If you have cutaneous lymphoma (2023)

What is cutaneous lymphoma?

Lymphoma is oneRakwhich begins in white blood cells called lymphocytes (LIM-fo sites). Lymphomas can occur almost anywhere in the body. When lymphoma starts in the skin, it is called acutaneous lymphoma(Dearcutaneous lymphoma).

Lymphocytes are part of the body's immune system and usually help the body fight infections. There are 2 main types of lymphocytes:

  • B lymphocytes (B cells)
  • T lymphocytes (T cells)

Most cutaneous lymphomas begin in T cells.

Different types of lymphoma in the skin

There are many of themtypes of skin lymphoma. Many of them are very rare. Your doctor can tell you more about the type you have.

These are the medical names for the most common types of cutaneous lymphoma in the United States.

  • Fungal granulomas
  • Sesary's team

Questions to the doctor

  • Why do you think I have cutaneous lymphoma?
  • Is there a chance I don't have cutaneous lymphoma?
  • Can you write what type of skin lymphoma you think I have?
  • What will happen next?

How does the doctor know that I have cutaneous lymphoma?

Skin lymphomas can be seen and felt. They often start with a red or purple rash that is very itchy and may look like one of the following:

  • Small pimples
  • Flat surfaces that can be raised or lowered
  • Lumps or nodules under the skin

Lymphoma can affect only a small part of the skin or it can affect large parts of the body. Sometimes people with cutaneous lymphoma have other symptoms, such as fever, weight loss, and sweating.

Your doctor will ask you questions about yoursymptomsand your health and perform a physical examination. The doctor will look closely at the skin and may feel nearby lymph nodes (bean-sized clusters of immune cells) under the skin to see if they are involved. Cutaneous lymphomas can sometimes spread to the lymph nodes, causing them to swell or harden.

Tests that can be performed

It can be difficult for doctors to distinguish cutaneous lymphoma from other causes of skin rashes, so it sometimes takes a while to be sure. If your doctor thinks you may have cutaneous lymphoma, tests will be done. These are some of themirritableyou may need:

Biopsy:In this test, the doctor removes a piece of skin to check for cancer cells. This is often done under local anesthesia. This means you are awake, but the area being biopsied is numb.

A biopsy is the only way to know for sure if you have skin lymphoma. There are many types of biopsies. Each type has advantages and disadvantages. Which one to use depends on your case. Ask your doctor which type to use.

(Video) Mycosis Fungoides and Cutaneous Lymphomas

Sometimes biopsies may be done on other parts of the body, such as nearby lymph nodes or bone marrow (the soft, inner part of some bones). This is to see if the cancer has spread there.

Blood tests:Certain blood tests can tell your doctor more about the types of cells and chemicals in your blood.

X-ray of the chest:An X-ray may be taken to check for enlarged lymph nodes in the chest.

computed tomography:This is a special type of X-ray examination that provides detailed images. It can be used to look for enlarged lymph nodes or other organs.

MR scan:MRI uses radio waves and strong magnets instead of X-rays to create detailed images. This test is not often done for cutaneous lymphomas unless a CT scan cannot be done for some reason.

Ultrasound:In this test, a small wand is moved over the skin. It emits sound waves and picks up the echo that bounces off the tissue. The echoes are converted into an image on the computer screen. Ultrasound can be used to look for swollen lymph nodes in places such as the abdomen.

PET scan:In this test, you are injected with a special type of sugar that can be seen in your body with a special camera. If cancer is present, this sugar appears as "hot spots" where the cancer is. This test can help show if the lymphoma has spread. Sometimes this is done at the same time as a CT scan (so-calledPET/CT scan).

Questions to the doctor

  • What tests should I use?
  • Who will do these tests?
  • Where will it be performed?
  • How and when will I get the results?
  • Who will explain the results to me?
  • What should I do next?

How serious is my cancer?

If you have cutaneous lymphoma, your doctor will want to know how far it has spread. That's calledsceneCancer. Your doctor will want to know what stage your lymphoma is in so he can decide what type of treatment is best for you.

The stage is based on how the lymphoma has spread to the skin, as well as whether it has spread to other parts of the body.

