How do you advise patients to tend to such sensitive areas with mucosal involvement (such as oral and vaginal/perianal areas)?
First, this a great question because many patients forget or feel too embarrassed to ask their physicians about these areas. Perhaps their providers may not look in these areas especially if the patient is not completely undressed for their exam. I stress to all of my patients getting in a gown undressed is always in their best interest. You wouldn’t want your cardiologist to examine only part of your heart so why would let a dermatologist only see a portion of your skin!
The approach to treating these sensitive areas is certainly not a “one size fits all” approach. Your dermatologist and oncologist must work together to find the best combination of therapies to address your disease including these more sensitive areas. It may be as simple as increasing the dose or frequency of your systemic therapy (your internal medications via pills or intravenous infusion) to better treat these more resistant areas.
While oral bexarotene (Targretin) is often an effective systemic therapy, topical bexarotene gel can find an effective and perhaps niche role in treating more sensitive and photoprotected areas. In my opinion this is where this medication finds its most useful role as other skin directed therapies are typically more effective, but more difficult to use in the anogenital region.
Topical nitrogen mustard mechlorethamine (Valchlor) must be used carefully in these areas as severe irritation may occur. However, this product may be used in these areas with less frequency or in conjunction with topical steroids to address the subsequent skin irritation.
Excimer laser may be implemented in treating harder to reach areas that might otherwise respond to phototherapy. Excimer lasers (such as XTRAC) administer ultraviolet B radiation in a more confined and controlled area with a potentially higher UV radiation dose.
Lastly, your radiation oncologist may be able to offer a safe and effective radiation option. Traditional radiation therapy carries the risk of significant morbidity and potential complications when applied to the oral mucosa and genital region. Complications such as poor wound healing, scarring/fibrosis, sexual dysfunction, and infertility have all occurred. Newer radiation therapy technologies, such as intensity-modulated radiation therapy (IMRT), have improved treatment outcomes while decreasing complications. If medical therapy has failed to benefit you it is worth asking your providers if radiation could be an effective and safe option for you.
There are many issues to consider when addressing cutaneous lymphoma involvement of the oral and anogenital regions. Unfortunately, there is no single agreed upon method or simple approach to treating every patient. As an informed patient, be sure to let your physicians know you have concerns and potentially lymphoma involvement in these sensitive areas so together you can work together to find a regimen that best fits your needs.
Answer provided by:
Charles E. Mount III, MD, FAAD
Vice Chair, Division of Dermatology
Allegheny General Hospital/Allegheny Health Network
While isolated lesions of mycosis fungoides on oral and/or genital skin is rare, it is not uncommon to develop patches, plaques, or tumors in the genital region in Stage 1B – IV disease. Lesions occurring on the lips, oral cavity, genitals, perineum and rectum involve mucosal skin, which is different than keratinized or hair-bearing skin. Mucosal sites are sensitive and lesions in these areas are associated with increased discomfort, both physical and psychological. Mucosal lesions must be identified by patients and physicians as they require additional attention and therapeutic planning. Many standard skin directed therapies such as topical steroids and phototherapy must be used with extreme caution on mucosal sites, and topical nitrogen mustard must be avoided altogether on the mucosa. Alternatively, topical therapies such as imiquimod have been used with some success, specifically on genital skin. In summary, each patient’s treatment plan should be ideally designed to address all areas of MF involvement and providers want and need to know if your disease affects sensitive mucosal sites.
Answer provided by:
Jennifer Alston DeSimone, MD, FAAD
Assistant Professor, Georgetown University Hospital
Department of Dermatology
Assistant Professor, Virginia Commonwealth University School of Medicine
Director, Cutaneous Lymphoma and High Risk/Transplant Dermatology
INOVA Melanoma and Skin Oncology Center