Use our new friend, Spot, to help children check their skin for new or unusual spot or lesions. This tool will help young people become aware of their skin and aware of melanoma.
Melanoma Patient and Caregiver Guide A guide for people diagnosed with cutaneous melanoma (melanoma of the skin)
Resectable (surgically removable)
Stages 3–4
Stages 2–3
Stages 0–1
The MRF’s mission is to eradicate melanoma by accelerating medical research while educating and advocating for the melanoma community.
Just diagnosed with stage 2 or 3 melanoma (resectable)? If you’ve just found out that you or a loved one has cutaneous melanoma, it can be a shock. But you are not alone — 1.4 million people in the United States are living with melanoma. 1 The good news is that due to major advances in treatments, the outlook for people with stage 2–3 cutaneous melanoma continues to improve. Today, people are often having dramatic and lasting responses to newer therapies, and many are cured.
million people are living with melanoma. 1 1.4
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 2 and 3 that can be removed by surgery (called resectable ).
In this guide, you will learn:
Learn about advance directives ................22 Clinical trials .......................................................23 Early detection of melanoma recurrence (cancer coming back) ....................................26 Your regular self-skin-check guide ............28 Survivorship ..........................................................31 Resources ............................................................36 FOR CAREGIVERS Caregiver support guide ...............................40 Resources ............................................................58 Glossary ...............................................................60
FOR THE PERSON WITH MELANOMA What is cutaneous melanoma?.....................2 How can doctors tell if I have melanoma?...............................................4 What stage is my melanoma?........................5 Knowing the genetic mutations in your melanoma................................................8 Learn about stage 2 melanoma .................10 Learn about stage 3 melanoma (resectable)........................................................... 12 Know your cancer care team .......................16 Questions to ask your doctor ........................18 Steps for getting a second opinion ...........20 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.
In this guide, we will use the word “melanoma” to refer to cutaneous melanoma, which means melanoma of the skin. Words in dark blue are defined in the glossary on page 60.
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Cutaneous melanoma is a type of cancer that usually starts in a person’s skin. It is the most common type of melanoma. Melanoma happens when a cell called a “melanocyte cell” is damaged. What is cutaneous melanoma?
1 2 3
Melanocytes are the cells in our skin that carry melanin, which is what gives our skin color, or pigment.
melanocyte cell
melanoma
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.
Melanoma most often happens in the skin. But it can also happen in other places: l In the eye — called ocular or uveal melanoma l In mucous membranes such as the mouth, sinuses, rectum, anus or in the vaginal area — called mucosal melanoma l Under fingernails or toenails, or on the palms of hands or the bottom of the feet — called acral melanoma Melanoma is the most aggressive 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 (small glands that help fight infection) and organs in the body. If this happens, it can be life-threatening. However, scientists are continuing to find new ways to treat, prevent and diagnose diseases — including melanoma that has spread.
Finding cancer early (called early detection) is so important. It is vital to check your own skin for new or changing moles or other spots every month!
2 Melanoma Patient and Caregiver Guide | Stages 2–3
How many people get melanoma each year?
Experts estimate that more than 200,000 people in the United States were diagnosed with melanoma at these stages in 2024. 2
Stage 0 99,700+ people in the US
Stages I, II, III or IV (stages 1–4) 100,640+ people in the US
59,170+ 41,470+
males and females
2 American Cancer Society. Cancer Facts & Figures 2025. Atlanta: American Cancer Society; 2025.
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How can doctors tell if I have melanoma?
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. They may use a special instrument called a dermatoscope. This is like a magnifying glass, which is more sensitive than the naked eye. 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, called a biopsy. Doctors may either remove part of the area or the entire area. To find out if you have melanoma, your doctor may refer you to a dermatologist (skin doctor) to check your skin thoroughly.
There are three types of 200,000 kin 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. However, they may do a deep shave removal for diagnosing concerning areas. 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. A punch biopsy may be partial (not meant to remove the whole area) or excisional (usually for smaller spots). 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.
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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. If you have a mole or area of skin you are concerned about, see a dermatologist. If they cannot see you in a timely manner, make an appointment with your primary care provider and share your concern.
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4 Melanoma Patient and Caregiver Guide | Stages 2–3
What stage is my melanoma?
