By Kirsten Efremov
Cancer doesn’t know when you turn 18, says Dr. Sunit Das, neurosurgeon, St. Michael’s Hospital, Toronto, Ontario.
When we think about cancer, generally speaking, adults do not get childhood cancers and children do not get adult cancers, yet there is a stark separation of treatment modalities between someone who is 17 and someone who is 19.
Leukemia, brain tumours, bone tumours, lymphoma, and kidney tumours are some cancers that are often found and linked to paediatrics. Breast, lung, prostate, cervical and bowel cancers are often found and linked in older adults.1
But I know children who have had breast, bowel, and lung cancers, and adults who have had leukemia, lymphoma, and bone cancers.
In Canada, there are about 8,000 adolescent and young adults (AYAs) diagnosed with cancer each year, that’s about four per cent of new cancer cases per year. Between 2005 and 2013, 0.4 per cent of the total cancer research investment was specific for AYA and there was little change in the amount of funding directed to AYA cancer research, which was about $1.8 million per year. AYAs make up 40 per cent of the world’s population and contribute to one million cases of cancer annually2, yet so little research is being done on this population.
But who cares cancer is cancer, it doesn’t matter the age?
When I heard that sentence — “cancer doesn’t know age” — it surprised me. I knew this, but never heard it put in those words before, especially by a physician.
When an AYA walks into an emergency department, walk-in clinic, or primary care practitioners office, their symptoms are often dismissed, minimized, and blamed on mental health status, job/career, or lifestyle behaviours such as weight and sexual orientation amongst the ever growing list. The AYA population gets overlooked, often leading to a delayed cancer diagnosis.
Symptoms being blamed for lifestyle behaviours, rather than an actual ailment or disease, is an inexcusable excuse anyone in the health care field can use. People will say that’s because cancer mimics other diseases, which it probably does, but if we can catch cancer in older adults and pediatrics, then why are we missing it in a young adult?
If an AYA is coming to a healthcare provider, we’ve recognized there is a problem and are wanting more than a physical exam and history done. We know our bodies and are looking for a solution, not a pat on the back. For AYAs, it’s hard to get someone to run the tests the first time around. It can take multiple visits to a number of healthcare providers over weeks or months — sometimes years — for someone to do a test or procedure. I’ve heard this from many of my cancer peers. Ask any AYA how long their cancer diagnosis took.
I was 26 when I had my third diagnosis. I was misdiagnosed and without effective treatment for three months before a biopsy was done. I had about four different visits, with the fifth being the biopsy. Given my history of cancer, one would have expected quicker, more immediate treatment. Fortunately, my experience was quick given stories I have heard from my cancer peers.
As an AYA, I know we face very different life issues compared to pediatrics or older adults. Transitioning from high school to university/college, graduating post-secondary, starting a first apprenticeship or job, getting married, starting a family/family planning, buying a first home, investing, travelling — all of things suddenly stop or become massive barriers when we receive a cancer diagnosis. Not that anyone needs to follow society’s advice on what needs to be done by a certain age, but there are some expectations that just come with life.
Cancer puts a halt to all of that.
Bet you didn’t know that having cancer will make getting mortgage insurance more difficult, or that going back to work at six weeks rather than 12 could cause more fatigue that actual treatment. How about isolation? You are probably going to lose a lot of your friends, connections, and social network. You might even need to move back home. Did you know there are long-term effects because of cancer? Yep, look out for possible secondary cancers, cardiac complications, infertility, osteoporosis, or brain fog. Can you imagine living the next 50 or 60 years worrying that every little ache and pain can be cancer?
AYAs needs are poorly met and the number of years of life affected are greater than in children AND older adults.2
Although there is a high cure rate for AYA cancers, this population also has a high mortality rate because the cancers are often caught late or not at all. Many AYAs live with the No Evidence of Disease (NED) diagnosis, meaning you are clear for now but at any given time your cancer could return. A situation of it’s not if, but when.
Welcome to cancer as an AYA.
It is important to advocate for yourself as an AYA patient with any diagnosis, but especially cancer. We need to remind healthcare providers that cancer does not, and will not, discriminate. Cancer does not know when someone turns 18, 40, or 60, and frankly, it doesn’t care.
The saying is true: the battle begins once treatment is done. I would say treatment is the easy part. Someone is at least guiding and telling you what to do. No one is there for you when you are done. Hello and goodbye, or as David Rose (Dan Levy) would say, “Best wishes, kindest regards.”
So remember to stand up, be assertive, don’t take no for an answer, and keep asking the questions until you get the answer that satisfies the symptoms.
Cancer is an a$$hole.
- Cuvelier, G. (2017). Medical aspects of the adolescent and young adult cancer experience. CancerCare Manitoba. PowerPoint Presentation.
- DePauw, S., Rae, C., Schacter, B., Rogers, P., & Barr, R. D. (2019). Evolution of adolescent and young adult oncology in Canada. Current oncology (Toronto, Ont.), 26(4), 228–233. https://doi.org/10.3747/co.26.4965