Cancer Gene Testing

Time is definitely flying, especially as my to-do list continues to grow (at least my tumors aren't! .....Not funny? K, I'll try better next time.)

So genetic testing...what is this, right? Before I begin, please know this is all from my memory & notes that I took, so don't take this as factual data from the doctor's mouth. Simply use it as information to lead you on a path of your own curiousity & discovery.

When you're asked your family medical history from a doctor, nurse, etc, do you really know it? I say this because I had always assumed who had certain diseases & illnesses in my family, or what was passed onto me. I knew there was cancer but never to the extent that I found out. To prepare for it, I had to research my medical family tree back to my grandparents' siblings - age of death, if they had cancer (if so, what age, type, treatment), cause of death.

This means my siblings, my parents' siblings & their kids, and my grandparents' siblings, and then if there's anyone else (like any of my grandparents' nieces/nephews).

Honestly, I knew some of my Mom's side, but basically little to none from my Dad's, and apparently this is very common (read further) except in the cases in which you grow up with and around your father's family. If not, it's a goose chase. So I left this to my parents. I knew they wanted to do something for me from afar, and boy was this helpful, for them too I'm sure.

Now to the meeting. Know that we all have potential cancer cells in our bodies, it just depends on what makes them mutate - heredity, environment, or plain dumb luck. This means that all cancer is genetic, but not necessarily hereditary. 80% of cancer is random, and 20% of cancer is familial. If I am positive for the cancer gene (which includes pancreatic & colon as well as breast & ovarian), it means it was passed onto me by one or both of my parents. My twins would get checked when they turn 21. And it would take my parents (or my first cousins) to get tested to determine which side of the family it came from (read further for insurance).

As Dr. Ott drew the tree, it became more & more apparent that it's both sides of my family that have the potential to carry the gene. However as it started to appear as if it came from my Dad's side, she said all of the men dying at a certain age on my maternal grandmother's side was curious to her. Meaning, that even though her 3 brothers died of various causes in their mid 70's, they could have very well have had some type of pancreatic or colon cancer (since there was a sister that had breast and one that has colon) and didn't know it or test for it. Depending on the man's age, where he's from, etc there's less & less known until recently - 20 years ago. Anything before that should only be taken with a grain of salt. And she was more impressed that I in fact had as much info on my Dad's side since men don't normally keep track of this, again until recently. So thank you Great Aunt Joann & Dad's first cousin (who reconnected with him after Katrina).

And prevention? Birth control for more than 5 years. Check. Having kids. Check. Breastfeeding. Check. (I forget the percentages of the reduced risks for these.) So what else to do but self-exam? Having a double mastectomy reduces your chance getting breast cancer by 95%. Almost check (one week to go!). Having a complete hystorectomy (complete removal of uterus & ovaries) reduces breast cancer by 50% & ovarian cancer by 96%. Not checking this one
off anytime soon.

So I find out in a couple of weeks. Results could come back in 4 different ways: positive, a false negative, true negative or uncertain. Because of my diagnosis & the high cancer rate in my family history, my insurance will cover it. If it's positive, my sisters and cousins' insurances would most likely cover their own testing (and because of my diagnosis at such an early age) should they want to know. If it comes back with a false negative or uncertain, there's a 2nd testing that could be done, but insurance most likely wouldn't cover. And honestly, I probably wouldn't do it. Most women wait until they receive the results to make the decision for a double mastectomy (or medically called bilateral mastectomy), but with my history & being so young, I didn't want to take any chances of having to go through this again in my life.

Why should people know if they have the cancer gene, I've been asked. I feel that it's better to be aware. You could always be that one to have just dumb luck, like I might be. But even Dr. Ott said they still don't know why or how it happens sometimes, even with tons of family history, and still come out negative. And should anyone be positive, maybe it's that MRI or mamogram that your insurance would then cover before you turn 50 (when it's normally first covered by insurance) that saves your life. Or that colonoscopy in your 30's that shows a tiny spot. Or even make your own choice for surgery to reduce your own chances.

But then if it's negative, I still found mine by self-exam & being aware. Dumb luck. And by reading all of these notes, I know it comes across as if I'm uber-positive. Don't get me wrong, I'm trying. Getting sized for a wig today & my hair chopped off tomorrow to be used for the wig = very freeing. But I do have waves of moments, and more now as it's getting closer. I wrote the first Note to simply be in control (go figure) of how people found out. But as I continue to write, know that it's helping me as much as you each tell me it's helping you. So, with that....much more to come.

All my love,
Laurie