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?

That sounds like a disaster of an appointment.

Is there someone you can write to?

Waiting 6 months is not the solution for incompetancy.

I think she was saying her mum could potentially have found out something shocking as it was left up on the screen

Oh op what a stress. I'm a melanoma patient too and the nhs is a fucking circus, your experience sadly does not surprise me.
The problem with melanoma is you're under so many different departments, miscommunications and mix ups happen.
I hope you get the answers you want - maybe see if PALS can help?

I would be asking for a copy of the histology report and checking the macroscopic description (what the sample looked like to the naked eye including measurements etc) matches with what they removed. If you are not sure it belongs to you, so to speak, there are tests that can be done to compare DNA against a known sample.

However, good news assuming no sample issues

Can you afford to pay for a second opinion privately? They could request all records and results.
You could contact Melanoma UK for a recommendation of an expert in your area.
I don’t know whereabouts you are but I am in Hampshire and my oncologist is Dr Mathew Wheatear who is a nationally respected specialist in melanoma. I was initially seen by Professor Ottensmeier who is an even bigger expert but he moved away and is now working in Liverpool.
If at all possible find the nearest and best specialist and get their opinion now.
In your position I wouldn’t want to wait six months. As I have posted previously, I have stage 4 melanoma. A lot can happen in six months.

Completely agree with @SuperDupe
Ask to have a copy of the histological report

Sounds like a mix up with a labelling of the sample pot

Guess what? RBS has just completely closed an account that all my benefits and PIP get paid in to. I received a payment today. The account has just disappeared! Customer Services have put me through to the fraud team. Wtf, seriously had enough now!!! On hold 🙄

Okay thank you for some very good and interesting replies. Bear with me as I scroll up and fall apart... I reckon my toe would drop off from stress alone!

@SuperDupe good idea, I did see the removed bit on the day in the tube... I was still laying on my front being stitched up at that point. But yes, at that time, it was definitely my brown bit! I remember commenting that it looked like a bit of hard skin you start picking off, then realise you've gone too far and deep!

Would my surgeon/Dr who is fully in agreement with me not have requested this do you think? He asked for it to be tested twice. I don't know.
But yes, I shall request that, thank you.

@Mittens67 potentially I could get the money (poor Mum already missing her retirement!) There's nothing left to biopsy though as that's first thing my surgeon wanted to do. Looked at toe - clearly he was too good!
I'm sorry to hear where you are with it. It never seems to be taken seriously does it? Thank you so much for names and recommendations. I will look.
All the best to you ❤️ thank you for taking the time to think of me.

Occams razor.

My first thought.

Who would I contact for the histology report please?

Still on hold to bank. I just want to cry!

PALS
Hi OP, trying to add in a link to PALS. They may be able to support you to raise your concerns and get more answers 🙏 x

The description should match what was removed. For example, ellipse of skin 4mm diameter with brown raised /non-raised pigmentation etc. The diagnosis should also mention the pigmentation.

The histopathology dept that serves your hospital will have sent this report to dermatologist. So insist on seeing it. They won't give it to you directly but your consultant.

Something about this is very suspicious of a sample swap. Did you see them label the sample pot.

Thank you @SuperDupe I didn't see the nurse label the pot no. She was too busy gassing to my Mum.
You don't expect anything so random do you?
At least my elbows are smooth and no signs of ever having eczema or psoriasis... Because I haven't.

Thank you @Enough4me

I shall look in to it on the morning.

I think I'm giving up on skin and banking for tonight. Just a little bit of peace would be nice.
I know I'm moaning, but I can't thank you all enough for a) believing me b) understanding my outpouring of events and c) steering me in the right direction.

It's just wonderful thank you. Well, you are all wonderful. It isn't! 😂 Goodnight ❤️

Jesus Christ. The NHS truly is a shit show in instances like this. Utterly staggering.

Almost the weekend OP and may be a bit more of a warmer one to catch up with friends/family to get out & have some headspace from this recent NHS & bank stress!
Finger's crossed the bank isn't as bad as the NHS at providing information! 🙏

I opened your thread because 13 days before Christmas I was diagnosed with a melanoma in situ on my left lower leg. I'm also a health professional but live in Australia, not the UK.

I'm beyond horrified reading your thread, it's like reading an appalling litany of medical mistakes in a third world country, instead of the UK.

It's unbelievable you've been told a new biopsy can't be done because "they've taken it all". A biopsy is nothing more than taking a small sample of an organ or surrounding tissue. Even if your whole toe has gone, there is ALWAYS tissue around the original lesion to get a sample from and check if cancer cells are present or not. I'm beyond shocked you've given this advice by a doctor.

Your original picture looks like a melanoma. It doesn't look at all like psoriasis or eczema and apparently your original surgeon doesn't agree either.

Can you contact the surgeon, ask to see him privately and get a new biopsy done privately as well? It'll cost you money but I wouldn't trust anyone in the NHS at this point. What they have done with you is appalling.

If it is a melanoma, and they've made a mistake, your life could be at risk the longer you don't get a good plastic surgeon to do a new biopsy.

