Have I Got Neurofibromatosis / Nerve Related Cancer?

[Toby2000]

Six or greater spots of at least 5mm in diameter in pre-pubertal children and at least 15mm in post-pubertal individuals is one of the major diagnostic criteria for NF1.^[9]

I have about 9 of these spots, only one of them is larger but it's the fact that I'm getting more that concerns me

[Toby2000]

I looked in the mirror and it doesn't look that bad when viewed from far away, they're still relatively small and only take up a small space in the middle of my upper chest with a few more scattered around but I'm gonna get it looked at anyway

I really can't win can I?

[Scass]

I looked in the mirror and it doesn't look that bad when viewed from far away, they're still relatively small and only take up a small space in the middle of my upper chest with a few more scattered around but I'm gonna get it looked at anyway

I really can't win can I?

I mean, you can win. You just have to deal with the anxiety.

Although now I read that your sister had cancer in childhood I can see where your health anxiety stems from.


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[Scass]

Also, why the hell did you cancel your appointment!! That doctor was trying to give you the help you need & deserve.


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[Toby2000]

I mean, you can win. You just have to deal with the anxiety.

Although now I read that your sister had cancer in childhood I can see where your health anxiety stems from.


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Ironically I wasn't worried about her having cancer at the time because I was only 7-8 and didn't really know it was as serious as it was

[Toby2000]

Also, why the hell did you cancel your appointment!! That doctor was trying to give you the help you need & deserve.


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It was never booked in the first place and I was feeling much more positive so decided not to book it this morning, but then this worry came later

I can go back to see her next Tuesday because that's the day she works alongside Friday

[Toby2000]

Well, it looks like they are cafe au lait spots

These are cafe au lait spots and they look like mine: https://www.mayoclinic.org/-/media/k...-lait-spot.jpg

What am I going to do?Because although NF-1 can be harmless and people can live long lives with it, it can also result in cancer sometimes

[Toby2000]

A clinical diagnosis is the most common way doctors diagnose NF1. A doctor will diagnose NF1 if your child has two or more of the following:

• six or more café-au-lait spots, at least 0.5 cm in children or 1.5 cm in adults
• two or more neurofibromas on or under the skin, or one plexiform (deep tissue) neurofibroma
• axillary (armpit) or inguinal (groin) freckling
• optic pathway glioma, also called a visual pathway tumour
• two or more Lisch nodules
• bone changes such as bowing of the long bones
• a close relative (parent, child or sibling) with a confirmed diagnosis of NF1

It's THAT EASY to get diagnosed with it?

I only have one of those symptoms, the cafe au lait spots, but I do have one freckle next to my armpit and a freckle next to my groin on the left side

And my sister had a nerve related cancer so that could mean I may have nerve problems too?

This feels set in stone for me now

[BlueIris]

As well as bowel cancer?

Toby, have you learned nothing?

[ErinKC]

You said they started showing up a few years ago. Do you have annual check ups with your GP? I would assume you've been to a doctor in the past 4 years at some point where they would have noticed these spots. There's nothing wrong with noticing new spots on your body and having them looked at, but you know that you also have health anxiety so any visit with your doctor should include a discussion on that!