Patient and Caregiver Dealing With a Mesothelioma Recurrence

• Lisa Hyde-Barrett
• Nurse's Corner

“Cancer that has recurred (come back), usually after a period of time during which the cancer could not be detected. Cancer may come back to the same place as the original (primary) tumor or to another place in the body. Also called recurrent cancer,” is the National Cancer Institute’s definition of recurrence.

Over the years, I have cared for many patients who have not only had to deal with the initial diagnosis of mesothelioma, but also with subsequent recurrences. Sometimes, like the patient I saw this week, recurrence is mentally challenging to the patient and the family. The patient, a man in his early 70s, had his disease return to the other lung, the non-operative side. He is physically weak and having trouble breathing. Mentally, though, he is alert but full of despair. His caregiver is angry and frustrated. It is hard not to be filled with these emotions after they have tried so hard to fight this disease with the best tools that are available, but still it has progressed and returned.

The caregiver was angry at the doctor, hospital, the rest of the family, anybody she came into contact with. Dealing with her anger, and his despair, can be very challenging. The focus needs to shift by turning the emotions into fighting the disease not each other. Fight the symptoms, the pain, the shortness of breath-make those the enemy.

While dealing with all of the emotion, the medical team must focus on the patient‘s desires. When asked what he wanted to do, the  man said he wants to be home for his last days. Even while his team looks for ways to make this a reality, his caregiver cannot see her way for it to happen. It will take time and continuous support for both the patient and the caregiver to work through everything.

How do people cope with their emotions when mesothelioma returns? We have seen a variety of responses all unique to each patient. Visit the National Cancer Society web site for some very helpful advice and resources for the caregiver and patient.

Everyone’s mesothelioma and situation is different, and a recurrence, for some is just a setback that can be overcome both physically and emotionally. Many patients have progressed to where mesothelioma is treated as a chronic, ongoing disease.

The faces of recurrence are as varied as each individual’s journey with this aggressive disease.  During these times it is the most difficult to remain positive. Reach out, there are resources and people to help you and your family get through the dark days.