The Results Are In...

In March of 2012 I was in need of a new family physician.  My husband and I weren’t thrilled with our current doctor so we decided to give Dr. Venkateram a try.  My initial visit with “Dr. Ram” was more of an introductory visit.  He was very pleasant and friendly as he looked over my chart.  When he saw my family history of breast cancer he seemed surprised.

“Your mother was only 22 when she had breast cancer??” he asked.

“Yeah, something like that,” I replied.

“And your aunt was 38 when she passed away from breast cancer??” he asked again, somewhat astonished.

“Yes…” I answered.

“Have you been tested for the BRCA gene?” he asked me.

No, I had not been tested.  Two doctors offered me the test before.  The first doctor had given me the BRCAnalysis kit to take home when I was 24.  I was too afraid to do it.  I didn’t want to know my results.  The second doctor mentioned it to me when I was 27.  I asked him what I would do with the information if it came back positive.  He told me that we would just start screening at 30.  30 was only three years away, so why be tested and worry if it’s positive, right?

Dr. Ram urged me to test for the BRCA gene.  In fact, he told me that I should already be screening with mammograms.  That was news to me!  No doctor before had mentioned me getting a mammogram.  I was only 28, I thought only older women get mammograms.

Dr. Ram excused himself from the room to make a phone call.  At first I thought that was rude, but maybe he had a patient that had an emergency.  When he came back, I found out that apparently I was the patient with the “emergency”.  Dr. Ram had called Dr. John Cox’s office, told them about my situation and asked them if they would see me.  Dr. Cox is a breast surgeon.

“Why do I need to see a breast surgeon?”  I asked.  “I don’t have breast cancer.”

Dr. Ram explained to me that when women have the BRCA gene mutation, it is strongly recommended that they have a prophylactic double mastectomy.  Holy crap!  This is the first time hearing anything about surgery.  I couldn’t help but feel like this doctor was overreacting.  No one in my family has ever tested for the BRCA gene, so we don’t even know if I have it.  And here he is talking about surgery.

As soon as I left that appointment, I called Dr. Cox’s office to schedule an appointment.  The receptionist seemed to know all about my story and told me to come in right away to meet with Dr. Cox.  “Right away” actually meant two weeks later.  I figured it couldn’t hurt to talk to this doctor and see what’s up.

On March 28, 2012 I met with Dr. John Cox.  He did a manual breast exam and explained the BRCA testing to me.  He told me that if the test comes back positive we could screen every six months with mammograms and MRI’s, there is Tamoxifen (but he doesn’t suggest it) and surgery.  What is with these doctors and surgery?  Why cut off perfectly healthy breasts?

“So would you like us to do the BRCA testing?” Dr. Cox asked.  “It’s just a quick mouth swab.”

I took a deep breath and said, “Sure.  Why not?”  Part of me couldn’t help but think that there was no way that I had this gene.

The nurse handed me this tube to spit in and some Scope mouth wash.  “Swish this around your mouth and then spit in this tube until you fill it up,” she said.

Ew.  How embarrassing and silly I felt when I was practically drooling all over myself trying to get my spit in this cup.

After I gave the nurse my spit, Dr. Cox told me it would be two to three weeks until we received the results.  He suggested I have a mammogram done in the meantime.  Luckily, the office was right down the hall and they had an opening available for me that day.  I headed on down to the mammogram office that was decorated with a lot of pink.  Everywhere I looked I saw pink.  Pink pens, pink purses, pink scrubs.  So I sat down in this pink palace and took a look around at the other patients who were waiting to have their boobies squeezed.  They were all so much older than me.

I don’t belong here, I thought to myself.  I’m too young for this.

The tech called my name, and as we were walking back to the mammogram room she gasp and stopped in her steps.  She gave me a bizarre look.  “When is your birth date?” she asked.

“November 24, 1983” I answered.

She just smiled and handed me a gown to put on.  Must be part of their verification process, I thought.

When I came out of the changing room with my pink gown on, the tech apologized.  “I didn’t mean to sound so surprised, but when I saw your birth date I just thought you were too young to be having a mammogram,” she explained.

I told her my family history of breast cancer and how Dr. Cox just gave me the BRCA test and thought it would be a good idea to have a mammogram.

