A breast cancer survivor shares her experiences with the BRCA gene.

Thursday, April 3, 2008

Of Butts & Breasts

I hadn't had this many men try to get me naked since college. Every time I turned around -- whether it was a doctor's visit or a test -- I was having to take my clothes off.

After I received my results right before Thanksgiving, I began researching surgeons to discuss my options. I needed to locate a team of 3 surgeons who regularly worked together: breast surgeon (to remove my breast tissue), ovarian cancer surgeon (to remove my ovaries) and plastic surgeon (for breast reconstruction).

From my experience with breast cancer, I found the best way to choose a doctor was by tapping into my trusty network.

I knew exactly who to call -- a breast cancer survivor who had had a mastectomy & reconstruction and was heavily involved with fundraising, and well-connected to the breast cancer community.

She didn't hesistate. "Dr. Bill. He's the best in the business. I'd go to no one but him." Dr. Bill apparently helped develop the "tram flap" in the 1980s and was widely sought for his expertise.

A tram flap is a procedure in which they essentially cut out a section of your stomach (or back or back of your thigh) and remove tissue-fat-nerves-vessels and transplant that under your breasts, where the breast surgeon has removed all your original breast tissue.

They've come a long way in breast cancer surgery & reconstruction. The breast surgeon goes underneath your skin and removes the tissue and the plastic surgeon replaces the tissue with stomach fat. (They professionally stuff your boobs -- kind of like you did with tissue paper when you were a pre-teen. Admit it! You've done it!) So what you end up seeing are your same breasts, but shaped better. In fact, I've taked to many women who like their breasts more after reconstruction compared to their original tattas.

The problem was -- and there's always a problem with me, it seems -- I didn't have much stomach fat. I did, however, have lots of butt fat.

There I sat in Dr. Bill's office, trying to convince him why it was necessary for me to have a "butt transplant" rather than a stomach fat transplant. But, he said it wasn't as effective and assured me the stomach was the way to go.

He did agree that I didn't have much stomach fat. (He also agreed that I had a big butt.) Therefore, I was also going to need implants to fill out my breasts...which, he added, would end up still being smaller than their current size.

I have always had small (I prefer to say "perky") breasts, which I have been fond of. But reducing my size any more would put me in a training bra.

This was always my luck. All I ever wanted was a smaller butt, but, instead, I was getting smaller boobs. And smaller boobs were only going to make my butt look bigger. Why God didn't create "butt cancer" instead of breast cancer is beyond me...

My next appointment was with the ovarian cancer surgeon, whom I had interviewed for an article a few years before. (Did I mention that I was a writer?) Anyway, I wrote a story on Dr. Zen and the next time I see him, he's staring at me with my legs in stirrups. I decided to take note of this situation before I ever did a story on someone again.

The third surgeon was a woman -- thank, God! -- named Dr. Jen, who was highly recommended by several of my girlfriends with "breast concerns." And, fortunately, Dr. Bill, Dr. Zen and Dr. Jen all worked together regularly as a team! Will miracles never cease?!

During this time, I had a scary mammogram in which there was concern that some calcifications near my breast wall were cancerous. That led me to minor surgery to remove the tissue in question using stereotactic mammography (not fun).

During my exams, I also read through the list of potential ovarian cancer symptoms...and saw that I had several -- swelling of fingers, lower back pain, abdominal pain, bloating. Of course, many of the symptoms could be related to hormones, but when you're a cancer survivor, all you think about is cancer, not hormones.

When I discussed this with Dr. Zen, he assured me that I had checked out okay and there was no need to fear. However, my nerves were shot, and I told him that as far as I was concerned, he could yank out my ovaries right then and there with his bare hands.

He looked taken aback. "Well, that's not necessary," he stammered.

After surviving cancer the first time, I've been tested every 3 months over the past 6+ years -- whether it's bloodwork at my oncologist's, or a mammogram, or an MRI, or an exam with my breast surgeon. And every 3 months for 6 years, I've had to wonder after each test...did they find anything? Is it back? I wanted to put an end to the wondering.

With the BRCA surgery of removing breast tissue and my ovaries, my chances of developing cancer again would significantly drop. To be able to have that kind of relief -- and live life without cancer hovering over your head every day (and it does, believe me) -- was motivation enough for me to get on with it.

I signed up for the 3-in-1 surgery as fast as I could. Ant then began preparing.

