Shortly after turning 15 years old, I was diagnosed with cancer. I was fully convinced it was not true because I thought it was only an “old person’s illness.” I was diagnosed with Pediatric and Wildtype gastrointestinal stromal tumor (GIST) with SDHA deficiency during the summer between my freshman and sophomore year of high school. I ended up being immersed in the health care system as an adolescent, and it was nothing like I expected.
As a teenager, I quickly learned I would be left out of the loop on many things concerning my health, including the diagnosis, treatments, planning, and tests. In the US, if you’re under the age of 18, your parents get to decide what you are allowed to know about your medical issues. I’m unsure if it’s the same way in other countries, but it immediately affected my relationships with my doctors and family. My mom was told everything about my condition before I was, receiving all of the phone calls, emails, and test results from my care team. This resulted in me not knowing much about my condition and creating a constant sense of worry.
When adolescents reach a certain age, I feel it is important that a healthcare provider advocates for the parents to involve their children in the communication and planning of their treatments.
Too Young To Know All The Facts?
While it was probably a good thing that my mom had to deal with the “hard things” like making the final decisions of what we should do next, it created a lot of emotional issues for me. I was anxious most of the time because I did not know what was going on with my health. I should have gone to therapy, but my mom opted out of that for me. I believe that it is important for parents to have some level of authority over their child’s medical care, but their child should also communicate issues and concerns without feeling like they are being dismissed.
While an adolescent’s brain is not fully developed, they still should have a say in what happens to their body. At the very least, I believe that around the age of 14 is when it should be considered that the child should become more involved in their health care decisions.
In June of 2019, I ended up in the emergency room and had emergency surgery to remove a tumor the size of a golf ball. The day leading up to this event was not how I wish it had gone. That morning I told my mom that something did not feel right, and she chalked it up to being period cramps. We ended up going to the mall, and I could barely stand upright, so my grandma had to come to pick me up and bring me home.
The pain was on the left side of my abdomen under my ribs. It was unbearable. How could that be period cramps? I couldn’t eat or drink anything without being in extreme pain and eventually started feeling very lightheaded. And I was passing out every 30 minutes or so. When my mom got home, she called my pediatrician and did not tell him what I told her. She did not tell him about the sharp pains or how I couldn’t eat or drink anything. She ended up downplaying it, saying, “My daughter is being dramatic again. She’s just having period cramps and some dull pain in her stomach.” Because my mom downplayed how I was feeling, my pediatrician recommended that I take an Advil and gas relief medication and told my mom I’d feel better soon.
More Delays, More Questions
When I was admitted into the ER, after much screaming and crying, I still was not taken seriously and the nurses and staff were dismissing me and only talked to my mom, which was very frustrating. When they finally acknowledged me they asked about my diet and exercise. After a while, I was once again told that I “just had gas” – and, this time, I was told I was a little constipated. Nobody would listen to what I had to say, so I actually started to believe what they were saying.
I eventually ended up getting an X-ray and some blood work, and a few other tests done. The results showed I was severely anemic and had a tumor that burst in my abdomen that needed to be removed. I specifically remember my Oncologist asking my mom permission to give me my diagnosis, which I thought was weird. Why would I need parental consent to know what was wrong with my body?
Further down the line, it was little things here and there that I noticed; my mom got to decide if I were to go to a GIST clinic where I would meet other people with similar diseases. When I got the mutational testing done, my mom was supposed to follow up with the genetics specialists to get the results, which I learned years later, she never did. She was also supposed to take my brothers to get tested, which she also didn’t do. It was important to get my test results because it could have opened a broader spectrum of treatments available to me, and it was important for my brothers to get tested because they have a 50% chance of having the same mutation as I do.
Even as a young adult over the age of 18, I still met some communication challenges between my doctors and me. They would always call my mom first with test results for the first year, even though I was supposed to have full control over my medical decisions. At age 20, my mom still got to make the final decision if I were to participate in a clinical trial on the mainland. Parents holding so much power over their child’s medical choices can cause confusion and a sense of insecurity for the child. Permission was not given for my mom to make medical decisions for me or get test results. It is also a HIPAA violation when a medical professional reaches out to anyone but the patient to get medical information without consent. Over the years, I have learned that it is not only me that has this issue but other AYA cancer patients all over the country.
If I were more involved in my medical care, I don’t think my anxiety level would be as bad as it is today, and it would be easier for me to communicate with HCPs on my own. When I go to doctor appointments or get tests done, I have a hard time advocating for myself because of the fear of not being heard or taken seriously. Symptoms are constantly getting dismissed or I am being told it’s in my head with no action being taken.
I now advocate for other AYA cancer and chronically ill patients to advocate for themselves and seek second opinions when they feel they are not heard. Just because an adolescent’s parent can legally make the decision for them, doesn’t mean the adolescent shouldn’t have a voice in the process. They shouldn’t feel like they aren’t being heard. Health care providers should advocate for parents to listen to their children when something is wrong.
I hope my personal experience has helped shed some light on communication issues between adolescents, parents, and health care professionals.