Melanoma Patient Guide A guide for people diagnosed with cutaneous melanoma (melanoma of the skin)
Stages 0-1
Stages 2-3
Stages 3-4
Just diagnosed with cutaneous melanoma stage 0 or 1? If you’ve just found out that you or a loved one have cutaneous melanoma, it can be a shock. But you are not alone – 1.4 million Americans are living with melanoma 1 . The good news is that most melanoma is curable if diagnosed and treated early. In fact, for melanoma stages 0-1, the survival rate of 5 years or more after diagnosis is more than 99% 2 .
In this guide, we will use the word
What to do next? First, take a breath, stay calm, and keep reading. Once you feel ready, it might help you to learn more about melanoma. This guide will cover melanoma stages 0 and 1 that can be removed by surgery (called resectable ).
“melanoma” to refer to cutaneous melanoma, which means melanoma of the skin. Words in dark blue are defined in the glossary on page 18.
In this guide, you will learn: What is cutaneous melanoma?.................................................... 2 How can doctors tell if I have melanoma? ................................ 4 What stage is my melanoma? ..................................................... 5 Learn about stage 0 melanoma................................................... 7 Learn about stage 1 melanoma................................................... 8 Questions to ask your doctor........................................................9 Finding support............................................................................ 10 Chances of melanoma coming back (recurrence)................... 12 Preventing melanoma from coming back.................................12 Resources...................................................................................... 17 Glossary......................................................................................... 18
After learning all of this, you may even help prevent someone you love from getting a melanoma diagnosis!
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What is cutaneous melanoma? Cutaneous melanoma is a type of cancer that usually starts in a person’s skin. Melanoma happens when a cell called a “melanocyte cell” is damaged. Here is how this happens:
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3
2
Melanocytes are the cells in our skin that carry melanin, which is what gives our skin color, or pigment.
When these cells are damaged, they can mutate (change) from a melanocyte to a melanoma.
This causes them to grow and replicate into new melanoma cells, causing cancer.
melanocyte cell
melanoma
How many people get melanoma each year? Experts estimate that 200,340 Americans will be diagnosed with melanoma at these stages in 2024 2 : • Stage 0: 99,700 Americans • Stages I, II, III or IV (stages 1-4): 100,640 Americans (59,170 males and 41,470 females)
Melanoma most often happens in the skin. But it can also happen in other places: • In the eye – called ocular or uveal melanoma • In mucous membranes such as the mouth, sinus cavity, genitals, or digestive tract – called mucosal melanoma • Under fingernails or toenails, or on the palms of hands or the bottom of the feet – called acral or subungual melanoma Melanoma is the most serious type of skin cancer. But with cutaneous melanoma, if found early, it can usually be cured by surgery. If melanoma is not found and treated early, it can spread to lymph nodes and organs in the body. If this happens, it can be life-threatening. That’s why it’s so important to check your own skin for new or changing moles or other spots every month!
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How can doctors tell if I have melanoma? To find out if you have melanoma, your doctor may refer you to a dermatologist (skin doctor) to check your skin thoroughly.
What stage is my melanoma? If you are diagnosed with melanoma, your doctor will do a process called staging . Staging is a way doctors describe the cancer and where it is in your body. It also helps doctors figure out the best way to treat the cancer. Your doctor may need to do more tests when they are staging your melanoma. Staging can be very complex and confusing. Ask questions about anything you don’t understand! Checking your lymph nodes Your doctor may want to check if the cancer has spread to nearby lymph nodes. They may offer a sentinel lymph node biopsy if the melanoma is thicker than 0.8 mm and/or ulcerated. This is a biopsy of the lymph node that the cancer is most likely to spread to first. Having this small surgery will help you and your doctor know more about your cancer, its stage, and what treatment might be right. The TNM system Doctors use a staging system called TNM , where they consider 3 factors to stage cancer:
An exam: Your doctor will ask you questions about the mole or concerning area of skin, such as, “How long have you had it?” and “What changes have you noticed?” Your doctor will look closely at the concerning area and check the rest of your skin for any changes. How is melanoma diagnosed?