If it turns out it's not a melanoma, great. Money worth invested for your mental health knowing you've done everything to get the best medical advice and tests, possible.

Thinking of you.

Thank you @Enough4me , all was quite stress free in the end.
Hi @Alondra they initially did the wide excisional biopsy to remove all to save them having to do another. From what I can see, there is nothing left to take, but you are absolutely right that I'll never find peace unless they look into whether it has spread further.
I've been trying to think of how to write to them about it, I've had a lot going on.
I am going to see the surgeon again next week for a shave biopsy on possible Bcc but suspected seborhrioc (I can't spell it!) keratosis.

I'm attaching a copy of the letter that arrived with findings today.

They say little right toe twice... I've tripled checked and I know my right and left. It's the little toe on my left foot. I'm nearly 50 and double checking because you trust the professionals. Don't you? 😭

Hi Op, this all sounds terrible and very worrying for you.
Just adding to the pp suggesting a sample mix up.
These things can and do happen.
I work in a department where we take biopsies for suspected cancer diagnoses. My colleagues and I treat those samples like gold dust, often personally delivering them to the lab.
However in the adjacent area to ours where different staff are managing different procedures which also involve specimen taking there have been mix ups causing considerable concern (and new procedure rules).

Whilst reports re right/left sometimes contain errors, and obviously it is extremely important to check these details if you are about to biopsy a right/left kidney, the mention of right toe in your letter could be a simple error on the part of the person dictating the letter.

It is the unlikely diagnosis that is the obvious serious concern.

I agree with pp that first action is to get hold of the histology report and check these macroscopic description.

It really shouldn't be difficult to get that report. You are entitled to it.

Your GP if helpful may be able to request it for you. Or your consultant should send you a copy. I'm not sure PALS would be particularly helpful on this let alone prompt.
NHSEngland is not overly helpful with detail of how to go about it, I think you have to make a written Subject Access Request to the Data Controller at the hospital.

You could also consider consulting a solicitor who specialises in medical negligence - they may do initial work to support you getting the results for free.

I remembered I once read a column by Boris Johnson of all people when he was sent someone else's results telling him he had leukaemia.

telegraph.co.uk/gift/14c15a9222daf4ce

Just seen the letter. I would be asking them to look at all biopsies taken that day. I wonder if sample pots were pre-labelled and the wrong pot was used.

The macroscopic description on the histology report should describe the size and colour of any visible nodules/ discolouration on the epidermal surface.

Something does not sit right here

STR testing can compare DNA against a reference sample (blood) too which will give a definitive answer to whether the tissue came from you

Yes, pre-labelling more than one pot and having gf several in the room ready is exactly what went wrong in the adjacent dept to my own.

You might consider direct complaint to the CEO of your hospital trust OP.

They quite often make people jump to it. I had good result this way when I had cause to complain re treatment of my mother.

Hi all, apologies for lack of update.

I'm going in this afternoon for my shave biopsy on poss Bcc keratosis, or whatever. I'm making a list of all things to ask the surgeon (hopefully the same one!), I'm not expecting much from him as he was very airy fairy anyway - until he grabbed my phone and showed photos to other 2 consultants of toe saying see?!!

It will all go in writing at some point, I've just had a lot on. I can't believe they even done what they would do to see if it has spread.. Just as a precaution in case it was melanoma! Anyway, better get me big undies on, this one is top inner thigh!

Oh dear!

Hopefully someone else didn’t have a toe operated on or unnecessary treatment…

Perhaps you could insist this afternoon that the other tests handled that day are examined?

Good luck with the upper thigh exam today.

Good Luck today @JanglingJack you are handling this marvelously.
Thinking of you x
... do push for answers.

Hope today went better than the last time OP! X

Hey hey!

It all went fine. No results, I think I'm expecting results, maybe not!

Completely forgot to update. So I didn't see original surgeon, I had 3 ladies with me this time. Surgeon, student and the other person that passes over things that are needed, labels pots 🙄 etc.

The surgeon was saying, yeah, I understand something didn't add up with your last biopsy... Cue pictures, plus results... Yada yada. I still should follow it up shouldn't I?

So what I thought was originally going to be a shave (?) turned out to be full excision again, so everything is out. Let me look at the date you posted 🤣 Bless you, the 11th thank you @Enough4me !@Enough4me ! X so I guess it's still within reasonable timescales.
You know when you get one thing out the way and life just keeps coming, I'm very much out of sight out of mind! I've got maybe a 2 inch scar, no problem at all though compared to the tie 🙄 or even the toe!

Ah thank you so much for thinking of me, that's so lovely. I know I need to put some correspondence together. Good news is that toe is completely healed, nothing to see there... I guess there's not much to be done. I did try and say to the new surgeon that surely if it had come back malignant then they'd be checking to see if it had spread. She said not necessarily, if he'd removed it all... Uh? That doesn't make sense to me but, I wasn't going to labour the point!

I'm not sure whether I'm staying up or going back to bed now. It's just me today, so technically I could stay up and go to bed at 4pm 🤣