Connect
← Return to Hereditary Cancer Syndromes
Discussion
Comment receiving replies
Hello @banelson
I read your post as well as the response from @lannisolochek. I certainly can understand that you are feeling overwhelmed. It is so difficult to be found with a rare disorder, and especially rare cancer. I have had three surgeries for carcinoid cancer which is relatively rare. When I first was diagnosed in 2003, I could find no support groups. Now, however, there are more support groups. I hope that you will find support as well.
Here is a website from the NIH that provides some information on BAP1 mutation. Perhaps the information will be helpful.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3792854/
If you are comfortable doing so, can you share anything about your own (or your family's) cancer history? Are you currently in treatment?
Replies to "Hello @banelson I read your post as well as the response from @lannisolochek. I certainly can..."
Connect
Hi @hopeful33250
Thank you so much for your thoughtful reply. I'm sorry to hear of your battles with cancer. I hope you're doing well now.
I'm happy to share a bit about my family's cancer history. I found out this year we carry a BAP1 mutation after my mother was offered genetic testing during her second bout with cancer. This mutation puts us at a high risk for a variety of cancers - ocular melanoma, mesothelioma, kidney cancer, and skin melanoma. Our family has experienced many of these cancers.
I'm currently 36 and (so far) cancer free. I visit Mayo annually for screenings and have had an excellent experience there. However, it's hard feeling that you just don't "fit" anywhere and slip through the cracks. I don't have an active cancer, but I undergo regular screening for it because odds are good that I will eventually be diagnosed.
I have found FORCE (Facing Our Risk of Cancer Empowered), which is a nonprofit that deals with hereditary cancers, but is mostly geared towards BRCA1/2 mutations and other gynecological cancers. They're a wonderful organization, but once again I don't really "fit."
I'm also a mother of two young children and we've been advised not to have them tested until they're older. It's very hard for me to think if they have the mutation, they'll struggle to find support and feel like they don't "fit" anywhere either. I don't want to come off as whining, but it's hard to think there are others like me who are struggling with hereditary cancers and looking for places where they can find support.