Long-Term Mesothelioma Survivors Help Guide Research, Care

• Lisa Hyde-Barrett
• Nurse's Corner

Over 25 years ago, as a young RN working nights, one of my male co-workers was diagnosed with non-Hodgkin lymphoma in his mid 20’s. He was married and wanted to start a family. Dealing with the diagnosis, and the changes it was making in his life were difficult. He sought counseling, followed his doctor’s recommendations, underwent treatments and went into remission. He and his wife had a family and he continued to work.

All of this was challenging, but he always wore a smile. He has had health challenges over the years and has undergone procedures, been treated for complications of the therapy, and tried new therapies. He has continuously given back to others who have  been diagnosed with cancer. Recently, I ran into him. He said his original doctors have retired, and that his “doctors do not know what to do with me.”

He is a long term survivor, a pioneer, happy to be in the position he is in. His children are young adults, he has seen them grow, been part of their lives. He has been able to experience the important things that matter the most in life. At this point he is a survivor, and he and his doctors are learning together how to manage anything that comes up for him medically.

His story is starting to become more common. A long term survivor of malignant pleural mesothelioma recently related the same issue to me. He is glad to be in the category of survivor, but there are issues that do not seem to have guidelines. Questions get answers that are often vague.

This issue is an important one: care of long term survivors of mesothelioma cancer and their quality of life. It is a part of ongoing research. As we know, it takes time for the research to be developed and the results analyzed.

Once again, it is the brave people who have been diagnosed, treated, and survived that are leading these pioneering efforts to help others.  By bringing attention to this issue, the mesothelioma community can come together and support and learn from the survivors. Not only has the community benefitted from their courage in trying new treatments over the years, it has led to a point where a small number of survivors are now living longer. As the community continues to support patients at the beginning of their journey, long term survivors also need our ongoing support.