imagesThe curtain has been pulled back and the BRCA gene is out of the closet as are quite a few women who are now revealing they’ve also had the same life-saving double mastectomy as Angelina Jolie.

I now join the sisterhood she created with her bold editorial in the NY Times; I had my double mastectomy just four weeks ago.

Disclosure of something as personal as having had both breasts removed is quite a daunting decision for many reasons, least of which is fear of being seen as “less of a woman,”  as even a world-class sex siren felt obligated to note. Women have other fears: we don’t want to be defined by breast cancer, we don’t want others to see us as weak or vulnerable, we don’t want our bosses, business associates or competitors to think we’ve lost something more than our breast tissue.

Angelina Jolie goes into her new chapter as having already successfully defined herself beyond man-eating, husband-stealing object of desire no man could resist.  Along the way of winning an Oscar, adopting multi-cultural children and working for the UN to save more, the most skeptical were forced to notice that she is a great actress, humanitarian and that she and Brad Pitt were always meant to be.

She has her Brad Pitt, I have mine.

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My husband, David, keeping a watchful eye over me from a cot in the hospital the night after my double mastectomy. (My feet are in the foreground.)

STRIP TO THE WAIST, THE GOWN OPENS FROM THE FRONT

My collision with the BRCA gene came last summer, after finding a tiny lump in my left breast.   The self-discovery of a .8 cm tumor that turned out to be malignant inspired high fives from every doctor I consulted  — and there were many.

As a journalist, I plunged into the research, not just on my cancer but on the doctors  I would select to treat it.  I was triple negative, the type of breast cancer that “likes to travel” and unlike it’s breast cancer cousins (with receptors for estrogen or the human epidermal growth factor 2) there is no fabulous drug like Tamoxifen or Herceptin®

Still, with a .8 cm tumor signaling very early detection, I wondered if I even needed treatment other than it’s removal. My margins around the tumor were clear and the nearby lymph nodes were cancer free.

In an early consultation,  Clifford Hudis, M.D., the great oncologist at Memorial Sloan Kettering and current President of the American Society of Clinical Oncology (ASCO) said to me, “Well, you can stick your fingers in your ears and say: La la la la, I don’t want to hear the word, chemo, (or you can be well.”)  He also said I didn’t need the harshest of the chemo protocols, the often-dreaded ACT combination.

“How can you be sure I don’t need the big guns?” I asked.

“Because I invented it,”  he answered. (Good enough for me!)

Other oncologists agreed and all suggested beginning chemotherapy treatments one month after recovering from the lumpectomy.

The number of doctors I saw, the amount of times I heard, “Strip down to the waist, the gown opens from the front,” was dizzying. My Brad Pitt, called David, sat through every consultation, every examination as we both wrote down all we could in our dueling notebooks.

“Did that doctor really just say that most of his patients were more worried about losing their hair than losing their breasts?  Yes, we both heard it and crossed him off our short list.

Now to the BRCA gene, the hereditary part of breast cancer.  It is wearying to think of how many times I had to give my family history, the one where I always begin:  “I want to warn you, I come from a genetic pool from hell.”

My mother died of lung cancer having just turned 46. While she was a heavy smoker, her cancer was on the outside of her lungs.  Her mother died of lymphoma which appeared 16 years after beating throat cancer, definitely related to smoking menthol cigarettes.  My mother’s only sibling, a younger sister, died at age 45 after a five-year battle with breast cancer. One of my maternal grandmother’s sisters died of brain cancer, the other: breast cancer. And the first-born daughter of my first cousin (whose mother died of breast cancer) was diagnosed with lymphoma at age five. (She was successfully treated.)

Holy cow! you might say, but not the doctors talking to me about my cancer.

“Whoa, you’re way off the tree,” most said by the time I got to my great aunts and baby cousin.  “Only first degree relatives really matter.”

Huh? Nobody wanted to test me for a BRCA gene mutation?

WHAT EXACTLY IS THE BRCA GENE?

The human genome is made up of about 90,000 genes; each one makes a protein that has a job.  Some genes determine  the color of our eyes. Another makes a protein that keeps our eyes moist.  We don’t yet know the function of every gene (we may just use a fraction of them) but in the mid-90s scientists discovered the BRCA gene (which we all have) which makes a protein that prevents the formation of cancerous tumors in breast and ovaries.

When there is a mutation in the BRCA gene, there is no protection against tumors and one has up to an 87 per cent lifetime risk of developing breast cancer (as opposed to a 12 per cent risk in the general population) and over a 50 per cent lifetime risk of ovarian cancer (where there is a one per cent risk in the general population.) The risks start quite low, then get higher in each decade . Even with a BRCA gene mutation, most women can get through childbearing years without having to take any action other than monitoring. Then, as you approach age 50, the risks seem to take a leap.

If you are an Ashkenazi jew (with origins in Europe) as I am, you are at higher risk for the BRCA gene mutation than other ethnic groups. Still too far off the tree?

I had the lumpectomy on August 23rd, 2012.  Soon after, I embarked on my latest project, producing and directing a one-hour PBS concert special with ThePianoGuys, but first I went to see my family doctor. We spoke for an hour and a half and he ordered the $3800 BRCA test.

