Do Neurofibromas Grow Back After Surgical Removal?

The short answer is that it depends on the type of neurofibroma. A common myth in the NF1 community is that surgery “angers” tumors and causes them to grow back worse. However, if a cutaneous neurofibroma (the small bumps on the skin) is completely and cleanly removed, it usually does not grow back in that exact spot ^[1][2]. On the other hand, plexiform neurofibromas—which grow deeply along and inside nerve networks—are much more difficult to remove completely and have a high rate of regrowth ^[3][4].

Understanding the difference in how these two types of tumors respond to removal can help you make informed decisions about your care.

Cutaneous Neurofibromas

Cutaneous neurofibromas develop on or just under the surface of the skin. Because they are typically localized and less entangled with critical structures, they can often be removed entirely.

Research shows that when these skin tumors are fully excised, most patients do not experience regrowth in the specific area where the surgery was performed ^[1][2].

So why does it sometimes seem like they grow back? Because NF1 is an underlying genetic condition, your body continues to have the potential to grow new neurofibromas. It is common for a brand-new tumor to develop in the skin immediately adjacent to a surgical scar ^[1]. This is not the original tumor growing back “worse,” but rather a new tumor forming nearby.

Removal Methods and Scarring
When treating cutaneous tumors, a dermatologist or plastic surgeon might use standard surgical excision, CO2 lasers, or electrodesiccation (using an electric current to destroy the tissue). While these methods are effective for getting rid of the tumor, they do carry a risk of scarring or skin pigment changes ^[5][6]. For many patients, the decision to remove a skin bump involves weighing the bother of the tumor against the appearance of a potential scar.

Currently, there are no FDA-approved medical treatments (like pills or creams) to shrink cutaneous neurofibromas. While MEK inhibitors (discussed below) are used for deep tumors, clinical trials have shown they do not significantly shrink cutaneous neurofibromas and can actually cause bothersome acne-like skin rashes ^[7][8].

Plexiform Neurofibromas

Plexiform neurofibromas behave very differently. Instead of forming a distinct, self-contained lump, these tumors grow diffusely along the length of a nerve and its branches, often infiltrating the surrounding healthy nerve tissue. Managing them typically requires a specialized surgical oncologist or neurosurgeon.

Because of this complex, intertwined growth, achieving a gross total resection (complete removal) is often impossible without causing severe nerve damage, loss of function, or substantial bleeding ^[3][9][10].

When a surgeon cannot safely remove the entire tumor, they perform a subtotal resection (partial removal). The tumor tissue left behind will continue to grow, which is why recurrence rates for plexiform neurofibromas are so high ^[11]. Even when a tumor appears to be completely removed to the naked eye, microscopic residual tissue can lead to regrowth over time ^[3][12]. Due to this, surgically managing plexiform neurofibromas can sometimes require multiple operations over a patient’s lifetime ^[4][13].

Medical Alternatives to Surgery

Because plexiform neurofibromas are difficult to remove and likely to regrow, surgery is no longer the only option. MEK inhibitors, a type of targeted therapy drug, have become an important alternative. For example, the drug selumetinib is FDA-approved specifically for pediatric patients (2 years and older) with symptomatic, inoperable plexiform neurofibromas, and has been shown to successfully shrink or halt the growth of these complex tumors ^[14][15].

For adult patients, access to MEK inhibitors may involve off-label use or enrolling in clinical trials, as broad FDA approval for adults is still evolving ^[16]. It is also important to note that these medications are not risk-free alternatives to surgery; they come with their own side effects, requiring regular monitoring for dermatologic rashes, gastrointestinal issues, and cardiac changes ^[14].

If you are considering surgery for any type of neurofibroma, it is crucial to consult with an NF specialist who can accurately identify the tumor type, discuss the realistic chances of regrowth, and weigh all available treatments.