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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.
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Hi again, @banelson
Yes, the feeling of "not fitting in" is very isolating, isn't it?
When I was looking towards my first surgery with NETs in 2003, I was frightened, to say the least. I would mention it to friends, family, etc. who had, of course, never heard of it before. One person, said, "I've never heard of that!" and turned and walked away. I couldn't believe the reaction, but it was there and I had to deal with the lack of understanding.
I'm glad to hear that for now, you are cancer-free. That is great. However, I also know how it feels to be waiting for the "other shoe to drop." It would be so good if we could have a crystal ball to see the future.
However, we don't know what we will face and perhaps that's a good thing (?).
Please continue to post on Connect. Eventually, there might be others who will join this forum and connect with you at a level that will be supportive and helpful. It wasn't until my third surgery, in 2016, that I found Mayo Connect and got some support.
You mentioned that family members have had cancer. If you are comfortable doing so, could you share some of the types of cancers they have had? Are your follow-up cancer check-ups looking for their types of cancer or just cancer in general?