View Full Version : Have I Got Neurofibromatosis / Nerve Related Cancer?
Hi everyone,
I was going to take a break from the forum and I will get round to replying to everything on my other thread which is concerning bowel cancer but something sickening just struck me
I'm now seriously worried about these marks on my skin
I first started seeing them only in the middle of my chest around 2-3 years ago, maybe even 4, but over the past year they've started to spread down my chest slowly
https://imgur.com/a/RAyV61A This is taken from an above angle
Now I read that these suddenly appearing and spreading can be caused by a condition called neurofibromatosis
The scary thing is that my sister had a childhood cancer called ganglioneuroblastoma or something and that was also related to the nerve tissues
https://www.nhs.uk/conditions/neurofibromatosis-type-1/symptoms/
In most cases, the skin is affected, causing symptoms such as:
pale, coffee-coloured patches (café au lait spots (https://www.nhs.uk/conditions/birthmarks/#pigmented-birthmarks))
soft, non-cancerous tumours on or under the skin (neurofibromas)
clusters of freckles in unusual places – such as the armpits, groin and under the breast
problems with the bones, eyes and nervous system
https://www.nhs.uk/conditions/neurofibromatosis-type-2/symptoms/
Some people with NF2 may also develop a small number of coffee-coloured patches on their skin, called café au lait spots. But having lots of these spots is usually a sign of neurofibromatosis type 1 (NF1) (https://www.nhs.uk/conditions/neurofibromatosis-type-1/).
I put off going to the doctors today because I'm back to having normal bowel movements and my anxiety has calmed down but now it's spiking again with this :(
Please help me
You're still growing, it's natural for the marks on your skin to change. Calm the heck down.
nomorepanic
25-06-19, 12:10
All you have done is move on from one worry to the next though Toby and this is typical HA.
Treat that and these things won't worry you half as much
You're still growing, it's natural for the marks on your skin to change. Calm the heck down.
All you have done is move on from one worry to the next though Toby and this is typical HA.
Treat that and these things won't worry you half as much
I know it's typical HA and everything, I accept that for sure and I'm getting help for it at some point soon, but it's the fact that they're spreading or I'm at least getting more of them now, and the fact that my sister had a nerve related cancer although I think it was intermittent
The only reassuring thing is that cafe au lait marks tend to be brown and mine are more.. sort of yellower mixed with skin tone. I don't know
nomorepanic
25-06-19, 12:21
Well we don't know - we are not doctor's.
I'm going to go tomorrow then and ask about it :(
Just be aware that the more often you go, the harder it's going to be for you to be taken seriously.
True but this could be grave so needs checking out
Keep telling yourself that, Toby.
Or rather, don't, but you're doubtless going to anyway.
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 (https://en.wikipedia.org/wiki/Neurofibromatosis_type_1).[9] (https://en.wikipedia.org/wiki/Caf%C3%A9_au_lait_spot#cite_note-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
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 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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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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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
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
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/kcms/gbs/patient-consumer/images/2013/11/19/10/13/sn00033-cafe-au-lait-spot.jpg
What am I going to do?:weep:Because although NF-1 can be harmless and people can live long lives with it, it can also result in cancer sometimes
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
As well as bowel cancer?
Toby, have you learned nothing?
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!
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!
Nope I've never showed them to a doctor for some reason, I just accepted them / assumed they were just one of those things
But now I've actually researched it I'm terrified
unsure_about_this
25-06-19, 15:22
I have NF type 1, but no doctor, do you have a curve spine/back?
Are you sure you don’t have this?
https://www.nhs.uk/conditions/pityriasis-versicolor/
It causes spots on the skin and it’s a benign fungus that can be rid of in days.
I have NF type 1, but no doctor, do you have a curve spine/back?
I don't have any bone abnormalities
And have you coped with it okay?
Are you sure you don’t have this?
https://www.nhs.uk/conditions/pityriasis-versicolor/
It causes spots on the skin and it’s a benign fungus that can be rid of in days.
Oh wow I'm shocked
https://www.firstderm.com/wp-content/uploads/Pitiriasis-Versicolor-Tinea-Verisicolor-16-skin-ICD-10-B36.0-1.jpg
https://www.sciencesource.com/Doc/TR1_WATERMARKED/5/7/0/5/SS2807941.jpg?d63644562653
https://www.floridaskincenter.com/wp-content/uploads/tinea-versicolor.jpg
These do look a lot like what I have only mine seem to be more yellow, not fully yellow, well you can see in this picture https://imgur.com/a/RAyV61A what colour they are
When I scratch them, they don't itch, but the skin sort of peels and looks a little more flaky when I scratch. Not much and it's pretty unnoticeable and very slight, I don't know if I'm describing it right but yeah
Thanks for this.
Yeah it doesn’t itch and it’s flaky if you scratch it.
Ask you doctor for a fungus cream and you’ll see them disappearing quite fast.
