What Robin McGee Has Learned as Colon Cancer Advocate

Colon cancer survivor and advocate Robin McGee shares what she’s learned

new treatments for colon cancerRobin McGee is an incredible woman. After going through things that would leave many people at their breaking point, she was able to adapt and overcome.

After being misdiagnosed several times, and ultimately having colon cancer, she has been committed to sharing her story so no one has to go through what she did.

She has written a book (The Cancer Olympics), and speaks across North America, sharing her story and wisdom with others.

Robin has learned quite a bit in her time as a colon cancer advocate.

In this video, she shares her insights and story, in hopes that you too can benefit from hearing her story and glean some strength from her battle.

Robin McGee:  I got the bug for cancer patient advocacy while I was still a patient in treatment because one of the things that I discovered to my total horror was that the best practice chemotherapy for my kind of cancer was not available in my province, it was available everywhere else in every other province and in United States, in Europe, in Australia everywhere but just not here in Nova Scotia and so, I and my community lobbied the government successfully, lobbied the government to extend our formulary to include the best practice, chemotherapy, FOLFOX chemotherapy but unfortunately too late for me to receive it.

So that is one of the stories you hear when you, in this book The Cancer Olympics where I described what that was like, what that fight was like but there is another more painful reason why I chose to become an advocate, more difficult to talk about but even more deeply and passionately attached to advocacy for this reason and that is also a topic that is raised in the book here and the reason is that I received truly terrible diagnostic care, so truly terrible, it is not just my opinion, it was so truly terrible that three of four doctors I saw in my diagnostic pathway were disciplined by the College of Physicians and Surgeons for their egregious cancer negligence, so endoscopy that should be 60 days by our new practice standards in our province, in my case took 661 days, so from when I first walked into a family doctor’s office with semi-urgent symptoms of colorectal cancer treatment for T4N2 stage 3C colorectal cancer was two years to the day.

So because of that, I left that experience saying I don’t want any other Nova Scotia, I don’t want any other human to undergo that kind of medicine, that kind of experience, so when I learned that in my province, all my province was going to have a cancer standards oversight community that a patient can join, I was all over that, I joined that, I met many people who had very similar stories sad to say but who were equally committed to improving standards of cancer care into treatment but in my case, fundamentally passionately, I wanted to assist my province in developing standards relating to detection and diagnosis of colorectal cancer because the best treatment standards in the world don’t matter if people are being detected too late to save them. 

So, what that means, no one in Ontario had done something kind of similar what we did in the Nova Scotia, we took what Ontario had done and they worked out, who, what sort of symptoms should a family physician refer someone to endoscopist urgently as in within four weeks this set of symptoms and what are the set of symptoms for which someone should be referred urgently within eight weeks, so four weeks, eight weeks not 661 days and in our case here in Nova Scotia, what we the patients did is we pushed and pushed and pushed the healthcare providers to say, this cant be just left up to by guess and by golly; this has to be a systematic methodical process, so we along with GI specialists and surgeons and experts and other experts designed a template, a checklist and if you will that family doctors must go through in order to refer someone to endoscopy that does include things like family history, things like the nature of the rectal bleeding if present, the nature of the anemia if present, all of these kinds of signs that ought to be alarm symptoms to a family doctor and cause prompt diagnosis.

So, what I can say both being an advocate, I can say that it was such a privilege to be, to assist my province in a systemic response to the kind of mediocrity that underlay my horrible but avoidable outcome and that there, in my province in Nova Scotia, there are about a 1000 colorectal cancer patients diagnosed each year, so that is three everyday and we are a little tiny province, we are not even a million people, so if there are better standards of diagnosis and detection, that saves hundreds and hundreds of lives and so, you know, I don’t know if my, I don’t have the greatest prognosis as a result of my late, late, late, late, late stage at which I was detected, but I determined to dedicate rest of my life to making sure that no one else dies prematurely.

Robin McGee
Dr. Robin McGee is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Port Williams, Nova Scotia, she has been a dedicated clinician in health and education settings for over 25 years. Since entering remission, she has been very active in patient advocacy, serving as the patient representative on several provincial and national initiatives aimed at improving standards of cancer care.‏ Her book "The Cancer Olympics" details her journey with colon cancer, her search for justice with the College of Physicians, and her advocacy for fair drug policy with her government.

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