Connecting with the Melanoma Community

Join the Melanoma Community

Finding a group – or a person – that has firsthand knowledge of what it’s like to be diagnosed with and treated for melanoma can be very helpful. For many people, friends and family are the foundation of your support team, but sometimes, it can be easier to talk openly about your experiences, hopes, and fears with others who know what it is like to be in a similar position. Whether specific to melanoma, or cancer broadly, tapping into a supportive community can help you throughout your own melanoma journey.

Why should I talk to other melanoma patients and survivors?

When you are facing a life changing melanoma diagnosis, nothing can replace the power of connecting with someone else who is facing – or has faced – a similar situation. While no two melanoma patient stories are the same, other melanoma survivors share common experiences that someone without cancer cannot fully imagine. 

You may find that it is easier to ‘let your hair down’ to vent, share your fears, and commiserate with a new friend who is going through the same. Some people find being vulnerable with someone who isn’t as close to you can actually be easier. In any case, speaking to someone who has been or is going through a similar situation may ease your stress or anxiety. Being diagnosed with melanoma can feel alienating, but by connecting with others, you can cultivate a sense of belonging and a greater understanding of the journey ahead. 

There are many powerful (and practical) benefits to participating in a structured group with other patients and survivors. Benefits such as: sharing your experience with people who understand and receiving professional emotional support from a group leader. Keep in mind that this may not be for you, but don’t rule it out entirely until you’ve tried it!

How can I find people to connect with?

Finding other people who have survived - or are surviving - melanoma may not always be easy. Your doctor may be able to help you locate other people or groups in your area. Many cancer centers also have support groups that meet regularly. In addition, there are numerous online programs such as MRA’s Melanoma > Exchange community or the Imerman Angels one-on-one match service.

What if I have a rare melanoma?

People facing acral, mucosal, uveal, or pediatric melanoma often feel isolated and alone because of their diagnosis. Because of this, finding other people who are also managing a rare melanoma subtype can be particularly important. Due to the relative rarity of these diagnoses, the role of online support groups, such as the Melanoma > Exchange, may be especially important. 

Should I look for an in-person community or one online?

It depends on what you are looking for and what is available in your area. Each type of community, either in-person or online, have strengths in various areas. 

In-Person Groups: Sometimes, and for some people, nothing beats an in-person interaction with someone in your community who knows what you are going through. In-person groups may also be housed at the same place that you receive your care – allowing you to build a community among people who share the same medical providers. Creating relationships with people in your community also means that you can integrate your new community into your routine – by grabbing coffee, going for a walk, or other activities. 

Online Groups: Groups, such as MRA’s Melanoma > Exchange, offer opportunities to engage with others 24/7. You also have the option to share as little or as much as you’d like – including ‘just visiting’ without signing up at all. Online groups also offer you a potential treasure trove of information in the form past discussion topics, allowing you to learn from the experiences of others potentially years after a specific discussion topic was started. Due to the power of the internet, you may also be able to meet and interact with people who are very similar to you – in terms of age, melanoma subtype, or even by specific genetic mutation. 

Many people newly diagnosed with melanoma often need to try both an in-person support group at their local treatment center and an online community. It is perfectly fine to do both – and figure out which one meets your needs. And don’t forget that your needs will change over time – from when you are first diagnosed, to when you are well into your treatment plan. 

Were you or a loved one just diagnosed with melanoma? We have the resources to help.