Neurofibromas and Lipomas: Surgical Risks and Health Tips

Lipoma or neurofibroma

Hello, doctor.
I was diagnosed with neurofibromatosis in my childhood, and I have multiple café-au-lait spots and various sizes of tumors on my body, including lipomas and fibromas.
I have also undergone surgery to remove some tumors.
Recently, I read an article stating that removing neurofibromas might damage surrounding healthy cells, which could stimulate the secretion of hormones with repair functions, making neurofibromas more likely to grow (not necessarily recurring at the surgical site).
This has made me concerned about whether removing neurofibromas will lead to the growth of more fibromas.
(I am considering removing a larger one.)
Additionally, could the removal of lipomas also potentially induce the growth of other lipomas? Can excessively large neurofibromas lead to malignant transformation? What lifestyle considerations should neurofibromatosis patients keep in mind? Is there a need for a comprehensive health check-up? I have been taking health supplements recently, one of which is soy lecithin.
Could this intake affect the proliferation of neurofibromas? The more medical articles I read, the more worried I become about my health! Thank you in advance for your response, doctor.

Xin You, 30~39 year old female. Ask Date: 2020/04/08

Dr. Li Zhonghuai reply Surgery

Hello! Your situation with tumors seems to be ongoing, and it is recommended to address any symptomatic ones or those that are rapidly increasing in size.
A full health check-up is not necessary at your age, but if you have insurance, you may consider doing it.
There is no need to take health supplements; maintaining a balanced diet, avoiding smoking and alcohol, and steering clear of secondhand and thirdhand smoke is sufficient.
Just go about your daily life.
Many articles are case reports that may appear only once in several years, so they should be taken as references.
UpToDate is more objective, but it requires an account, and non-medical personnel cannot access it.
Take care! Changhua Hospital is concerned about you!

Reply Date: 2020/04/08

More Info

Neurofibromas and lipomas are benign tumors that can occur in various parts of the body. Neurofibromas are associated with neurofibromatosis, a genetic disorder that causes the growth of tumors on nerves, while lipomas are soft tissue tumors made up of fat cells. Your concerns regarding the surgical removal of these tumors and the potential for new tumors to develop are valid and deserve careful consideration.

Surgical Risks and Considerations
When it comes to the surgical removal of neurofibromas, there are several factors to consider. While surgery can effectively remove symptomatic or cosmetically concerning tumors, there is a risk of damaging surrounding healthy tissue. This can lead to complications such as nerve damage, which may result in pain, numbness, or weakness in the affected area. Additionally, there is a possibility that the surgical site may stimulate the growth of new tumors, although this is not universally accepted and can vary from patient to patient.

For lipomas, the surgical removal is generally straightforward and carries a lower risk of complications compared to neurofibromas. However, similar concerns about the potential for new lipomas to develop post-surgery exist. While there is no definitive evidence that removing a lipoma will cause more to form, some patients report experiencing new lipomas after surgery.

Size and Potential Malignancy
Regarding the size of neurofibromas, larger tumors can sometimes lead to complications, including pain or functional impairment, depending on their location. While most neurofibromas are benign, there is a small risk that they can undergo malignant transformation, particularly in patients with neurofibromatosis type 1 (NF1). Regular monitoring and consultation with a healthcare provider are essential to assess any changes in size or symptoms.

Lifestyle Considerations
For individuals with neurofibromas, maintaining a healthy lifestyle is crucial. This includes:
1. Regular Check-ups: Routine follow-ups with a healthcare provider can help monitor the growth of existing tumors and the development of new ones. While a full-body health check may not be necessary unless symptoms arise, staying vigilant about changes in your body is important.

2. Balanced Diet: A nutritious diet can support overall health. While specific supplements like soy lecithin are generally considered safe, there is no conclusive evidence linking them to the growth of neurofibromas. However, it's always best to discuss any supplements with your healthcare provider.

3. Avoiding Triggers: If you notice that certain activities or environmental factors exacerbate your symptoms, it may be beneficial to avoid them. This could include managing stress, avoiding excessive sun exposure, and steering clear of known irritants.

4. Physical Activity: Engaging in regular physical activity can improve overall health and well-being. However, if you experience pain or discomfort, consult your doctor about appropriate exercises.

Conclusion
In summary, while surgical removal of neurofibromas and lipomas can be beneficial, it is essential to weigh the risks and benefits with your healthcare provider. Regular monitoring, a healthy lifestyle, and open communication with your medical team can help manage your condition effectively. If you have specific concerns about your health or the impact of certain supplements, it is always advisable to consult with a healthcare professional who can provide personalized advice based on your medical history and current condition.

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