FERTILITY: An Unresolved Struggle for Young People with Cancer
By Rethink Breast Cancer June 29 2017
If you have followed Rethink before or read any of our previous content, you know that young people with cancer face unique challenges throughout – and after – their diagnosis.
Recently, the Canadian Partnership Against Cancer published a report on the challenges AYAs (Adolescents and Young Adults – ages 15-39) with cancer face. The report argued that young adults with cancer have greater psychosocial and medical needs. Here are just a few of the medical needs:
- Their diagnoses are more complex, landing somewhere between pediatric and adult oncology, and require a broader range of expertise;
- They are more susceptible to delayed diagnosis due to low suspicion; and
- Their cancers are often more advanced, requiring more aggressive treatment.
It’s the cancer treatment that causes the risk of infertility. With their need for more aggressive treatments, this risk is big for AYAs with cancer. As people are increasingly waiting until their 30s and 40s to have children, many AYAs have not yet started or completed their families when diagnosed with cancer (The Asco Post). So, fertility after cancer is a major concern for them and, research shows, this concern goes unresolved year after year.
A Lack of Referral
Even though fertility has proven to be a major concern for AYAs with cancer, studies show that most of them are not spoken to regularly about fertility by their doctors and are often not referred to a fertility specialist or counsellor.
The Cost of Preservation
Even when AYAs are referred to fertility counsellors and/or clinics, the options presented to them are easily out of price-range. For example: according to an article by Huffington Post, egg freezing can cost anywhere from $10-12,000, plus up to $800 per year for storage (depending on the clinic). Often, this cost is not covered by insurance. While some clinics offer discounts to cancer patients, these discounts are not guaranteed and are often still not enough to make the procedure affordable.
A Limited Amount of Clinics
Turns out, even if they were able to afford it, there aren’t enough IVF clinics in Canada to serve AYAs with cancer. According to the Canadian Partnership Against Cancer, if all AYA women diagnosed with cancer were referred to a clinic, there would be an increase of 103 patients per clinic per year (Ontario) and 230 patients per clinic per year (Alberta).
A Lack of Research
One of the main reasons AYAs are so under-served in this area is a lack of well-targeted research. Only 4% of Canada’s total cancer research investment goes to AYA-specific cancer. That’s only $1.8 million over the 8 years between 2005 and 2013. And while the overall research investment for cancer in Canada has gone up over the years, the amount of money going towards AYA-specific research has stayed the same. And this research has focused mainly on cancer control, survivorship, and outcomes research as opposed to the unique needs and concerns of AYAs specific (like fertility).
It’s clear that we have a long way to go in addressing the fertility needs and concerns of young people with cancer. A fact that’s often overlooked is: young people with cancer are still young people. Yes, their lives are drastically different from the average young person, but many of their desires will still be the same. For most AYAs with cancer, it’s not enough for oncologists and treatments to get rid of their cancer. Yes, they want to get better and they plan to get better. But, when they do, they want cancer to have a minimal impact on their future plans.
And, for that reason, we need to do better when it comes to fertility.