Fear is a Real Part of a Mesothelioma Diagnosis

• Lisa Hyde-Barrett
• Nurse's Corner

When a doctor tells the patient has been diagnosed with malignant mesothelioma, we sometimes see a paralyzing fear in both patients and their family members.

This past week, at a new patient orientation meeting designed to introduce the support team, give general information regarding mesothelioma, explain what practical supports are available, and to generally reduce a patient’s and the family’s anxiety, the presentation did not seem to be helping one family. By the end of the meeting their fear was still palpable.

Fear, as defined by Merriam-Webster, is “an unpleasant often strong emotion caused by anticipation or awareness of danger.” Researchers have identified  in the literature three major cancer related fears: fear of death, fear of recurrence, fear of stigma.

The fear of death and a cancer diagnosis can be paralyzing. Although, for some, the amount of time further away from the diagnosis the patient gets, fear begins to diminish. The emotional scars that being diagnosed with cancer can inflict, all individual factors, contribute to when a person is able to resume a “new normal life.”

The ‘fear of recurrence’ emotions can also vary in patients, ranging from worry and sleepless nights, to thoughts of suicide. On the positive side, once diagnosed with a recurrence, the person is already more knowledgeable about their disease, able to navigate the healthcare system, and know that it is possible to return to a “new normal.”

Cancer diagnosis can still carry a stigma. Changes in the dynamics of family relationships, role changes in a relationship, ability or inability to return to work can all stigmatize a person with a cancer diagnosis. The stigma can be in how the patient sees himself, or how he thinks others perceive him.

Fear is a four-letter word, as is hope. When facing a serious cancer diagnosis like malignant mesothelioma, the most important thing is to not lose hope.

At the conclusion of the meeting while speaking with this family, they were able to verbalize their fears.  The patient was elderly, the onset had been abrupt, and they had heard that surgery was very “rough.” They were not willing or ready to lose their husband and father to this disease.  Once their fears were acknowledged, we were able to remind the patient and family of the facts. His general overall physical fitness, his early diagnosis, localized disease, type of mesothelioma,  and a warm caring family to help him through and around obstacles in the future, were all positives in their journey with mesothelioma.

Balancing fear and allowing for hope is an important part in the treatment of malignant mesothelioma.