05/21/2013 05:46 pm ET Updated Jul 21, 2013

Medical No Man's Land: A 20-year-old Cancer Patient

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Nobody ever really expects to be diagnosed with cancer, but as a 20-year-old college student, I definitely wasn't prepared. As the clutches of the disease wrapped around my life and I began to fully realize the harsh realities of chemotherapy, my grip on what my future was supposed to look like began to slip through my hands. Within hours of finding out that I had leukemia, I was packing up all my things, moving back into my high school home, and relinquishing many of the semblances of independence I had built up for myself over the past two years. It felt like a major step backwards.

At the beginning, all of my oncologists were the results of referrals from ER doctors and random physicians I ended up at. It kind of felt like I wasn't given much of a choice in who would be managing my treatment, and there were never any second opinions offered. It was all very sudden and seemed carry the tone of "don't question it, just go with it." At the time, I was so shell-shocked that I did just that... for the first three months, I trudged along with an insanely busy doctor and an adult oncology clinic run by the grouchiest bunch of nurses I had ever met. I sat in crowded infusion suites of beige and blue for hours on end with fellow patients in their sixties and seventies, wondering what on earth I was doing in a place like this at age twenty. There were many times I thought that surely even the DMV would have been a more pleasant place to spend the entire day.

Since I was young, my oncologist concluded that we would see better results with a pediatric style of medication. He consulted with pediatric oncologists at the hospital, but still, he seemed to be possessive of my case. He was largely unable to answer my questions about fertility, long-term effects of neuropathy, or give me any real answers about when I could feasibly return to school... it was becoming obvious to me that while he was a perfectly capable doctor, he was not the physician I was desperately needing at the time. He was better suited to my elderly counterparts in the waiting room.

When we decided to have the awkward but necessary conversation that we wanted to switch over to the hospital's pediatric oncology unit, there was a myriad of mixed messages. Most of the adult unit health team discouraged me from considering it, insisting that I would be treated like a child who wouldn't be able to make decisions for herself. They told me I would be surrounded by babies and toddlers and would feel out of place. Of course, I understood their intentions were to spare me from any further perplexity, but I had to quietly chuckle to myself at how I was many decades closer in age to a two year-old than a seventy year-old. Eventually I completely switched over to the pediatric unit, and instantly things started getting better.

Part of the reason is the sad truth that many adult oncology units are underfunded, and thus understaffed, when compared to pediatric units. It is shocking to see the drastic difference between the information and services available to the two sets of patients (at my hospital, anyways). For instance, my pediatric clinic offers the services of an art therapist, a child life specialist, and a free, on-call psychologist for patients and their families. The adult clinic I started out with barely offers a social worker, and you have to ask to set up a special meeting with one, which carries its own expense, too. I'm not saying that every adult cancer patient needs art therapy, but spending upwards of six hours in an infusion suite every day with nothing but Judge Judy reruns on can do just about anybody in. The need for some kind of patient interaction or group therapy is certainly noticeable... just some kind of hope that a life outside of disease and hospital waiting rooms does exist.

The difficulty is that young adults with cancer find themselves in a medical no man's land... "too old" to immediately consider a pediatric clinic, and "too young" to be accurately assisted by many adult clinics. With issues like fertility preservation, entering the job market for the first time, and the desire to continue college, young adults have very different and specific needs than cannot be addressed by adult-only or pediatric-only clinics. Seattle Children's hospital is starting the movement of oncology care specifically targeted for young adults, but there still remains a vastly underdeveloped and underserved population.

My advice to newly diagnosed cancer patients under the age of about twenty-five, maybe even thirty, is to consider all of your options, even the pediatric units and doctors. Research is finding that young adults often respond with better survival rates and lower relapse rates when they are treated using pediatric protocols. Pediatric oncologists also (at least in my experience) seem to be more acutely aware of the fact that there are long-term effects of chemotherapy that must be considered. My pediatric oncologist has been a lifesaver and huge relief to my anxieties related to issues about fertility, mobility, and nerve damage. If there's ever been a concern that my chemotherapies have negatively impacted my quality of life, he has never hesitated in addressing those issues head on. And honestly, that's what any oncologist should do, no matter how many patients they have slotted for that day.

I guess that's what my main point is here... no matter what end of the oncology spectrum you find yourself on, it is critical that you feel comfortable and like you're getting the best possible care for you. That might not be a pediatric unit for every incoming twentysomething with cancer, but for me, it made all the difference in the world. Second opinions matter, and when it comes to your comfort, care, and health, no one should make you feel like you're being rushed when you have questions. Take control of your care, and things will start shaping up. Although we are still waiting for the field of young adult oncology to fully develop, young adult patients are not without options.