May 04, 2017 12:00 AM

Author: HI-AYA Patient Navigators


Matt Zachary, founder of Stupid Cancer, speaks at CancerCon.

From time to time, HCI invites guest commentary from our community. The views reflected in these commentaries are those of the author and do not necessarily represent the official views of HCI.

If you're an adolescent or young adult (AYA) with cancer, it's easy to feel alone. While the number of AYAs with cancer in the United States is not small—70,000 are diagnosed each year—it can feel like you're the only one your age going through this. You might sit down in the waiting room for treatment and no one looks like you. You might go to work or school and no one you know has ever had cancer. As Matt Zachary, the founder of Stupid Cancer, says, “This is the club you never asked to join.” Even though you didn't sign up, it helps to know there are others in this club who understand what you're going through.

The patient navigators for the Huntsman-Intermountain Adolescent and Young Adult (HI-AYA) Cancer Care Program recently attended CancerCon, the annual conference held by Stupid Cancer. CancerCon focuses entirely on AYAs with cancer and their loved ones. The weekend included informative sessions, speakers, and even social events for folks to get to know each other. Sessions covered a range of topics:

  • Coping with a cancer diagnosis
  • Preserving fertility
  • Working while in treatment
  • Navigating health insurance
  • Dating with cancer
  • Managing survivor guilt

There was so much information to absorb in just a few short days, but three main ideas have really stuck with the team as they return to work with AYAs in Utah.

There is no right way to have cancer. 

Everyone’s experience of cancer is unique. It’s easy to feel like you should do certain things, or feel a certain way, but there are no shoulds in this space. Christina Miller of the Ulman Cancer Fund stated that you are making your own path, you are finding your right way, you are doing the best you can. She shared this quote by Antonio Machado: "Traveler, there is no path. The path must be forged as you walk." 

Make space for the "and."

Cancer sucks. It can do awful things and no one should ever have to experience it. However, there may be things that result from cancer, like people you meet or perspectives you learn, that you never would have had without this diagnosis. Dr. Sage Bolte shared that it’s ok to have both. It’s ok to be furious that this is happening to you or someone you love and to be grateful for something that never would have happened without cancer. You can make space for the “and;” you can have both.

All visitors eventually leave.

The emotional reaction to having a cancer diagnosis can be incredibly complex. You might feel afraid, angry, sad, worried, grateful, and strong all at the same time. As Julie Larson, LCSW, discussed, you don’t have to shy away from the negative emotions. You can greet these feelings like visitors—don’t ignore or avoid them. Remember, all visitors eventually leave. Focus on finding a place or people to be with where you feel safe enough to experience and express these feelings.

Cancer in all ages is complex and challenging. Cancer for AYAs often has additional obstacles as patients try to navigate all of the transitions in this time of life: gaining independence, starting school, establishing a career, beginning a family. If you or someone you love has or had cancer between the ages of 15-39 years old and would like more information or additional resources on all of these facets of life, please reach out.

Contact the AYA patient navigators.


HI-AYA Patient Navigators

Huntsman Cancer Institute
aya@hci.utah.edu

cancer care HI-AYA aya cancer

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