Risk Factors

Yesterday was a trip to the business office at Kaiser to finish filing my disability paperwork and then to an hour+ appointment with Genetics. I can't believe the # of appointments that have suddenly filled my days, but I better get used to it, it's gonna be like this for a while...

The genetics counselor, Nicole, is terrific. Perfect amount of science and statistic, mixed with compassion and sympathy for what I'm facing. Basically, I now have a 27% chance (over the course of my lifetime) of getting ovarian cancer, a much more difficult cancer to detect early and treat once diagnosed. There is a blood test I have started taking, but it's known to result in lots of false positives. And there is a pelvic ultrasound, which I am in the process of scheduling so I have a baseline. The decision (one of many) I am faced with in terms of this risk factor is whether to have an oophrectomy (remove my ovaries) and significantly reduce my risk of ovarian cancer. Of course removing my ovaries at 35 means I will go into early menopause. If I was 45, this would be less of an issue. And yes, I'm done having kids so that's not it. I just picture myself post oophrectomy with hot flashes, mood swings, and a beard, and I really hate that image. I know that chemo will likely also bring on early menopause so it's a matter of collecting more information, and in the long run, doing what I can to protect my health for the rest of my life.

Other things we learned yesterday - even though I just had a double mastectomy, I STILL have a small chance of getting breast cancer again! Since there are still some breast cells in my body this is a possibility, unlikely, but possible. I also have an increased chance (by 2%) of getting melanoma, stomach and pancreatic cancer. I mean if I really think about it, there are so many possibilities and I really refuse to turn this experience into a way to scare the shit out of myself and become a paranoid hypochondriac for the rest of my life.

As far as Talia and Minna are concerned, they have a 50% chance of having the breast cancer gene. Once they are both 18, they can decide if they want to be tested. I am hopeful (as are the geneticists we met with) that by the time they are old enough to be tested, there will be so much advancement in medical science and cancer research that this will all be irrelevant. Sometime in the future, (when we have more time!) Jason will collect his family history of cancer and that will help us determine if their risk is higher. Since we are both Ashkenazi Jews, it's an important exercise to go through.

And last, and for now what I find most concerning, is the idea that my medical record is now marred. Should I need to apply for health insurance elsewhere, I could be really screwed. The GINA act was passed in May (Genetic Information Non-Discrimination Act) which supposedly protects patients from being discriminated against based on their genetic disposition, but there are many loopholes. And really what makes this more difficult for me is that I have breast cancer and insurance companies won't like that. Even though I've significantly reduced my chances of breast cancer again (and eventually ovarian cancer too) it's still a disadvantage. I've got research to do on this as well (and thanks Ali for offering to help with that) because I understand there are ways to avoid this issue. Come on Obama!

I continue to progress with my recovery. I'm getting more active and helping out with the girls more but I'm noticing that by their bedtime I am sore, uncomfortable and exhausted. I've got to learn to pace myself!

On to Thursday...