Although there are other kinds of skin cancer, melanoma is the big one. It’s the most aggressive and most likely to spread. And it can hide in plain site. For example in the form of a mole you’ve had a while and aren’t paying attention to. Suddenly you realize it has changed shape or is bleeding more often. And then you find out it’s melanoma.
However you were diagnosed, you know you need treatment. And the first line of treatment for melanoma is generally surgery to remove it. Your doctor may biopsy it first, to find out the stage and how deep it is. Or your surgeon may simply remove the whole thing, along with some healthy skin around it, and send it off for testing.
Even if you’re feeling rushed to get your surgery scheduled, you’ll want to learn more about this cancer, your treatment options and what you may need to do after surgery.
There’s a lot of information on this relatively common cancer, and the amount can make your head spin. So we’ve put together a list of quality resources in several categories (overviews, support groups, research and more) to help you get started without feeling like you’re drowning.
Of course, you’ll want to talk with your doctor about anything new you learn. That way you can feel more confident that you’re making the right decisions about your health.
Melanoma Overviews
Overviews are a good place to start understanding your diagnosis. They usually give enough information to be useful without giving so much detail you get confused. Here are a few good ones:
Melanoma (MedlinePlus): MedlinePlus offers some of the simplest overviews, and they are a great place to start if you’re very new to the topic. You’ll find a couple of pictures to help you recognize melanoma and a few links to more information. There’s also another overview on melanoma of the eye, if that’s where you have it.
Melanoma (Mayo Clinic): The Mayo Clinic’s guides offer easy-to-understand information on everything from recognizing melanoma to treatment and keeping it from coming back. The site also offers a few in-depth articles on related topics like what to expect during a biopsy or a chemotherapy treatment.
What You Need To Know About™ Melanoma and Other Skin Cancers: This guide is from the National Cancer Institute and covers the three most common kinds of skin cancer.
Melanoma (Macmillan Cancer Support): The Melanoma section of the Macmillan Cancer Support website is divided into sections on diagnosis, treatment, and additional resources, along with sections on advanced melanoma and recurrent melanoma (cancer that came back).
Organizations Devoted to Melanoma
These organizations exist to advocate for melanoma patients, increase awareness of the disease and/or provide other resources to patients and their loved ones.
Melanoma Research Foundation: This foundation supports research into finding better treatments and a cure. It also offers a wealth of information on understanding melanoma and finding support.
Skin Cancer Foundation: Technically, this foundation is devoted to all types of skin cancer. Its mission includes education for both individuals and doctors on prevention, early detection and treatment. It also offers a physician search function, so you can find a doctor near you.
Melanoma International Foundation: MIF was founded by a melanoma survivor who wanted to help others find the information and support she couldn’t find during her fight. Check out the Web Resources section for links to global resources, cancer centers and more. It also has a video showing you how to examine your skin for signs of melanoma.
AIM at Melanoma Foundation: This foundation provides a lot of educational material on its website. It also supports research and lobbies for safety measures like better regulation of tanning salons and sun safety education for kids.
Ocular Melanoma Foundation (OMF): This foundation was founded by an eye surgeon who was also an ocular melanoma (melanoma of the eye) patient. It offers a lot of online information and other patient resources, plus support groups and listservs. It also offers annual patient retreats and various fundraisers. You may also like to follow its Facebook page.
Melanoma Research and Clinical Trials
There are hundreds of ongoing studies trying to better understand melanoma and evaluate new treatments. Depending on your situation and prognosis, you might like to take part in one.
Some trials are open to anyone with melanoma. Others are restricted to certain groups or people at a specific stage in the disease. Your doctor can help you decide if a trial is right for you and which ones you may qualify for.
But you can also do your own research. These sites list many of the currently open trials:
ClinicalTrials.gov melanoma trials: You can also modify this list to narrow it down by location, age group and more. This list is for a search of the term “melanoma.”
If you have ocular melanoma, these searches provide shorter lists and may be more appropriate for you:
Melanoma Clinical Trials: This list, from CenterWatch, is a state-by-state list of industry-sponsored trials that are looking for volunteers.
National Cancer Institute Clinical Trials Search: This search form asks a lot of questions right up front to try to narrow your search just to trials suitable to you. But if you’re not sure how to answer them, it’s okay to skip them. They’re optional.
Forums and Support Groups About Melanoma
Connecting with other people who are going through the same thing as you can help you feel less alone. And you’re not alone: More than 60,000 people get a melanoma diagnosis each year. And it’s the most common kind of cancer in young adults in their late 20s.
Of course friends and family are a great source of support. But unless they’ve been through it, they don’t always understand how you’re feeling. Here are a few places to find people who do understand.
Melanoma Patients Information Page: This resource is from the Melanoma Research Foundation. It offers four forums for patients and caregivers to connect with others going through the same thing. The main forum appears quite active, while the one for eye melanoma is somewhat less so (but ocular melanoma is also less common).
Melanoma Discussions on Cancer Compass: This message board appears reasonably active. There were several posts within the previous 24 hours when we visited, and several more within the previous week. It looks like activity comes in waves, with several quiet days followed by a bunch of posts.
OMF Patient Forum: The Ocular Melanoma Foundation’s patient forum is completely private and requires registration just to view it. We can’t verify how active it is, but according to OMF if has more than 2,000 registered members.
Other Resources for Melanoma
If you haven’t yet been diagnosed but you’re worried about your risk or whether you need a mole checked out, these sites can help. But remember, if you’re at all unsure, it’s best to be safe and have it checked out.
Common Moles, Dysplastic Nevi, and Risk of Melanoma: This page, also from the NCI, has lots of pictures of various skin “spots” that could turn into melanoma or raise your risk of this skin cancer.
Your Melanoma Risk: This tool from Siteman Cancer Center helps you evaluate your risk of getting this cancer. It’s somewhat limited, but it can help put your mind at ease that you’re doing what you can to minimize your risk … or provide the push you might need to protect yourself better.
Information for Kids About Melanoma
Kids can get melanoma too. And they’ll be affected by your diagnosis, even if you try to protect them. These resources offer information and games (for younger kids) to help them understand the disease and how to protect themselves.
TeensHealth, Melanoma: This article from Nemours is aimed at teens.
SunGuard Man Online: This site is from the Maryland Skin Cancer Prevention Program. There’s games, activities and a series of videos to make learning fun.
SunWise: This site from the Environmental Protection Agency offers resources for educators to help them teach kids about sun safety. But many of the resources are available to anyone. There’s also a section of the site geared specifically for kids, called SunWise Kids, with activities and information in language kids can understand.
Although these sites are generally aimed at helping kids & teen avoid melanoma in themselves, they can also help them understand your diagnosis and what you’re going through.
If you’re looking for the right words to talk with your kids about your diagnosis, we have some more resources listed on our Cancer Resources for Children page.
Caregiver Resources
Patients aren’t the only ones who need support and understanding. So do their caregivers. Your struggles with watching someone you love fight a disease is not less important than theirs. Just different.
The Melanoma Research Foundation has published a Caregiver Support Guide (PDF) specifically for people caring for a loved one with melanoma. It gives you information about the disease, ways to help your loved one and how to take care of yourself.
Many of the support resources for melanoma patients also include information and support for their caregivers. Although the caregiver forums are generally less active than the patient forums, the Melanoma International Foundation’s For Caregivers Only forum was reasonably active when we visited.
You can also find more resources for caregivers of cancer patients (not necessarily melanoma) on our Cancer Caregiver Resources page.