If you are diagnosed with melanoma, your doctor will do a process called staging. Staging is a way doctors: l Describe the cancer l Figure out where it is in your body and if it has spread to lymph nodes or other parts of your body l 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. These procedures are usually done at the same time:
Wide local excision Removes the tumor and some surrounding, healthy tissue. This removes a larger area of healthy skin to remove any cancer cells left after the biopsy. Sentinel lymph node biopsy A surgeon removes the first lymph node or nodes that the melanoma is most likely to spread to. A pathologist then checks the nodes carefully to see if the cancer has spread. This is usually done for melanomas thicker than 0.8 mm (millimeters) deep and sometimes thinner, depending on certain features of the melanoma under the microscope. Having a sentinel lymph node biopsy will help you and your doctor know more about your cancer, its stage and what treatment might be right.
After learning all of this, you may even help prevent someone you love from getting a melanoma diagnosis!
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The TNM system Doctors use a staging system called TNM , where they consider three factors to stage cancer:
T Tumor thickness, which means how deep the cancer has grown into the skin in millimeters, also known as the Breslow thickness. The T category will 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 M
Nearby lymph nodes, which means if the cancer has spread to nearby lymph nodes.
Metastasis, which means if the cancer has spread to distant parts of the body, such as an organ like the liver, lungs, brain or lymph nodes far from where cancer first developed ( primary tumor location ).
Tumor is more than 2 mm but not more than 4 mm
Melanoma
2 mm
5 mm
2 mm 3 mm 4 mm
Epidermis
Dermis
Subcutaneous tissue
2019 Terese Winslow LLC US Govt. has certain rights.
6 Melanoma Patient and Caregiver Guide | Stages 2–3
Five stages of melanoma Based on this information, doctors give the cancer an overall stage. There are five stages of melanoma, with some of the stages split into sub-groups:
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. 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. Ulceration happens when the skin over the tumor is broken down or bleeding. If present, the pathologist will include this in the pathology report. Ulceration can also happen in stage 1 melanoma, but it is less common.
Stage 1 1A and 1B Stage 2 2A, 2B and 2C
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.
Stages use roman numerals like this:
The higher the number and the letter, the larger the tumor and the more it has spread to nearby tissue. So, stage 1 tumors have spread less than stages 2–4 tumors.
Stage I
l Stage 1
Stage II
l Stage 2
Stage III
l Stage 3
Stage IV
l Stage 4
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.
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Cancer is caused by mutations (changes) in our cells’ genes, or DNA, that allow cells to grow uncontrollably. Knowing the genetic mutations in your melanoma can help you and your doctors decide on the best treatment. If your cancer is high-risk stage 2 or stage 3 (is thicker than 4 mm (millimeters) or involves nearby lymph nodes), your doctor may recommend that your biopsy samples be tested for certain gene mutations. This would help you and your doctor make a more informed treatment plan. Knowing the genetic mutations in your melanoma
Common genetic mutations in melanoma Your doctor may test for these mutations:
BRAF This is the most common mutation in melanoma. About half of people (50%) with common melanoma subtypes have the BRAF mutation in their melanoma. NRAS This mutation happens in about 1 in 5 people (20%) with melanoma.
KIT This mutation is uncommon but is most often seen in melanoma in the mouth or digestive tract, or under fingernails or toenails. GNAQ and GNA11 These mutations are most common in melanoma of the eye.
Not all melanomas need to have genetic testing of biopsy samples. Ask your doctor if this is right for you .
8 Melanoma Patient and Caregiver Guide | Stages 2–3
Some treatments target gene mutations Scientists have developed treatments (also called therapies) that target some of these genetic mutations in melanoma. These targeted therapies tend to work better to slow or stop the cancer with fewer side effects than some other cancer treatments. Read more about targeted therapy in the Melanoma Patient and Caregiver Guide for Stages 3–4.
A specific type of testing: Gene expression profile (GEP)
What is GEP? A type of test that analyzes the expression patterns of certain genes within the melanoma cancer cells. This can help predict how aggressive a tumor might be and the chances of it coming back. What might GEP be used for? Some tests combine this genetic information with other factors, like tumor size and patient characteristics, to estimate the chance of melanoma spreading to the lymph nodes or returning in the future. The results could help guide decisions about management, such as whether to have a sentinel lymph node biopsy, see other specialists or increase follow-up care. Who might benefit from GEP? These tests are not currently incorporated into national melanoma guidelines, but may be helpful for people with stages 1–3 melanoma. Future studies will likely address this and provide better guidance on who should get this testing and how it can be used to help people with melanoma.
Be an active partner in your care When you feel ready, learn as much as you’re
comfortable with about your type of melanoma. The more you know, the more you can partner with your cancer care team to decide on the best treatment for you.