Some types of skin lymphomas are assigned a grade, such as 1, 2, 3, or 4. The lower the number, the less spread the cancer is. A higher number, such as stage 4, indicates more serious cancer that has spread further. Be sure to ask your doctor about the stage of your cancer and what it means for you.

Questions to the doctor

  • Do you know the stage of lymphoma?
  • If not, how and when do you find out about the venue?
  • Can you explain what this scene means in my case?
  • How does stage affect my treatment options?
  • What will happen next?

What type of treatment should I use?

There are many ways to treat cutaneous lymphomas. The main types of treatment are divided into 2 groups:

(Video) Overview, Diagnosis And Staging of Cutaneous Lymphoma

  • Treatments focused only on the skin
  • Treatments that affect the whole body

Doctors may use one or both types of treatment for cutaneous lymphoma. The treatment plan that is best for you depends on:

  • The type of skin lymphoma you have
  • Lymphoma stage
  • The possibility that some type of treatment will cure the lymphoma or help in some other way
  • your age
  • Other health problems you have
  • Your feelings about the treatment and related side effects

Treatments focused only on the skin

For many cutaneous lymphomas (especially if they are small and have not spread), the first treatment is directed at the cutaneous lymphomas to avoid side effects in the rest of the body. There are many ways to do this.

Surgery:It is rarely the only way to treat cutaneous lymphoma, but it can be used to treat certain types of cutaneous lymphomas that can be completely removed. Even then, other types of treatment can be used.

Radiation:This treatment uses high-energy beams (such as X-rays or atomic fragments) to kill cancer cells. It can be used as the main treatment for some skin lymphomas. The treatment is very similar to an X-ray. The radiation is stronger, but still painless.

The most common side effects are skin changes (usually look like burns) in the treated area. If a large area of ​​the body is treated, it can result in the loss of all body hair and even the loss of fingernails and toenails.

Phototherapy, also known asUV light therapy:UV light can be used to treat some skin lymphomas. The treatment is performed several times a week using a special lamp similar to those used in solariums. Sometimes the drug is taken in pill form before each treatment to make it work better. This type of treatment is calledPUVA.

As with outdoor exposure to sunlight, UV treatment can cause burns. If the pills are taken as part of PUVA, they can make your skin very sensitive to sunlight, so you will need to protect yourself from sunlight in the days after treatment.

Current medications:These are drugs that are applied directly to (or deep into) the skin. They treat lymphoma while limiting side effects in other parts of the body.

  • Local steroids:These drugs affect immune cells (such as lymphoma cells) and can be very useful in treating some skin lymphomas. They can be applied to the skin in the form of ointments, gels, foams and creams or injected under the skin.
  • Current chemotherapy:Chemotherapy (chemotherapy) is a powerful drug used to treat cancer. Some chemotherapy drugs can be applied directly to the skin (usually as a cream, ointment, or gel) to treat cutaneous lymphomas that have not spread. Side effects may include redness and swelling at the injection site.
  • Topical retinoids:Retinoids are drugs related to vitamin A. They can affect certain genes in lymphoma cells that promote their growth or maturation. Some retinoids come in gel form that can be applied directly to the skin. Side effects may include redness, itching, swelling, and sensitivity to sunlight at the site of application.
  • Current immunotherapy:Imiquimod is a cream that, when applied to skin lymphomas, triggers an immune response that can help destroy them. This drug is mainly used to treat some other types of skin cancer, but some doctors may also use it to treat early forms of skin lymphoma. It can cause redness, swelling and itching at the application site.

Treatments that affect the whole body

These treatments are most helpful for skin lymphomas that are widespread or fast growing.

photopheresis,also known asECP:This treatment can kill lymphoma cells as well as help the body's immune system attack them.

For each procedure, blood is taken from the patient's vein. It enters a special machine that separates lymphocytes (including lymphoma cells). The cells are mixed with a drug that makes them sensitive to light and then exposed to UV light. They are then mixed with the rest of the blood and returned to the patient's vein. Treatment usually lasts a few hours.

(Video) Newly Diagnosed Cutaneous T-Cell Lymphoma (CTCL)

This treatment can make your skin very sensitive to sunlight, so protect yourself from the sun for a few days after the treatment.