Wednesday, April 2, 2008

A Family Affair

When I conveyed the news to my family, they tried to decipher the information the best they could. After all, the BRCA gene is a fairly new topic these days--yet to be the buzz at the cocktail party circuit.

Besides the dilemma in deciding my next steps, the news also impacted my parents and my brothers.

One of my parents was obviously the carrier, and the more critical person to be tested for the gene was my mom since, if she had it, she would be at high risk for breast and ovarian cancer. It would also mean the gene would be passed down through her entire side of the family.

My brothers were also potential carriers, and if they were, this could affect their daughters. But no one budged. Mom saw no reason to test at her age, and my brothers said their daughters weren't old enough to develop breast cancer.


Note: Once the genetics lab establishes your profile, it's easier to test relatives since they know the specific mutation to look for. Consequently, the test is only a few hundred bucks versus thousands. And the results are not reported to health insurance companies (unless your insurance company is paying for it, of course)--so, it's totally confidential.

After reviewing a brochure featuring photos and illustrations of what my impending, preventative surgeries would entail--and how my body would be hacked up 50 million ways -- Mom became angry and suspicious. She didn't want me to be a guinea pig for my physicians. I wasn't too keen about the procedures either at this point. Dad found a newspaper article that reported the consequences of the BRCA test were overstated.

Underneath Mom's concern, though, was a nagging feeling that, in some way, she had contributed to my cancer--commonly known worldwide as "mother's guilt."

Her email to me made me realize her pain:
"We love you and hope this will be over soon without too much physical agony and discomfort. As the ones who brought you into this world,we feel every pain you have and every disappointment, and happiness."

Meanwhile, my oncologist asked me if Mom had been tested, and I explained Mom's reaction. So, Dr. Kay asked me to have Mom call her, which Mom eventually did. After they talked, Dr. Kay ended the conversation by saying that I was like family to her, and she wasn't going to let anything happen to me. This meant a lot to Mom and helped reassure her that my doctor's last name wasn't Jekyll.

But it wasn't the conversation with Dr. Kay that actually changed Mom's mind. It was because she called all her friends and asked their opinion, and they convinced Mom to get tested. So she did.

The results of Mom's test came in...and she didn't carry the gene mutation after all! It was Dad's fault! Of course, I could have told you that to begin with--those people from Alabama...

Once Dad was caught red-handed as the carrier, he seemed to recall that his father's half-sisters had all died of cancer. Hmm...

But I don't blame Dad for passing along the breast cancer gene to me. I blame him for giving me thick ankles and a big butt.

Tuesday, April 1, 2008

The only genes I'm interested in are premium denim

I am a 7-year survivor of breast cancer and now know that I carry the BRCA-1 gene mutation. This has enormous implications, none of which fit into my birthday plans of celebrating 50 this year.

I must go back to last July, when my oncologist--that overly protective, obsessive little vixen who is constantly advising me about exercise (do) and soy (don't) and stress (lower) and estrogen (avoid)--brought up the issue of me getting tested for this wayward gene. She told me the BRCA gene often surfaced in younger women who were diagnosed with breast cancer under the age of 50. And since I had had breast cancer at 42, I qualified. Lucky me.

I mulled over her suggestion for about one second, and then dismissed it. After all, when I was first diagnosed, my surgeon (who sat on "the" major cancer board that determined these sort of things) said my cancer wasn't due to heredity since no immediate female relatives had breast cancer when they were pre-menopausal -- a key indicator. The other doctors agreed my cancer was simply the (bad) luck of the draw.

It was also difficult to trace breast cancer in my family since males outnumber females. I have no sisters, no aunts and only one great aunt, who lived well into her 80s. I don't know how Aunt Thelma died, but I expect it was associated with her poor fashion choices. (She appeared at a family funeral with stop-sign red hair and a plunging neckline showing off her ample bosom. She was over 80 at the time.)

To confuse the matter, my paternal grandmother did have breast cancer, but she was almost 70 when she was diagnosed, lived off country cooking with loads of lard, and sucked in second-hand smoke every day of her marriage since my grandfather had been smoking since childhood. You've probably guessed that my family is Southern.

Even with a lifelong unfiltered cigarette habit, my grandfather lived until his seventies, and didn't die from cancer. And, here I was with stage 3 breast cancer at 42 and had NEVER lit a match for anything other than a candlelight dinner. Maybe I was living too clean a life.

But I digress. Two months later, I was in my gynecologist's office for my annual visit. When I brought up the BRCA matter, she jumped all over it, telling me that if I carried the gene mutation, then my chances of developing ovarian cancer were significant--so high, in fact, that I was "good as dead."