A biopsy: If your doctor finds a suspicious area, they will take a sample of your skin so it can be looked at under a microscope. There are 3 types of skin biopsies:
In a shave biopsy , your doctor will remove a sample from the top layer of your skin with a small surgical blade. They do this if the mole or area appears to be only on the top layer of your skin. In a punch biopsy , your doctor will press a special tool with a round blade into your skin to remove the entire spot. They do this if the mole or area appears to be in deeper layers of skin.
If you have a mole or area of skin you are concerned about, see a dermatologist.
T Tumor thickness , which means how deep the cancer has grown into the skin in millimeters, also known as the Clark level . This may also include if the tumor is ulcerated (broken skin), which means if there are cells in the center of the tumor that are dying and peeling away. This can be a sign that the tumor is growing quickly. N Nearby lymph nodes , which means if the cancer has spread nearby through small tubes or lymph nodes. M Metastasis , which means if the cancer has spread to distant parts of the body such as another organ or lymph nodes far from the primary tumor location.
The Clark level measures how deeply the melanoma has grown into your skin. It uses roman numerals, just like staging does, but these are different. It is important not to mistake the Clark level number for the stage of melanoma.
In an excision biopsy , your doctor will use a surgical blade to remove an oval-shaped piece of skin. This removes the whole concerning area as well as a border of normal skin, called a margin. They do this if they think the mole or area is suspicious for melanoma.
Sending the sample to a lab: The biopsy sample is then sent to a lab where a trained doctor (a pathologist or dermatopathologist ) will look at it under a microscope to see if it is melanoma.
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Based on this information, doctors give the cancer an overall stage. There are 5 stages of melanoma, with some of the stages split into sub-groups:
Learn about stage 0 melanoma
What is stage 0 melanoma? In stage 0, cancer is in the thin outer layer of the skin ( epidermis ). It has not spread to the next layer of skin ( dermis ) or to other parts of the body. The good news is: Stage 0 melanoma is highly curable, and has a very low chance of spreading or coming back. How is stage 0 melanoma treated? Doctors treat stage 0 melanoma with surgery to remove the cancer. Usually this is a procedure called a wide local excision . This is when a larger oval-shaped piece of tissue is removed from the skin to remove any cancer cells left after the biopsy. Stage 0 melanoma is highly curable – as long as the doctors are sure they removed enough surrounding skin, this is all the treatment you will typically need.
Stage
What it means
Stage 0
Called “ in-situ .” Cancerous cells are present, but they are in the first layer of skin, called the epidermis, and have not spread to other parts of the body.
Stage 1: 1A and 1B Stage 2: 2A, 2B, and 2C Cancer cells are now deep enough to reach the second layer of skin, called the dermis, but have not spread to other parts of the body. In stage 2, the depth of the tumor is deeper and/or there is some ulceration in the tumor. Stage 3: 3A, 3B, 3C, and 3D The cancer has spread to local (nearby) lymph nodes . Stage 4 The cancer has spread to distant lymph nodes or other parts of the body. This is called metastasis .
What is the follow-up care for stage 0 melanoma? With Stage 0 melanoma, your outlook is usually very good! It is unlikely that the cancer will return or spread to other parts of your body.
The higher the number and the letter, the larger the tumor and the more it has spread to nearby tissue. So, stage 1 and stage A cancers have spread less than stages 2-4 or B-D cancers. Stages use roman numerals like this:
After treatment, doctors recommend that you: • Do monthly self skin checks • Follow your dermatologist’s or surgeon’s recommendation for how often you should get a full body skin exam - usually this will be once a year • Use sunscreen that is SPF 30 or higher and broad spectrum – apply it 15 minutes before going outside, and reapply every 2 hours and after sweating or swimming • Wear clothes to protect your skin – wear long sleeved shirts, pants, wide-brimmed hat, and sunglasses • Seek shade when the sun is strongest , between 10am and 4pm
• Stage 1 = Stage I • Stage 2 = Stage II • Stage 3 = Stage III • Stage 4 = Stage IV
melanoma
epidermis
dermis
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What is the follow-up care for stage 1 melanoma? Outlook with stage 1 melanoma is usually very good! You are at low risk for the cancer returning or spreading to other parts of your body. After treatment, doctors recommend you:
Learn about stage 1 melanoma (1A and 1B)
What is stage 1 melanoma? In stage 1, cancer has grown below the epidermis into the dermis , but has not spread to nearby lymph nodes or distant sites. This means that with treatment, your melanoma is not likely to come back.
