I’ve written here before that I am on the board of a new medical organization, the American Society for Peritoneal Surface Malignancies. Peritoneal surface malignancies are cancers, like appendix cancer, that spread into the abdomen. The state of the art treatment for these cancers is HIPEC or EPIC, chemotherapies administered directly into the abdomen. IV chemotherapies have limited effectiveness on these cancers, where as HIPEC snf EPIC can often allow for prolonged survival, as in my case….I am 10 years cancer-free.
We have some mountains to climb, though. We need to make this therapy recognized as effective and covered by all insurances (some won’t as they consider it “experimental”). We need to gather information to help document it’s effectiveness. We need to make the medical community more aware that this treatment is available. We need to know how soon patients see a specialist after diagnosis and how they are referred to specialists (self referral, MD referral etc.) and what treatments they receive before seeing a specialist. That information has never been compiled. There is a great need for this information to help promote specialized treatment for those diagnosed after us.
To help overcome these mountains, the American Society for Peritoneal Malignancies is creating a database, PROGRESS, of information answering these questions. Hopefully the answers will one day be compiled and published in a peer-reviewed medical journal, which will increase awareness and advance our cause in the medical community.
I’ve had several patients ask me how they can help in this regard, and here is a great chance! I have a PROGRESS questionaire and I am asking patients who have or will receive EPIC or HIPEC treatments to PLEASE participate!! You confidentiality will be maintained. It is really important we get patients and their surgeons to participate!! If you would like to participate, please email me at firstname.lastname@example.org and I will email you the form and help with any questions you have. Again, PLEASE help!!!