My Story - Part 3

When I was in high school, my mother was diagnosed with breast cancer.  I was your standard self-centered teen back then and, to be honest, I don't remember much of her diagnosis or treatment.  It didnt seem to have much to do with me.  A few years later, I remember hearing that an aunt on my father's side had received a similar diagnosis.  But aside from a few prayers sent her away, it didnt impact my life at all.

Until the spring of 2010, when my mom decided to be tested for the BRCA gene mutation.

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"BRCA" is the acronym for the gene mutuation that casues heredetary breast and ovarian cancer syndrome.  I'm not a scientist, but my understanding is that everyone has two BRCA1 genes and two BRCA2 genes.  If someone has a mutation on one of these genes, their risk for developing certain cancers increases, like this:

BRCA1 mutation	36 percent to 85 percent lifetime risk for breast cancer 40 percent to 60 percent lifetime risk for second breast cancer (not reappearance of first tumor) 20 percent to 60 percent lifetime risk for ovarian cancer Increased risk for other cancer types, such as prostate cancer
BRCA2 mutation	36 percent to 85 percent lifetime risk for breast cancer (in females) 6 percent lifetime risk for breast cancer (in males) Up to 27 percent lifetime risk for ovarian cancer Increased risk for other cancer types, such as pancreatic, prostate, laryngeal, stomach cancer and melanoma

(Those numbers are from here).  Today, physicians can test to see whether an individual carries one of these gene mutations.  If so, that person can elect to take certain preventative measures to reduce their elevated risk of cancer.  That is what my mom wanted to do if she had a positive test result.

I felt strongly that my mom didnt need the test.  It had been so many years since her own diagnosis, and she had been doing well since.  And we really don't have an extensive family history of breast cancer - or any other type of cancer.  And, honestly, I didn't want to know - I had faced cancer once, and had no desire to know if it might be headed my way again. 

I never for a second thought her result would be a positive one.  But it was.  The BRCA1 mutation runs in my family

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Even after this result came back, I still didn't want the test for myself.  But I had put my trust in Dr. Ginder for years and years, so when he insisted that I be tested I marched myself over to the genetic counseling team at Massey, where Heather Creswick took a blood sample and sent it on its way.  Honestly - I was still pretty sure my result would be negative. 

Unfortunately, a few weeks later, Heather had different news - I also carry the BRCA1 mutation.

Hearing her tell me this was almost harder than when I received my Hodgkin's diagnosis.  Unlike that time, I understood the diagnosis now.  I asked Heather if this result explained why I had developed Hodgkin's in the first place.  There is still no concrete answer for why otherwise healthy, active, young people develop that particular lymphoma, and I hoped that maybe, if nothing else, in this new diagnosis there would also be an answer to the question that has long plagued my mind with respect to the old one.  But Heather had looked and didn't find any research connecting the two.

Heather finally handed me the papers bearing my diagnosis in black in white and I told her would call Dr. Ginder that afternoon.  As I wound my way through the MCV campus to my car, I wished for the first time in years that it wasn’t quite so full of familiar faces.  The last thing I wanted was for someone I knew to find me in that moment. 

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I didn't walk to my car.  Instead, I found myself wandering the streets around MCV trying to make sense of what I had just learned.  It was different from my Hodgkin's diagnosis - when it seemed a given to tell friends what was going on.  This time, it seemed worthless to call anyone - how would they understand?  How could I explain that in many ways this diagnosis rocked me in a much deeper way than when I learned a fight with Hodgkin's was before me?  This time there was no named enemy - just some vague possibility somewhere in the future.

And how could I explain the sudden realization that for many years I had been, apparently, operating under the self-righteous belief that I somehow didn't deserve another unfavorable diagnosis?  That I somehow deserved to escape future illness and pain because I had already paid my dues?  For the first time it occured to me that somewhere deep down I felt like I had already been through the diagnosis.  The staging.  The treatments that didn't work.  The treatments that finally did.  The follow up appointments.  The recurrence scares.  How coudld I explain that part of me felt like I had given cancer my youth, my relationships, and thousands upon thousands of dollars, and that I didn't deserve any more?  That what I really found myself asking was - what more could this disease could possibly ask of me?

It was one of the most frustrating and scary mornings of my life.

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But, as he has done so many times for me, Dr. Ginder stepped in to pull me out of that grey place.  As Massey is so good at doing, he quickly expanded my team to include Dr. Harry Bear and Dr. Cecila Boardman.  And they all agreed - combined with the risk for secondary cancers as a result of the treatment I had received for Hodgkin's, the BRCA1 mutation likely made my personal risk of developing breast or ovarian cancer very, very, very high.  But there are still no studies on that particular combination of factors, so we can't be sure exactly how high.  So what to do?

My team recommended an immediate double-mastectomy and a hysterectomy by the time I am 40. 

Every woman (and man - men carry it too!) who receives a BRCA diagnosis has to make the very personal decision of what type of action they want to take.  The gravity of that decision doesnt really sink in until its time to make it.  I adore each of my physicians at Massey.  I trust them implicitly.  And I know I receive the very best care in their hands.  But after months of praying, talking with friends, and research of my own, I just couldn't reconcile in my heart going down the road they were recommending.  A big reason why is because I so deeply believe in the research being done at Massey.  And I believe that if I ever do receive another cancer diagnosis, we will have treatments and cures beyond what I can even imagine today.  I can't with good faith go through those surgeries when monitoring is available.  When progress is still being made.  When we are fighting such a good, hard fight against this disease and making headway every. single. day.

I know I worry my doctors in making that decision.  But I also know the amount of hope and faith I have in the work being done in so many labs will give me the strength to face whatever may come in the future.  And that I will have awesome doctors by my side to help me down that road too.   

So, instead of surgery, I pay lots of visits to Massey.  Each year they give me an MRI, a mammogram, lots of x-rays, an internal ultrasound, a CT scan, more physical exams that I'd care to count, lots of blood work, along with all the normal (really fun) gynecological stuff.  The hope is that if one of them is always in my business, we'll catch anything early - and be able to treat it successfully.  And I have total faith that if that time comes, we'll beat whatever we find.