Article Talk: More Than the Skin You

Started by jdub54, March 08, 2017
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March 08, 2017
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Take it from a patient; Mucosal Melanoma (MM, as we patients shorthand it) has a deservedly nasty reputation. It is an occult disease (hidden), and often has spread with distant metastasis before diagnosis. Symptoms vary depending on site; oral versions get missed by dentists who don't "blacklight" their patient's mouths, and viewed as something benign until too late; Nasal/sinus ones, even after they break encapsulation and cause nose bleeds, get seen by GPs/PCPs and mistaken for nasal polyps. Anal/rectal ones get misdiagnosed by GPs/PCPs as bleeding hemorrhoids, internal or external. Vulval/vaginal ones ALSO get misdiagnosed, or worse yet, patients get told to "wait and see" if the peculiarity goes away or not. With MM, waiting is deadly, and it can spread very rapidly. As someone now NED for 7 years (primary tumor and single blood-borne met both occurred in a 13 month span, and now a blessed though concerning "radio silence"), I speak from experience. I work with a closed (members only, joining is tightly curated to prevent trolls gaining access) Facebook group, and I am the extreme outlier, beyond any "wellness" stats that NIH has. In fact, I keep wondering why no researchers are beating down my door to find out what is different about me (My genome? My overactive immune system? My MM's genome? My fast response, and aggressive and appropriate treatment?). I want to HELP the 700 new cases per year in the USA (only 700 on average, across ALL body sites). It kills about 70% in the first 5 years, and although immunotherapy seems promising, the LONG TERM SURVIVAL rates have not really changed much. Folks go through repeat and spreading episodes, usually, until it wins. It isn't all the fault of patients that put up with stuff that is "different", or doctors either; The quick/dirty math is that, if you put 70 GPs/PCPs, all after full 30 year careers, in one room, you'd be lucky to find one that had seen a primary MM and called it correctly, they are that rare. So, yes, FORCE doctors to prove that a change is not important. Delays in treatment will likely kill, and while you survive after discovery and initial surgery/treatment, you fight with everything you have, bear through surgeries, chemo, radiation, immunotherapy, and huge measures of despair. People around you don't understand (as they have been indoctrinated to view melanoma as solely a skin cancer). They have a tough time believing you when you say it is very likely to kill you. Then, even if they "get it", they don't know how to react, behave, speak around you (we'd all like NORMALLY, please?). So, if you notice a change (me? nosebleeds? I went running for help after only the first 5 in a week; others I know wait months, and have paid the ultimate price). IF YOU NOTICE ANY CHANGE, and docs don't seem to believe you, or downplay your symptoms, GET ANOTHER OPINION, FROM A SPECIALIST. It isn't your family doctor's fault that he/she doesn't know MM personally. It is unusual, virulent, and deadly. It is still cancer of the melanin layer of cells, but NOT SKIN; they are INTERNAL mucosal cells, and they are everywhere.
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