An article by Maureen Coleman, President of the Carcinoid Neuro-Endocrine Tumour Society (CNETS) Canada www.cnetscanada.org, on carcinoid and neuroendocrine cancers is featured in the rare cancers section of the 2009-2010 Report Card on Cancer in Canada, released earlier this week by the Cancer Advocacy Coalition of Canada (CACC). The report card reveals that the country continues to lag behind in implementing advances in cancer prevention, diagnostics, and treatment.
According to Dr. James D. Gowing, Co-Chair of the CACC Board of Directors, “Patients with rare cancers are waiting for the system to catch up to advances in diagnostics and treatment of their diseases. Four of these rare cancer groups offer their thoughts on the experience of living with a rare cancer, where there is little or no public understanding, limited research, and troublesome barriers to clinical trials and treatment.”
In her article on neuroendocrine tumors (NETs), Maureen Coleman talks about the difficulty of getting diagnosed and treated in Canada. In 2009 the London Health Sciences Centre in London, Ontario, known by patients as “THE place to go for treatment,” closed its doors to new NET patients from outside the London Local Health Integration Network, creating a crisis of care for thousands of patients in Eastern Canada.
Ms. Coleman writes that, “It is known at this centre [London] that if approved Canadian treatment options fail, a qualified patient can be referred out of country to the UK for systemic radioisotope treatments (which are nuclear medicine treatments, using Lutetium 177 or Yttrium 90 to treat the patient’s tumours. The question on many patients’ minds is why wait for a list of options to fail? Why not have access to the best options right away?”
On a positive note, Ms. Coleman points to increased awareness through several conferences produced in 2009 by CNETS Canada in Winnipeg, Toronto, and Montreal, with a 2010 conference planned for May in Vancouver. 2009 also saw a successful cross-Canada Campaign that raised $60,000 for research, with funds matched by the Cancer Research Society. Another initiative in 2009 was the Qualitative Patient Project, focusing on a variety of issues affecting the NET patient community,
What are some of the plans for the future? “CNETS is working with a strategic planner to create a database to help locate our patient community,” says Ms. Coleman. “We also expect to talk with key decision-makers about the high cost of desperately needed out of country Lutetium or Yttrium radioisotope treatments, and the enormously cheaper options of having them done in Canada.”
And be sure to save the dates of Thursday, May 13 to Sunday, May 16, 2010 for the single biggest international carcinoid cancer and neuroendocrine tumor conference in Canada, presented by the CNETS. The theme of the conference for patients, caregivers, and medical professionals is Neuroendocrine Cancers: Networks of Expertise. Leading neuroendocrine specialists from eight countries will come together with the patient and medical community to discuss diagnosis and treatment. The beautiful Coast Plaza Hotel, overlooking English Bay and Stanley Park, in Vancouver, British Columbia, will be the venue for the conference. Space is limited to 375 attendees.
Thank you, Maureen Coleman and CNETS, for all of your hard work on behalf of the carcinoid cancer and neuroendocrine tumor community. It is because of your efforts there is greater awareness of these rare diseases in Canada and you are helping to change the course of the future for patients with your educational efforts and raising money for research.
To read the complete Report Card on Cancer in Canada, 2009 – 2010, click on the picture above. Maureen Coleman’s article appears on page 23.