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What is stage 2 melanoma? In stage 2 melanoma, the cancer cells have grown below the thin outer layer of the skin ( epidermis ) into the next layer of skin ( dermis ). It has not spread to nearby lymph nodes or distant sites. Because the tumor has not spread to distant parts of your body, your prognosis (outlook) typically remains good. Learn about stage 2 melanoma
Stage 2 is divided into 3 levels:
STAGE WHAT IT MEANS Stage 2A The tumor is either:
l 1–2 mm (millimeters) thick, with ulceration, OR l 2–4 mm thick, with no ulceration The tumor is either: l 2–4 mm thick, with ulceration, OR l More than 4 mm thick, with no ulceration
Stage 2B
Stage 2C
The tumor is more than 4 mm thick, with ulceration. These are aggressive tumors that are more likely to spread.
10 Melanoma Patient and Caregiver Guide | Stages 2–3
How is stage 2 melanoma treated? The treatment of melanoma is changing as researchers learn more about this disease. Understanding all of your treatment options will help you play an active role in your treatment and care.
Surgery Surgery is the primary treatment for melanoma of the skin. The goal of surgery is to remove all of the tumor with a surrounding area of skin ( margin ) and to test if any tumor cells have spread to nearby lymph nodes. This usually includes the procedures that are done while staging the cancer: a wide local excision and a sentinel lymph node biopsy. Additional treatment After surgery, doctors may recommend adjuvant treatment for high-risk patients. Adjuvant treatment (or adjuvant therapy ) is treatment after surgery to lower the chance of cancer coming back ( recurrence ). The reason for adjuvant treatment is to eliminate small numbers of cancer cells that cannot be found with standard imaging and were not removed by surgery because they had spread to distant sites.
Adjuvant therapy has been shown to delay or prevent the cancer from coming back. However, it is still being studied. It has not yet been shown to improve overall survival in people with melanoma and there are some health risks with this treatment. The type of adjuvant therapy depends on a person’s stage of melanoma.
Newer, recently-approved adjuvant therapies There are newer therapies, called
systemic treatments, that travel through your bloodstream. These medicines can target cells directly or enhance your immune system response against the tumor anywhere in your body. Talk to your care team about if systemic treatments might be right for you.
What is the follow-up care for stage 2 melanoma?
After treatment, doctors recommend that you:
Do monthly self skin checks.
Schedule ongoing dermatology visits at least once a year, or as recommended by your care team.
Learn about FDA-approved (US Food & Drug Administration) adjuvant treatments for melanoma:
Doctors may also recommend that you have:
A physical exam every 3–6 months for a few years after your treatment.
https://melanoma.org/ cutaneous-melanoma/ cutaneous-treatment/
Imaging tests , such as PET-CT, CT scans or an ultrasound of concerning lymph nodes to check for the cancer coming back ( recurrence ). Ask your care team how often you will need imaging tests.
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Learn about stage 3 melanoma
What is stage 3 melanoma (resectable)? In stage 3 melanoma, the cancer cells have spread to nearby lymph nodes, or to the surrounding skin just outside the tumor. Because the tumor has not visibly spread to distant parts of your body, your prognosis (outlook) typically remains good. Resectable stage 3 means the tumor can be removed by surgery. Stage 3 tumors may be any thickness, with or without ulceration (broken skin). They are divided into 4 levels:
STAGE WHAT IT MEANS
Stage 3A Stage 3B Stage 3C Stage 3D
And if it has spread: l Through lymph vessels to nearby areas of skin, called satellite tumors l To nearby lymph vessels, called in-transit metastasis l To lymph nodes
These levels vary by: l T umor thickness l Ulceration
12 Melanoma Patient and Caregiver Guide | Stages 2–3
How is stage 3 melanoma (resectable) treated? The treatment of melanoma is changing as researchers learn more about this disease. Understanding all of your treatment options will help you play an active role in your treatment and care.
Surgery For stage 3 melanoma, the primary treatment is surgery. The goal of surgery is to remove the tumor cells in the skin and lymph nodes. This usually includes the procedures that are done while staging the cancer: a wide local excision and a sentinel lymph node biopsy. In the past, if melanoma was found in the sentinel lymph node biopsy, doctors would do a complete lymph node dissection, which is surgery to remove all lymph nodes in a specific area. However, this is rarely done now since it has not been shown to improve survival and may cause long-term problems, like swelling in your arms or legs. Additional treatment Additional treatment you might get is based on things such as tumor thickness and how much melanoma was found in the sentinel lymph node biopsy. Your care team will discuss your treatment options with you.
