Do NF1 spinal tumors need surgery or meds?

Question

Hi doctor,

I have neurofibromatosis type 1, and lately, I have been getting pain in my spine and weakness in my leg. They found a tumor near the spine and are not sure if surgery is needed. Can these tumors turn cancerous? Also, is a MEK inhibitor something I could use to shrink it? What are the side effects, and does it help with pain, too?

Please advise.

Thank you.

Answer 1

Hi,

Welcome to icliniq.

I have read your query and can understand your concern.

Most neurofibromatosis type 1 (NF1) tumors are not cancerous, but some can turn into cancer. Signs like pain, fast growth, or weakness can be warning signs. So, your back pain and leg weakness need to be checked carefully.

If the tumor is pressing on your spine or nerves, causing pain or weakness, or if it looks suspicious. Then doctors may suggest surgery.

Mitogen-activated protein kinase enzyme (MEK) inhibitor is a medicine that can shrink some NF1 tumors, like Selumetinib. It may help with pain, too. It is usually used when surgery is risky or not possible.

There are side effects, but many are mild:

Rash.
Diarrhea.
Tiredness.
Rarely heart or eye problems.

Doctors check you often if you take it.

Ask your doctor if the tumor is the kind that MEK inhibitors can help. See if surgery is needed.

Ask about a specialist or clinical trial for NF1.

I hope this answers your questions.

Thank you.