The Fault in our Scars: The Realities of Adolescents + Young Adults with Cancer

Point blank, Nobody wants to hear the words “you have cancer”. It doesn’t matter your circumstances, age, socioeconomic status, or gender, the C-word is not a fun one to hear. Among youth, it may be even more difficult.

Adolescent and young adult cancer, commonly known as AYA, is a catch-all name for any cancer that impacts adolescents and young adults between the ages of 15 and 39. A number of these types of cancer have distinctive traits and behaviors which dictate unique treatment regimens. Even though cancer is the second most common cause of death for people in this age range, it receives a disproportionately little amount of funding for research.

While cancer is a massive curveball thrown at around 87,050 adolescents’ lives it is placed atop the present chaos of the transitional period at this point in life. Whether it be starting high school, moving away for college, or working a first job – adding on a life-threatening diagnosis for the age bracket is incredibly difficult to experience. 

Since patients are not fully children nor fully adults, treatment locations are not necessarily their decision. Imagine being 17, newly diagnosed with cancer, and placed on a bare-white hospital floor with adults and elderly patients. On the other hand, you could be placed on the pediatric floor occupied by deathly ill children, and their sorrowful parents. At the end of the day, there is no “easy” way through cancer treatment. 

For 24 year old Osteosarcoma patient, Mia Sandio, she was placed on the pediatric floor at the age of 18. When she was diagnosed with a 2.5 inch tumor in her tibia, she had to take a leave of absence from her rigorous college curriculum at the University of Washington. The once highly involved student had to transfer all of her focus and energy into one thing: staying alive. 

While her sorority sisters of Chi Omega were going to formals, partying, and enjoying the sea breeze of Seattle, Mia was isolated in her home – before the COVID-19 pandemic even hit. 

Not only does the extremely rare mutation of Osteosarcoma Mia lives with complicate her treatment, but her age as an AYA makes effective treatment especially hard to come by. She tried a myriad of Chemotherapy regimens and immunotherapies. One of which almost cost her her life. With little research on her cancer, Mia’s oncologists have been working tirelessly to find and provide the most effective and least harmful treatment. Through cisplatin, ifosfamide, high-dose methotrexate, doxorubicin, etoposide, carboplatin, Farydak, Velcade, regorafenib, and Opdivo – just to name a few – Mia and her team continuously scour research databases and clinical trials for a curative option.

As of 2022, Mia’s cancer metastasized to her lungs, scapula, sacrum, pelvis, T7 vertebrae, and femur. She has been undergoing unique procedures called ablations (both cryogenic and radiofrequency) to treat her aggressive metastases. 

Ablation is a minimally invasive procedure in which a doctor uses a probe-like device to destroy cancer cells. It is usually done through a small incision or a needle. Ablations can be used to treat tumors and other abnormalities in the body. It is particularly useful for treating certain types of cancer, such as prostate, liver, and kidney cancer. However, it is not commonly used for osteosarcoma. 

AYA Cancer is rather rare and unfortunately, it does not receive the research funds or publicity that many other forms of cancer do. Compared to some of the more common forms of cancer that affect thousands of people, it has only been identified in a handful of children. Consequently, the attention needed to make progress in treating these cancers is lacking.

Andrew Kung, MD, Ph.D., Chairman of the Department of Pediatrics at Memorial Sloan Kettering Cancer Center says “the survival rate for children with cancer has improved greatly in the past three decades; but for adolescents and young adults, there hasn’t been as much progress. This vulnerable population faces a whole host of unique challenges, including delayed diagnoses and underrepresentation in clinical trials” [… ] it is integral to support these patients “so they not only survive cancer — but also live a life beyond. One improvement to be made is how cancer is shown through entertainment channels 

People fail to acknowledge AYA cancer due to a lack of proper representation in the media. In the film adaptation of John Green’s, “The Fault in our Stars” a melancholic romance about teens with cancer, the illness is highly romanticized. In an article by NPR, interviewees discuss their distaste for Hollywood lens inaccuracies. Those undergoing treatment have no scars, no ports, and a “ warped perception” of the realities of Chemotherapy. As a result, AYA cancer in both paints and outsiders is not seen for what it wholly is and the mental and physical tolls it produces. 

Since onscreen portrayals often hit the mark, it does not mean that Aya Cancer is any less important than other forms of cancer, and it is still a devastating disease that affects families around the world. All forms of cancer should be given the same level of attention and research, regardless of how rare they are.

According to Mia, after almost five years of treatment, it is necessary to openly discuss difficult tips such as pediatrics and AYA cancers in order to raise awareness and create communities for patients and their families.