If You Have Merkel Cell Skin Cancer

If you (or someone you know) have just been told you have Merkel cell skin cancer (Merkel cell carcinoma or MCC) the information here could help.

What is Merkel cell carcinoma (skin cancer)?

Cancer can start any place in the body. Cancer that starts in the Merkel cells of the skin is called Merkel cell carcinoma or MCC. MCC is a rare kind of skin cancer.

Merkel cells are in the top layer of the skin. They're very close to nerves linked to touch. MCC starts when these cells grow out of control and crowd out normal cells. This makes it hard for the body to work the way it should.

Cancer cells can sometimes spread to other parts of the body. MCC might travel to the lungs or other organs and grow there. When cancer cells do this, it’s called metastasis.

But when MCC spreads to the lung (or any other place), it’s still MCC. It’s not lung cancer unless it starts from cells in the lung.

Questions to ask the doctor

• Why do you think I have MCC?
• Is there a chance I don’t have MCC?
• What will happen next?

How does the doctor know I have Merkel cell skin cancer?

If your doctor thinks you may have Merkel cell carcinoma or any other kind of skin cancer, you probably will need to have some exams and tests.

You'll be asked when the spot or lump first showed up and if it has changed in size or the way it looks. The rest of your skin will be checked. The doctor will also feel nearby lymph nodes. Lymph nodes are small bean-shaped sacs of immune system tissue found all over the body. Cancer can spread to them.

Here are some of the tests you might need.

Skin biopsy: In a skin biopsy, the doctor takes out all or some of the skin tumor to check it for cancer cells. A biopsy is the only way to tell for sure if you have skin cancer and what kind it is. There are many kinds of skin biopsies. Ask your doctor what kind you need. Each type has pros and cons.

Lymph node biopsy: MCC often spreads to the lymph nodes close to it. If a node feels swollen (like a lump under the skin) or if it looks big on a test like a CT scan (see below), a hollow needle may be used to take out a piece of it to check for cancer cells. Lymph nodes are also checked when surgery is done to remove the MCC tumor.

CT (CAT) scan: This test uses x-rays to make pictures of your insides. It may be used to see if nearby lymph nodes are swollen. It can also be used to check if MCC has spread to other organs, like the lungs. A CT scan might also be used to guide a needle into the body to do a biopsy.

MRI scan: This test uses radio waves and strong magnets instead of x-rays to make detailed pictures of your insides. It can help show if MCC has spread.

PET scan: PET scans use a special kind of sugar that can be seen inside your body with a special camera. If there’s cancer, this sugar shows up as “hot spots” where the cancer is found. This test can help look at your whole body to see if and where MCC has spread.

Questions to ask the doctor

• What tests will I need?
• Who will do these tests?
• Where will they be done?
• How and when will I get the results?
• Who will explain the results to me?
• What do I need to do next?

How serious is my cancer?

If you have Merkel cell skin cancer, the doctor will want to find out how big the tumor is and if and how far the cancer has spread. This is called staging. Your doctor will want to find out the stage of your cancer to help decide what type of treatment is best for you.

The stage describes the size of the tumor and its growth or spread through your skin. It also tells if it has spread to nearby lymph nodes or to other organs in your body.

Your cancer can be stage 0, 1, 2, 3, or 4. The lower the number, the less the cancer has spread. A higher number means a more advanced cancer. Be sure to ask the doctor about the stage of your cancer and what it means for you.

Questions to ask the doctor

• Do you know the stage of the cancer?
• If not, how and when will you find out the stage?
• Would you explain what the stage means to me?
• What will happen next?

What kind of treatment will I need?

There are many ways to treat Merkel cell carcinoma. The main types of treatment are surgery, radiation, immunotherapy, and chemotherapy. Most early-stage MCCs can be treated with surgery. More advanced cancers need other treatments.

The treatment plan that’s best for you will depend on:

• The stage of the cancer
• Where the tumor is
• The chance that a type of treatment will cure MCC (or help in some other way)
• Your age and overall health
• Your feelings about the treatment and the side effects that come with it

Surgery

Surgery is used to treat most MCCs. Different kinds of surgery can be used. The type that’s best for you depends mainly on how large the MCC is and where it is. Ask your doctor what kind of surgery you will have and what to expect.