Neoadjuvant treatment Neoadjuvant treatment is treatment to shrink a tumor before surgery. Doctors may give this to some people if their melanoma involves lymph nodes that are enlarged or can be seen or felt. Research has shown that neoadjuvant treatment can lead to better outcomes due to smaller surgery procedures and a better understanding of how the tumor responds to treatment. It may even improve overall survival, especially when the tumor responds well to the treatment.
If your doctor doesn’t offer neoadjuvant treatment, ask if it may be an option for you.
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Neoadjuvant treatment often includes:
Immunotherapy A type of systemic treatment (travels through your bloodstream to your whole body) that tries to reactivate your immune system so that it will destroy melanoma cells. These treatments can sometimes cause serious side effects from too much immune system response. There are a few FDA-approved immunotherapies for high-risk Stage 3 melanoma (which are tumors thicker than 4 mm (millimeters) or that have spread to nearby lymph nodes ).
Targeted therapy A treatment meant to block specific proteins, such as BRAF (the most common mutation in melanoma), that are driving the growth and spread of a tumor. Targeted therapy is somewhat personalized, because the drugs are “targeted” to a person’s unique tumor type. They may work well and have fewer side effects than older chemotherapy. However, targeted neoadjuvant therapy is not typically preferred and would only be recommended in certain situations.
Adjuvant treatment Adjuvant treatment is treatment after surgery to lower the chance of cancer coming back ( recurrence ). The reason for adjuvant treatment is to eliminate small numbers of cancer cells that were not removed by surgery because they couldn’t be found. Adjuvant treatment may include newer, effective systemic treatments such as immunotherapies and targeted therapies that can target cells or enhance the immune system anywhere in the body. Radiation was sometimes recommended as an adjuvant treatment, but it is not common now due to long-term side effects. The type of adjuvant therapy depends on a person’s stage of melanoma.
To learn more about these additional treatment options, visit: https://melanoma.org/cutaneous-melanoma/cutaneous-treatment/
MRF
You can always ask for a second opinion about your treatment options.
14 Melanoma Patient and Caregiver Guide | Stages 2–3
What is the follow-up care for stage 3 melanoma (resectable)?
After treatment, doctors recommend that you:
Do regular self skin checks.
Schedule ongoing dermatology visits at least once a year, or as recommended by your care team.
Doctors may also recommend that you have:
A physical exam every 3–6 months for a few years after your treatment.
Imaging tests , such as PET-CT, CT scans or an ultrasound of concerning lymph nodes to check for the cancer coming back ( recurrence ). Ask your care team how often you will need imaging tests.
Supportive oncology care Supportive oncology care is support to improve your quality of life throughout your treatment journey. This includes managing side effects and addressing any mental and emotional needs. This care is different from hospice and end-of-life
care. It is available to you at any point of your treatment. There are many specialists who can help you, including:
l Dermatologists to help with skin side effects l R heumatologists and endocrinologists to help with immune-related problems l O ther specialists who can help with treatment side effects in other organs of your body
Talk with your care team if you would like this support.
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Know your cancer care team
Cancer treatment should be managed by a multidisciplinary team, which means it includes people from many different specialties. Each person adds something different to ensure they consider all aspects of your care. Here are common multidisciplinary team members for melanoma:
Dermatologist A skin specialist doctor who diagnoses and treats diseases and other problems of the skin, scalp, hair and nails. Find a dermatologist who specializes in melanoma. Endocrinologist A medical professional who specializes in the diagnosis and treatment of disorders of the endocrine glands. Medical oncologist A doctor who specializes in diagnosing and treating cancer. A medical oncologist is often the main healthcare provider for someone who has cancer. They will offer cancer treatment options and referrals. It is important to find an oncologist who specializes in melanoma. Nutritionist/Registered dietitian A credentialed healthcare professional who can recommend food and advice to help you eat comfortably and get the nutrients you need. Look for a registered dietitian who has experience working with people with cancer. Oncology nurse (RN) A nurse trained to treat and care for people who have cancer. They give treatments and other medicines. They can be a good source of information and support. Oncology pharmacist A pharmacist who has special training in cancer medicines. They can teach you about drugs and how they interact, help you with side effects and may help you find co-pay assistance or discounts.
Oncology social worker or counselor A person with a master’s degree in social work who gives counseling and help to people who have cancer. They can help you and your family find resources to cope with financial, transportation and home care needs. Supportive care specialist A medical professional who helps manage symptoms, pain and side effects during treatment. Supportive care is different from hospice care and end-of-life care. It is available to you at any point during your treatment journey. Pathologist A medical doctor who specializes in diagnosing diseases due to changes in tissues and body fluids. Patient/Nurse navigator A healthcare professional who helps patients, caregivers and families bridge the gaps in the healthcare system, by coordinating care between doctors, nurses and specialists to provide personalized care and support. They can help talk with your healthcare team, set up appointments and help with home care needs. Plastic surgeon A medical doctor who performs reconstruction after skin cancer surgery to reduce scarring and help rebuild the look of the area where the cancer was removed. Psychiatrist A doctor who specializes in diagnosing and treating mental health conditions.