Furthermore, she pointed out, there were NO effective screening measures for ovarian cancer (like there is for prostate cancer) until it's in later stages of development...and then, it's often too late.

After this tidbit of info, I decided, why not? So, I set up an appointment with a genetic counselor to help me discover my fate.

During the visit with my counselor, Clarisse, she pulled out an enormous notebook and placed it on the table in front of me. She began flipping through the pages, giving me a refresher course on DNA...which was good since I had no recall from high school biology, when I was more interested in the hot guy sitting next to me in class than on cell formation. When Clarisse finished her lecture, she sketched an outline of a tree. Then it was my turn to fill it in with family members dangling from the branches.

Unfortunately, I know less about my family tree than I do about DNA.
In case you're wondering why I didn't come prepared--especially, since we're dealing with my fate here--it never occurred to me to bring along any family documents or quiz my parents before the counseling session. I must add that I was keeping my BRCA testing a secret from my parents, since their nerves have never recovered from me having cancer in the first place.

Therefore, trying to remember who needed to be included in the tree and on what branch--or even their correct name--was a significant challenge. I had to rely on my fractured memory.

You would think that since my mom had been taking geneology classes and conducting extensive research on her ancestral line for several years, I would have gathered a fact or two. She's traced her family up and down the East coast and as far back to the Mayflower, and presented each of us kids with a folder containing graphs and charts, and even a matrix (with a pop quiz at the end). But, I confess I never paid attention to it -- and frankly have misplaced it somewhere in my house -- because her family seemed quite dull. I ask you, would you care to read about a great aunt whose claim to fame was having perfect Sunday School attendance for 90 years?

Dad's family, on the other hand, was another story. While Mom's great aunt was garnering Sunday school merit badges, the story of Dad's great aunt was of her getting drunk off whiskey with her first cousin, and proceeding to shoot ice cubes up each others' skirts while sitting on the kitchen floor. Well, they were from Alabama, after all...and if you're from the South, you have at least one of those relatives. As my friend, Cheryl, puts it: "Every family has a skeleton in the closet, but we Southerners parade them out in front of everybody."

Despite Dad's interesting family lore, he knew little about his ancestral ties--as evidenced by the fact that we still have to remind him of his grandmother's first name (Della.)

Somehow I filled out the family tree, however, it looked somewhat drought-stricken. Clarisse said it was sufficient, but I think she just said that because she was growing tired of the whole process with me.

After that, all I had to do was Fed-X a vial of blood to Myriad Labs in Utah, the only lab in the U.S. that conducts BRCA gene testing. I was told I'd receive the results in three to four weeks. I also discovered that my insurance would pay for the testing, which is good since it's around $3,000...
My oncologist told me that if, in fact, I ended up carrying the gene, I would need to undergo a double mastectomy and a hysterectomy. Surprisingly, these prophylactic operations are much cheaper than cancer treatment, so insurance also tended to cover the cost of them.

A few weeks passed and I didn't think much about the test since I was convinced I was not a "carrier." Then, late one Friday afternoon, Clarisse left a message on my home phone, which I didn't retrieve until I had arrived from work at 6 p.m. Her message stated that she had the results, but was leaving the office for the weekend and for me to call her on Monday.
Unfortunately, I was scheduled to fly to Buenos Aires the next day for a 2-week vacation...so my news would have to wait.
When I returned 2 weeks later, now Clarisse was away on her delayed honeymoon. Is it my imagination, or does it seem to take an Act of God or Act of Congress to get vital information when you need it?

While Clarisse was off honeymooning, my husband, Gary, and I attended a wedding with my parents. We were sitting around chit-chatting after the wedding, when Mom happened to mention that her two first cousins both died of breast cancer at very early ages. I stared at her, aghast, and said, "NOW you tell me!"

Mom didn't understand why I overreacted until I fessed up about being tested for the BRCA gene. All to say, with this new insight, I took this testing seriously and began to worry. And so did Mom.

The following Monday, I was finally able to track down Clarisse, who had just returned to the office. She politely asked if I calling from work or home. That she would inquire about my whereabouts gave me a clue that the news might not be good. "Home," I replied.

She proceeded to go through the test in a casual manner, telling me that I "passed" the initial testing. But before I could breathe a sigh of relief, she dropped the bomb. Additional testing revealed that I had an extra set of DNA on the BRCA1 gene. Extra set of DNA=a mutation.