Teen Cancer America would like to recognize March 31st through April 6th as Adolescent and Young Adult (AYA) Cancer Awareness Week. We have been joined by organizations across the United States who are supporting their AYAs by spreading awareness and offering support.
AYA Cancer Awareness Week focuses on 15 – 39 year olds who are affected by cancer. This week we’ll be discussing the barriers that this age group with cancer faces and what needs to change within the healthcare community in order to better treat our young people. AYAs are our future. We have an obligation to provide them with the best access and high-level of care in age appropriate settings, with targeted treatments, and support delivered by staff who are experienced in working with young people.
Let’s Talk About Isolation
Imagine being in your early 20’s; maybe you’re still in college or have just started your career and/or family. Then you’re given a diagnosis that turns your world upside down and takes you away from the everyday life you know. Not only can this be a traumatic experience for anyone diagnosed, but it can also be isolating to leave your family and friends for a hospital and treatment.
Then the treatment experience in and out of the hospital can be even more isolating, as the average age in a pediatric hospital is 6 and the average age in an adult hospital is 60. AYA’s can find themselves alone with no one their own age to connect with. Patients treated outpatient face isolation at home based on their weekend immune system. Generally, the #1 psychosocial issue for young adults is social isolation. Let’s raise awareness through connection and make sure that all AYAs know that there is an entire community out there for them.
Let’s Talk About the Money
New research suggests that young adult cancer survivors are at a higher risk for debt and work-related physical and mental impairment after their treatment. For many survivors, getting cancer treatment has been a matter of “life and debt”. More than 42% of the 9.5 million people diagnosed with cancer between 2000 and 2012 said they depleted their entire life’s assets in two years, according to an American Journal of Medicine study published last year. Organizations like the Samfund have awarded grants for AYAs in order to help alleviate some of this burden.
Let’s Talk About Fertility
For many AYA’s they haven’t reached the point in life where they are considering family planning. Being forced to face the prospect of infertility because of cancer treatment at such a young age is a frightening and emotional experience. Many hospitals lack resources or experienced professionals to have these conversations at the time of diagnosis so young people aren’t being educated on what could be.
The costs of preserving fertility are also outrageousbecause insurance companies in most states are not required to cover this aspect of treatment. These is support out there so make sure to get fully educated on what could and could not be and what it means for other aspects of relationships, sex, and fertility for young people after and during cancer treatment.
Let’s Talk About Low Enrollment in Clinical Trials
AYAs, age 15 – 39, get very aggressive and rare cancers and are 7x more likely to be diagnosed with cancer than anyone under the age of 15 according to the NCI’s SEER data. Although the statistics would point to this age group needing more research and clinical trial access, this demographic is still the lowest in enrollment. There is a major gap in the access to drugs and innovation between AYAs. An 18-year-old lower age limit for adult trials is causing the greatest barrier. There is also a significant delay in the opening of trials for some cancers that affect adolescents, with little improvement in outcomes observed over the last decade. Greater efforts are necessary to improve clinical research for AYAs with cancer.
Let’s Talk About Survivorship
Cancer that affect young people can be debilitating with long term effects that can cause significant health problems throughout their lives. In addition, the psychological effects of cancer at such a young age can cause depression and other psychological challenges that often go unrecognized. Young survivors need long term support, regular screening for known late effects, and emotional support. Make sure that you know what resources are available to you at the time of diagnosis, during treatment, and into survivorship. For more information on resources, click here.
Let’s Talk About Prevention and Screening
While we still don’t know why young people get many of the cancers that affect them, there are some that are preventable. The HPV vaccine prevents ovarian cancers and research suggests that it will also prevent genital, oral, and throat cancers. Many skin cancers can be prevented by sun protection and sun bed regulation. A healthy diet and exercise are also increasingly recognized as important factors in cancer prevention.
Screening programs for cancers such as breast and colon can detect cancer and precancerous conditions. Young people who have had cancer may need earlier and more frequent screening for secondary cancers and other health risks such as heart disease. If you have a question or a concern make it a priority to have yourself checked out!
You can be a part of the change for AYAs with cancer. Download the AYA Awareness Week assets and share them on social media. If you’re on a desktop computer, right-click and “save image as” in order to use the photos. If you would like to download the images to your mobile phone, press and hold down on the image and a “download image” window will pop up for you to save the images.
To hear more stories about Teens and Young Adults, please read on here!