• Am I the only one here with a first event of an internal nasal/sinus melanoma? (under 1/2 of 1 % of melanomas).

    Asked by jdub54 on Monday, January 7, 2013

    Am I the only one here with a first event of an internal nasal/sinus melanoma? (under 1/2 of 1 % of melanomas).

    Any stage IV melanoma survivors, long term? Looking for anyone with similar experiences to mine. Or am I really the 1 in a million that it seems?
    My only real contact w/someone in a similar situation is deceased for over a year now.......just wondering about my "lucky dog" status. Now 4 years in, and 2 years+10 months N.E.D......NOT typical, but sure beats the alternative!

    3 Answers from the Community

    • GregP_WN's Avatar

      jdub, I done a search in the Diagnoses tab and came up with this, take a look at this page, down at the bottom are some experiences, do a little looking around and you might get some info there.

      almost 5 years ago
    • jdub54's Avatar

      Thanks, Greg;
      I did go through the section, and I guess I stand alone with the specific disease. I know others here have different cancers in the same region; I hope all are getting the care necessary to control/prevent further events for them. Feel free to call on me anytime an initial primary internal melanoma pops up. They are quite rare. I won't have good news for anyone; but the fact that I'm still wandering the earth (so far) says it isn't ALWAYS an end game. EXTREMELY close monitoring is the life preserver; being a strident self advocate is the way to get it.

      almost 5 years ago
    • GregP_WN's Avatar

      Thanks for being here. Occasionally when we find rare cancers like yours we will seek out others to get a little group started. If you run across any others out there with your diagnoses, invite them to come over and register. I have recently found a group of about 15 with a rare dx that we have invited to come us WhatNext as their home.
      I will keep you in mind as I find others.

      Thanks for your participation in the site.

      almost 5 years ago

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