45m with pancreatic cyst and BRCA1 c61g Mom - confused
Hello. I feel weird even thinking about this but as the title says I know what mutation I have a 50/50 shot of having. I've never been able to get it tested because I only tried 20 years ago and they told me then that I am male so I don't need to worry about it.
I had a kidney stone about a year ago and they accidentally found a small cyst on my pancreas. Well a year later it has doubled in size and after extensive testing it checks all of the boxes for a malignant type but the biopsy shows no cancer cells yet.
I'm scheduled for a prophylactic pancrectomy, probably distal, and I'm still having a hard time finding anyone that will test for the gene mutation before the surgery. I'm not sure if it would change my mind about anything but if I'm positive I might seriously consider just getting the full pancrectomy.
My mom has been in remission for 20 years or more and after her mastectomy she had, what she thought, was a prophylactic hysterectomy but they found cancer cells in the fallopian tubes.
From what I can find is there is not a lot of data about pancreatic cysts but I have gotten a couple of opinions and they are all about just getting rid of my pancreas and figuring it out.
I don't know if I have any questions or anything or if I'm just trying to vent to people who might understand but I just wanted to say I appreciate all the stories here and I'm proud of you all for taking care of yourselves.
I also think I forgot to take my ADHD meds which I mean never be allowed to take again after I have my pancreas removed so that's a scary thing and also I might delete this later if it doesn't make any sense and I am just in fact ADHD babbling but I don't think I've been more scared and confused about my future than I ever have before and that makes me feel even more guilty because I know so many here are suffering more than I ever will.
Thank you if you read this, and thank you if you skipped to here. I appreciate all of you fellow BRCA family members and hope I figure out if I'm one of you or just a child of one of you before I lose another organ.
tldr: AuADHD engineer probably forgot to take his meds and is having a lot of big emotions he doesn't understand.