As I was walking down the hall yesterday I heard someone saying, “My cancer is not curable but is treatable.” To date we have no cure for malignant mesothelioma, but many more treatments are available than ever. Surgery, radiation, chemotherapy, immunotherapy, alternative therapy, and clinical trials are all options for the Meso patient. This may or may not seem like a lot of choices but looking back to 10 years ago- it is huge. To have an option has not always been the case when dealing with a mesothelioma diagnosis.
Another benefit that was not so prevalent ten years ago is the support therapy that is available because of social media. I have cared for so many patients who have participated in support groups on-line, which have helped them through their mesothelioma journey. They may not be for everyone but for many they have helped make the journey less lonely.
In the United States a rare disease is defined as a condition that affects 200,000 people or less. Rare diseases, also known as orphan diseases, fall into that category because drug companies are not interested in developing treatments. This research can be costly and only a small population will benefit. Rare diseases need champions and with mesothelioma the community has champions of many different backgrounds and expertise. Although there are many treatment options, not everyone is a candidate for all options. Despite what you want, your disease and body determine the treatment that will be offered.
If you have been diagnosed with mesothelioma, ask yourself what it is that you want. The most important thing is doing what you want and having peace of mind during the journey. Surround yourself with knowledgeable professionals who can explain your options and the disease. Mesothelioma Awareness Day was celebrated on September 26, 2018. Many people shared on social media their loved ones who were and are affected by mesothelioma. As I scrolled through the entries it was staggering how many people have been affected. The number of people in someone’s life family, friends’ acquaintances, relationships that are changed due to a diagnosis of malignant mesothelioma. The pictures make it so much more real than just the statistics.
The statistics of survival are not favorable but again that too has improved with knowledge and research. If you have been diagnosed with mesothelioma or your family member has, you will agree the facts are overwhelming and scary. The flip side is that there are people currently living their lives taking trips, spending time with family and friends, and doing what they want who are being treated for mesothelioma.
This year has been an exceptional year in the world of mesothelioma. We have seen progress and hope. There have been survivors and memories being made by some while undergoing treatments. In the words of one of the first mesothelioma treatment pioneers, the late Dr. David Sugarbaker, he always spoke about hope and that it had to be part of the equation. Make the most of your days, stay positive and keep moving.
