Metastatic spindle cell / epithlioid malignant melanoma

Hi  and a very warm welcome to the online community

I'm very sorry to read that you've just been diagnosed with metastatic spindle cell/epithilioid malignant melanoma. Having had a melanoma diagnosis myself I can understand how you're probably feeling right now.

Mine was an amelanotic melanoma so I don't have any personal experience with the type that you have I'm afraid. I've had a look for people in the group with the same type as you and the most recent poster is  who last posted about 2 years ago. I'm hoping that by 'tagging' them into my reply to you they will be able to pop on and tell you about their experience.

While you're waiting for replies if you type 'spindle cell' into the search bar in the group and then change 'anywhere' to 'melanoma group' you'll find 5 previous posts on this topic which you could have a read through. I didn't find any posts under 'epithilioid'.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Let us know how your scan in two weeks goes.

x

Hi  its cancer twice here.   I did get a spindle cell diagnosis in 2018 but it was not metastatic.   It was malignant melanoma but had not spread as far as they could see.   they did various biopsies and I had a number of procedures to cut out the melanoma and I have an 8 inch scar on my shoulder the biopsy came back saying it was grade 1b.   Such a relief to get that result, but even so as its spindle cell the 'spindles' can spread around the body quite easily.    I have had regular check ups with my consultant every quarter and had a number of scares as they are so thorough and anything is investigated which has been worrying and I even had half my thyroid out as they thought it was suspicious - again luckily it was a benign growth - but I am so grateful that they are so cautious.  I will continue to be checked for five years but with Covid19 I haven't seen my consultant for 6 months now - even though I have had a telephone consultation but its not the same and I am pushing now to actually have a face to face appointment.  I know they are stretched and I also realise that I am not priority but it does not stop the worry.   Sorry I cant be of any more help to you as I haven't had to undergo a fraction of what you have but any cancer diagnosis is so scary.  What I can say is that I have found them to be so attentive and helpful to me and I have a specialist assigned nurse who I can ring and speak to at any time which is so reassuring.  Good luck with your next appointment and I do hope your new consultant is able to answer any questions and address any concerns you may have. 

Hi cancertwice

I noticed trago84s post because of the spindle cells. Now you say you have a diagnosis of spindle cells and they can spread through the body quite easily.  My husband died of MM and his pathology report talks about spindle cells.  I have also had MM, in my case amelanotic and again my pathology report talks about spindle cells.  I therefore became curious and tried the internet, but I don't understand a lot of what is written.  I did seem to pick up on a connection between amelanotic melanomas and spindle cells.

I assumed that every MM has spindle cells but now I'm not so sure.  Do you know and are you suggesting these cells are more dangerous because they can move quickly around the body?  Where you told as part of your diagnosis that you had these particular cells as though they were not the norm for MM?  I missed out on a talk with a consultant when diagnosed as I was not allowed to see one by the very difficult nurse I came under.  Would not even give me the name of my consultant, actually there was no one, so many lies have been told over this.  So I asked for my pathology report, which caused another furious outburst from the nurse, but it told me everything she had not told me. Happily I am now in a wonderful department in another hospital.

The name has always intrigued me and when I see my consultant in January, I must ask him. I am now intrigued

Hi tiptoes  I am no expert and not medically trained in anyway  but the spindle cell diagnosis i had was sort of explained that the cells have spindles like thin legs and they grow and wave around uike other cancer cells that are tumours and grow.  I think cells can break of tumours and move around the body in the lymphatic system and vascular systems so you can still get metastatic growth froother kinds of melanomas.  I was worried by the spindle diagnosis as it is more rare and that the spindles are so tiny they may not be picked up on scans.  I don't know whether spindle cells are moraggressive and its worth asking your team these questions.  My experience is that they don't really know and it all depends on the speed of a diagnosis.  Mine was a very tiny brown patch on my neck/oulder it took a number of biopsies and surgery before they diagnosed it as a melanoma but luckily it was only 0.8cm but they can't be certain that there aren't cells left behind that may continue tgrow.  I am glad you now have a team you can trust it makes all the difference.  I would be interested to hear what your team say.  Sorry about smilies not sure where they came from or how to delete. 

Hi Cancertwice

Thank you for replying and I like the smiles but it is odd the way they have appeared almost as a pattern.  Anyway, you have told me some more about these cells which as I said always intrigued me just because of the name.  If they are more aggressive I'm very thankful to still be here as I had my melanoma for 4 years before anyone realised what it was and that was only from the biopsy.  I was dismissed for a long time as someone having nothing of significance and then finally as having a BCC which amelanotic melanomas are often mistaken for.  Mine was 1.2 in depth and the sentinel node biopsy was clear but as they say, there are false negatives out there.  I had a check up in September with a doctor who lives and breathes moles/MM and seems to travel the world learning and attending conferences.  He touched on the subject of melanoma reappearing years later and no one knows why.

I will take my pathology report with me in January, if the date doesn't change and ask about these cells and let you know.

Hi Trajo84 and CancerTwice and all,

The term "spindle cells" refers to the elongated shape of the melanoma cells under the microscope. I have never heard of them having "legs" or any particular features that allow them to spread more than other melanoma cells.

I also had a spindle cell melanoma, in fact a particular sub-type called a desmoplastic melanoma. It was not metastatic. Three and a half years on, all is still well. No sign of reccurrence. 

My understanding is that spindle-cell melanomas are no more dangerous than other types of melanoma. However they do not look like melanomas, they are typically amelanotic (colourless) and are rare. Their danger lies in the fact that they do not get the attention they truly deserve and often pass under the radar at the doctors. In the months leading up to my own diagnosis I saw four different doctors - including an oncologist. Only one of the four was astounded that I was not getting any treatment for the lesion. And no, it was not the oncologist who was worried but a GP. When I finally got an appointment with the plastic surgeon, even he thought it might be a basal cell carcinoma. The word melanoma was never mentioned and I was not fast-tracked in any way.

I am really sorry to hear Trajo84 that your spindle cell melanoma needs such widespread surgery. I hope you are recovering well. There are many people on this site getting treatment for metastatic melanoma. You might want to get in touch with them when you know what the next steps after surgery are.

Take care. Thinking of you,

Miranda