The mammogram itself did not hurt, despite what some women say.  It was quick and easy.  The tech told me that I should have my results in a few days.

Literally the next day Dr. Cox’s office called to tell me that my mammogram came back clear.  I felt relieved.  Like a weight was lifted off my shoulders.  That weekend was my son Charlie’s second birthday party and I did not want to be stressing over mammogram results!

Two weeks passed and I barely thought about my BRCA testing.  I started running with my friend Leona.  I was quite out of shape since Charlie was born and thought it was time to lose a few pounds.  I bought a jogging stroller and started with the Couch to 5k app.  I didn’t realize how out of shape I was until I tried to run just 30 seconds.  Ow!  Shin splints galore.

Another week had passed and I still hadn’t heard anything regarding my BRCA test results.  I was getting a bit antsy and decided to give Dr. Cox’s office a call.  They told me that they still haven’t received the results either, but as soon as they did they would call me.  Another day or two went by and I called them again.  Nothing.  Being the impatient gal I am I decided to call Myriad directly to see what was the hold up.  The man I spoke with told me that they were in the final stages of testing and it would be a few more days. 

So I waited a few more days and called back.  The girl I spoke with this time told me that my results were available and that she would send them over to Dr. Cox’s office by Monday.  She couldn’t tell me my results though.  Up until this point I had convinced myself that the results would be negative, but when the lady on the phone said, “Hang in there, sweetie,” at the end of our call I knew what the results were.

I spent that weekend visiting with a friend in St. Pete, running and playing with Charlie.  Anything I could do to keep my mind off of what my BRCA results could be.

On Monday, April 16 I called Dr. Cox’s office (I don’t like to wait).  The girl said she received the results, but Dr. Cox hadn’t looked at them yet.  They would call me back.  The girl called me back around 2:00pm while I was at work and right away said, “Terri, I have Dr. Cox on the phone for you.”

Crap, I thought as my heart sunk expecting the worst.

Dr. Cox’s words sounded fuzzy to me, and all I could make out was “I’m sorry, but your BRCA results are positive.  If you’d like to schedule an appointment to come in and talk with me…”

No, I need answers now.

“What does this mean??”  I asked.  “What do I do??”

“Well, the BRCA 1 mutation means you have an 87% chance of getting breast cancer,” Dr. Cox explained.  “I strongly suggest having a prophylactic double mastectomy.”

“But… I…” I couldn’t get any words out.  “How does that work?”

Dr. Cox continued to explain the surgery.  He can do nipple sparing with the incision under my breast so it would be barely noticeable.  The plastic surgeon can sometimes do straight to implants, but sometimes they have to use expanders…  This was all too much.

“What about that drug… tamoxifen?” I asked.

“I don’t usually recommend that,” said Dr. Cox.  “It has great side effects and could put you into early menopause.  Plus, we only recommend you being on it for five years max, and it doesn’t decrease your risk of breast cancer that dramatically.  But having the surgery will bring your chances of breast cancer down to 1 or 2%.”

“I need time to think… I don’t know…” I stammered.

“Well, I am here if you have any questions,” Dr. Cox said.  “If you want to talk to other doctors or a genetic counselor we can give you a number to call.  But, I do suggest that you have the mastectomy before having anymore children because if you get breast cancer while you are pregnant it is very hard to treat.”

And so, my whole world just came crashing down around me.  Not only do I feel “destined” to get breast cancer, but I feel as though I need to be making decisions that will affect my life right this very minute.  Big decisions.  And to make a decision before I get pregnant again??  But what if I do get pregnant again??  What if I was pregnant right then?  I was pretty sure I wasn’t pregnant, but you never know.

Receiving life changing news over the phone at work in an open environment where I couldn’t react the way I felt because I didn’t want everyone to see me.  I quietly packed up my laptop and left.

I drove home in a daze and as I exited off the highway for home tears welled up in my eyes.  Everything was going great in my life.  I have a wonderful husband, a beautiful child, I just received a promotion at work.  Why was this happening?  I am not a strong enough woman to make this kind of life changing decision.  I wanted to run and hide from my problems.

When I got home I cuddled up in bed with Charlie and Jason and just let the tears flow.  Being with my two boys was the only thing that made me feel safe…