Apprehensive - does anyone have experience of oral melanoma?

Just wondering if anyone has any experience of oral melanoma on here. I found a black spot under my tongue on 19/2/19 and after a month of waiting finally saw an oral maxillofacial surgeon who says I need to have a full biopsy to evaluate it’s malignancy potential. I showed him a picture we took a month ago and he said it hasn’t changed which is good. After the biopsy, in around 2 weeks and then another 2 weeks waiting for the result, I should know whether or not it’s serious or benign. I’m just wondering if anyone on here has had any experience of oral melanoma. I realise it’s not a common type of cancer but I just wondered how quickly it progresses. I know I’m jumping the gun as I haven’t had tests yet but I’m so worried I can think of little else and have a permanent wedge of dread sitting in my chest. Every day of waiting seems like a year.

i apologise to those of you who have positive diagnoses and I expect i shouldn’t really be on here with my worries but I don’t know where else to get advice.

 

 

  • Hi Swampfing,

    Please don't apologise for asking your question, you have every right to speak about your worries.

    I personally have no experience of mucosal melanoma (mine is subcutaneous), however I do know that this is a rare type of melanoma. Only 1% of patients have mucosal which can occur in the mouth, nose or anywhere that produces mucus. Caught early, like most melanoma, it has a better chance of successful treatment. I know a couple of mucosal patients - I will send you a friend request so you can private message me with any questions you may have and I will see if they can help answer them.

    Good luck, hopefully the results will be benign. Please let us know how you get on.

    Angie (Stage 3 melanoma patient)

  • Thank you ever so much for replying Angie. The hospital rang me today asking me to come in on Friday for the biopsy so I’ll know sooner than I thought what it is. 

    Part of me thought great I’m being seen sooner than I thought, other half was worried I have been seen so quickly so they must be thinking it’s serious. 

    I only have one small round black spot under my tongue but I have been feeling run down since 21/2 and have a strange feeling throat. Not sore exactly but a feeling of fullness in my throat and one of my teeth is aching a bit. Feel a bit feverish too. Just wondering if any of the people you know started out this small spot or was it more widely spread and did they notice it growing. My spot has stayed same as when I first noticed it...4 weeks.

  • Sorry for the late reply. Try not to worry too much about the feeling in your throat and teeth as these may be caused more by stress - at times like this every ache and pain we tend to associate with the primary problem but most times it's due to stress. 

    Only one of the mucosal patients I know had it in the mouth. I'm waiting for him to rep!y to my message and I will let you know. Meanwhile, the best of luck today. Please accept my friend request so I can send you a private message with any information I may learn. 

    Angie x

  • Hi Angie.. I have accepted your friend request now. Sorry it took me a while. I didn’t realise how I went about finding it. 

    Looking forward to hearing from you soon with other persons experiences so long as they feel up,to divulging them of course.