Melanoma Patient and Caregiver Guide | Stages 2–3 16
Psychologist A trained professional who gives therapy and often studies the human mind and behavior. Radiation oncologist A doctor who treats people with cancer using radiation therapy as the main type of treatment. Radiation therapy is the use of high-energy rays to kill or damage cancer cells. Radiologist A doctor who specializes in diagnosing cancer using medical imaging scans. These can include X-rays, MRI, CT scans and PET scans.
Rheumatologist A medical professional who specializes in diagnosing, treating and managing diseases of the joints, muscles and bones. Surgical oncologist A doctor who performs biopsies and other surgery to remove cancer tumors and cells in people with cancer.
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Questions to ask your doctor
Questions about… Diagnosis and first steps
l D o you have a lot of experience diagnosing and treating melanoma? l D o you know what stage of melanoma I have?
— Do I need a biopsy or more tests to learn my stage? l D o you know how thick or serious the melanoma is? — Do you know my Breslow thickness ? l H as the cancer spread to my lymph nodes ? l H ow will you find if the cancer has spread? l W ill my samples be tested for genetic mutations? — When will I know the results? — What is this process like?
Questions about… Follow-up care
Questions about… Preventing future melanoma l W ill I get more melanoma? l H ow will we prevent the melanoma from coming back ( recurrence )? l H ave you checked my body for other concerning areas?
l W hat type of follow-up care do I need? — Do I need regular scans? — Should I continue to see a dermatologist? l W hat do I do if the cancer comes back?
Melanoma Patient and Caregiver Guide | Stages 2–3 18
Questions about… Treatment
l W hat are my treatment options? — What are the risks and side effects? — Do I need immunotherapy ? l W hich treatment plan do you recommend? l S hould I get a second opinion? l W ill I have a scar? l W ill I be able to continue my normal daily life? l S hould I begin looking at clinical trials?
You can ask if you will have a multidisciplinary tumor board to discuss your treatment before making a plan. This is a meeting where a group of healthcare professionals from different specialties
review a person’s cancer case and recommend a treatment plan.
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A second opinion may give you more information and help you feel confident in your treatment plan. Steps for getting a second opinion
What is a second opinion? A second opinion is asking a different doctor or cancer care team to assess your cancer diagnosis and treatment options. This can be helpful because cancer research moves very quickly, and some doctors may have different knowledge than others. Sometimes a different perspective can help you make the best, most informed choice for you. This is especially true if your doctor doesn’t regularly see patients with melanoma or your specific type of melanoma.
Second opinions are normal — at every cancer stage You might worry your doctor will be offended if you ask for a second opinion. But most doctors welcome a second opinion! Many health insurance companies will even pay for it. Important note: It is important to get a second opinion before you start a treatment plan. Getting a second opinion after starting a treatment plan may limit your treatment options and diminish the value of the second opinion.
You can ask for a recommendation or self-refer. Ask your current doctor for a recommendation. However, most specialists or cancer centers do not need referrals, and you may call them yourself, which is called “self-refer.”
How do I get a second opinion?
Melanoma Patient and Caregiver Guide | Stages 2–3 20
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Call your insurance company to make sure they will pay for a second opinion.
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You might ask your doctor…
l H ow certain are you about the diagnosis? Should an additional expert review my results? l If you were in my position, who would you see about a second opinion?
l A second opinion would really give me confidence that I’m doing everything I can — who would you suggest I see? l Before we start treatment, I’d like to talk to someone about other options to make sure it’s the best choice for me. Will you help me?
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Share your information… Once you’ve made an appointment with your second opinion doctor, call your current doctor’s office, or any hospitals or clinics you have been to, and ask them to send over your:
l Medical history l Pathology report from any biopsy or surgery — Providing the actual pathology slides for re-review by the second opinion team may be helpful l A copy of your operative report (if you had surgery)
l Any imaging or test results l A copy of the discharge summary if you were in the hospital l A summary of your doctor’s current treatment plan l A list of all your drugs, drug doses and when you took them
Make the best choice for you… After the doctor gives you their second opinion, the decision is up to you and your loved ones who support you. You will want to pick the treatment option that seems right to you. It might help to discuss the two opinions with your primary care doctor. In addition, the National Cancer Institute (NCI), part of the National Institutes of Health, has named 70 centers throughout the US as “NCI-Designated Cancer Centers.” These 70 centers are recognized for their scientific leadership, resources and the expertise of their research.
