Appendix Cancer and PMP Patient Organization Statement

The Rare Disease Day 2015 theme is: Living with a Rare Disease – Day-by-Day, Hand-in-Hand.

As patients and caregivers who have been impacted by peritoneal cancers (Appendix Cancer, Pseudomyxoma Peritonei, and other Peritoneal Metastases) our organizations have chosen to join together to share a simple message about these diseases.

Rare Disease Day 2015 Appendix Cancer and PMP Patient Organization StatementWe are delighted that for the 2nd year running, the Rare Disease Day Ambassador is Sean Hepburn Ferrer, who lost his mother Audrey Hepburn to peritoneal adenocarcinoma in 1993 at a time when she was offered little treatment or hope. Over 20 years after Audrey Hepburn’s experience, one of the greatest challenges with these diseases is still correct and timely diagnosis and access to the Standard of Care: cytoreductive surgery plus hyperthermic intraperitoneal chemotherapy (CRS+HIPEC). In many cases, symptoms are
misunderstood for years and patients are thus less likely to benefit from CRS+HIPEC. This treatment, unavailable to our patient population only a generation ago, has turned what used to be an almost certain death sentence into hope for thousands of patients around the world.

Our organizations share the goal that every patient who presents with the common symptoms of these diseases – abdominal pain, increased abdominal girth, bloating, hernia, ovarian cysts or tumours,
and ascites – receive correct diagnosis through tumor marker blood tests (CEA, CA 19/9, CA-125) and CT scans and be afforded the option to be treated with the Standard of Care, CRS+HIPEC, by a qualified specialist surgical oncologist, before other counterproductive and potentially damaging treatments are attempted.

CRS+HIPEC has been shown to provide long-term survival in up to 90% of patients with low-grade PMP pathology who are properly diagnosed and undergo this treatment early enough in the disease process and demonstrated overall 10-year survival in nearly 2/3 of patients diagnosed with this disease regardless of pathology.

We share the hope of achieving this goal, and by joining together in this statement and sharing this information, we strive for future patients suffering from these diseases to receive the better care that they deserve.

We continue to strive to work together for the greater good of all those affected by this rare cancer: living with a rare disease – day by day, hand in hand.

Appendix Cancer Connection

Be UninTIMidated

The Insurance Warrior

PMP Pals’ Network

PMP Research Foundation

Pseudomyxoma Survivor