• Do monthly self skin checks • See a dermatologist once a year
• Use sunscreen that is SPF 30 or higher and broad spectrum – apply it 15 minutes before going outside, and reapply every 2 hours and after sweating or swimming • Wear clothes to protect your skin – wear long sleeved shirts, pants, wide-brimmed hat, and sunglasses • Seek shade when the sun is strongest, between 10am and 4pm
Stage 1 is divided into 2 subgroups:
Subgroup 1A: The tumor is 1mm (millimeter) thick or less, with or without ulceration (broken skin)
Subgroup 1B: The tumor is either: • Less than 1mm thick and ulcerated , OR • 1 - 2mm thick and not ulcerated
Questions to ask your doctor • Do you have a lot of experience diagnosing melanoma? • What type of follow-up care will I need? • What are the chances of my melanoma coming back? • How can I prevent melanoma from coming back? • What should I do if the melanoma comes back? • What other doctors should also be involved in my care?
How is stage 1 melanoma treated? Doctors treat stage 1 melanoma with surgery to remove the cancer. Usually this is a procedure called a wide local excision . This is when a larger oval-shaped piece of tissue is removed from the skin to remove any cancer cells left after the biopsy.
Stage 1 melanoma is highly curable – as long as the doctors are sure they removed enough surrounding
skin, this is all the treatment you will typically need.
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Ways to manage stress We all need to manage our stress! But especially after a cancer diagnosis. Consider these ways to help lower any stress or worry you may feel: • Join a support group • Talk with a therapist or counselor • Stay active - go for a walk, swim, or bike ride • Keep a journal
Finding support You may feel worried or stressed with a melanoma diagnosis. At times, this stress may feel overwhelming. The good news is that science has made big steps in treating melanoma! For many people with stage 0 and 1, treatment can completely remove cancer. Social and emotional support While stage 0 or 1 melanoma is highly curable, it can still help to have support when you need it. Consider these tips: Prepare for appointments
• Watch a funny TV show or movie • Get a massage • Listen to music • Practice yoga • Practice mindfulness • Connect with a 1:1 peer support
• Call a friend • Read a book
• Plan your travel arrangements ahead of time • Write down a list of questions to ask your doctor
As you’re going through your treatment, look for these warning signs:
• Keep a notebook to write down appointment dates, notes, or questions • Plan to bring someone with you to help take notes – it can be a lot of information to take in Join a support group or talk to a counselor Find the format that works for you. Is it over the phone, on the Internet, or meeting face-to-face? Is it easier to share your feelings with a healthcare professional, a spiritual leader, or a group of other people with similar experiences?
Sad or “empty” feelings
Feeling overly tired or restless
Loss of interest or pleasure
Thoughts of suicide or death
Trouble sleeping or concentrating
Nausea or faster heart rate
Change in appetite
Chest or stomach pain
If you have any of these symptoms, talk with your doctor. They can help you find ways to cope and connect you with helpful resources and professionals.
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Protect your skin About 9 out of 10 (90%) skin melanomas are caused by too much UV (ultraviolet) ray exposure, such as from the sun or tanning beds. UV rays are a type of radiation given off by
Chances of melanoma coming back (recurrence) Finishing treatment can be exciting, but also stressful. You may be relieved to finish treatment but worry about cancer growing or coming back. If melanoma returns ( recurrence ), it will most likely be within 5 years after treatment. The chance of melanoma coming back is higher if the melanoma: • Was thick • Looked like an open sore (bleeding and forming scabs before it was treated) • Was surrounded by other melanomas • Spread to 1 or more lymph nodes
the sun and artificial sources, such as tanning beds. Here’s how you can protect yourself from UV rays:
When outside, seek shade, especially between 10 am and 4 pm
Cover up with clothes, hats, and UV-blocking sunglasses
Use sunscreen with an SPF of 30 or higher, and that is broad spectrum UVA/UVB Don’t forget to reapply every 2 hours if you’re swimming or sweating!
