General rules for living with malignant pleural mesothelioma: there are no absolutes, and what’s right for one person is wrong for another. Ask, research, review, and ask again until you’re satisfied that you’ve made the best decision with limited time, limited resources, and limited information:
1. As soon as you’re diagnosed, find an expert. Use one of the resources listed below to find one.
2. Local doctors have little or no experience with meso due to its relative rarity. Get a second opinion.
3. Use an expert surgeon or oncologist who specializes in meso to develop your treatment strategy, even if implementation is done with your local physician.
4. Connect with other patients through a mesothelioma outreach and support group such as
–The Pacific Heart, Lung & Blood Institute
–Mesothelioma Applied Research Foundation
–Asbestos Disease Awareness Organization
5. Make an early decision about what type of treatment to pursue
–Time is the enemy. Read, research, ask questions, and decide quickly
–Opt for multi-modal treatment rather than chemotherapy alone if feasible
–Opt for pleurectomy/decortication rather than extra-pleural pneumonectomy if feasible
–Don’t let inexperienced surgeons operate on you. Only a few are meso experts. Consult with one of the above groups to make sure you’re using the best of the best.
6. Network, network, network.
As 5-year meso survivor and advocate June Breit famously said, “Rule One is ‘Get thee to an expert.’ Rule Two is ‘Get thee to another expert.’”