Once again, today is NET Cancer Day. November 10th is a day set aside to increase awareness of neuroendocrine cancer and to promote improved diagnostics, treatments, care, and research, but for those of us who live with the disease, every day is NET Cancer Day.
Here are a few alarming facts that point out why a day like today is vital:
- Over 90% of all NET patients are incorrectly diagnosed and initially treated for the wrong disease!
- The average time from onset of symptoms to correct diagnosis often exceeds 5 years!
- Over 50% of NET patients are already at stage 3 or 4 when diagnosed!
- Many primary care physicians are unfamiliar with NETS and some still falsely believe that it isn’t even cancer!
These are just some of the reasons that I have become involved in patient advocacy over the past couple of years. Once considered a rare disease, NETS has become the fastest growing class of cancer worldwide. Although the reasons for this aren’t fully understood, it’s likely due to increasing awareness and better diagnostics.
In addition to my role as a member of the CNETS (Canadian Neuroendocrine Tumour Society) Advocacy Advisory Board, I’ve become actively involved in trying to improve the patient experience in a number of other ways. I had the opportunity to participate as a patient representative in an Ipsen project to design an injection toolkit to make the experience easier for patients who are newly prescribed the medication that I receive every 28 days. Ipsen is the pharmaceutical company that produces the drug.
Also, if you’ve been reading my blog you know that I participated in this summer’s CNETS “Hoofing It” fundraiser. With the generous support of many, including some of you who read the blog, we managed to raise over $40,000 for NET cancer research here in Canada. An additional bonus for me was the fact that the “hoofing it” that I committed to as part of this initiative got me out walking almost every day. Now that the campaign is over and the weather has turned cold, daily walking has become a habit and I’ve dusted off the treadmill in the basement so that I can keep it up over the winter!
Another big opportunity came my way earlier this year when I was asked to co-lead the CNETS Alberta patient support group that meets online once a month. This really was a big step for me as I’d never been part of a support group before! Every month I hear stories from patients who were initially misdiagnosed, who feel confused or unheard, whose symptoms have been minimized or dismissed as all in their head, who feel lost trying to navigate the health care system, or who don’t know how to advocate for themselves. More than ever, I’ve come to realize how badly we need to continue raising awareness and promoting better diagnostics, treatments, care, and research. One day a year just isn’t enough!
And now, on a more personal note, you may remember that in my 12 year cancerversary post at the end of August, I mentioned the latest tumour on my liver. A week from today, on November 17th, I’ll be having a CT guided ablation to destroy it. A needle-like probe will be inserted through my abdomen and into the tumour where it will deliver microwave energy to kill the cancer. This is done as a day procedure, but I’ll be required to stay in the city overnight in case of complications. I’m not sure what the recovery will entail, but hopefully I’ll be back on the treadmill before long!

Winter’s arrival is later than usual this year. We haven’t seen a snowflake yet which is highly unusual, but the weather forecast tells us they’re coming soon. I’m definitely not a fan of the season as it’s always way too long and too cold here on the Canadian prairie, but one thing that I do look forward to every year is wearing boots. 
In this international bestseller, renowned mental health expert and speaker, Dr. Gabor Maté, provides insight into the critical role that stress and emotions play in the development of many common diseases.
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As much as I hate to see summer come to an end, I have to quit denying reality and accept the fact that fall is here! The days are getting shorter, the furnace is coming on in the morning, coloured leaves are falling, and the farmers around us are finishing harvest. I actually love autumn, but it’s a bittersweet season because it means that our long, cold winter is just around the corner.
At seven years old, Suzanne Heywood set sail from England with her parents and younger brother on what was supposed to be a three-year trip around the world retracing one of Captain Cook’s voyages. What followed was a decade of isolation on a 70-foot sailboat crossing some of the world’s most dangerous oceans and surviving horrendous storms, shipwrecks, and reefs. What sounded like the romantic adventure of a lifetime became a child’s worst nightmare “trapped inside someone else’s dream”.