“I’m going to guess that your mother died of lung cancer before she had the opportunity to get breast cancer.”

So off went the simple blood test for analysis and off went I to Utah for rehearsals. The night before the big 10-camera concert shoot in Red Butte,  my cell phone rang; my family doctor was calling to tell me I tested positive for BRCA 1. I was stunned (after being waved off the idea by so many doctors), but not surprised (after losing so many people I loved to cancer.)

My double mastectomy was April 16th, 2013, the day following the bombings at the Boston marathon.  Within hours of the surgery, my stepson and his girlfriend visited and I sat up in bed, reassuring them  it was the best option and simply no big deal.  Then, with my antibiotic and hydration IV unit in tow, David and I walked the halls of the hospital as instructed to promote healing.

The 15 patients on the ward were all over-nighters who’d had various operations. Gaging from their age and gender, I suspect most were recovering from prostate surgery. As we all slowly shuffled back and forth, I in a Ralph Lauren bathrobe, others in their hospital gowns, David and I couldn’t help note that we just might be trapped in an episode of  The Walking Dead.

I was released on April 18th after two days on a self-guided morphine pump. I can only describe it as this: as you walk out of the hospital and into the parking lot, an invisible truck comes and runs you over. It must be what happens because by the time you get home, it’s exactly how you feel.

The pain is not just where your breasts have been replaced by an expander which serves as a sort of place holder in anticipation of reconstruction.  All the tissue has been removed up to your collarbone and some under your arm and around to your back which happens to be  the only sleep or rest option for the foreseeable future.

“Don’t women want to get rid of that back fat?”  David gently prodded.

Three best girlfriends flew in from three different cities in weekly shifts to help me out and give David time to work. The first crawled into bed with me for the first five days, ate Klondike bars, shared my Percocet and watched non-stop Law and Order episodes with me on three cable channels. As she left, she thanked me for one of the best vacations she’s ever had.

“WHY IS THE DANCE INSTRUCTOR DOING BETTER THAN I?”

Week 2 began with more challenges as another best friend flew in and was immediately monopolized by our dog, Scout, in full stomach distress.  Then, on Monday might, one week after the Boston bombing, I caught a news report by my old friend Don Dahler about the amazing recovery of the 31-year-old dance instructor whose foot was blown off in the Boston bombing.  She was sitting up, smiling and talking about when she could start dancing again with a prosthetic.

The next morning, I could barely move out of bed. I felt toxic and weak. I couldn’t eat; the smell of food nauseated me.  I called one of my surgeons and asked how a bombing victim could be doing so much better.  She answered, “First of all, the dance instructor didn’t undergo five and a half hours of surgery.  Secondly, her surgery didn’t follow six months of chemotherapy.  And thirdly, well, you’re not 31 anymore.”

“What?! When did that happen and why didn’t anyone tell me?”

The moral of the story is this:(if I can contribute anything beyond the op ed piece by Angelina Jolie and its message — if you are at risk, testing for the  BRCA gene mutation can save your life.)  Finding out when you are younger, before you have cancer, gives you plenty of time to plan your life and offers an expedited recovery.

But undergoing such serious surgical  means of prevention can’t in the end be the best and only option. (I still have at least two more surgeries on the schedule, one this Thursday followed by an oophorectomy, the removal of my ovaries and fallopian tubes.)

I recently read about Dr. Vincent Tuohy, an immunologist with the prestigious Cleveland Clinic who believes he’s discovered a vaccine for triple negative breast cancer and has proved prevention and treatment in three different animal models, the first traditional stages in scientific discovery.

Tuohy now faces what the most brilliant research scientists call “crossing Death Valley,”  the long arduous process of raising money, conducting more animal studies and navigating and endless regulatory barriers to get permission for human trials.

Why not fast track Dr. Tuohy’s work?  A successful vaccine could prevent others from what I, Angelina Jolie and countless others have soldiered through just in the past year,  and everything Robin Roberts has endured in the last five. (She also is triple negative.)

Our daughters must have better options. (Our sons can get breast cancer from the BRCA mutation as well.)

I made sure Dr. Tuohy has been invited to join TheCureAlliance, a non-profit organization of 200 elite scientists from around the world who are working together to share knowledge and break down all the barriers that stand in the way of scientific discovery in the 21st century. Not just cures for breast cancer, but diabetes, kidney disease,  cancer of the pancreas and more.

They ask questions like: “Why do we spend about $52 B annually to bring an average of 16 new drugs to market, not one of which cures a disease.”

As a member of TheCureAlliance since 2011, I was reluctant to speak out about what is now my disease. I still am. I do so with the intent to help move the dialog forward.  We must now all join forces and reset the federal regulations, patent laws, academic and economic barriers scientists face today in curing everyone’s disease. (Watch this space for more information.)

The founder of TheCureAlliance is Dr. Camillo Ricordi who, among other distinctions, is the  Scientific Director and Chief Academic Officer of the University of Miami Diabetes Research Institute. He issues this warning:

“In the next five years, you or someone you love will be diagnosed with an incurable disease.  The prognosis depends on what we do between now and then.”