Preventing melanoma and finding it early are the best treatment options!
Preventing melanoma from coming back Surveillance care plan Surveillance means watching for signs of the melanoma coming back. Surveillance is vital for anyone diagnosed with melanoma. Follow your dermatologist’s or surgeon’s recommendation for how often you should get a full body skin exam and other ways to protect your skin.
Who is most likely to find melanoma on your body? YOU ARE!
Check your skin every month (follow the guide in the next section!)
Do not use tanning beds
Do monthly self-skin checks Melanoma can happen on any area of your skin, but the most common areas are: • The chest or back for people assigned male at birth • The legs for people assigned female at birth Check your skin 1 time per month. During your first self skin check:
Talk with your doctor about a surveillance care plan that is best for you.
Closely check any concerning areas of skin (see the ABCDEs of melanoma on the next page) Each month: Check any concerning areas for changes
Describe any moles or spots you want to keep track of in the chart on page 16
See your doctor each year See your doctor each year for a skin check. This could be your primary care doctor or a dermatologist.
Write down any new moles or spots you find
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Your monthly skin check guide
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Know the ABCDEs of melanoma The ABCDEs of melanoma are signs to look for during your monthly skin check. If you find a spot with 1 or more of these ABCDEs, see a dermatologist to have it checked out. Asymmetry: Compare each half of the mole by visually dividing the mole in half. If one half does not match the other half, the mole is asymmetric. Border: Look at the edges of the mole. A mole with an irregular or jagged border is concerning. Color: Check the color of the mole. The mole should be a single color of brown or black. A mole with different colors or areas of pink, red, white, or blue is concerning. Diameter: Measure the size of the mole with a ruler. A mole should not be bigger than 6 millimeters across (no bigger than a pencil eraser). Evolution (or change): Keep track of any changes that happen over time, even if they seem small. Also check for new moles or spots.
Check your entire body To start, make sure you have:
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A large mirror
A handheld mirror
A comb
Step 1: Look at your face, including your nose, lips, mouth, and behind your ears.
Step 2: Check your head and scalp (under your hair) using a comb to part your hair. If you don’t have a lot of hair, check your entire scalp (because your head gets more sunlight)!
Step 3: Check the front and back of your hands, in between your fingers, and your fingernails.
Step 4: Check your arms and armpits. Don’t forget to lift your arms!
Looking for the ABCDEs in your monthly skin checks may help you find: • A mole or spot that changes • A sore that will not heal • A new lump • A mole that becomes itchy, painful, tender, or bleeds
• A dark area under or next to a fingernail or toenail • Redness or swelling around a mole • A “funny looking” or “ugly” spot
Step 5: Look at your neck, chest, and upper body. Check between and under your breasts and any skin folds.
Step 6: Use a handheld mirror to check the back of your neck and back.
Step 7: Keep using your mirror to check your bottom, genitals, and the back of your legs. Lastly, check the bottoms of your feet, between your toes, and your toenails.
Can’t see the hard-to-reach places? Find someone to help you! This could be your partner, roommate, or a close friend.
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Resources Free patient resources MRF Patient Forum Provides a space for patients, caregivers, family, and friends to discuss the melanoma journey and find friends and resources to make that journey more bearable. forum.melanoma.org Ask a Nurse The MRF’s nurse provides free, personalized answers to your melanoma questions. Email: askanurse@melanoma.org Melanoma Treatment Center Finder An interactive map listing melanoma centers of excellence and treatment centers that have experience treating melanoma melanoma.org/treatment-center-finder Educational Resources and Recordings Learn more about melanoma through webinars, slides, and recordings from past educational events learn.melanoma.org
Use this chart to note any concerning areas. Take it to your yearly skin exam with your doctor. If you notice any changes, see your doctor sooner.
