma has a huge effect on patients. It is important to note that the suffering of a patient is not limited to the lining of the lungs, abdominal cavity, heart, or any other part of the body where the cancer cells reside. Mesothelioma takes a huge toll on not only the person who has been diagnosed but also those who care for them, including family and friends. This emotional toll adds even more misery.(8)
Being diagnosed with any type of cancer is a debilitating experience not only physically, but also mentally and emotionally. Knowing that you have mesothelioma can make you and your family members feel overwhelmed. At the same time, it is necessary to realize that such feelings are completely normal. After all, you have just been handed over a piece of life-changing news. It is normal to feel:
Take some time to feel whatever it is that you are feeling and realize that it is normal to have such strong feelings. Do not feel pressurized to react in a way that is expected from you due to societal pressure. This will only prevent you from going through all the stages of grief and emotions after getting your diagnosis.
According to the British Medical Journal (BMJ), up to ten percent of cancer patients go through anxiety while 20 percent slip into depression.(9, 10) After all, contracting such a disease due to exposure to asbestos, combined with employer negligence in many cases, can no doubt be a cause of psychological and emotional issues.
Mental Distress in the First Three Months After a Diagnosis of Mesothelioma
The mental distress experienced by mesothelioma patients is the highest in the first three months following the diagnosis. During this phase, the patient goes through extreme psychological turmoil as the reality and shock of getting a cancer diagnosis slowly sink in. They are more prone to experiencing depression and anxiety along with anger related to the cause of the disease, which is usually through the exposure to asbestos at the workplace combined with the negligence of the employers. The patient is also likely to feel that the disease is completely out of their control and they start fearing that their condition is going to deteriorate rapidly leading to their death.(11)
Alongside this, a patient also has to live with the physical symptoms of mesothelioma. They may also be pressurized to file a lawsuit against their employer or a particular product manufacturer from which the asbestos exposure has happened. All this can be too much to cope with, which is why it is understandable that patients need a lot of emotional support and assistance than what they are receiving at the moment.(12)
Losing one’s sense of independence while having to go through the physical symptoms of mesothelioma is not easy to deal with. For example, breathing difficulties due to pleural mesothelioma of the lungs or constant pain in the abdomen due to peritoneal mesothelioma can prevent patients from going about their day-to-day activities as they used to before getting cancer.(13)
At the same time, s mentioned above, many people feel anger or guilt over the source of their cancer, which is the most common asbestos exposure combined with corporate negligence. Going through and reliving the memories of how they got exposed to asbestos and the hazardous lung inhalation can leave patients feeling worse.(14)
Many people often end up developing additional mental health side effects such as anxiety attacks and depression. Treatment for mesothelioma, such as chemotherapy, can also cause substantial mental side effects. Treatments like surgery can further aggravate these mental and emotional feelings due to the pain and rehabilitation often involved with surgical intervention. The combination of physical discomfort and the recovery period can end up wreaking havoc on a patient’s mental health.(15, 16)
Common Mental Health Conditions to Watch Out For in Patients with Mesothelioma
Family and friends of a mesothelioma patient must watch out for some of the common signs and symptoms of mental health conditions. The most common mental health conditions that have been observed in mesothelioma patients include anxiety, depression, as well as coping issues. In fact, a study carried out by Psycho-Oncology discovered that over 25 percent of cancer patients experience severe symptoms of depression.(17)
Mesothelioma patients may also experience post-traumatic stress disorder (PTSD) due to their diagnosis or during the treatment phase. PTSD is a common mental disorder that causes people who have undergone a traumatic event to experience many triggers like anxiety, depression, and flashbacks related to that event.
Another mental health side effect of chemotherapy used in the treatment of mesothelioma is the ‘chemo brain’, during which a patient can feel overwhelmed with mental fog and fatigue. Here are some of the common signs and symptoms of depression that family and friends of a mesothelioma patient should watch out for, especially in the initial months following the diagnosis of cancer.
- Agitation or restlessness
- Feelings of worthlessness or helplessness
- Feeling guilty about not being able to detect the asbestos exposure
- Loss of interest or happiness in activities that they used to enjoy earlier
- Having frequent thoughts of suicide or death, or making suicide plans, or attempting suicide
- Significant weight gain or weight loss
- Persistent feelings of sadness, or hopelessness
- Feeling ’empty’ most of the time
- Trouble focusing on things or remembering things
- Trouble making decisions
- Trouble sleeping – either sleeping all the time or not being able to sleep at all
Apart from these common signs and symptoms of mental health issues, it is often typical for patients to experience a wide range of emotions after being handed a mesothelioma or any cancer diagnosis. However, there are some signs that family members or friends must watch out for that indicate the patient is going through serious mental health problems. These may include:
- Develops new or unusual symptoms that are a cause of concern.
- Experiencing extreme emotions that interfere with day-to-day activities and often last for days on end.
- Makes plans or have thoughts of suicide or of hurting themselves.
