Tuesday, May 28, 2013

Hello Mortality

My grandmothers lived to be 88 and 93 so until just before Mom died I thought we had "good genes" and I'd probably live into my 80's or 90's.  Mom died at 71 only 3 years after she was diagnosed with breast cancer.

I was filling out the family history paperwork for a genetic counseling appointment when it hit me that our family history really didn't look that good after all.  At least 4 female relatives had died of ovarian cancer and several men had died of cancer too.  All of them on this same branch of the family tree.  Most of them living to approximately 70 years old. Seventy sounds old until you are in your 50's and realize it's less than 20 years away. 

The past few weeks have been a whirlwind of new information and way more doctor visits than I would every imagine a healthy person would have.  Probably more doctor visits than any time in my life previous to this.

As I sift through all this I am finding some good news.  One piece of good news is that the members of our family who were diagnosed with breast cancer were in their late 60's.  My mother and aunt were both diagnosed at 68.  The experts say that those of us who test positive for the BRCA2 mutation should start paying close attention about 10 years prior to the earliest diagnosis in the family. 

From what I've read and seen online many families are in a very different place with family members diagnosed in their 20's and 30's.  I am grateful for our family and at the same time so sad for those who are faced with these choices during the marriage, babies and young children phase of life.

More than anything this positive test has forced me to look my mortality in the face.  I'll be 56 next week.  My plan to live to be 90 seems to be crumbling.  Wake up, Julie!  You might not have that much time left.

Monday, May 27, 2013

Positively Positive

It's been just over a month since my cell phone rang and a sweet young genetics counselor said, in a very solemn tone "Julie, your test was positive".

It's been a month since I sat down with the Director of Clinical Cancer Genetics as she explained that because I have tested positive for a BRCA2 mutation I may have up to an 84% lifetime risk of developing breast cancer and a 27% lifetime risk of developing ovarian cancer as well as increased risks in developing a second breast cancer, pancreatic cancer and melanoma.  She offered to answer my questions and gave me referrals to two surgeons to help me review my options.

Since then I've seen several doctors and spent a lot of time with technicians and in waiting rooms.  I'd love to stop thinking about "my options" for just a few days but I can only make a few hours at a time and then I'm back to thinking about it again.  Searching the web every time I have a question.  Reading everything I can find about hereditary breast and ovarian cancer.  It feels like I'm obsessed. Going over and over the options and also worrying about my other family members and what this means to them.  Will they get the test? Will they test positive too? What if they don't get the test?  What if they do?

"Glass half empty" isn't always my reaction to things but I do need to remind myself to look for the "upside" or the "silver lining" which has been pretty difficult in these first few weeks.

It's time to prepare for a unexpected journey.  I'm still working on the first steps but already I can see a few "upsides".  Testing positive for BRCA2 is pretty negative.  But I have more information than my Mom and many other people in my family so I'm determined to stay positively positive.