Mucosal melanoma
I'm not sure if I belong in this group since my oral mucosal melanoma surgery successfully removed the cancer with large and clear margins. But, mucosal melanomas are rare and aggressive with no known risk factors. So, I think of myself as having a rare disease nonetheless because the cancer could return or spread. So, although all of my pre-surgical and post-surgical indicators are good, I face an uncertain prognosis. What I currently deal with is anxiety that derives from that uncertainly and from living from full body scan to full body scan hoping for continued good results. I suspect that folks who have had and are dealing with one or another form of mucosal melanoma know what I mean.
Hi @CommunityMember5abb2e, You are absolutely welcome here. I wanted to mention also, our new sister community, https://cancer-community.com/. It is a non-specific cancer community, and does have an article about "scanxiety" https://cancer-community.com/living/managing-scanxiety. We can handle all those feelings of "rarity" and not being understood, and Cancer Community can answer your specific questions. We're glad you're here! - Warmly, Donna (Team Member)
I'm actually really glad you shared here,
! Your condition definitely counts and I happen to think the more knowledge we have in spaces like this, the better!
That said, we do have a sister site dedicated to skin cancer and there is some mention of mucosal melanoma on the site, if you are interested in checking it out -- https://skincancer.net/search?s=Mucosal+melanoma. While I can't say I relate to how you feel, I have to say that it's no wonder you deal with anxiety and concerns after every scan. It feels like constantly waiting for the other shoe to drop or something. I think most people who have dealt with cancer can relate to that feeling. Add to that that having a rare condition means you are constantly having to explain what it is to people and that's exhausting, too.
I am so glad your results have been good thus far and I hope that continues to be the case from here on out!
Best, Erin, Team Member.
