As human beings we all have some things in common. We are social people. We need cooperation, love and support. We need interactions with others. These are the things that unite us. Our lives are richer for the relationships that we have. The amount and quality of the relationships are up to us as individuals. Some we have a vast network of relationships, while others prefer a limited number of close relationships.

When someone is living with a potentially life altering condition, or in the case of malignant mesothelioma, a potentially fatal cancer, what are the things they are most concerned about?

An article was recently published that researched what the common concerns are of this diverse group. How are they coping with the diagnosis, and how are they living with it day to day? The article focused on malignant pleural mesothelioma, the most common form of this rare cancer.

What  is the lived experience of people with malignant pleural mesothelioma? Over the years there have been several articles that have been published from England and Australia regarding their research into the patient’s experience. In the United States an article was published in December 2019 in Cancer Nursing, titled “The Lived Experience of Persons With Malignant Pleural Mesothelioma in the United States.” The aim of this research was to explore the lived experience of patients diagnosed with  Malignant Pleural Mesothelioma in the United States and identify unmet patient needs. These are people that are living with the disease, have been diagnosed and sought treatment at a Mesothelioma Center of Excellence

After extensively interviewing patients, the three major themes that emerged were:

  • overall uncertainty and worry about the future;
  • concern over what effect will the disease have on them and how will it change the value of their relationships; and
  • how they will adapt to a new norm.

These are some of the concerns people are dealing with when they are living with malignant pleural mesothelioma. While worry is different than anxiety, both are associated with a general sense of concern, and we experience them differently. With worry we tend to experience more temporary effects in our heads, whereas with anxiety, we tend to feel more long-term struggle throughout our body.

This research shines an important light on living with malignant pleural mesothelioma from the patient’s perspective, the most important perspective of all. Hopefully this research will assist us all in helping diagnosed patients keep their concerns at the forefront of their treatment. Acknowledging the toll it takes on patients and families is an important part of any treatment plan.