Article previously published in the Cutaneous Lymphoma Foundation's Forum 2017 Issue 2 newsletter.
Being diagnosed with cutaneous lymphoma can be a difficult time. Significant anxiety can develop in having a new diagnosis of not only a cancer, but also one that is very rare, and of which many people are not aware. Additionally, as cutaneous lymphoma is a cancer of white blood cells within the skin, it can be even more confusing trying to figure out which physician (dermatologists, hematologist, oncologist) to work with.
After you are diagnosed with cutaneous lymphoma, with skin biopsy or blood work, I recommend (if possible) seeing a specialist within the field at least once. Most of the specialist locations are available on the Cutaneous Lymphoma Foundation website. You will likely undergo a workup to fully stage your disease - physical exam, blood work, and possibly imaging (CT scan, etc…). This will help your physician better develop a treatment plan for you.
If your disease has been diagnosed only within the skin, it is reasonable to seek out a dermatologist. You will likely need skin-directed therapy and this is generally accomplished through topical creams and gels as well as phototherapy, which is most often found in dermatology offices. Alternatively, if your disease has been identified in the blood or lymph nodes, you may want to consider seeing a hematologist or oncologist, in addition to a dermatologist. Your treatment will likely consistent of both skin-directed as well as systemic therapy (pills, shots, infusions).
As some hematologists specialize in non-malignant blood conditions, and conversely some oncologists do not routinely treat blood-based malignancy, it can be helpful for you to inquire about the conditions treated by your physician prior to your visit. Additionally, there are dermatologists who may not be comfortable treating cutaneous lymphoma. Again, it will be of benefit to reach out to the clinic to ensure he or she will be able to appropriately care for you.
Stuart Lessin, MD, Medical Director, KGL Skin Study Center
Larisa Geskin, MD, Associate Professor of Dermatology, University of Pittsburgh
Pierluigi Porcu, MD, Associate Professor of Internal Medicine, Division of Hematology-Oncology, Ohio State University Comprehensive Cancer Center
Marianne Tawa, RN, MSN, ANP, Nurse Practitioner, Dermatology and Cutaneous Oncology, Dana Farber Cancer Institute
If you are unable to see a cutaneous lymphoma expert or specialist, you should establish care with your local dermatologist or hematologist/oncologist. I recommend discussing with them whether they are comfortable treating your specific diagnosis. You can also provide them with the Cutaneous Lymphoma Foundation website, as there are educational materials not only for patients but also for physicians. Additionally, many physicians have reached out to me for consultations over email and the phone. If you are unable to travel to a specialist, your local physician may be able to speak with one to help better guide your care.
Learn more recommendations for managing your cutaneous lymphoma when a specialist isn't nearby.