Hereditary Cancer Syndromes

Hi @banelson - this is a really tough diagnosis to get, and it's understandable that you're feeling overwhelmed.

This video from our Mayo Clinic experts may help answer some questions you might have:
-Video Q&A about Cancer and Genetics: https://connect.mayoclinic.org/event/video-qa-about-cancer-and-genetics/

I welcome in others who have dealt with challenging cancer diagnoses or helped others through them, including @sandyjr, @hopeful33250, @elizm, and @roch.

Banelson, have you explored if there are any in-person support groups through your hospital that you would feel welcome at?

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?

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.

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?

@banelson Let me also add my welcome to Mayo Clinic Connect. I'll bet you have been reading many posts from people who are experiencing varying degrees of health challenges. And from my own story, I know often we feel so alone, or don't feel others may understand our frustrations/worry/apprehension on this journey.

While I do not know if my health situation has any hereditary links, other than "a tendency towards [fill in the blank here]" that doctors have mentioned, finding support is important. We each have our own story, what we are living with in addition to how we cope. As @hopeful33250 mentioned, please stick around here. Connect is a great place. Airing your concerns will life some weight off your shoulders, and you never know who is reading your post, finding a kindred spirit.
Ginger

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.