- Experienced trouble breathing.
- Is appears to be confused.
- Is sweating more than normal.
- Is unable to sleep or eat.
- Is feeling very restless.
- Is unable to feel happiness in doing the things they enjoyed in the past.
- Has lost interest in their routine activities for many days.
Being diagnosed with mesothelioma can be frightening, sad, and shocking for not only the patient but the entire family. The added problem of mental distress in mesothelioma patients has been on the rise. In an article published in the Journal of Theoretical Social Psychology, it was expressed that patients with cancers of the lung are more likely to experience high levels of psychological and emotional distress than any other type of cancer. In a study with 49 men participants, all reported dramatically high levels of traumatic stress symptoms after receiving the diagnosis of cancer. This indicates that much more needs to be done in order to help provide proper service to these patients and make them feel more comfortable after getting their diagnosis.(18)
Providing the Proper Emotional and Mental Support
Often times when it comes to palliative and supportive care systems for mesothelioma patients, it appears like the patients’ emotional and mental health needs are not being met or even taken into consideration most of the time.
After getting any severe diagnosis, it is natural for any patient to feel like they are alone in this battle. However, there are many systems that are in place to provide the right kind of support to mesothelioma patients. There are numerous support groups around where existing members welcome new people who are facing similar situations. At the same time, friends and family can also help, though it is often seen that the biggest support comes from meeting a person who knows exactly what you are going through and feeling.(19, 20)
Another excellent option for mesothelioma patients is to seek counseling after their diagnosis. Counseling can be done through one-on-one sessions or with the entire family. Counseling allows the patient to speak up honestly and openly about how they feel about their diagnosis and they are dealing with the situation. Counseling also helps patients learn coping strategies that will help them get through their daily lives.(21)
Many mesothelioma patients also seek cognitive behavioral therapy (CBT) for their mental health issues. In many cases, doctors also recommend dialectical behavior therapy (DBT) to help successfully self-direct mindfulness by practicing breathing exercises. These exercises are especially helpful for those patients who are diagnosed with pleural mesothelioma and have trouble breathing due to the cancer. Discussion therapy, behavior modification, or medications for anxiety or depression can all also be a part of both CBT and DBT therapies. Many times, your doctor will first carry out an assessment to find out which type of therapy will be the most suited for your individual case. In some cases, multiple therapies may also be useful.(22, 23, 24)
In severe cases of mental distress, your doctor may prescribe medications to manage the symptoms. There are many popular antidepressants such as Paxil, Prozac, Zoloft, and Wellbutrin that are often prescribed to cancer patients. Certain medicines may also be prescribed to help reduce the side effects of chemotherapy. For example, asthma medications are sometimes prescribed to patients with pleural mesothelioma who have reduced lung capacity or decreased lung ability after lung surgery or chemotherapy.(25, 26)
It is best to speak honestly with your doctor and to ask for help if you feel you are unable to cope with the stress of receiving a mesothelioma diagnosis.
If you or your loved one has been given a mesothelioma diagnosis, it is important to understand that the coming days, weeks, and even months are not going to be easy. It is natural to feel like your life has come to an end and to slip into depression. One of the first things to do in such cases is to educate yourself about the disease. Remember that knowledge will give you the power to make the right decisions about your treatment and also help you understand your symptoms. Your doctor is the first resource to ask your questions. There is no harm or no embarrassment attached to asking for additional information.
Turn to your family and friends and share your feelings with them. Search for support groups. With the advent of the internet, the world has truly become a very small place and you will be able to find tons of people who are going through the exact same thing as you. Remember that you are not alone in this fight and make the effort to seek the support and care that you need.
- Carbone, M., Kratzke, R.A. and Testa, J.R., 2002, February. The pathogenesis of mesothelioma. In Seminars in oncology (Vol. 29, No. 1, pp. 2-17). WB Saunders.
- Robinson, B.W., Musk, A.W. and Lake, R.A., 2005. Malignant mesothelioma. The Lancet, 366(9483), pp.397-408.
- Robinson, B.W. and Lake, R.A., 2005. Advances in malignant mesothelioma. New England Journal of Medicine, 353(15), pp.1591-1603.
- Tsao, A.S., Wistuba, I., Roth, J.A. and Kindler, H.L., 2009. Malignant pleural mesothelioma. Journal of clinical oncology, 27(12), p.2081.
- Incidence of malignant mesothelioma, 1999–2018 (2022) Centers for Disease Control and Prevention. Centers for Disease Control and Prevention. Available at: https://www.cdc.gov/cancer/uscs/about/data-briefs/no27-incidence-malignant-mesothelioma-1999-2018.htm (Accessed: February 10, 2023).
- Mesothelioma incidence: Number of cases & trends by demographic (no date) Mesothelioma Center – Vital Services for Cancer Patients & Families. Mesothelioma Center – Vital Services for Cancer Patients & Families. Available at: https://www.asbestos.com/mesothelioma/incidence/ (Accessed: February 10, 2023).
