A Lot Has Happened, part 1

A lot can happen in less than two months.  My last post reflected back on how my life changed four years ago, when I was diagnosed with breast cancer and found out that I am BRCA 2+.  And since writing that post, a lot has changed yet again.  

Because I am BRCA 2+, I have been closely followed by my doctors at the high risk clinic at UVA. Every six months, I get a blood test that measures my CA125 levels.  The CA stands for "cancer antigen" and this test looks for elevated levels of the antigen, which is present when your body is fighting cancer, specifically ovarian cancer.  It's not a perfect screening tool; honestly, they check it because they can and there are no other more reliable tests for ovarian cancer out there.  I also get a pelvic ultrasound, which allows the doctor to visualize areas of potential concern.  It's also not a perfect screening tool, so I always take my results from these tests with the proverbial grain of salt.  

However, around Christmas time, my CA125 came back above normal for the first time.  It was only slightly elevated, but I had no idea what the potential range of values might be or how concerned I should be.  Thankfully, my doctors are easily accessible to me and I was able to quickly reach them to ask about my results.  They were slightly concerned and ordered another pelvic ultrasound.  It came back fine.  We agreed to test again in a month, when we found that my CA125 had gone up again.  We waited a few weeks and tested again - up even more.  My doctor started talking about reevaluating my current care plan, which said that I would have my ovaries removed by age 40 as standard precaution for someone with BRCA 2.  She said that if we were planning to try to have children, we might want to get started on that and then get my ovaries removed immediately following.

At the time I went through chemo, my doctors had told me that it had the potential to cause infertility.  If I wanted to preserve my fertility, I should harvest eggs and have them stored for later use.  In order to harvest eggs, I would have to take hormones, which would also feed my cancer.  I opted not to do that.  So we had no idea if I would be able to conceive.  I stopped taking my tamoxifen (the oral chemo I have been taking for the past 3.5 years, which can cause severe birth defects) and we waited the 40-60 days it can take to clear out of your system.  

In the meantime, we ran blood work to assess my fertility potential - the results were dismal.  But my doctors said that those results have only been studied in the context of women who were already diagnosed with infertility.  Since I hadn't been diagnosed yet, maybe those studies weren't indicative of my fertility.  No one wants to tell you that you can't conceive or that you shouldn't conceive.  They are always very careful to help you make a decision you feel comfortable with, but I would have preferred someone to straight up say, "I think this is a bad idea."  I felt like I was making a huge gamble with my life at stake.

So what do the indecisive do?  We wait!  We waited a few more weeks and decided to test my CA125 again, just to see what it had been doing while I was messing around with fertility tests.  It had doubled.  That seemed like a pretty clear answer to everything we had been wrestling with, so Kevin and I decided to go ahead with the oophorectomy (removal of my ovaries) as soon as I could get on the surgery schedule.  Less than 10 days later, I was at the outpatient surgery center. Yes, this is a surgery that you don't even have to stay overnight for!  

I was out of work for two weeks, recovering from three small incisions used to remove my ovaries via laparoscopy.  I didn't even get stitches; they just glued me shut!  Even though the incisions were small, they cut through my abdominal muscles, which made it hard even to laugh, not to mention try to lie down in bed or get up from a sitting position.  Thankfully, I have the most wonderful caretaker husband, as well as amazing family, friends and coworkers, who all pitched in to shower us with meals, flowers, cards, and pampering treats.

Today was my first day back at work and I made it the whole day!  My abdominal pain is all but gone and my strength has returned.  I'm glad to have this behind me.  No more biannual blood tests and pelvic ultrasounds.  And no more worrying about what the results will say.  I feel enormous relief.  

But even more than this has happened since my last post.  Part two to follow tomorrow.