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Click here to find an NCI-Designated Cancer Center in your area, and learn more about getting a second opinion.
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Learn about advance directives Advance directives are legal papers that let you decide on important issues about your treatment and care. They can: l S how your decisions, such as how much treatment you want, and who should make decisions if you can no longer make decisions l H elp make sure you get the treatment you want l M ake it a lot easier for your caregivers to make treatment decisions if they understand your wishes l Include your end-of-life healthcare decisions Advance directives can include these papers: l Living will: A document that shows what kind of healthcare a person wants if they can’t speak for themselves l Durable medical power of attorney: A document that names another person to make health decisions for a person if they can no longer make their own decisions. This person, chosen by the patient, is called a “healthcare proxy.”
Studies have shown that people who talked about their end-of-life choices (such as advanced directives) were more likely to feel in control of their situation and suffer less. Talk to your care team or social worker about getting set up with advance directives.
Melanoma Patient and Caregiver Guide | Stages 2–3 22
Clinical Trials
A clinical trial is a research study designed to learn how our bodies respond to medicines or other treatments. They help doctors decide which patients should get which drugs in which order. Clinical trials are often viewed as the best treatment option for patients with melanoma stages 2, 3 and 4 because they: l C ombine standard treatment with a new treatment, which is thought to be better than the standard treatment that is currently available l O ffer drugs or combinations of drugs that are not yet approved by the FDA (US Food & Drug Administration), which many experts believe offer great promise in treating the cancer while also lowering the chance of cancer coming back All medicines prescribed by a doctor must first be tested in clinical trials. In fact, the current advances in the treatment of melanoma are because of clinical trials. The new drugs we have now that are improving survival rates were only available to patients in clinical trials just a few years ago. Current clinical trials are learning if newer and better options exist.
Reasons to consider a clinical trial You and your care team might consider a clinical trial because you: l W ill get close medical attention, such as more exams and tests of your health l M ay get access to medicines that are not yet approved
by a health authority, such as the FDA (US Food & Drug Administration), but that could be better at treating melanoma l C an give feedback on your experiences in the trial l H ave the chance to play a role in discovering new treatments for people in the future
Joining a clinical trial is a personal decision. Talk to your doctor, care team and friends and family to consider if joining a clinical trial is a good option for you.
Learn about clinical trials in melanoma. Scan this QR code with your phone or click here to watch a video.
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Clinical trials are designed in phases with safety in mind Clinical trials are designed in phases, and a trial treatment can only move on to the next phase if the trial shows no safety concerns and that it may work.
Phase 1 studies Study if the treatment is safe and potentially helpful. These typically include a small number of people with advanced disease whose treatments have not worked. Phase 2 studies Study how well the medicine works and how safe it is in a small number of people with a specific disease.
Phase 3 studies Usually study the new treatment compared to the standard treatment in a larger number of people.
At this point, a sponsor (who funds the research) may submit the results to a health authority, such as the FDA, to have the trial treatment approved for people to use if the trial treatment is safe and works well.
Phase 4 studies Study the long-term safety and benefit
of an FDA-approved treatment in a large number of people.
What makes clinical trials safe for patients? Clinical trials follow strict guidelines and laws to keep people safe. All clinical research studies in the US must be reviewed and approved before they begin by: l Health authorities, such as the FDA l An Institutional Review Board (IRB), a team of independent experts and members whose job is to make sure participants’ rights are fully protected and that they are not exposed to any unnecessary risks
Before you enroll in a trial, a doctor or nurse will clearly explain the study procedures and requirements. This is called informed consent. Doctors are not allowed to enroll patients in clinical trials until they make sure the patient understands what their involvement in the trial means for them.
Melanoma Patient and Caregiver Guide | Stages 2–3 24
Joining a clinical trial is voluntary, and you can leave a trial at any time. There is no cost to enroll.
Questions to ask if you’re considering a clinical trial Ask your doctor…
l W hat is the study treatment? l W hat will happen in the study, such as how many visits and what tests will I get? l H ow long will it last?
l W hat are the possible risks and benefits? l H ow is my privacy protected?
l W ho will be treating me? l W ill there be any costs?
