Status Symbols

Maybe I'm misleading you a bit by the title.  Maybe I should have called this post "My Status and What It Means," but it just didn't quite grab my attention the way the chosen title did.  Of course, it doesn't matter, because the content will be the same, so I hope you'll bear with me.

Friday was chemo treatment #5.  In case you've lost count or haven't been keeping up, that's 5 out of 6.  Only one more to go, and I am already marking the days off in my mind until I can call it quits with chemo.

Even though that means I'm one step closer to surgery.

Which brings me back to my status, and what I found out when the genetic counselor came by to see me during chemo.  First, I tested negative for the KRIT1 gene, which can cause cavernomas in the brain and spinal cord.  This was important because it's a condition that my sister suffers from, and it's a condition which could have played a role in the medicine(s) my oncologist put me on for hormone suppression when I go into maintenance mode.

But I tested positive for BRCA2.  I have to tell you, I have thought for years that this did not run in our family because my mother was the first person ever diagnosed with breast cancer, no matter how many generations I went back.  I have done even further research on my family tree since then, and that still holds true.  There are some circumstances which may mean that the mutation just didn't have a chance to reveal itself in earlier generations, such as my grandmother having a hysterectomy in her early 30s, and her mother dying from tuberculosis in her 20s.  So that's one avenue the gene mutation could have traveled.  And there are a couple of generations on my grandfather's side where there were all male children, and the gene could have passed through them without affecting the men.  Two distinct possibilities, but it's a mystery that may never be solved.

Do you like my cheesy, almost angry grin here?  It's in honor of my Animal hat, picked out by my sister and older niece.  I love this hat -- it's fleece-lined and perfect for walking the dogs.

So what does this BRCA2 status mean for me and my family?

I think I'll take that as two questions and start with what it means for me.  First, I have to decide whether it's worth it to have a single or double mastectomy.  If I opt for a single, I have a 50/50 chance of having breast cancer on the other side, and I think that's within 5 years (so many statistics have been thrown at me that it's hard for me to keep them all straight, so bear with me).  In some ways, knowing my status is positive makes my decision so much easier.  I've already decided to have a double mastectomy, and I'll discuss this with the surgeon when I meet with her next week.  I'm sure that she will not try to discourage me in any way.  Having a double mastectomy also means reconstruction will be easier and that everything will be "matchy-matchy" when all is said and done.  Who doesn't want that?  ;)

Because BRCA2 also means that I'm at a much higher risk for getting ovarian cancer, I will probably opt to have my ovaries and fallopian tubes out as well.  I do not plan on trying to start a family at this late date -- in fact, I'm glad I never had children because of this diagnosis -- so I really have no need to hold onto my ovaries, especially since I will be taking hormone suppression drugs for 5 years after I'm finished with the Herceptin in September.  That means that the estrogen which would protect my heart and maybe my bones won't be producing anyway, so why not take the easy way out on this one?

And that leads me to my next decision.  If I'm already having my ovaries out, maybe I should also opt to have a full hysterectomy, since one of the drugs I'm taking for chemo can cause uterine cancer.  This I haven't decided just yet because it's one thing to have a double mastectomy (surgery on the OUTSIDE of your body) and an oopherectomy (surgery done laproscopically through very small incisions).  A hysterectomy, unless I am very much mistaken, requires cutting through muscle tissue and moving around "stuff" that is in the belly.  I am a big surgery fraidy cat already, and that sounds like more than I could maybe bear.  We'll see when I talk to my surgeon what she has to say on the subject.

So as you may have noticed, that's quite a bit of going under the knife for me in 2012.  That doesn't even count my reconstruction surgery, so I'm guessing that I'm going to become quite familiar with getting around in a hospital room this year.

Yay.  Lucky me.

(Actually, I do think I'm pretty lucky because I get to make informed decisions, and I'm aided in that process by a team that is dedicated to getting me healthy.)

Eventually I will make a video of this hat, as it does a bit of singing and dancing.  I can say thanks to my mother-in-law for sending me this one.  It absolutely terrorizes one of my dogs.  The other is oblivious.  See how thin my eyebrows are getting?  Maybe I'll opt for a bit of makeup next time I take pictures.

Now, instead of talking about myself for a while, I want to focus on what this gene mutation means for the rest of my family.  My immediate family is pretty much unaffected -- my mom is already dead, and we can assume the bad gene came from her side.  That means my dad most likely isn't the carrier, and my sister has already been tested for BRCA1 and BRCA2, and she came back negative.  As she put so eloquently last night on the phone, it looks like we got an even share of the crappy genes -- she gets KRIT1 and I get BRCA2.

But for the rest of my family on my mother's side, this BRCA2 mutation could have implications.  My mother had three brothers, and two of them are still alive.  If either of them have the gene (and there is a 50/50 chance for each of them that they do) this could mean they are at higher risk for prostate cancer, pancreatic cancer, and male breast cancer.  The biggest concern here is the prostate cancer, because the increased risk is something like 20%, whereas the other two are higher than the average population but still somewhere in the range of less than 10% increased risk.  It also matters for their children.

If my uncles test negative, then they can know beyond a shadow of a doubt that they did not pass that mutation on to their kids.  But if they do test positive, their children might also want to be tested.  And while the males have a greater risk of certain cancers, the females have an even higher risk for ovarian and breast cancers.  I mention this because I have more female cousins than male.

So that's about it for me this go round.  One more piece of the puzzle has been put into place, and December 20, another set of pieces should slot in.  That's the day that I meet again with the surgeon and also have a mammogram and ultrasound to see how much good the chemo has done me.

And to leave you with one last bit of positive news, my tumor was so small this last visit that my oncologist couldn't take a measurement.  She said that she wasn't sure she could feel it at all because it was surrounded by so much regular breast tissue.  Let's hope that the mammogram and ultrasound show a tiny spec or nothing at all when I go in on the 20th!