Looking for potential answers

Posted By
4/12/2013 12:12pm
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Replies: 1

Hi All-

Been holding out on this questions but anxiety is getting to me. Just a brief recap about my history so you understand where I'm coming from.


April 2011- bump in cheek removed. Path says metastatic melanoma...no leison found anywhere. Find specialist (mel)...thinks maybe primary dermal. Pet scan...negative, re-excision found 5.7mm melanoma in circrumference...depth not measured due to no epidermal component, SNLB negative.

2011-Current. Regular skin exams, eye exams, 1 mucosal exam. CT scans of chest, neck, pelvis abdomen every 3 months...all negative

So last scan in Feb was good but not long after I notice the tinest of bumps towards the roof of my mouth. Figured if was burn scrape etc... Well at 6 weeks now. I had dentist appt about 3 weeks ago and mentioned to him. He did xray and exam. Couldn't really see anything and x ray wasn't concerning though he said xray wouldnt be good to really diagnosis malignacy. He said thought it might be trauma and damage to gland which creates a tiny cyst called a mucceloe (sp?). This thing gets to size of a pin head...they type that has tiny ball on top (maybe not even that big), then it goes down basically to nothing. Actually feels like little piece of skin hanging...like when you burn your mouth eating. Anyway...he saw nothing of concern but given my history he said to see oral surgeon. I did that earlier this week. He said he can see the slight redness (was inflammed from brushing teeth) which was good...but guy was a quack...sais he would take it out then asked me if I wanted to be put to sleep for procedure....really. This thing isn't huge...just scares me and he scared me with that question. So I looked him up and he is on probation for anesthetic related issues and a guy died in his chair. Thank you MRF and all of you have educated me in being diligent about my care. So I'm going next week to see a different oral surgeon. I'm nervous....keep thinking about oral/mucosal melanoma given they never found a primary. Anyone out there have any insight or knowledge, experience with this? Really hoping it's nothing...I'm right at 2 year point and my oncologists feel I'm in good spot but I know this can come back anytime...anywhere....though its typically in first 2 years....which I am at. Hoping someone can respond.



Let's work for better treatments....for a cure!!!!

Josh, it looks like you are doing the right thing - perhaps you can find a way to relax a little between now and your next appointment. Did you talk with your oncologist about this? That's the one other thing I would recommend.

    I'm not an expert, but my research on ocular melanoma has taught me that there's little correlation between it ant cutaneous - perhaps the same is true for mucosal. My husband also was diagnosed originally with metastatic melanoma after having a "cyst" removed, but after a few months of surgery and pathology reports the oncologists no longer believe it was a metastasis. They believe it started right there, either under the outer surface of the skin or in a spot that had disappeared by the time it was excised. 

   "Watch and wait" is difficult but it's all we can do - same as you. I find the anxiety increasing as we near his next set of scans - just as yours is probably increasing awaiting the next doctor visit.

Wishing you the best --


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