Is surgery the only answer to multiple neurofibromas?
Q: I am a 42 years old man. I have neurofibromas over my body below the neck i.e. both my hands, abdomen, chest, thighs above knees, etc. They are particularly prominent on my hands. They appeared first in my left forearm more than 20 years back. The biopsy revealed same as benign neurofibroma. Then they started spreading all over the body. I have shown these neurofibromas to many doctors but the only treatment they offered was surgical removal but since there were so many, I decided against the same besides there was no guarantee against their recurrence. I also tried homeopathic treatment but to no avail. I feel they have somewhat stabilised and I am not noticing any significant changes. The doctors say that the chances of their turning malignant are one in a million. Also, they say that there is no treatment excepting surgical excision. Till now I have tried to feign ignorance about the same as they have not interfered in my normal life but they are a source of anxiety. My elder brother has a few of these on his right arm only and as far I know no one else in our family has these. What should I do? What is the prognosis (can I say if nothing has happened for more than 20 years, likelihood of them turning malignant are rather low)? Are there any alternative medicines like homeopathy other than allopathy or surgical excision to treat these?
A:Multiple neurofibromatosis is a hereditary disorder with a dominant mode of being passed on so that every generation will have some members affected to a greater or lesser degree. In some there will be only a few of these lesions and in others there will be more numerous swellings. By and large they are harmless and usually do not continue to grow. Very occasionally, one of them may become malignant. The chance of this happening is remote. The exact percentage of occurrence is immaterial since for the affected individual it makes no difference to know whether the chance is one in a million or more. There is no way of predicting whether this is going to happen in an individual. They cause troublesome symptoms only when they grow inside the spinal canal. Since it has not happened in your case it is unlikely to happen now. Surgery is advised only for cosmetic reasons, for pain or for increasing swellings. Otherwise, to the best of my knowledge there is no cure in any system of medicine. I feel anxiety is not called for since the lesions are stable in you for some time now. The chance of them becoming malignant is so low that it is not worth worrying about it.