Each year in America 90,000 young adults (age 15 to 39) will be diagnosed with cancer. While a “young” cancer diagnosis is still considered rare, the numbers are increasing at alarming rates. Over the past four decades, cancer in this cohort has risen by 30%. Yet, the long-term survival of AYA (Adolescent and Young Adult) patients is understudied and underserved, as are the Quality of Life issues these patients face after harsh treatments that may come with side effects 20, 30, or 40 years later.
For AYA patients, 5 or 10-year survival isn’t the goal, they may be hoping to live half a century or more … so why aren’t we doing more to support them?
As many of you know, I was diagnosed with a rare aggressive cancer at 34, high-grade small cell neuroendocrine, stage 3C, which sports a 7% to 10% survival rate. In order to have a snowball’s chance in hell at making it out alive I had to undergo a radical hysterectomy, months of chemotherapy (cisplatin/etoposide), weeks of concurrent radiation, and brachytherapy.
If I get the privilege of living, all these harsh treatments have long-term consequences.
Pre-mature surgical menopause includes an increased risk of heart disease and osteoporosis as well as depression and loss of sexual function. The chemo, radiation, and other cancer drugs (like Growth-Colony-stimulating factors, G-CSFs) increase my risk of secondary cancers down the line, including Acute Myeloid Leukemia. One recent study utilizing SEER data reported that AYA cancer survivors have a higher risk of death due to infection, cardiovascular disease, and renal disease.
Indeed, studies that look at the Overall Survival of AYA patients are a little bleak. A study using data from over 16,000 cancer patients in the MD Anderson tumor database found that the 25-year survival of AYA patients is much lower than the general population, alluding to the very long-term risks of both recurrence and cancer treatment.
Survival was worst for people diagnosed between 30 and 39.
- The 25-year OS rate of survivors diagnosed at age 15–19 years was 74%.
- Survivors diagnosed at age 20–29 years was 72%.
- Survivors diagnosed at age 30–39 years was 64%.
The study did find that Overall Survival has increased from the 70s, 80s and 90s — but it’s still nowhere near the Gen Pop.
We KNOW people diagnosed with cancer young are more likely to suffer long-term health effects, secondary cancers, and die sooner … SO WHY AREN’T WE HELPING THEM?
The issue is, that most cancer patients in America are over the age of 60 (average age is 66), which means they’re not looking to live 40 or 50 years AFTER their diagnosis, so getting someone to No Evidence of Disease is the END GOAL.
But for young cancer patients, stripped of their hormones and body parts, getting to No Evidence of Disease is only the first goal. Our second goal is to never go through cancer treatment again, not die prematurely from a heart attack, and still be able to have sex with our partners.
However, after our 5 years are up we’re simply sent on our way to suffer in silence, without proper screening, prevention, and Quality of Life support.
WHAT CAN BE DONE?
First of all, insurance simply doesn’t cover enough costs to help AYA patients.
For example, fertility preservation — through egg freezing, sperm freezing, and ovary freezing — isn’t always covered. It’s timely and costly, therefore it’s not available to everyone. But it should be. In the same way insurance companies were forced to cover reconstruction surgery for breast cancer patients in the 90s, they should be forced to cover ALL fertility treatments for cancer patients — including the necessary IVF that comes years after egg and embryo freezing.
Not only that, insurance DOES NOT cover enough complementary cancer treatments. CAM treatments not only improve survival but often help mitigate side effects, which should be reason enough to cover them, but especially for AYA patients who are looking to live decades longer than their diagnosis.
CAM can include things like high-dose IVC, ozone, mistletoe therapy, acupuncture, massage, and more. We’ve allowed Big Pharma to control all clinical trials and drug development for too long. Just because something can’t be patented doesn’t mean it’s not worthy of clinical testing (*cough cough* high dose IV Vitamin C).
Insurance often does not cover genetic testing. If you’ve been diagnosed YOUNG, you should have a RIGHT to know if there are other factors at play (think BRCA, PALB2, ATM, TP53) — even if you don’t have a family history of cancer.
There should be more support and education for young cancer survivors to meet with nutritionists, physical therapists, mental health counselors, and other lifestyle coaches who can help with diet, exercise, and overall well-being. These appointments are often costly and difficult to get referrals for.
Gen pop might not understand, but cancer patients are bogged down in doctor appointments — like all the time — and young cancer patients may still be juggling full-time jobs and kids in addition to appointments. So sometimes, hunting down a pelvic floor therapist or a psychologist is low on the list of priorities. It’s timely and costly.
This is why we need more available resources for AYA patients to easily access these services. And more support to access costly, new treatments like Ketamine therapy, vaginal rejuvenation, nutritional IVs, and more.
Surviving a Young Cancer Diagnosis comes with a host of issues older patients are not faced with — long-term fertility and sexual dysfunction, serious PTSD, the stress of taking care of oneself (and a young family), fear of recurrence, loss of body parts that will carry long term side effects, permanent destruction to the immune system harming the overall quality of life, and many more from loss of hormones or chemotherapy side effects increased risk of coronary heart disease, osteoporosis, depression, dementia and Parkinson’s Disease.
There are absolutely things we could be doing better to help AYA patients but we’re simply not. We’re allowing this population to go overlooked and underserved simply because “beating the cancer” is enough for the medical community. And don’t get me wrong, BEATING THE CANCER is HUGE, but it’s not enough. I want to remind everyone that cancer doesn’t end when treatment ends, and for the AYA community that means we may live years or decades with fear and uncertainty about our increased health risks.
We need help and we need it now.