The Support You Still Need: AYA Survivorship

April 2, 2018

AYAs, or Adolescents and Young Adults with Cancer, face a whole new set of fears after they’ve finished treatment. There’s the fear of recurrence and the more immediate, and possibly lifelong, health issues that may arise in the months and years following treatment. Some of these health issues include fatigue, sleep changes, cognitive problems (“chemo brain”), lymphedema (pain and swelling in the arms, legs, or trunk), and neuropathy (nerve damage). Other fears include resuming a “new normal,” going back to work, and dealing with the long-term financial ramifications of treatment.

The absence of treatment does not mean that AYAs are no longer in need of support. It should become a standard of cancer care for AYA survivors to receive continued social and emotional support, as well as distress screening, for the trauma that will undoubtedly accompany follow-up care. The National Cancer Institute advocates for a treatment summary and a survivorship care plan or follow-up care plan after treatment for AYAs. NCI asserts that the survivorship or follow-up care plan should include physical and psychological follow-up care for the AYA patient in accordance with the specific cancer they had and the treatment they received.

As an AYA who is four months out of treatment, I relate to feelings of inactivity following treatment. When you’re undergoing treatment, there’s the sense that you’re actively doing something every day to combat the cancer. When you’re out of treatment, the waiting game begins. I also relate to the perception that, if there are no physical symptoms – such as hair loss or weight loss – it may not seem as though you’re going through treatment. Read more about my journey here.

If AYAs are underserved during treatment, they are most certainly underserved following it. The Cancer Support Community (CSC) offers an integrated cancer distress screening tool called Cancer Support Source (CSS). CSS is a brief survey that will help people facing a cancer diagnosis identify the concerns that are most important to them so that they can reduce barriers to comprehensive treatment and improve access to care that is right for them.

CSC offers a wide array of resources for AYAs as they enter survivorship. MyLifeLine consists of cancer discussion boards, which are moderated by a licensed professional and available 24/7. Within this space, AYAs are able to connect with other cancer survivors their age. They are given a platform through which they can talk about “the sense of isolation, loss of control, [and] feelings of helplessness” that came with their cancer diagnosis and that continue to affect their day-to-day lives. With message boards spanning a variety of topics, AYA survivors are able to share their experiences, offer tips and advice, and provide or receive support from someone who understands what they’re going through. 

MyLifeLine also allows AYAs to create a personal webpage and update family and friends on how they’re doing. In addition to “My Updates,” MyLifeLine features “Learning Links,” where AYA survivors can learn about the specific cancer type they had. MyLifeLine also has a “Helping Calendar,” where AYAs can alert their family and friends when they have follow-up MRI or CT scan appointments coming up. Call CSC’s toll-free Cancer Support Helpline at 1-888-793-9355 or participate in a live web chat for free support and counseling for cancer patients and their loved ones.

The gravity of a cancer diagnosis can be overwhelming at any age. As a young adult, however, you’re faced with a unique set of challenges. The Cancer Support Community is dedicated to being there for you every step of the way, no matter where you are in the cancer care continuum. CSC offers support groups, educational sessions, and health and wellness programs at over 170 locations worldwide including 46 licensed affiliates and healthcare partnerships. Find a location near you to reach out and connect.