Chemotherapy (chemotherapy):Chemotherapy drugs that are taken in tablet form or injected into the blood can reach all parts of the body. Chemotherapy may be used if skin lymphoma is advanced and no longer improving with other treatments or if it has spread to other parts of the body.

Many different chemotherapy drugs can be used. Often one drug is tried first, but sometimes more than one drug is used. Chemotherapy is given in cycles or rounds lasting several weeks. There is a break after each round of treatment.

Chemotherapy can make you feel very tired, sick to your stomach and cause hair loss. These problems usually disappear after treatment is completed. Some chemotherapy drugs can have other side effects. There are treatments for most chemotherapy side effects. If you have side effects, talk to your oncology team so they can help you.

Targeted drugs:Targeted drugs work by targeting parts of cancer cells that distinguish them from normal cells. These drugs do not work in the same way as chemotherapy drugs. They can sometimes help when chemotherapy drugs don't, and they often have various side effects. Some are given intravenously, while others are taken in pill form.

Side effects depend on the medicine you are taking. Talk to your cancer team to learn more about possible side effects.

Immunotherapy:Some drugs work by helping the body's immune system attack cancer cells. These drugs are administered intravenously.

Side effects depend on the medicine you are taking. Talk to your cancer team to learn more about possible side effects.

retinoids:These are drugs related to vitamin A. They can be taken in tablet form for common skin lymphomas.

Side effects may include headache, nausea, fever, thyroid problems, and eye problems. Some retinoids can cause more serious side effects, such as fluid retention.

Transplantation of stem cells:This treatment (also known as a bone marrow transplant) may be an option if other treatments no longer work. It allows doctors to give higher doses of chemotherapy than they would otherwise be able to (because of the serious side effects it would cause).

(Video) How Cutaneous T-cell Lymphoma is Diagnosed and Treated

First, the person receives high doses of chemotherapy. This can destroy the bone marrow where new cells are made. To fix this, the person receives an injection of stem cells (usually from another person). The stem cells go to the bone marrow, where they start producing new blood cells.

A stem cell transplant is a complex treatment that can cause serious side effects and may require a long hospital stay. This should only be done in a center with a team of doctors who are experts in this treatment.

Clinical trials

Clinical trials are scientific research that tests new drugs or other treatments on people. They compare standard treatments with others that might be better.

If you want to learn more about clinical trials that may be right for you, first ask your doctor if your clinic or hospital conducts clinical trials. SeeClinical trialsFind out more.

Clinical trials are a way to obtain the latest anti-cancer drugs. They are one of the best ways doctors can find better ways to treat cancer. But they may not be for everyone. If your doctor can find one that studies the type of cancer you have, it's up to you whether you want to participate. And if you sign up for a clinical trial, you can always stop at any time.

What about other treatments I hear about?

When you have cutaneous lymphoma, you may hear about other ways to treat the cancer or treat the symptoms. These do not always have to be standard medical procedures. These treatments can bevitamins, herbs, special diets and more. You may be considering these treatments.

Some of them may help, but many have not been tested. For some, it turned out not to help. Some were even harmful. Talk to your doctor about anything you're thinking about, whether it's vitamins, diet, or anything else.

Questions to the doctor

  • Should I see other types of doctors?
  • Cotreatmentdo you think you are the best for me?
  • What is the purpose of this treatment? Do you think it can cure lymphoma?
  • Should I have other forms of treatment?
  • What is the purpose of these treatments?
  • What side effects can I get from these treatments?
  • What can I do about side effects that may occur?
  • Is there a clinical trial that might be right for me?
  • What about the special vitamins or diets my friends tell me about? How do I know if they are safe?
  • Should I start treatment right away?
  • What do I need to do to be prepared for treatment?
  • Is there anything I can do to make the treatment better?
  • What is the next step?

What happens after the procedure?

Some people may continue treatment, while others may stop at some point. You will be happy when the treatment is over. But it's hard not to worry that the cancer will come back. Even if the cancer never comes back, people still worry about it. You will be seeing an oncologist for many years after treatment. Be sure to visit them allreturn visit. You may need tests, blood tests and scans to see if the cancer has returned. Initially, your visits may be several months apart. So the longer you are cancer free, the fewer visits you will have.