Side effects of surgery

Any type of surgery can have risks and side effects, such as bleeding, infections, and scars. Be sure to ask the doctor what you can expect. If you have problems, let your doctors know. Doctors who treat people with MCC should be able to help you with any problems that come up.

Radiation

Radiation uses high-energy rays (like x-rays) to kill cancer cells. Radiation is seldom used alone, unless surgery can't be done. It's often used after surgery to help keep the cancer from coming back. It can also be used to treat MCC that has spread to other organs.

Side effects of radiation treatments

If radiation treatment is an option, ask the doctor what side effects you might have. Side effects depend on the part of the body that’s treated. The most common side effects of radiation are:

• Sunburn-like skin changes where the radiation is given
• Hair loss where the radiation is given
• Feeling very tired

Most side effects get better after treatment ends. Some might last longer. Ask your cancer care team what you can expect.

Immunotherapy

Immunotherapy is treatment that boosts your immune system to attack cancer cells.

This is often the first treatment for advanced MCC. It is also being studied for use before or after surgery.

These drugs are given into a vein (IV), every 2 to 6 weeks.

Side effects of immunotherapy

Immunotherapy drugs might make you feel tired, sick to your stomach, or cause fever, chills, and rashes. Most of these problems go away after treatment ends. Less often, these drugs can cause more serious side effects if the immune system attacks normal cells in the body.

There are ways to treat most of the side effects from immunotherapy. If you have side effects, tell your cancer care team so they can help.

Chemo

Chemo (chemotherapy) is the use of drugs to fight cancer. The drugs are given into a vein. They go into the blood and spread through the body.

Chemo might be used to treat advanced MCC, if immunotherapy can’t be used or if it’s no longer working.

Chemo is given in cycles or rounds. Each round of treatment is followed by a break. Most of the time, 2 or more chemo drugs are given. Treatment often lasts for many months.

Side effects of chemo

Chemo can make you feel very tired, sick to your stomach, and cause your hair to fall out. It might also cause other problems. Most often, these will go away after treatment ends.

There are ways to treat most chemo side effects. If you have side effects, tell your cancer care team so they can help.

Clinical trials

Clinical trials are research studies that test new drugs or other treatments. They often compare standard treatments with others that may be better.

If you'd like to learn more about clinical trials that might be right for you, start by asking your doctor if your clinic or hospital conducts clinical trials. See Clinical Trials to learn more.

Clinical trials are one way to get the newest cancer treatment. They are the best way for doctors to find better ways to treat cancer. Still, they can have downsides, too. If your doctor can find one that’s studying the kind of cancer you have, it’s up to you whether to take part. And if you do sign up for a clinical trial, you can always stop at any time.

What about other treatments that I hear about?

When you have cancer, you might hear about other ways to treat the cancer or treat your symptoms. These may not always be standard medical treatments. These treatments may be vitamins, herbs, special diets, or other things.

Some of these might help, but many have not been tested. Some have been shown not to help. A few have even been found to be harmful. It’s important to tell your doctor about anything you’re thinking about using, whether it’s a vitamin, a diet, or anything else.

Questions to ask the doctor

• What treatment do you think is best for me?
• What’s the goal of this treatment? Do you think it could cure the cancer?
• Will treatment include surgery? If so, who will do the surgery?
• What will the surgery be like?
• Will I need other types of treatment, too?
• What’s the goal of these treatments?
• What side effects could I have from these treatments?
• What can I do about side effects that I might have?
• Is there a clinical trial that might be right for me?
• What about special vitamins or diets that friends tell me about? How will I know if they are safe?
• How soon do I need to start treatment?
• What should I do to be ready for treatment?
• Is there anything I can do to help the treatment work better?
• What’s the next step?

What will happen after treatment?

In some people, Merkel cell carcinoma might be removed or destroyed, but in others it might not go away completely. In either case, you will still need to see your cancer doctor. Be sure to go to all of your follow-up visits. You will have exams and tests to see if the cancer has come back.

At first, your visits may be every 3 to 6 months. Then, the longer you’re cancer-free, the less often the visits are needed. After a few years, they may be done once or twice a year.

Having cancer and dealing with treatment can be hard, but it can also be a time to look at your life in new ways.

Call us at 1-800-227-2345 or talk to your cancer care team to find out what you can do to feel better.

You can’t change the fact that you have cancer. What you can change is how you live the rest of your life – making healthy choices and feeling as good as you can.