YA = Young Adults
YAC = Young Adult Cancer; defined for the purposes of this blog post as people who live with/go through/are diagnosed with cancer between the ages of 18-40.
Cancer is the 3rd leading cause of death in those aged 20-35 and over 70,000 YA’s are diagnosed each year in the US. That is eight times more per year than pediatric aged patients. Children and older adults with cancer are living longer than ever while survival rates for the 25-35yr old haven’t changed since 1975. In some YA cancer groups [such as in certain lymphomas] the survival rates have actually decreased! Why is this?
Several theories abound including more aggressive forms of cancers, treatments that aren’t geared toward this age group [too aggressive or not aggressive enough], diagnosis at a later stage because of lack of insurance or initial misdiagnosis because of age [“you are only __yrs you can’t have cancer!”], lack of support… Most YA’s with cancer find there is a gap in psychosocial and emotional support to address their specific needs and concerns [dating, raising young kids, newlyweds, infertility, careers, friends who don’t understand severe illness, gaps in insurance coverage, moving back in with parents again].
As a YA, you go to the doctor’s office or hospital you find yourself surrounded by children and animals painted on the walls or people your grandparent’s age. You immediately feel out of place. Support groups in your area can feel the same way or are only offered during the daytime while you are trying to work or can’t get a ride because your friends are working. You feel you are the only one your age with this problem and you want and need to talk about your “special” issues with someone who understands. Many patients can also feel isolated even within their family and/or friend groups because of the unique psychosocial and emotional challenges a cancer diagnosis can introduce. You truly feel like no one can understand your point of view.
I know after I was diagnosed I became an internet researching fool. It was literally the only thing I could focus on for weeks. I also bought up any and every book geared toward the YAC population that I could find as well as a few others geared toward my particular cancer. Most books and sites led me to new resources to check out and I now have a core list that I turn to when I need to seek out my peers in this journey.
Here are my absolute favorite resources for YAC patients:
Crazy Sexy Cancer Tips & Crazy Sexy Cancer Survivor – book & workbook that are written in an upbeat and hilarious tone, you can relate and are engaged. Kris Carr, the author and YA with cancer herself, also has a movie of the same title as well as a blog and website. There is a portion of the website similar to MySpace and you can connect with other YA’s with cancer.
Everything Changes – a book and blog by Kairol Rosenthal, a YA thyroid cancer patient, delves into the realities of the issues those specifically in their 20’s and 30’s go through when they have a cancer diagnosis. Kairol is also a co-host on the Stupid Cancer Show which airs every Monday at 9pm.
The Stupid Cancer Show – a radio broadcast devoted specifically to advocacy for the YAC population. Hosted by Matthew Zachary and Kairol Rosenthal and sponsored by the iy organization.
iy – I’m Too Young For This website/organization and absolute wealth of information for YAC.
Planet Cancer – social networking site for YA’s [think MySpace for cancer patients and caregivers]