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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?
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Wow @hopeful33250 , you've pretty much hit the nail on the head in regards to how I'm feeling! Thank you for understanding. It's really hard to try and explain what you're going through to others. Everyone at Mayo has been amazing, but I still see my local doctors for general appointments. I actually saw a doctor this week for the first time since being diagnosed with a BAP1 mutation and was trying to update them on my condition when the nurse told me, "Sorry, BAP1 isn't a choice in our drop down menu." Ouch! That one hurt. It just felt like since they couldn't check a box about me, they were just writing me off. My husband made the comment that we often seem to wind up knowing more about my condition than the local doctors we see. It's hard hearing them say, "I've never heard of that before!"
In regards to your question on the cancers my family has experienced, they've been diagnosed with mesothelioma (both plural and peritoneal), renal cell carcinoma, and also cutaneous melanoma. BAP1 is tricky in that in addition to being a mutation that not a lot of people have been diagnosed with (as it's only been discovered in the last few years), it also is related to a lot of cancers that would be considered uncommon. The rarest of the rare, if you will.
Thank you for your insight on dealing with conditions that aren't commonly known and your understanding on how hard it can be in explaining them to others.