- Rudd, R.M., 2010. Malignant mesothelioma. British medical bulletin, 93(1).
- Hughes, N. and Arber, A., 2008. The lived experience of patients with pleural mesothelioma. International journal of palliative nursing, 14(2), pp.66-71.
- Watts, S., Leydon, G., Birch, B., Prescott, P., Lai, L., Eardley, S. and Lewith, G., 2014. Depression and anxiety in prostate cancer: a systematic review and meta-analysis of prevalence rates. BMJ open, 4(3), p.e003901.
- Watts, S., Prescott, P., Mason, J., McLeod, N. and Lewith, G., 2015. Depression and anxiety in ovarian cancer: a systematic review and meta-analysis of prevalence rates. BMJ open, 5(11), p.e007618.
- Thomas, S.P., Groer, M., Davis, M., Droppleman, P., Mozingo, J. and Pierce, M., 2000. Anger and cancer: an analysis of the linkages. Cancer Nursing, 23(5), pp.344-349.
- Julkunen, J., Gustavsson-Lilius, M. and Hietanen, P., 2009. Anger expression, partner support, and quality of life in cancer patients. Journal of psychosomatic research, 66(3), pp.235-244.
- Silver, J.K. and Baima, J., 2013. Cancer prehabilitation: an opportunity to decrease treatment-related morbidity, increase cancer treatment options, and improve physical and psychological health outcomes. American journal of physical medicine & rehabilitation, 92(8), pp.715-727.
- Given, C.W., Given, B.A. and Stommel, M., 1994. The impact of age, treatment, and symptoms on the physical and mental health of cancer patients. Cancer, 74(S7), pp.2128-2138.
- Saunders, J., Ashton, M., Hall, C., Laird, B. and MacLeod, N., 2019. Pain management in patients with malignant mesothelioma: challenges and solutions. Lung Cancer: Targets and Therapy, pp.37-46.
- Macleod, N., Price, A., O’rourke, N., Fallon, M. and Laird, B., 2014. Radiotherapy for the treatment of pain in malignant pleural mesothelioma: a systematic review. Lung Cancer, 83(2), pp.133-138.
- Breitbart, W.S. and Alici, Y., 2009. Psycho-oncology. Harvard review of psychiatry, 17(6), pp.361-376.
- Stress and depression of facing death: Investigation of psychological … (no date). Available at: https://www.researchgate.net/publication/233043077_Stress_and_depression_of_facing_death_Investigation_of_psychological_symptoms_in_patients_with_mesothelima (Accessed: February 11, 2023).
- Abrahm, J.L., 2009, June. Palliative care for the patient with mesothelioma. In Seminars in Thoracic and Cardiovascular Surgery (Vol. 21, No. 2, pp. 164-171). WB Saunders.
- Demirjian, C.C., Saracino, R.M., Napolitano, S., Schofield, E., Walsh, L.E., Key, R.G. and Holland, J., 2023. Psychosocial well-being among patients with malignant pleural mesothelioma. Palliative & Supportive Care, pp.1-5.
- Harber, P. and Gee, J.B.L., 2005. Clinicians’ approach to mesothelioma. Malignant Mesothelioma: Advances in Pathogenesis, Diagnosis, and Translational Therapies, pp.369-379.
- Abrahm, J.L., 2009, June. Palliative care for the patient with mesothelioma. In Seminars in Thoracic and Cardiovascular Surgery (Vol. 21, No. 2, pp. 164-171). WB Saunders.
- Cunningham, S. and Groninger, H., 2019. Palliative Care Services for Mesothelioma Patients. Caring for Patients with Mesothelioma: Principles and Guidelines, pp.143-156.
- Anderson, R.C., Jensik, K., Peloza, D. and Walker, A., 2013. Use of the dialectical behavior therapy skills and management of psychosocial stress with newly diagnosed breast cancer patients. Plastic and Aesthetic Nursing, 33(4), pp.159-163.
- Cordes, M.E. and Brueggen, C., 2003. Diffuse malignant pleural mesothelioma: Part II. Symptom management. Clinical journal of oncology nursing, 7(5).
- Sanjida, S., Janda, M., Kissane, D., Shaw, J., Pearson, S.A., DiSipio, T. and Couper, J., 2016. A systematic review and meta‐analysis of prescribing practices of antidepressants in cancer patients. Psycho‐Oncology, 25(9), pp.1002-1016. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6204411/
- Brusselmans, L., Arnouts, L., Millevert, C., Vandersnickt, J., van Meerbeeck, J.P. and Lamote, K., 2018. Breath analysis as a diagnostic and screening tool for malignant pleural mesothelioma: a systematic review. Translational lung cancer research, 7(5), p.520.
- Mesothelioma: Causes, Who Is At Risk, Types, Symptoms, Diagnosis, Present Treatment, Emerging Treatment
- What Is Mesothelioma: Causes, Symptoms, Treatment, Diagnosis