Beat Cancer Discord Community: A Global Haven for Adolescents and Young Adults (AYAs) Living with and Beyond Cancer

Navigating the complexities of adulthood, adolescents and young adults (AYAs) living with and beyond cancer find themselves still adjusting to the journey of growing up when they are suddenly faced with profound challenges.

Many young cancer survivors undergo significant life changes as they have to deal with the side effects of the treatment, fatigue, and, more often than not, the loss of independence that they were just beginning to enjoy.

On top of this, they must navigate a system designed for adults that unfortunately does not address their unique needs and questions. All these challenges have more impact, given that cancer in adolescents and young adults is still considered rare.

This makes it incredibly difficult to find the right support, connections, and help. For many young cancer patients, challenges related to mental health, fertility, body image, relationships, careers, and education are common. These represent only a handful of the obstacles young individuals with cancer may face.

Many cancer survivors and patients often feel misunderstood by those who haven’t faced puberty cancer themselves, and while this sentiment is valid, it’s essential to recognize that understanding may be challenging for those who haven’t experienced it personally.

On a different note, having the chance to share ideas, feelings and experiences with those who truly “get it” can be uplifting, empowering, and motivating. Within a supportive community, there’s no need to explain or justify your experiences – those navigating similar journeys just inherently understand.

Whether seeking support during challenging moments or celebrating positive milestones, having a community of like-minded individuals offering peer support is incredibly helpful and absolutely necessary.

Peer support with EU-CAYAS-NET on Discord

For this reason, the Beat Cancer Discord Community was created.

A community dedicated to those affected by or working with the Children, Adolescents, and Young Adults (CAYAs) living with and beyond cancer, where members can support each other. The Discord community is a key part of the EU-CAYAS-NET project – the European Network of Youth Cancer Survivors, co-funded by the European Commission.

The vision is to create a thriving online community that connects Adolescents and Young Adults (AYA cancer population) affected by cancer all over the globe, as well as healthcare professionals, caregivers, and others taking care of patient. As of 2024, there are already members from 25 countries all over the globe, with many minority groups represented.

The community’s feedback has been remarkably positive. A lot of members had never engaged with another AYA patient or survivor before becoming part of the community. Many of them were previously unaware of the typical late complications faced especially by AYAs and the existence of practical solutions to navigate these issues.

Joining the Discord community not only provides valuable peer support but also offers a meaningful way to engage in patient advocacy. This initiative is overseen by some of the largest international non-governmental organisations (NGOs), non-profits, and patient advocacy organisations specialised in cancer care for Children, Adolescents, and Young Adults (CAYAs), with support from the European Commission.

Accessing BeatCancer.EU’s Community

Accessing and engaging with the Discord peer-support community is easy – visit beatcancer.eu/community to explore the experiences and thoughts shared by other adolescents and young adults, and engage in meaningful exchanges with like-minded peers.

Members can remain anonymous on the platform and are not required to use their real names.

For the best experience, it is recommended to download the Discord software directly from discord.com or through the app stores available on Apple or Android devices – it’s a free software used by many vastly different communities worldwide!

How to use Discord and our Discord Community’s special features

Through the utilisation of the software, the users have the opportunity to set up their profiles by specifying their origin and the role they assume within the community (whether as a patient/survivor, healthcare professional, researcher, caregiver, or other), along with additional information. Participation in this process is optional, but it is encouraged to complete it as it enhances their ability to connect with others on a more profound level and enhances their experience by utilising some of the distinctive features developed by our community.

Setting roles is quickly done by navigating to the channels #user-roles, and #country-roles on the Discord Community server.

Discord is divided into “servers”, where each server forms a separate “Community” within the Discord software. The server can be an analogy to a Facebook group, hosted centrally yet maintaining separation from individual members of the group.

Upon accessing Discord, all affiliated servers are displayed on the far left. To the right of the server list there is a compilation of “Channels”. These channels are exclusive to the Discord Community and are not shared with other communities. Nevertheless, some of the messages posted in these channels are visible to other community members and can be accessed through beatcancer.eu.

These channels are designated for different topics, including mental health, sexuality/fertility/dating, healthcare, and more. It is noteworthy that there is no need for concern about posting in the “wrong” channel. The primary emphasis is on ensuring that members feel comfortable sharing within the community. If uncertainty persists regarding where to share a message, contacting a moderator is an option, and they will gladly assist.

EU-CAYAS-NET’s peer-support bot – Botito

To improve peer support, we created a friendly peer-support bot, which the community decided to name Botito!

Botito allows the members to connect 1-on-1 with other community members based on their profile choices.

Using Botito is very easy. Access any channel on the Discord server, input /profile, and follow the steps to configure a profile. After completion, type /match to receive a list of matches most pertinent to the profile. It’s noteworthy that messages generated by these commands are visible exclusively to the user. In addition to the information in the profile, Botito considers the user’s role (patient/survivor, healthcare professional, researcher, caregiver, or other), the type of cancer experienced, and the user’s country for the most relevant match.

Once connected with a member, a new channel will appear in the channel list, typically at the bottom. This channel is visible only to the user and the match.

For further assistance, refer to the Botito guide provided, inquire in #peer-matching-support, or contact one of our moderators.

The Future of EU-CAYAS-NET’s Discord Community

The community has experienced rapid growth, and the future looks very bright. Nevertheless, an ongoing commitment to improvement is maintained through the efforts of a dedicated team working to ensure that the vision for the community becomes a reality.

Being part of our community, where you can share insights, experiences, feelings, thoughts, and input, is incredibly valuable, even if it may not seem that way at first. Peer support might sound unfamiliar, foreign, and complicated, but it’s really about mutual support through the exchange of experiences and insights.

Involvement in the community, including insights, experiences, feelings, thoughts, and input, holds significant value, even though it might not seem like it. Peer support might sound foreign and complicated, but peer support essentially involves supporting peers through the act of sharing. Regardless of an individual’s experiences, there’s always someone in the community who can understand their journey and learn important lessons from it.

Becoming part of the community allows members to contribute with their support to others and to find support when needed the most. Insights, experiences, feelings, and thoughts are needed, as well as the representation of people with cancer lived experience.

To join, follow this link: beatcancer.eu/community ❤️