New Articles on the Removal of Cutaneous Neurofibromas
At NF Midwest’s Symposium and iNFo Fair last Saturday, November 9th, we were very fortunate to have Dr. Lu Le speak about the removal of cutaneous neurofibromas (cNFs) in neurofibromatosis type 1. Dr. Le is a professor of Dermatology and neurofibromatosis researcher at the University of Texas Southwestern Medical School. He is also a clinician with their NF clinic.
At the symposium Dr. Le talked about surgical and medicinal options for removing cNFs, including a technique he’s developed that he believes can be performed by any health care provider (including general practitioners) to remove multiple tumors at a regular medical office visit. He also went over all the other various options for removing cNFs. Unfortunately, we can’t provide the slides or a recording of the presentation due to patient privacy concerns, however, most of what Dr. Le covered can be found in two articles that he helped produce. In the article called Robust Surgical Approach for Cutaneous Neurofibroma in Neurofibromatosis Type 1 there is a video that shows how he removes cutaneous neurofibromas. It may be helpful to provide this link to a doctor who is willing to remove cNF. The other article, Management of Cutaneous Neurofibroma: Current Therapy and Future Directions provides great information on the many different ways of treating cNFs.
Note: This information is not a substitute for good care and is not meant to offer ANY medical direction. We strongly encourage patients with NF1 to consult with doctors who are knowledgeable in NF. However, it is important as a patient that you be informed.
Understand that CUTANEOUS neurofibromas exist on, and in the skin, not below ALL the layers of skin. They CAN be entirely removed as they only involve small nerves of the skin. Some surgeons don’t remove the entire fibroma either by accident or by choice. For instance, some physicians “shave” them off because they believe it creates less scarring and a better look. If they aren’t entirely removed they can grow back leading to scarring and there is always the possibility of new cNFs popping up.
Also, while some neurofibromas are obviously cutaneous, some are not so obvious and may actually be small PLEXIFORM neurofibromas. The “bump” may be just below a layer or two of skin and it MAY be a cutaneous neurofibroma that exists in the skin OR it MAY be a plexiform neurofibroma. A plexiform neurofibroma usually extends beyond the lower layers of the skin and involves more nerves. If it is a plexiform it may be more difficult or impossible to remove without causing unacceptable nerve damage and it may grow back and even may grow back more aggressively. Note that these plexiform neurofibromas should be investigated quickly and thoroughly if they grow suddenly as this can be an indication of a malignancy. Cutaneous neurofibromas are not known to turn cancerous.
To summarize, fibromas below the skin may be a cutaneous neurofibroma and can be removed OR it may be a plexiform neurofibroma which is much more complicated. It is VERY important to know what kind of neurofibroma it actually is if it isn’t well defined above the skin.
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.