Having cancer and coping with treatment can be difficult, but it can also be a time to look at your life in a new way. You may be wondering how you can improve your health. Call us at 1-800-227-2345 or talk to your cancer team to find out what you can do to get better.

You cannot change the fact that you have cancer. What you can change is how you live the rest of your life - by making healthy choices and being the best you can be.


How long can you live with cutaneous T-cell lymphoma? ›

There is no known cure for CTCL, though some patients have long-term remission with treatment and many more live symptom-free for many, many years. Research indicates that most patients diagnosed with CTCL (mycosis fungoides type) have early stage disease, and have a normal life expectancy.

How quickly does cutaneous lymphoma spread? ›

Most are slow growing and not aggressive. They usually proceed over many years, typically do not make the patient seriously ill, and can be treated multiple times. Some rare types of cutaneous lymphomas can be more aggressive (fast growing and spreading).

How serious is cutaneous T-cell lymphoma? ›

Cutaneous T-Cell Lymphoma is a form of cancer that causes immune system dysfunction that leads to skin health concerns. Like other forms of cancer, Cutaneous T-Cell Lymphoma can be deadly, especially if the condition goes untreated until it reaches the advanced stages.

Can cutaneous lymphoma be misdiagnosed? ›

In milder cases of cutaneous lymphoma, non-cancerous reactive processes such as rashes resulting from medications, external environmental exposures, or inflammatory conditions of the skin (like eczema) can be easily confused with cutaneous lymphoma.

What are the advanced stages of cutaneous T-cell lymphoma? ›

Understanding the Stages of Cutaneous Lymphoma
  • Stage 1: Dry, red, scaly patches or bumps on skin, but no tumors. ...
  • Stage 2: Dry, red, scaly patches or bumps on skin, but no tumors. ...
  • Stage 3: Most of the skin is dry, red, scaly, or bumpy, and may have tumors. ...
  • Stage 4: Skin is dry, red, scaly, or bumpy, and may have tumors.

Can cutaneous T-cell lymphoma go into remission? ›

Like other lymphomas, cutaneous T-cell lymphoma can spread throughout the body and to other organs. If this happens, doctors may consider chemotherapy, or, in rare cases, peripheral blood transplantation. Treatment of CTCL can help to keep symptoms to a minimum, and even lead to remission.

Can you live with cutaneous lymphoma? ›

The reality is that cutaneous lymphoma is a chronic disease with a high survival rate but no cure – at least not yet. Over the course of your disease, there may be times when symptoms are present and quite intense and other times when you may experience a period of remission, sometimes many years long.

Can cutaneous T-cell lymphoma spread to brain? ›

Brain metastasis from systemic or cutaneous lymphoma is infrequently encountered. We present a case report of cutaneous T-cell lymphoma (CTCL) that metastasized to the brain. A literature review identified fourteen other cases of brain infiltration with CTCL.

What is the stage of cutaneous lymphoma? ›

Stages 1 and 2 are generally considered early stages, during which cutaneous T-cell lymphoma is more treatable. In advanced-stage disease, including stages 3 and 4, a systemic treatment plan may be necessary to address more complex and widespread cancer.

How does cutaneous lymphoma start? ›

Cutaneous T cell lymphoma

Many types of CTCL start as flat red patches on the skin, which can sometimes be itchy. With darker skin, the patches may appear lighter or darker than the surrounding skin. In the early stages, the skin patches can look like other common conditions such as eczema or psoriasis.

How does cutaneous T-cell lymphoma start? ›

The exact cause of cutaneous T-cell lymphoma isn't known. In general, cancer begins when cells develop changes (mutations) in their DNA. A cell's DNA contains instructions that tell a cell what to do. The DNA mutations tell the cells to grow and multiply rapidly, creating many abnormal cells.

What is the average age for cutaneous T-cell lymphoma? ›

About Cutaneous T-Cell Lymphoma

The incidence of CTCL increases with age, with an average onset between 50 and 60 years.

Does cutaneous lymphoma show up in blood work? ›

Blood tests measure the amounts of certain types of cells and chemicals in the blood. They are not used to diagnose lymphoma, but they can sometimes help determine how advanced the lymphoma is.

Does cutaneous lymphoma cause fatigue? ›

Most people who have cancer experience fatigue at some point. It's a common symptom in people with blood cancer, including lymphoma. Many people who are treated with chemotherapy and radiotherapy report feeling fatigued at some point during their treatment.

