Melanoma on little toe? Picture attached.

[JanglingJack]

Hi all,

I'm not looking for a diagnoses as have already been referred on the 'two week wait' to the Dermatology dept. Blummin pain as I was there on Monday for something on leg, that they will scrape off (yum!).

I'll attach a pic of my gnarly little toe...

It wasn't there in August (holiday). I asked how sudden these things can appear and gp dermatology specialist said sometimes within weeks...

I'm keeping calm but head all over place as I've been so unwell in last 3 years, low immune system, picking up any infection, at one point I was given a 2 month course of antibiotics. I've had several weekly courses. I've had scans on lymph nodes - thankfully all clear. Random lumps on shoulder... I could go on.

Can I ask though, has anyone had something appear like this within say - 2 months?

Argh, I’m sorry. That’s soon though, not too long to wait.

Sorry to hear this, and sorry you have to wait over the weekend. I’m the sort that would rather be told over the phone so that I have time to process the information before the face to face, I hope you have things on to take your mind off it.

and remember, even if you’re going in, it’s likely not terrible news - hopefully they can remove it and problem solved!

good luck

I know, thank you both. I don't know where I'm standing at mo... Take the entire toe... But surely they need to check it hasn't spread.
I don't know.
I know women go through so much worse and lose breasts and part of their identity pretty much within weeks. I'm not moaning about losing a toe, it's just I want answers and I'm not very good at waiting, hence switching off xxx

They perhaps just need a bit more investigation to be sure. If it were me, I would run through all the possibilities and work out plans. Because I’m a planner. But it may be more sensible to do some good self care and distraction.

That’s good that they are moving quickly. The reality is that if it’s melanoma, they will move fairly quickly.

I have stage 3 melanoma (found on my scalp, then spread to a lymph node near my jaw). I came into hospital to have the wound checked and dressed after the biopsy. And they literally pounced on me. Cleared a consulting room, two nurses and a box of tissues, booklets of information, to tell me. They actually thought I had a different sort of cancer (mine didn’t look at all like yours), so it was all quite a shock. The good thing is that you can prepare.

Really do not panic! Right down questions you have. It’s entirely possible it’s something else totally different and they just want to check the wound (I was being seen 2x a week for wound dressing after mine). But if it’s good news, great! If it’s not what you want to hear, then you’ll be ready. Write down information because you won’t remember.

And really try not to worry too much. Easier said than done! I was writing my will in my head and planning it would be my last Christmas. It was horrific. But the treatment now if very good, not even what it was 5 years ago (so don’t look at 5 year survival rates, I made that mistake 😩). With a biopsy that gets everything and treatment even me with metastatic melanoma, the chance of being cancer free after 5 years is 85%.

Try to take care of yourself this week. If you work and you need to, take the week off and do what will give you a bit of headspace.

All the information may be accessible already on your NHS app however I wouldn't access that if you won't cope well with it. I found out that way after a last minute appointment change and it was not pleasant. They likely will already have a staging based on that sample. If it has not spread too deep they will likely want to take as much as possible however if it has gone through a few layers you would probably need further tests. The facts on that variation of melanoma (acral lentiginous) isn't great but you must remember a lot of information on Google is outdated and the doctors do know best. I am coming up to 2 years clear of it so good outcomes (fingers crossed I haven't jinxed that) are possible even with this kind. Good luck

Also just to add, you will not lose a toe! (😂 sorry had to have a giggle at that). IF it’s melanoma, the goal is to take enough tissue in the biopsy that they have a clean margin of however many mm where there is no cancer. And they will want to do a CT/MRI scan or sometimes something called a sentinel lymph node biopsy to check a nearby lymph node.

So for me, they had to go back in to the original site and take a wider margin to make sure they got it all. But it’s only just the skin surface and just below. The great thing is that it’s on your toe, which no one will really see. That’s very fortunate really. Even if you need a further biopsy, it should heal up well. Ask for help with dressing it (they should do it for you really) to prevent infection.

Thank you all.
@Buddyelfismyvibe (mine too!). My first thought was acral. It's the only thing that matched.
When I first saw surgeon he said he thought it might be blood - so like someone said above... Ah, I can't remember the term - talon noir (thank you brain!) from photos. Took sock off, straight away, nope not that.

He made sure to say - I know I've said this, that he'd only be seeing me again if it was a worry and more needed removing.

