Head and Neck Cancer Support SocietyOf the patients, by the patients, for the patients.
About our society
In 2015, the Institute for Reconstructive Sciences in Medicine (iRSM) conducted an initiative to address their Waitlist process. Part of this process involved seeking patient feedback. A key component of that feedback noted that support for Head and Neck Cancer patients would benefit from improvement.
The Head and Neck Cancer Support Society is the result of sustained efforts of Dr. Suresh Nayar and a small but dedicated group of head and neck cancer patients who began collaboration in 2016.
In July 2018, the Head and Neck Cancer Support Society officially received its registered Society status.
Our Board Members
I experienced a sore throat that would not go way, beginning in April 2014. After numerous scans and countless visits with both medical and dental practicioners, massage therapists, chioropractors, it finally took a biopsy in June of 2014 to confirm a diagnosis. I was never given the news. It took a follow up call to get them to recheck the results and met with Dr O’Connell shortly after, and then began the myriad of tests.
I was diagnosed with squamous cell carcinoma, My surgery took place in February of 2017. My surgery included the removal of 75% of the left side base of tongue, a graft taken from my forearm to replace the tongue tissue, and a graft from my thigh to replace the skin on my forearm. My left salivary gland was removed as well as 62 lymph nodes in my neck. I think overall it was 14 ½ hours, not sure, I was sleeping!
Throughout this ordeal I soon realized the need for support and an ability to have some of the hundreds of questions I had answered, much of which I needed prior to the treatment.
I have now made it a personal mission to do whatever I can to make this very worthwhile Society available to assist as many people as possible. It’s important. I would love to have the Society grow and become the leading organization for Head and Neck advocacy, not only in Edmonton, but Provincially, nationally and eventually North America!
We have a lot of work to do, but together, we will make it happen!
- March – April – iRSM Waitlist initiative Focus Group Task Force meetings.
- April – Waitlist initiative Focus Group Summary Report which identified need for a support group.
- November – first meeting called by Dr Suresh Nayar and formation of iRSM Patient Advisory Team
- Monthly meetings to discuss way forward in establishing patient support group
- Ping Mason-Lai, SPOR patient engagement platform facilitator brought in to help facilitate understanding of what support services is required.
- Patient survey carried out to ascertain need for support and data collected.
- Patient survey completed and data compiled.
- Applied for recognition as a registered society in the province of Alberta
- Board of Directors appointed
- July – Received confirmation as a registered society in Alberta
Head and Neck Cancer Support Society
P.O. Box 4773 Edmonton, Alberta T6E5G6
Head and Neck Cancer Support Society - By the Patients For the Patients. Supporting those affected by Head and Neck Cancer. -2018 Edmonton, AB, Canada