It is important that adolescents and young adults with cancer reach out and seek support when they need it.
As a 27-year-old, my sister was considered an adolescent/young adult (AYA) patient. Upon her diagnosis, she joined the nearly 70,000 AYA patients to be diagnosed in the US yearly. Nobody expects to find themselves living the life of a cancer patient, let alone somebody so young. And of the people in her life, she was the only one to have cancer at the time. So regardless of her being a part of such a large group of people, she couldn't have felt any more alone than she did.
When she was diagnosed with stage 4 cancer, we were given literature on support groups, outreach specialists and peer-to-peer 1-800 numbers that she could call. The American Cancer Society and Leukemia and Lymphoma Society both offered online chat rooms to help those struggling, while utilizing the power of technology to help cancer patients connect. None of those things mattered to her. She still felt like she was the only 27-year-old going through cancer.
As her sister, I was completely perplexed by her reaction to most things during cancer. For the most part, I tried diligently to rationalize every choice that she made. After all, I was not the one with cancer, so of course I did not know what it was that she was going through. Seeking support was not something that I could rationalize. How was it that somebody who said she felt alone and isolated could be so resistant to the offer of help?
Roughly five months into her battle, I began to work with Leukemia and Lymphoma Society and volunteer with their peer-to-peer program. This program sought volunteers going through something similar and matched them. It was an organized support system of sorts that enabled both parties to gain information, relate and share their personal stories.
It was through this program that I came to understand that she wasn't alone in not seeking support. It is incredibly normal that the youngest of cancer patients and those affected by cancer to not seek support. Adolescence is in no way easy, and when add cancer into that mix, it adds a layer of complexity that doesn't make it any easier.
Most AYA patients are diagnosed at a time when major milestones are occurring in life. That can be heading off to college or graduating, engagements, weddings and even welcoming children into the world. This can make cancer difficult for those experiencing those milestones and for those watching them happen.
My sister fixated on all that she had not done in life. She was missing out on and all that others were experiencing. She worried that at 27, her life had yet to begin and that nobody would understand how she felt. So, like so many others her age, she made the choice to suffer in silence. This is a commonly practiced concept for AYA patients and sadly it only helps to perpetuate the cycle of isolation that so many of them feel.
Watching my sister struggle through cancer was no easy task. It is only now, two years post-cancer, that my sister has begun to seek support. I know that evidence suggests that those who seek and receive support during cancer do better to adjusting to life post-cancer.
I think movies and books like “The Fault in our Stars” have done wonders to put a face to the need for these groups. And the aforementioned charities adapting to modern times and offering online chats has helped, too. It is an alternative to those both too sick to attend weekly groups and for those like my sister who are too self-conscience to meet in person. In the end, no matter what format the support comes- the need for the AYA populous effected by cancer is incredibly important.