Good Afternoon
Does anyone else have NF1 (Neurofibromatosis) I was born with this and apparently it can be linked? Id be very appreciated if i can have any advise please. Ive bookmarked it to ask my oncologist when i go, but i would like to be prepared incase i think of any questions.
Wishing you all well.
Thank you for reading
Hi Jojodagooner,
Welcome to our Online Community here at Macmillan Cancer Support. I hope you find it a warm and welcoming place to ask questions and seek support. I’m Kirstine, one of the Cancer Information Nurses Specialists here.
It can sometimes be hard to understand all of the information about your situation as we only know a little of the detail based on what you tell us. I think you are saying that you have inherited condition called Neurofibromatosis, caused by a change to a gene called NF1. This is something you have lived with since you were born. I think you are also telling us that you have been diagnosed with stage 4 lung cancer and meet your consultant tomorrow to talk about treatment possibilities perhaps, and you are wondering if these two conditions could be connected.
First of all, I’m sorry to hear that you are faced with these diagnoses. I can appreciate this must feel like an uncertain time for you. It’s an interesting question you raise, and perhaps one I can only partially answer. The NF1 gene plays an important role in our bodies in many things, including preventing cancer growths, and when it doesn’t work so well people can experience a range of health issues associated with Neurofibromatosis Type 1. These can include non-cancerous tumours (neurofibromas) and, more rarely, cancers that impact certain nerve tissue types including the brain (gliomas) and the eyes (optic pathway gliomas). People with NF1 might also be more susceptible to breast cancer and will begin routine screening at an earlier age - usually 40 years old instead of 50 years old.
Lung cancer was generally not thought to be caused by inherited gene changes, but we are learning new things every day. Most of the information we know to date suggests the most common causes for developing lung cancers tends to be related to lifestyle or environmental exposures, for example tobacco smoke, radiation exposure, asbestos, or other chemical substances on a large scale.
More recent information gathering about the way people’s genes might be contributing to disease does seem to show a little more evidence of NF1 changes being present in some lung tumours though. But I think at the moment its not completely clear what this means and there needs to be more research on this. It may be possible that NF1 could be linked to lung cancer, but it seems to be very rare.
Some people might be more likely to develop certain cancers if they were born with certain gene changes, but this only accounts for around 5 – 10% of cancer cases overall. The rest are caused by changes that happen to genes after we are born, and these we would call ‘somatic’ changes and tend only to be found in the faulty area/ tumour tissue itself. In a lung tumour there can be changes to many different genes in that lump that are affecting how it grows. This type of information can be helpful to guide which treatments might be useful for each individual as we have many new targeted drugs that work best in presence of specific cell changes. It could be good to ask which treatments are best suited to your circumstance and if you are a candidate for any targeted drugs when you go to your appointment.
Your doctor tomorrow may be able to talk this over in more detail, and chat about what they think might be causing you to have this diagnosis.
Wishing you the best at your appointment tomorrow,
Kirstine – Macmillan
Cancer Information Nurse Specialist
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. Ref KDf/ GMcR