Date
Location Asymmetry Border
Color
Diameter Evolution
3/26/24 Right
Yes
Jagged
Varying browns & white
6mm
Unchanged
shoulder
Financial resources Learn about financial help for melanoma patients. • Pharmaceutical patient assistance programs • Government assistance and other agencies • Lodging and hotel assistance
Scan here to see these resources:
Need a reminder for your monthly skin check? • Ask your Amazon Alexa or Google Assistant to “open skin check” for step-by- step instructions • Create a monthly ‘Melanoma Monday’ reminder on your phone or calendar
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Glossary ABCDEs: Signs to look for during a monthly skin check. Stands for: Asymmetry, Border, Color, Diameter, Evolution. Acral or subungual melanoma: Melanoma under fingernails or toenails. Biopsy: A way that doctors remove cells or tissue to be looked at under a microscope. Clark level: A staging system that describes how deep melanoma has grown into the skin. This number is different than the stage of cancer. Dermatologist (skin doctor): Doctors who diagnose and treat skin disorders. Dermis: The 2nd layer of skin under the epidermis. Epidermis: The outer layer of the skin. Excision biopsy: A doctor uses a surgical blade to remove an oval-shaped concerning area of skin that removes the entire area as well as a border of normal skin, called a margin, to be looked at under a microscope. Full-body skin exam: A dermatologist (skin doctor) does a visual exam of a person’s entire body to look for unusual spots or areas of skin that could be signs of skin cancer. In-situ: When abnormal cells that could become cancer are found only in the place where they began, and haven’t spread to nearby tissue. Also called stage 0 cancer. Lymph nodes: Small glands in our bodies that filter germs and help fight infection. We have lymph nodes all over our bodies, but they’re mostly in our neck, armpits, and groin (pelvic area). Melanocytes: The cells that color our skin. Melanin also gives our eyes and hair their color. Our freckles and moles are dense clusters of melanocytes, which make our skin appear darker. Metastasis: The spreading of cancer. When cancer cells spread beyond where they began into distant parts of the body. Also called stage 4 (IV) cancer. Mucosal melanoma: Melanoma in mucous membranes, such as the mouth, sinus cavity, genitals, or digestive tract. Ocular or uveal melanoma: Melanoma in the eye. Oncologist (cancer doctor): Doctors who diagnose and treat cancer.
Pathologist: A doctor with special training in finding diseases by looking at biopsy samples under a microscope. In skin cancer, the pathologist might be called a dermatopathologist. Punch biopsy: A doctor presses a round blade into the skin to remove an entire mole or area, to be looked at under a microscope. Recurrence: Cancer coming back. Resectable: Able to be removed by surgery. Self skin check: Checking your own skin for concerning or changing areas of skin, usually once a month. Sentinel lymph node: The first lymph node or nodes that cancer is most likely to spread to from the primary tumor. Sentinel lymph node biopsy: Biopsy (removal of cells or tissue) of the lymph node the cancer is most likely to spread to first. Shave biopsy: Doctors use a surgical blade to remove a sample from the top layer of skin to be looked at under a microscope. Staging: A way doctors describe cancer and where it is in the body. TNM: System used to decide the stage of cancer. Stands for: Tumor thickness, Nearby lymph nodes, Metastasis. Ulceration: A sore or break on the skin. UV (ultraviolet) rays: Invisible electromagnetic radiation from the sun or tanning beds that can damage skin cells and lead to skin cancer. Wide local excision: A melanoma treatment that involves surgery to remove the cancer and some surrounding, healthy tissue. This lowers the chance of the melanoma coming back. 1. SEER*Explorer: An interactive website for SEER cancer statistics [Internet]. Surveillance Research Program, National Cancer Institute; 2024 Apr 17. [cited 2024 May 3]. Available from https://seer.cancer.gov/statfacts/ html/melan.html. Data source(s): SEER Incidence Data, November 2023 Submission (1975-2021), SEER 22 registries. 2. American Cancer Society. Cancer Facts & Figures 2024. Atlanta: American Cancer Society; 2024. Data sources:
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