Multidisciplinary Cutaneous Lymphoma Group

FAQ & Glossary

Other than the skin, what are the most common areas of my body that may be involved by Mycosis Fungoides?

Besides skin, the most common organs affected are lymph nodes, bone marrow, liver, spleen, and lungs.

Is Mycosis Fungoides contagious?

No. There is no evidence that Mycosis Fungoides can be transmitted by touch, saliva, blood, or other bodily fluids.

Will my Mycosis Fungoides condition affect any of my offspring?

No, in nearly all cases. There is a possibility your offspring may develop Mycosis Fungoides if it is clearly established that your family has a history of familial Mycosis Fungoides.

Is Mycosis Fungoides caused by an infection?

No. There is no medical evidence, which clearly identifies an organism, which causes Mycosis Fungoides.

Is Mycosis Fungoides caused by exposure to environmental chemicals or agents?

No. The weight of the evidence is that it is not.

What if I have had this skin rash for several years, and Mycosis Fungoides has just recently been diagnosed?

As noted previously, several biopsies over a span of time may be required to confirm the diagnosis, so the skin changes you saw for the years prior to diagnosis may not have been Mycosis Fungoides.

How is Mycosis Fungoides evaluated?

A complete medical history and physical examination should be performed initially. Special stains and tests may be performed on the skin tissue sample taken from the biopsy. Blood work is obtained for further studies, and depending on the extent disease, other tests may include imaging such as a chest X-ray, computerized tomography (CAT or CT) scan, or positron emission tomographic (PET) scans. Biopsies of lymph nodes may be necessary if there are enlarged nodes that are clinically suspicious for involvement with Mycosis Fungoides.

After all the tests have been performed and the diagnosis has been confirmed, your condition will be categorized into a staging classification used by most physicians called the TMN Staging Classification.

Is there a Mycosis Fungoides specialty clinic near where I live?

If a medical center does not have one at its location, they can usually refer you to the nearest one.

Is there a cure for Mycosis Fungoides?

It is possible, but very rare. In some instances after initial treatment, patients may remain in remission for 20 plus years. This can be considered cure. There is on-going medical research to better understand the disease, and hopefully, a cure for all cases will be found in the future. Although no cure has been found yet, we do have many treatments to manage Mycosis Fungoides, and in several cases, patients have long survivals with an excellent quality of life. At Stanford, we strive to improve your life in all facets.

How do I know which treatment for Mycosis Fungoides is best for me?

There have not been good studies demonstrating long term advantages of one therapy versus another. Which treatment is best for you will depend on several things, including the extent of your disease, your other medical issues, and toxicity profiles of the treatments. All this would be discussed with your physicians.

What is a biologic response modifier?

Biologic response modifiers are a group of therapies which work by enhancing and modifying the body's natural response to cancer.

What is the difference between lotions, creams, and ointments?

Lotions contain the most water and least oil compared to creams (more water and less oil than lotion) and ointments (least water and most oil of the three), making them feel less greasy. Ointments feel more greasy , but moisturize the skin the best. Also, steroids in ointment forms deliver higher concentration of medication than cream or lotion. For example, Lidex ointment would be a stronger class of steroid than Lidex cream.

What can you tell me about clinical trials in Mycosis Fungoides?

Medical research is continuously evolving. One type of research is clinical trials, which includes testing new therapies to determine if they are effective in certain conditions. Patients enter clinical trials for various reasons. Some may wish to benefit from evolving therapies. Others may enter the trial because conventional therapies have not been effective. Discussion of on-going trials should be done with the physicians who are caring for you. If you choose to enter a trial, it is necessary that you sign a consent form and qualify for the specific criteria outlined in the trial.

What is the risk of my Mycosis Fungoides condition becoming worse?

We have reviewed the data of the patients seen in our Multidisciplinary Cutaneous Lymphoma Clinic for the past 50 years here at Stanford, and the risk of your condition becoming worse is correlated to the extent of your skin disease and response to therapy. Compliance to treatment, close monitoring, and proper treatment are extremely important in decreasing your risk. At Stanford, our multidisciplinary team is dedicated to providing the best possible care available.


Glossary

Definitions for commonly used medical terms.

Lymphocyte Cell which is part of the body's immune response to microorganisms or foreign proteins. It is classified as a white blood cell. There are T lymphocytes and B lymphocytes. The cell involved in MF is a T-cell. T-cells are produced in the bone marrow or thymus, circulate in blood, and reside in lymph nodes as well as other organs, including the skin.
Erythroderma Redness and scaling of the entire skin, usually accompanied by severe itching. This can occur in MF, especially with the subtype called Sèzary syndrome.
Sèzary syndrome A rare type of MF where the skin is erythrodermic, lymph nodes are enlarged, and an excess number of abnormal appearing malignant T-cells (called Sezary cells) are in the blood.
TNM Staging Classification Standardized classification used to categorize the extent of disease seen in cancer. This classification is useful to physicians to tailor appropriate treatments for patients and provide other information, including average survival times or risk of developing worse disease.
Patches Term used in dermatology to describe individual skin lesions which show color and surface changes without changes in elevation on the skin surface and measure greater than 1 cm in diameter.
Plaques Term used in dermatology to describe individual skin lesions which show color and surface changes with changes in elevation on the skin surface (if you ran your finger over it, you could feel a raised area) and measure greater than 1 cm in diameter.
Nodules Term used in dermatology to describe individual skin lesions which are greatly raised lesions protruding from the skin like a dome.
Tumors Term used in dermatology to describe individual skin lesions which are similar in appearance to nodules, but usually larger. Some textbooks describe nodules as 1-2 cm in diameter and tumors as greater than 2 cm in diameter.
Allergic Contact Dermatitis An allergic skin reaction to foreign chemical or substances. A common example would be contact with poison oak. Topical steroids and anti-itch medication can usually help resolve the skin reaction and itchiness.

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