How rare is cutaneous lymphoma? ›

How common are cutaneous T-cell lymphomas? These are rare illnesses. Healthcare providers estimate mycosis fungoides, the most common form of cutaneous T-cell lymphoma, affects 1 in 1 million people in the United States.

Who is most likely to get cutaneous T-cell lymphoma? ›

Older people and those who have a weakened immune system may be more at risk for this type of cancer. The most common symptom is dry, red, itchy, scaly rashes or patches on the skin.

What is the work up for cutaneous lymphoma? ›

Required procedures to stage cutaneous lymphoma include a complete physical exam (including a thorough skin exam), skin biopsy (removal of a small piece of tissue) for examination under the microscope by a pathologist (a doctor who studies tissues and cells to identify diseases), and blood tests (labs).

What chemo for cutaneous T-cell lymphoma? ›

Methotrexate is a form of chemotherapy given to people with cutaneous T-cell lymphoma. It prevents lymphoma cells from using folic acid, a B vitamin, to create more cancer cells. Methotrexate is either taken by mouth or given through an injection.

How common is cutaneous lymphoma? ›

Skin lymphoma (also known as cutaneous lymphoma) is a rare form of skin cancer that is not linked to sun exposure. There are several types of skin lymphoma and, as a category, they are rare, affecting about 6 in 1 million people.

How bad is skin lymphoma? ›

Although skin lymphomas are a form of cancer, in many cases they are very slow growing and do not affect life expectancy. They behave more like a long-term (chronic) skin condition than a cancer. Many people with a slow-growing skin lymphoma don't need treatment straightaway. Instead, the doctor monitors the condition.

What is the longest you can live with lymphoma? ›

More than 70 percent of people live longer than 5 years after their diagnosis. Your outlook depends on factors such as your overall health, age, and the type of non-Hodgkin's lymphoma you have. Your healthcare team can give you the best idea of what to expect.

What is the most survivable lymphoma? ›

Follicular lymphoma

almost 90 in 100 people (almost 90%) survive their cancer for 5 years or more after diagnosis.

Does cutaneous lymphoma cause hair loss? ›

Individuals with cutaneous lymphoma may notice a loss of hair, or alopecia, which can affect any area of the body.

How do you know if lymphoma has spread to the brain? ›

Symptoms of brain lymphoma can include:

Headaches. Double vision. Loss of hearing. Nausea and vomiting.

Does cutaneous T-cell lymphoma run in families? ›

Genetics: Genetic factors might be involved in the development of some types of T-cell skin lymphoma. Mycosis fungoides, the most common type, can occasionally run in families but this is very rare.

Is there a cure for cutaneous lymphoma? ›

While CTCL cannot be cured, advances in treating this cancer are making these goals possible for more patients. Today, many people who have CTCL die of another cause.

What part of the body itches with lymphoma? ›

Itching caused by lymphoma can affect: areas of skin near lymph nodes that are affected by lymphoma. patches of skin lymphoma. your lower legs.

How do you test for cutaneous lymphoma? ›

Skin biopsies.

A procedure to cut away a small sample of skin (skin biopsy) is usually needed to diagnose cutaneous T-cell lymphoma. The skin might be cut with a circular tool (punch biopsy). For larger lesions and tumors the biopsy might be done with a small knife (excisional biopsy).

What is the most common primary cutaneous lymphoma? ›

Mycosis fungoides (MF) is the most common primary cutaneous lymphoma, which affects mainly adults, with a slight predominance of males. The median age at diagnosis is 55–60 years.

What is the marker of cutaneous T-cell lymphoma? ›

CD markers are monoclonal antibodies that target cell surface molecules on leukocytes and antigens from other cells. T-cell processes are typically CD3+, CD20-, CD45+ while B-cell processes are typically CD3-, CD20+, and CD45+. Other CD markers are used to further delineate cutaneous lymphomas.

What does cutaneous T-cell lymphoma look like? ›

There are several ways cutaneous T cell lymphoma can appear. In its early stages, it can look like flaky, dry skin, so it's often mistaken for eczema. It can also appear scaly like psoriasis and even as blisters on the skin. As the disease progresses, it can continue to develop into thicker patches known as plaques.