How can I join a clinical trial? If you’re interested in joining a clinical trial, talk with your doctor. You can also…
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Use the Melanoma Research Foundation’s Clinical Trial Finder: connect.careboxhealth. com/en-US/partner/mrf
Find an NCI-Designated Cancer Center in your area at: melanoma.org/treatment- center-finder
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MRF
Speak with a Clinical Trial Navigator from the Melanoma Research Foundation about finding a clinical trial at: 1-800-517-2218, Monday–Friday from 8:30 am—6:00 pm ET
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Early detection of melanoma recurrence (cancer coming back) 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 five years after treatment. The chance of melanoma coming back is higher if the melanoma: l Was thick l Looked like an open sore (bleeding and forming scabs before it was treated)
l Was surrounded by other melanomas l Spread to one or more lymph nodes
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. See your doctor each year See your doctor each year for a skin check. This could be your primary care doctor or a dermatologist.
Talk with your doctor about a surveillance care plan that is best for you.
Melanoma Patient and Caregiver Guide | Stages 2–3 26
Prevention Protect your skin About 9 out of 10 (93%) 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 the sun and artificial sources, such as tanning beds. Here’s how you can protect yourself from UV rays:
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
When outside, seek shade, especially between 10 am and 4 pm.
every two hours if you’re swimming or sweating!
Check your skin every month (follow the guide in the next section).
Do not use tanning beds.
Who is most likely to find melanoma on your body? You Are!
Do regular self skin checks Melanoma can happen on any area of your skin, but the most common areas are: l The chest or back for people assigned male at birth l The legs for people assigned female at birth
Check your skin one time per month.
During your first self skin check: l Closely check any concerning areas of skin (see the ABCDEs of melanoma on the next page). l Describe any moles or spots you want to keep track of in the chart on page 30. Each month: l Check any concerning areas for changes. l Write down any new moles or spots you find.
ABCDEs of Melanoma
27
Your regular self-skin-check guide
Know the ABCDEs of melanoma: The ABCDEs of melanoma are signs to look for during your regular self skin check. If you find a spot with one or more of these ABCDEs, see a dermatologist to have it checked out.
NORMAL
IRREGULAR
E EVOLUTION (or change): Keep track of any changes that happen over time, even if they seem small. Also check for new moles or spots. D DIAMETER: Measure the size of the mole with a ruler. A mole should not be bigger than 6 mm (millimeters) across (no bigger than a pencil eraser). A 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. B BORDER: Look at the edges of the mole. A mole with an irregular or jagged border is concerning. C 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.
6
6
1
3
9
1
3
9
Knowing what to look for and performing regular self skin exams may help you become more aware of a mole that changes, a sore that just won’t heal or a new lump. If you find a spot that has one or more of the ABCDEs, make an appointment with a doctor to have it evaluated, preferably a board-certified medical dermatologist.
Looking for the ABCDEs in your regular self skin checks may help you find: l A mole or spot that changes l A sore that will not heal l A new lump l A mole that becomes itchy, painful, tender or bleeds l A dark area under or next to a fingernail or toenail l Redness or swelling around a mole l A “funny looking” or “ugly duckling” spot
28 Melanoma Patient and Caregiver Guide | Stages 2–3
Check your entire body
To start, make sure you have: l A large mirror
l A handheld mirror
l A comb
STEP2 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 1 Look at your face, including your nose, lips, mouth and behind your ears.
STEP 5 Look at your neck, chest and upper body. Check between and under your breasts and any skin folds.
STEP 4 Check your arms and armpits. Don’t forget to lift your arms!
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.
Find a Melanoma Mate If it’s too difficult to check those hard-to-see places on your own, find a Melanoma Mate — your partner, a roommate or close friend — to help check those areas with you each month. Be sure to return the favor during their skin check.
29
During your first self skin exam, closely inspect any concerning areas and write down the features of any moles you want to keep track of on this chart using the ABCDEs. Each month after, double-check those areas for changes and write down any new ones you find. Remember to take this chart with you to your yearly professional skin exam to discuss with your provider; make a sooner appointment if you see any changes.
Date Location Asymmetry Border
Color
Diameter
Evolution
Need a reminder for your monthly self skin check? l Ask your Amazon Alexa or Google Assistant to “open skin check” for step-by-step instructions. l Create a monthly “Melanoma Monday” reminder on your phone or calendar.
