Written by

Steven Horwitz, MD, Medical Oncologist, Memorial-Sloan Kettering Cancer Center

Uncommon diseases pose a number of challenges

One is the difficulty patients and physicians face in reaching a proper diagnosis.

A definitive diagnosis will help inform treatment decisions and potentially yield better patient-related outcomes over time. One of the key concepts for patients and their caregivers to understand is that a clear diagnosis may take time. The best approach is for patients to collaborate and work with their physicians to confirm what disease they have. In milder cases of cutaneous lymphoma, ruling out non-cancerous reactive processes resulting from medication, external environmental exposure, or inflammatory conditions of the skin is crucial. From there, physicians and patients can determine the appropriate next steps in care, treatment and medication regimen.

With a number of different cutaneous lymphoma types and subtypes, building a case for diagnosis based on multiple elements is vital. Assessment of a patient’s symptoms coupled with their history of skin lesions and consistent biopsies are all critical components that help build a patient’s individual case and accelerate the diagnostic process.

Assessing Skin Lesions

By definition, all cutaneous lymphomas present skin-related symptoms, the most common of which are skin lesions. When a patient presents with skin lesions, their physician will work to differentiate whether the lesions are the result of a reactive process versus a lymphoma of the skin. A reactive process, which can include the body’s response to a bug bite, allergic reaction to medication, or other inflammatory processes of the skin such as eczema or psoriasis, is the gathering of immune system cells, often non-cancerous “T-cell lymphocytes” in the skin to defend against and fight off invading entities; sometimes reactive processes occur for reasons we do not understand.

In contrast, skin lymphomas are cancerous proliferations or an excess of malignant T-cell lymphocytes growing within the skin.

Since reactive processes and other types of inflammation can trigger symptoms similar to those of cutaneous lymphomas, a physician’s expertise in conjunction with testing will help make the critical differentiation between the two. In some cases, test results may not be conclusive, which means they cannot clearly differentiate between a skin lymphoma versus reactive process.

When a diagnosis is not definitive, the patient should discuss options with their physician. Certain patients may wish or receive the recommendation to seek relief from symptoms by starting a non-lymphoma specific treatment such as a topical lotion, steroid cream or ointment, or even ultraviolet light therapy. Others may prefer or obtain a recommendation to have the physician take additional biopsies of the skin lesion to try to yield more conclusive results. However, to conduct an effective biopsy, the patient will need to be off topical steroids and ultraviolet light treatment regimens. While these treatments may provide temporary symptom relief, they can also mask potential symptoms of skin lymphomas and thus delay a patient’s definitive diagnosis.

What role does pathology play in my diagnosis?
Dr. Robson provides an overview of the important part pathology plays in diagnosing cutaneous lymphoma and helps answer the often asked question "why did it take so long to get diagnosed?"


Alistair Robson, BSc (Hons), MBChB, FRCPath and DipDermRCPath, Consultant Dermatopathologist, Lisbon Institute of Oncology

The Role of Consistent Biopsies

Consistent biopsies over time are an integral step in obtaining a proper diagnosis. A biopsy is a simple outpatient procedure that involves removing a small sample of tissue from the skin for examination. When a biopsy is performed, local anesthetic is given prior to the procedure. Following the procedure, the skin is sewn together with a couple of stitches, leaving a very small, almost invisible, scar.

A patient’s doctor, in conjunction with a pathologist, who is an expert in reading biopsy results, will work together to render the proper diagnosis. The pathologist analyzes the biological tissue and reviews all test results. Typically, the presence of an excess number of certain kinds of T-lymphocyte cells that are arranged in certain patterns within the biological tissue often gives strong clues or indicates to the pathologist that a patient has a skin lymphoma. A definitive diagnosis cannot be obtained without a biopsy and multiple biopsies are necessary to confirm the presence of excess T-lymphocyte cells and these consistent patterns.

Why are so many skin biopsies required?


Stuart Lessin, MD, Medical Director, KGL Skin Study Center, Broomall, PA

Pierluigi Porcu, MD, Director, Hematologic Malignancies and Hematopoietic Stem Cell Transplantation Division, Sidney Kimmel Cancer Center, Thomas Jefferson University Hospital (At time of publication: Associate Professor of Internal Medicine, Division of Hematology-Oncology, Ohio State University Comprehensive Cancer Center)  

Larisa Geskin, MD, Director, Cutaneous Oncology, Columbia University Medical Center (At time of publication: Associate Professor of Dermatology, University of Pittsburgh)

Finding a Balance

Cutaneous lymphoma is sometimes a progressive and most often an incurable disease. In certain cases, the disease may be mild and, even without strong treatment, may not progress over time, which is why it’s imperative to find a balance between knowing what a patient has and seeking treatment. A clear diagnosis may take time, so patients and their caregivers will require patience and persistence. Accuracy in determining whether a patient has cutaneous lymphoma, and which subset, is paramount in determining the best course of care and treatment. A premature diagnosis could expose the patient to insufficient or unnecessary medication regimens.

If a patient is ever dissatisfied with their diagnosis, they should seek a second opinion, conduct research and visit a cancer center that sees a high volume of cutaneous lymphoma patients. With or without a clear diagnosis, patients should remain under the care of an experienced physician they trust to foster understanding of their disease, diminish frustrations and ensure the road to diagnosis is as manageable as possible.

When is getting a second opinion a good decision? Our panel of experts offer their recommendations on when you should seek out another professional opinion.


Stuart Lessin, MD, Medical Directory, KGL Skin Study Center

Marianne Tawa, RN, MSN, ANP, Nurse Practitioner, Dermatology and Cutaneous Oncology, Dana Farber Cancer Institute

Larisa Geskin, MD, Director, Cutaneous Oncology, Columbia University Medical Center (At time of publication: Associate Professor of Dermatology, University of Pittsburgh)

Learn More

Which Type of Doctor Should I See and When?

Being diagnosed with cutaneous lymphoma can be a difficult time. Determining which physician (dermatologist, oncologist or hematologist) to work with can be confusing. Dr. Laura McGirt provides guidelines for choosing.

Staging Cutaneous T-cell Lymphoma

Staging describes how much of the body is affected by cutaneous lymphoma and where. Identifying your stage is important in determining appropriate treatment.

Finding Support

Finding Support
Cutaneous lymphoma will present you with challenges. But, try to remember that you do not have to cope with your illness alone.
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