MyNameIsTerry
25-06-19, 16:50
Oh wow I'm shocked
https://www.firstderm.com/wp-content/uploads/Pitiriasis-Versicolor-Tinea-Verisicolor-16-skin-ICD-10-B36.0-1.jpg
https://www.sciencesource.com/Doc/TR1_WATERMARKED/5/7/0/5/SS2807941.jpg?d63644562653
https://www.floridaskincenter.com/wp-content/uploads/tinea-versicolor.jpg
These do look a lot like what I have only mine seem to be more yellow, not fully yellow, well you can see in this picture https://imgur.com/a/RAyV61A what colour they are
When I scratch them, they don't itch, but the skin sort of peels and looks a little more flaky when I scratch. Not much and it's pretty unnoticeable and very slight, I don't know if I'm describing it right but yeah
Thanks for this.
So, consider what you have learned from this thread:
1) avoidance. That GP wants to help you and you didn't go. Anxiety can make appointments scary or it can make (and I think some HAers do this more than other themes) the person feel they don't need to address something when feeling a bit better.
2) Researching things with a clear bias towards the worst stuff.
3) Not reading what you find properly. That NHS link states most are benign and you don't have all those (quite obvious) symptoms as you haven't been mentioning them on here.
4) Finding a criteria list and thinking it's easy to get diagnosed when most of that list points towards a specialist examining you and performing tests.
5) It's more likely something harmless and someone with more objectivity (thanks to Seymour) points to what you should have considering in the first place. And the reason you didn't? Your OCD.
I suggest you mention this to the therapist once you start. It's further evidence of your faulty thinking.
unsure_about_this
25-06-19, 17:07
Yes I have coped with it fine, need to have brain scan every 3-5 years due to non cancerous spot on brain, specialist sent me for a spine a few years ago, my mum also has NF she had more lumps cut off than me.
Yeah it doesn’t itch and it’s flaky if you scratch it.
Ask you doctor for a fungus cream and you’ll see them disappearing quite fast.
Yeah exactly. I will do. Can you have it for several years though since I've seen it for like 2-4 years but only recently it's popping up in more areas on my torso region?
If you don’t treat it it doesn’t go away on its own. You can definitely have it for several years and it can spread but it’s super benign and easy to treat.
So, consider what you have learned from this thread:
1) avoidance. That GP wants to help you and you didn't go. Anxiety can make appointments scary or it can make (and I think some HAers do this more than other themes) the person feel they don't need to address something when feeling a bit better.
2) Researching things with a clear bias towards the worst stuff.
3) Not reading what you find properly. That NHS link states most are benign and you don't have all those (quite obvious) symptoms as you haven't been mentioning them on here.
4) Finding a criteria list and thinking it's easy to get diagnosed when most of that list points towards a specialist examining you and performing tests.
5) It's more likely something harmless and someone with more objectivity (thanks to Seymour) points to what you should have considering in the first place. And the reason you didn't? Your OCD.
I suggest you mention this to the therapist once you start. It's further evidence of your faulty thinking.
It's definitely that, I start thinking about rushing to the doctors when I'm panicking but if I stop worrying then I often put it off. I'll definitely go next Tuesday, my Dad said he would take me too.
Yep it's a benign condition but it's just the fact that these potential lumps can lead to cancer and I may not know I have them if they're in my body
And yeah, thanks to Seymour, now I'm convinced that it's just a fungal infection especially since it the skin sort of very mildly turns flaky like I'm scratching off a little dead skin, but I don't know because of how long I've had it
Yes I have coped with it fine, need to have brain scan every 3-5 years due to non cancerous spot on brain, specialist sent me for a spine a few years ago, my mum also has NF she had more lumps cut off than me.
Gosh I would be freaking out, but realistically it's not really serious as you know and has a normal life expectancy attached to it, it even said on the NHS website that it's very rarely life threatening. I'd just have to adjust to it, if it is NF-1 which it could be since my sister also had a nerve related issue
I suppose worrying about that is like worrying about getting run over in the sense that it's pointless because it probably won't happen especially if you're careful. Maybe that was a bad analogy
It's definitely that, I start thinking about rushing to the doctors when I'm panicking but if I stop worrying then I often put it off. I'll definitely go next Tuesday, my Dad said he would take me too.
Yep it's a benign condition but it's just the fact that these potential lumps can lead to cancer and I may not know I have them if they're in my body
And yeah, thanks to Seymour, now I'm convinced that it's just a fungal infection especially since it the skin sort of very mildly turns flaky like I'm scratching off a little dead skin, but I don't know because of how long I've had it
Like I said without treatment it can go on for years.
I showed the marks to the doctor at the end of my appointment today
He diagnosed a fungal infection and prescribed me some cream
Thanks Seymour, you were right.
I showed the marks to the doctor at the end of my appointment today
He diagnosed a fungal infection and prescribed me some cream
Thanks Seymour, you were right.
That’s great, I hope it clears up soon.
Without wishing to be annoying, it shows how the anxious mind can catastrophise symptoms.
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