30 Melanoma Patient and Caregiver Guide | Stages 2–3
Survivorship Your life after a melanoma diagnosis may be different than before. “Survivorship” and “living with melanoma” are terms that have different meanings to different people, but to most, they mean living with, through and beyond a cancer diagnosis. Cancer survivorship begins at diagnosis and continues during treatment and through the rest of your life. For many people with melanoma, treatment can remove or destroy the cancer. And for others, the melanoma may never go away completely, which means regular treatment to try to keep the cancer under control for as long as possible. Learning to live with cancer that does not go away can be difficult and stressful. Survivorship plan Talk with your doctor about a survivorship care plan for you. This plan might include: l A schedule for follow-up tests and visits l A list of possible long-term side effects from your treatment, which may include what to watch for and when to contact your doctor l How to prevent future melanoma by protecting your skin and monthly self skin checks l Eating and exercise suggestions
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Eating and being active Eating the foods you need Eating well plays an important part in your survivorship plan.
Eating healthy foods before, during and after treatment can help you feel better and stay stronger. Your doctor may send you to a dietitian to make an eating plan that works for you. They may suggest you: l Track what you eat and what your body needs, such as carbohydrates, protein and fats. l Change what you eat to help build your strength and ability to handle the side effects of the cancer and the treatment. This might mean eating things that aren’t normally recommended for healthy eating. For example, high-protein, high-calorie foods to keep up your weight, or thick, cool foods like ice cream or milk shakes for sores in your mouth and throat from treatment. When going through treatment, you may feel less hungry and find it hard to eat. Here are some tips for eating more: l Eat small meals or snacks throughout the day. l Change up the foods you eat — don’t be afraid to try something new! l Make meals into social events — eat with friends or family.
Being active
Being more active during and after treatment can: l Improve your mood, energy and self-esteem l Help you cope with stress l Help you handle side effects of treatment
l Strengthen your immune system l Improve your sleep, blood flow and sexual functioning l Lower your chance of osteoporosis l Lower your chance of blood clots and heart disease l Possibly even lower your chance of new cancers in the future
32 Melanoma Patient and Caregiver Guide | Stages 2–3
Take your time adding to your exercise routine. You can start slow — even a few minutes a day — and then build up over time. Consider: l Walking l Swimming or riding a bike l Resistance training with light weights to build your strength l Stretching But don’t overdo it! Listen to your body. Some days, you just may not be able to be active. As always, talk with your doctor before starting any exercise program.
Social and emotional support No matter what stage of cancer, everyone needs support.
Consider these tips: Prepare for appointments l Plan your travel arrangements ahead of time. l Write down a list of questions to ask your doctor. l Keep a notebook to write down appointment dates, notes or questions. l 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 l 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?
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Ways to manage stress Consider these ways to help lower any stress or worry you may feel:
l Join a support group l Talk with a therapist or counselor l Stay active — go for a walk, swim or bike ride l Keep a journal
l Watch a funny TV show or movie l Get a massage l Listen to music l Practice yoga l Practice mindfulness l Connect with 1:1 peer support
l Call a friend l Read a book
As you’re going through your treatment, look for these warning signs:
l Sad or “empty” feelings l Loss of interest or pleasure l Trouble sleeping or concentrating l Change in appetite l Feeling overly tired or restless l Thoughts of suicide or death l Nausea or faster heart rate l 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.
Melanoma Patient and Caregiver Guide | Stages 2–3 34
If you have a young child For some families, talking about serious issues is very hard. Yet experts say to tell the truth about cancer. Children can cope with what they know — it’s harder to cope with what they imagine in their heads. Here are some tips for talking with children about cancer: l Start with what cancer is — this teaches children that they did not cause the melanoma, they don’t have to fix it and that people cannot “catch” it from another person. l Tell them the truth, and don’t guarantee a certain outcome of the cancer.
l Tell them how you are feeling and what you are thinking. l Tell them it is okay to be upset, angry, scared or sad. l Reassure them that you will tell them if the cancer gets better or worse. l Assure them that no matter what, they will always be taken care of and be okay.
As you’re having the conversation: l Try not to over-explain things because you feel nervous — follow the child’s lead, they will ask for or show you what they need. l Correct any incorrect information. l Be prepared to talk about death if they ask. l Allow them to express their feelings in different ways: — Younger children may prefer to draw a picture or play with a doll to express their feelings. — Teens may ask hard questions that you don’t have answers to. Be honest about what you don’t know.
Lastly, it helps to keep normal routines for children, as much as you can.
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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.
askanurse@melanoma.org
MRF
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
Melanoma Research Foundation Clinical Trial Finder
connect.careboxhealth.com/en-US/partner/mrf
Educational resources and recordings Learn more about melanoma through webinars, slides and recordings from past educational events.
youtube.com/CureMelanoma
melanoma.org/patients-caregivers/patient-caregiver-meetings
Lodging assistance American Cancer Society’s Hope Lodge — find a Hope Lodge in one of 22 states.
cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html
36 Melanoma Patient and Caregiver Guide | Stages 2–3
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