What are the chances of surviving T-cell lymphoma? ›

Overall, people with non-Hodgkin lymphoma (including T-cell lymphoma along with other types) have a five-year RS of 66.9 percent. Those with T-cell NHL specifically have a slightly lower survival rate of 63.1 percent. Survival may be further broken down by type of T-cell NHL.

Can a dermatologist tell if you have lymphoma? ›

Skin biopsies

A biopsy is needed to diagnose lymphoma of the skin. There are several types of skin biopsies, and the doctor's choice of which one to use is based on each person's situation. Usually a skin biopsy is done by a dermatologist.

What does lymphoma itch feel like? ›

Itching associated with lymphoma can feel like it is occurring below your skin and can't be satiated by scratching. It can be extremely distracting and usually isn't helped by creams or medications. Itching from lymphoma tends to occur more frequently on the lower half of the body and often gets worse at night.

What will your CBC look like with lymphoma? ›

Complete blood count (CBC)

If lymphoma disrupts red blood cell production in the bone marrow, you may have a low red blood cell count, or anemia. White blood cells, which fight infection. A low white blood cell count can occur due to lymphoma or other conditions, like an autoimmune disorder.

Do you sleep a lot with lymphoma? ›

Lymphoma often makes it difficult to sleep. Many people who have lymphoma deal with disrupted sleep schedules, painful symptoms, uncomfortable treatment side effects, or anxious thoughts. Having trouble sleeping can often take a toll and lead to a worse quality of life.

Does cutaneous lymphoma respond to steroids? ›

Steroids are often part of treatment for both Hodgkin and non-Hodgkin lymphoma, including skin (cutaneous) lymphoma.

How do I know if my lymphoma is getting worse? ›

you develop 'B symptoms' (night sweats, weight loss and fevers) your lymph nodes or spleen start to grow quickly or you develop swollen lymph nodes in new places. your blood tests or other test results show that lymphoma is affecting your major organs or is growing in your bone marrow.

What is the mortality rate for cutaneous T-cell lymphoma? ›

The 4-year survival rate approaches 22%. Although a small percentage of patients may undergo spontaneous remission, a more aggressive behavior is more likely. Staging for systemic lymphoma and multiagent chemotherapy is recommended.

Is cutaneous lymphoma a terminal? ›

Most cutaneous T-cell lymphomas grow very slowly and aren't life-threatening. Rarely, people with cutaneous T-cell lymphomas develop serious forms of the condition. Healthcare providers have treatments to ease symptoms, but they can't cure the lymphomas.

Has anyone survived T-cell lymphoma? ›

Angioimmunoblastic T cell lymphoma (AITL)

Generally for people with angioimmunoblastic T cell lymphoma (AITL): almost 35 in 100 people (almost 35%) survive for 5 years or more.

What is Stage 2 cutaneous T-cell lymphoma? ›

Stage 2A means that there are patches or plaques on the skin and the lymph nodes are enlarged but they do not contain abnormal lymphoma cells. Stage 2B means that there are one or more raised lumps or tumours in the skin and the lymph nodes may or may not be enlarged but do not contain lymphoma cells.

What is the most common cause of cutaneous lymphoma? ›

The exact cause of cutaneous T-cell lymphoma isn't known. In general, cancer begins when cells develop changes (mutations) in their DNA. A cell's DNA contains instructions that tell a cell what to do. The DNA mutations tell the cells to grow and multiply rapidly, creating many abnormal cells.

Does cutaneous lymphoma come and go? ›

It tends to progress in phases, starting with red, scaly patches on the skin that can last for months or years. Over time, these patches may get thick and eventually form raised tumors, called plaques. The rashes may go away and come back for a time, or they may be always there.


1. Cutaneous T-Cell Lymphoma: The Role of the Dermatologist in Diagnosing and Treating
2. My Personal Journey with Cutaneous Lymphoma: Brett W.
3. Choosing the Right Treatment for Cutaneous T-cell Lymphomas
4. Cutaneous T-Cell Lymphoma (CTCL) Treatment Options
5. Who gets Cutaneous T-cell Lymphoma?
(Lymphoma Australia)
6. Cutaneous Lymphoma: Is This Skin Cancer?


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