Acral Letiginous malignant melanoma

Hi Lillibeth and a very warm welcome to the online community which I hope you'll both find is both an informative and supportive place to be.

I don't have any experience with acral lentiginous melanoma but there have been posts in the past about this type including from Susan P who just posted about it 2 weeks ago. I've tagged her into my reply to you and hopefully she'll pop on and share her experiences with you.

If you click here the link will take you to past threads on the subject which you could take a look through.

It would be great if you could put something about yourdiagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. 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.

Hi Lillibeth, I have recently been diagnosed with ALM on the bottom of my right foot, I had a suspicious mole removed from exactly the same spot 4 years ago which was benign but it grew back and this time the biopsy came back positive for cancer, stage 1b. I am now waiting for a wide excision with skin graft and a sentinel lymph node biopsy which I’ve been told should happen before the end of January. Like you my understanding is that it is rare and I will be very interested in gaining more knowledge about it. Would you be happy to share experiences, please keep in touch

Hi, I had a big toe amputation 8 years ago. Was concerned about walking balance but with supportive shoes/ boots I regularly walk average 6 miles/ day. Only just seen your post as don’t come on hereery often. Good luck

Hi there I am so sorry not to have replied to you sooner.  I have the same cancer as you - on my right big toe.  I can understand how worrying it must be for you.  I have been having treatment for the last ten years!  There have been several excisions ( as wide as is possible on a toe) and skin grafts.  Unfortunately with me the melanoma keeps popping up again, mainly on the edge of the skin graft.   I’ve also had treatment with a topical cream, with some degree of success.  HOWEVER I have always been told that the cancer is in situ and there are no signs that it has spread.  After all this time I just deal with it now and try not to think about it.  I find the skin graft it really is not very painful - the arm where they take the skin from is a bit sore for a while.  Scars heal and almost disappear.  I hope you have a date now for your op and everything goes well.  Please let me know how you are and I am happy to answer any questions if I can.  Promise not to take so long to come back to you next time.

Hi there thanks for posting about your experience.   When I was first diagnosed with acral letiginous melanoma on my big toe, the professor I saw was keen to amputate my toe.  I resisted because I had been told it would affect my balance.  I think you are doing brilliantly by the sound of it.  If you don’t mind me asking do you have to have shoes made specially?  And do you have a prosthetic toe.

Hi Lillibeth, no I didn’t have any shoes specially made. The surgery was day surgery but I bought some ( Cosyfeet) wide fitting outdoor boots with a wrap over Velcro strap. Easier to put on then tighten plus a wider fitting to cater for all of the bandaging etc.

i simply wear my normal shoes/ walking boots ( my wife and I are keen countryside walkers) . However, I had some very good insoles made by a sports podiatrist whom I use. They measure your walking gait on a computerised treadmill and design the insoles for you. They are fantastic.

My amputated toe was then sent off for biopsy and it was found that I had a 20% chance of the melanoma spreading so I had regular body/ mole/ lymph node checks for 3 years.

i had 6 good years but 2 years ago the melanoma spread to my groin. Surgery ( lymph node groin dissection); immunotherapy ; then a side effect from immunotherapy ( pneumonitis); but I’m still standing at age 76 and still going to gigs, theatre, etc.

Good luck with your decisions. Personally, I quickly formed a view that delaying the cancer was the priority and that I’d cope with the balance issue. I have zero regrets. Good luck. Happy to help at any time.

Hi Wurlitzer

Thank you very much for sharing information about your experience of acreal letiginous melanoma.   My diagnosis was over 9 years ago  (I am 79 now).  Like you I try to lead an active life and I am a very keen gardener.   I have lost count of the number of skin grafts I have had, but I am still being told the cancer is ‘in situ’ even though it has spread to different areas of my toe.   Can I ask what stage your cancer was when you had the toe amputated?   
it must have been a shock to find it had spread to your groin.  How did you find out?  Did you have a scan?   I have not had a scan - and of course it’s always in the back of my mind that in 9 years it could well have spread.

I hope you continue to keep well.

Hi , I seem to be prone to melanoma ! I twice in my 50s had moles excised from my back but with safe margins. My acral big toe was wrongly diagnosed for 2 years by an older but incompetent GP as fungal toe. It eventually became painful and gooey beneath my by then broken toenail and a private chiropodist literally saved my life. He had previously worked in the NHS, had seen this cancer on big toes and sent me straight to a better (!) GP. The cancer was stage 2b. When it later spread to my groin lymph nodes I literally overnight developed what I thought was a hernia ( I’d been lifting heavy items). A swelling about the size of a banana but very firm and hard all along my groin. Biopsy, surgery, immunotherapy then side effects. Stage 3B. In your position I would seek some peace of mind checks. Wholly reasonable. Ask any more questions if you need to. Good luck.

Thankyou!  Take care.

Hi Potte just wondering how you are and if you have had the wide excision on your foot yet.  Hope you are doing ok.