Frequently Asked Questions

FAQs to get you started
Welcome to Mucosal Melanoma Warriors. We are a group of patients and caregivers and we would like to help you find support and resources for your journey. Whether you are the patient, caregiver or family member, there is something here that can give you the tools to navigate the road ahead of you.

I have just been diagnosed with Mucosal Melanoma. Now what?”
Learning that you have been diagnosed with a very rare cancer is often difficult to process. It is challenging to find accurate current information about MM that can help you with the decisions that you need to make. Mucosal Melanoma is lacking in medical and scientific research. It may be difficult to find a medical doctor who has seen or treated this rare cancer, making it even harder for a patient to find a starting point for treatment. The Mucosal Melanoma community considers themselves WARRIORS because of the battle they are in to find treatment and answers about this cancer. This site has put together stories of patient journeys, resources for patient care and tools to help you navigate your way to the best outcome possible.

How Do I Start?
The most important step in beginning the journey is finding the right doctor and treatment facility. Because Mucosal Melanoma is so rare, many cancer doctors have never seen or treated it. Searching for a doctor who has knowledge and experience in treating Mucosal Melanoma can have a tremendous impact on patient survival. When possible, finding a cancer research hospital that has a Melanoma specialist with experience in this cancer is a good first step. This can be challenging and may sometimes require traveling to another city or state. Fortunately, there are resources to help in that area.

Mucosal Melanoma patients are beginning to generate a new level of conversation and awareness in the cancer community. Many cancer research centers and biopharmaceutical companies are including Mucosal Melanoma in their clinical research projects. This is a huge step in raising awareness. Browse through the RESOURCES to find ways to participate in new treatment options.

What Else Should I Know?
One of the most valuable tools that a Mucosal Melanoma patient needs is a journal/notebook. You may be seeing more than one doctor (aka “your care team”) and you will be having lots of medical tests performed. It is important to keep documentation of medical reports and conversations with your care team, as well as any symptoms/side effects. There will be times when your notes will help you keep track of next things. You can ask your caregiver or close family member to help you with this. When possible, this person can accompany you to appointments and be a second listener for details and instructions. This also allows you to just focus on being the patient.

Your First Steps
For best outcomes, you are going to have to be in charge of your cancer care. This may be uncomfortable for some people. Finding a way to empower yourself to ask questions and speak up when necessary is going to be very important. Because Mucosal Melanoma is a rare cancer, there is not much in the area of a “standard of care”. In many cases, doctors will be trying to find the most effective treatment for you which may be different for another patient. There is room for flexibility in treatment plans and your voice and feelings about these decisions have value. Become comfortable in asking questions and getting clarification with tests and results.

Starting The Journey
At a time in your life when you feel like you have no control, there are some things that you can do that will empower you and prepare you for your days ahead. A very important place to start is with your personal wellness. Your stress level and your diet and exercise need to be evaluated as you decide how you can best prepare yourself for the tests and treatments that you will be having. This might be a good place for someone who wants to support you to get involved. Setting a time to get together for walking or exercising can be a huge boost of endorphins that will improve your outlook and mood. You may begin to hear about all kinds of “cancer cures” and feel like you want to try anything to make the cancer go away. Before you invest (or waste) money on any product, ask yourself – if this product was able to do what it claims, wouldn’t everybody be using it already? There are lots of theories and beliefs about what will or won’t fix cancer, However, the best plan should be to get your body in the healthiest condition possible so that your treatments will have a good environment to do their job. Your oncologist may advise you to do things that relate to other medical conditions you might have that may help your treatment be more effective.

What Do I Say To Other People?
You may or may not be comfortable talking to others about your cancer. It is very personal and, in the cases of vulvar/ vaginal or anorectal cancer, very awkward to talk about. There may be reasons why certain people close to you should not be told, but for the most part, having a close circle of family or friends to support your journey can have tremendous value. Having help with transportation, childcare or spiritual support are gifts that others will want to do for you. If you decide to let others know that you have cancer, remember that you do not have to share specific details. A general statement that you have been diagnosed with a rare cancer and will be getting treatment should be enough. You will have to decide what is best for you and your family when letting others have information about your diagnosis.

How do I connect with others who have Mucosal Melanoma?
The rarity of Mucosal Melanoma can make you feel very alone. Currently, social media has become an effective way of finding others who share your diagnosis. Finding other people who understand what you are facing can connect you to information, support and news about new treatment options becoming available. You can find links to connecting in RESOURCES.