Kathy was diagnosed with stage-4 metastasized malignant melanoma in 2003, a year after her first visit to her doctor. From then, she says, it’s as if she had been thrown into a dryer – her life spun out of control.
Melanoma starts in melanocytes, cells that make melanin, or the pigments that give skin and eyes their colour. It is a malignant tumour that usually starts in the skin, and can spread to other parts of the body.
An important sign of melanoma is a new spot on the skin or one that changes in size, shape or colour. As well, if a spot appears different from other moles or blemishes on the skin, it could point to possible melanoma. Other signs of melanoma include a spot with irregular edges, one that is crusted over or bleeding, one that feels itchy, tingling or painful and a growth under a fingernail or toenail.
About 1,200 Canadians were estimated to have died from melanoma in 2016.
After years of various tests, treatments, surgeries, side effects and relapses, Kathy is now a survivor who helps other patients muddle through their journey with melanoma through her advocacy group, Save Your Skin Foundation.
“By my fourth visit to my GP (general practitioner) in 2003, my melanoma had already metastasized. I went on treatment for a year and finished by Mother’s Day of 2004. January 2005, they found a 14cm mass in my left lung. One doctor told me I had to remove my lung and another told me I could have chemotherapy. I went with chemo and it didn’t work. I went to a larger cancer centre and they told me there was nothing they could do. It was my son, of all people, who found me a drug in the U.S. that could work – but I had to fly to another province to have it administered. It was tough and the cancer side effects were terrible, but I responded really well. I had two more treatments after that – a clinical trial and surgery – and now I’m clear.
That is my story from ten years ago, and though the melanoma landscape has changed there are still challenges. So many treatments are being developed that it is difficult to maintain clinical guidelines for them, so all cancer centres are doing things differently. It is essentially a good thing that more treatments are being developed, but the approval system can be confusing and the process is slow. Additionally, many GPs are not given the proper training to diagnose melanoma, which often results in late or misdiagnosis; the limited number of dermatologists in Canada means even longer wait times.
What’s happening is that oncologists are going to different seminars and hearing about different things. There’s no continuity, no consistency. So most of the patients I meet are misdiagnosed at the onset by a GP or dermatologist.
When we put up the foundation, we didn’t know where to start and who to educate first. Eventually we decided that since patients come to us, we would arm them with the right information so they can ask their doctors all the important questions. To me, however, we need to inform them all.
It’s about education. Educate the doctors to know more about the disease and treatment options. Educate the patients and arm them with questions so they can make the most of the 15 minutes that they typically get with their doctors. We all need to be at the table – patients, doctors, advocates, policy makers and industry – to get all this resolved.”