It's definitely not a wound check. It's finally healed and I'm back in my trainers walking normally 😂

I'm so pleased that you are coming up to 2 years clear. I'm really happy to hear that. It's just so out of the blue - like acral is.
Can I ask your skin colour if you don't mind? All searches say Acral is more common in darker skin. I'm pale white freckly half Irish, so it was strange to think it could be. Then again I have variant du blood type (I'm positive, but usually test as negative) and I read that is more common in a black population. I am the Ginger Brit that slathers in factor 50!! I top up my freckles in the sun 🤣 but don't allow burning, and this type on bottom of toe is hardly from sun damage.

Sorry I'm wittering on, I'm not able to sleep yet ❤️

Well yes thank you, but I've already lost weeks of not being able to walk and half of my toe has gone.

So whilst you are giggling you might want to Google the cases where the toe would be removed.

There's not a lot of little toe to go round. Plus biopsy had to include where toe attached to foot.

Thanks for your thoughts and giggles.

Just don't.

You're not funny @mindutopia

Yours was what? The leg?

Please leave the thread. It's not funny.

I'm probably as white as you can be without being transparent and was only 36 when diagnosed so it was a real shock because it does seem more common in older people as well. I have probably burnt twice in my life and never been on a sunbed so it felt a particular bitter pill to swallow. My understanding is it can either be genetic or just bad luck and my consultant did say my children will be at a greater risk of getting it because I had it. I didn't need any lymph nodes checking and had no scans at all but I think that is because I caught it very early. I had three monthly checkups for a year after my second surgery and then was just told to crack on.

Ha that's interesting!

My brother and I were discussing just last week that we are missing an entire half of our families genetic history - Dad left and died when we were children, don't know his family other than they were white Irish.

I'm only 49, I was 48 when it started 😂 but yes it's nothing to do with sunburn or moles I know. My brother has had a fair few moles removed under the cause of, just in case. I'm more of a freckle gatherer.
I have ADHD (don't sigh!) I constantly sit or sat barefoot, crossed legged and still have to get up, sit down, get up sit down in same position. So, I know it hadnt been there for a long time, definitely not more than 2 months as I was on holiday with daughter and everything was creamed. It's not unusual for me to see the bottom of my little toes.

Oh well, it can only be wait and see. I'll keep you updated. I'll be back on Monday because I can't cope with certain comments.

Thank you for your support. Gnight! X

Just a final input I had had mine at least 9 months and I just kept trying to convince myself it was nothing so you have put yourself in good standing if you caught it within a few months. Good luck and don't go down the rabbit hole too much which is very much easier said than done. Good night

OP, I'm so sorry you have a wait to know more. I'd log off if some of the posts aren't helping and try to keep yourself busy as much as you can. You will know more soon and until you do everything is speculation.
You've gone in early and done everything you can do. For now you'll need to be busy cooking up sauces and try doing things you enjoy. Your mind will probably not rest (as ADHD may let you anyhow) but keeping it busy with other things may give you some moments of lower stress.
As someone who figits (but I think overall I have ADD like my son rather than ADHD), I'd recommend trying to Marie Condo (Kondo?) some draws or sorting something similar out. It can be helpful to use energy in a different way, a bit of hyperfocus on something to use up some mental energy.
Best wishes! X

Will be thinking of you on Monday. All fingers crossed. I have had a few call backs from drs and it's a horrible feeling and then the wait. I feel for you.

@JanglingJack how did it go?

Best wishes and hope you have had reassuring news ♥️

Thank you so much for thinking of me, it means the world ❤️

I haven't replied sooner as I didn't really know where to start... So I'm just going to bash this out as it comes...

Firstly zero sleep Sunday night before news, literally zero. I gave up and started drinking coffee at 3am, just so that I was a wired aching mess 😂😭

So... Hospital, called in my a Dr who wasn't my consultant or whatever. My Mum came in with me.
I sat on a chair, with Dr and computer to right of me, no other chair so Mum sat on the 'bed' behind GP but facing me and screen.

He introduced himself, I didn't catch his name or 'rank' at all... Then it all got strange! (I've discussed it for first time with Mum this morning, so that I'm clear on how it went)

Dr - can I see your elbow please?...
Okay...

Dr - and the other one, now your back, and now your tummy... Knees?
I just said they're fine...
Dr - This knee
Fine
Dr - that knee
Fine

Mums looking at me gone out and I'm looking back equally confused. Mum said maybe things appear on these locations too. I dunno 🤷

Dr said something about my original Dr being along soon. I said, well - can you let me know the results then please?
He said, yes, I already told you it was just either eczema or psoriasis.

Dumbfounded.

For those that saw the original post... Flat brown / dark markings on little toe. No itching, no raised patches, no scabbing, no flaking.
My son has had to take cancer drugs for the most horrific psoriasis, so I am well aware of what it is. I have never had either, neither have I ever had eczema.

Anyway, he left the room - leaving computer open to say 2019 deliberate overdose of Naproxen and Paracetamol. In the mean time, Mum had got off the bed to look at the computer screen thinking it was the results.

So that was a massive fuck up on his part! Luckily Mum knew so it wasn't a shock to her 71 year old heart with problems!

In the mean time, we were gobsmacked at the diagnoses. I scrolled through phone for all pics including gp pics and hospital pics.

My gp/surgeon comes in - with original Dr and another Dr.
He says hello, how are you feeling, I showed him the photo and said no way is that psoriasis or eczema.
He showed the photo to the 2 others, almost saying see? Well, he was saying see? Actually.
Tests took so long to come back as he doesn't agree with the result.
He asked them to rest again - same result.
He doesn't agree.
Asked if tests were mixed up... He didn't answer that one.

He looked at my toe to see if there was any more he could biopsy, but he said sadly I've taken it all! I'm going to have to see you in 6 months. He did say if it comes back, we will have to take the toe (for the person who was laughing at me being dramatic)

So... No real results other than no cancer, because eczema and psoriasis aren't cancerous by default 🙄😭.

I just hope there isn't someone out there with an itchy eczema patch who has their toe lopped off! I laugh, but it's not funny.

If you've read all of this then well done and thank you.

Please don't reply with basal or squamous theories, because it wasn't and never will be that.

I'm actually having a keratosis Bcc (all fine) removed on 29th, so hopefully will catch up with my own surgeon then.

And breathe 🤣😭

😲😲😲😲😲😲😲
🤯🤯🤯🤯

I mean….

Sorry I realise that’s no help, but…. Really!

I am sorry, that is truly shit.

Thank you.

I'm glad I'm not the only one!

I started crying and it almost looked like I was crying because I didn't have cancer!
Not at all.
All the weeks, months of worry and sleepless nights, and I only wanted an answer!

Instead I got a shit show.

I hope you can understand now, my delay in replying... I didn't know what the fuck to say!!

And being told you don't have cancer because it's just a skin condition, doesn't really put my mind at ease.

Back on 29th, shave biopsy for the keratosis. I'll be sure to be asking questions.

I'm so glad though that my assigned GP/Surgeon was backing me up in front of colleagues agreeing that no way was it psoriasis / eczema.

Anyway, teenage daughter due home with her boyfriend - I think I better save my energy 😂

OP, sorry to hear about your experience, I was following this & willing you well and I think this was good news overall as they didn't pick up cancer?

It was hard to understand as the Drs overall sounded very incompetent. I'm not sure what happened to you as it sounds like a nightmare!?

I'm sure you must still be in shock, as must your mum!

So, are you still waiting for a proper explanation and will get this in the future?

Are you saying you were not the patient on the screen with Naproxen overdose? If so, this would absolutely not fill me with faith they have the correct lab results.

Thank you. Still sinking in.

Surgeon (original) wanted to biopsy again, looked at toe, and he'd taken it all so that's a no go.

I have an appointment to go back in 6 months to see if anything new has developed.

I'm fine, it's sinking in, I can only be reassured that he got everything out.
Hopefully it's him on 29th so can have another chat.

Yes, I think it's good news... But I'd rather be clear on the result 😂

Thank you for thinking of me ❤️

No, I was the same patient.

Both surgeon and I disagree as psoriasis etc... That's a carcinoma.

Mine was being tested assuming it was a melanoma. Not assuming, but on the basis.

That's why I was so confused showing my elbows, back, tummy... He said knees, it didn't occur to me that he wanted to see them so I said they're fine...

It was all very confusing.

My surgeon asked for the test to be repeated, asked if there was any possibility of a mix up (nobody is going to say yes!) wanted to biopsy again, he can't, so that's why we are waiting 6 months.