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It’s Only Rock ‘n’ Roll… and Gynecologic Cancer

It wasn’t too many years ago that talking about breast cancer was uncomfortable, even taboo.  Now, nearly everyone knows pink means breast cancer prevention and manufacturers of everything from kitchen mixers to lipsticks offer “pink products.” Male professional athletes even drape themselves in pink uniforms and jerseys to raise awareness. Clearly, we’ve grown accustomed to talking about “saving the tatas.”

But, we still don’t talk much about cancers that happen “down there” despite the fact that about every seven minutes another woman is diagnosed with a gynecologic cancer and just one in three women who are diagnosed survive.

For me, the depth and immensity of the awareness challenge crystallized when I delivered a talk to about 250 OB/GYNs. I asked how many had participated or supported a run for breast cancer and nearly every hand went up. But when I asked how many were familiar with the Gynecologic Cancer Foundation (now the Foundation For Women’s Cancer), my heart broke when I only saw two hands in the air.

So how do you give voice to cancers that people are afraid to talk about? Five of my fellow gynecologic oncologists and I are using a time-honored tactic — rock and roll.

In 2008, we formed the band N.E.D., short for the best three words a patient can hear — no evidence of disease.

N.E.D. live in concert.

N.E.D. live in concert.

Two albums and a documentary film later (which will aired several times on the World Channel on March 4-7, and is scheduled many public television stations beginning in April and the Spanish-language channel VME on April  10), it’s been the musical adventure of a lifetime. Although we live in five different states (one of which is Alaska) and all have a full-time medical practice, we have made the time to record and release original music, rehearse and play live shows. Hope is a central theme of our songs, which are written to empower women and their loved ones, and motivate them to dance, smile and, most of all, break that paralyzing wall of silence that surrounds gynecologic cancers.

Short of operating on and healing someone, seeing people sing the words to our songs is the most powerful experience I’ve had. It’s a dream come true to interact with our fans (who call themselves NEDHeads) and see the raw energy and the healing and therapeutic power of live music.

Near the end of each concert, we invite gynecologic cancer survivors up on stage for the song, “Let the Singing Begin.”  Each woman gets a turn to walk on stage with a sign that says when she was diagnosed with cancer. Then, she turns the sign around to show how long she’s been disease free and what life milestone she just celebrated or is looking forward to. It’s about each woman having a chance to feel like a rock star for what they’ve accomplished. It’s about going from a dark place to a hopeful one with a camaraderie that can only come from knowing exactly how each person has suffered and overcome.

Dr. John Bogges

Dr. John Bogges

We called our second album Six Degrees, to represent both our medical degrees and that everyone, in some way, is connected to one of the five main gynecologic cancers (cervical, ovarian, uterine, vaginal and vulvar). In fact, gynecologic cancers kill as many patients as prostate cancer each year, yet prostate cancer receives 50 percent more federal research funds than all gynecologic cancers combined.

While there is a mammogram to test for breast cancer and a Pap smear for cervical cancer, there is no screening test for ovarian cancer, where the five-year survival rate is just 45 percent. We do know that when ovarian cancer is found and treated before it spreads outside the ovary, the five-year survival rate jumps to 92 percent. However, only 15 percent of ovarian cancers are found at this stage.

What complicates ovarian cancer diagnosis is that many of the early symptoms can often be attributed to less serious conditions like bloating, abdominal swelling, change in urinary frequency and feeling full quickly.

This ambiguity is why women should see their OBGYN if they experience a symptom or feel differently than they normally do for at least a week.

N.E.D. documentary photo

N.E.D. documentary photo

It’s why we need significantly more research dollars allocated to develop an effective screening test for ovarian cancer and monies to support other potential research breakthroughs for gynecologic cancers.

Raising awareness is the first step to making this happen. That’s why my focus, and that of the band, patients, survivors and advocates, is to bring a voice to gynecologic cancers.

Sometimes it’s easier to sing about something than to talk about it.

But whether it’s at a concert, a doctor’s office, the water cooler or a fundraiser, it’s a conversation that can’t wait any longer.

About the blogger:

John Boggess, MD, is a gynecologic oncology surgeon and professor at the University of North Carolina School of Medicine. Click here to view the trailer.

4 replies
  1. Bunny Cochrane says:

    Wow…. I’m a 23yr. Survivor of a “down there” lol cancer: DES exposed en utero, Clear Cell Adenocarcinoma; vaginal. Don’t talk much about it…. nobody knows exactly what. Some MD’s have only heard… I’m also a past jazz blues singer, musician and now a nurse at 60. 🙂 Love hearing what you’re doing! Come to Colorado and play! I’ve got a natl. Park venue and prob some supporters. Or in the least, a great place to vacay in so. Central colo. Anyway love hearing this! Hope more n more!!!

    Reply
  2. Jan Herrbach says:

    I was diagnosed with vulvar cancer in 2011. I never knew you could get a cancer “down there”. I knew one World War I I vet who had survived vaginal cancer, but never knew anyone who had vulvar cancer. I went through surgery, chemo, and radiation treatments and have had 5 clear CT scans since ending treatment. My 6th one is coming up soon. I’m doing well now.

    I’m an avid bowler and that was one thing that kept me going. Of course, since I wasn’t able to bowl every week, I had men and women ask why I wasn’t bowling. This was a perfect time to tell them about vulvar cancer. I felt at ease telling men about this, too. Many men AND women didn’t know you could develop that kind of cancer. I could tell by the expression in their faces when they didn’t even know what the vulva is!! Perfect time for educating them. I’ve even told all of my male neighbor’s about my cancer. I’ve told them people need to know women don’t only get ovarian, cervical and uterine cancers, which many people have heard about. Also, these can affect girls, young women, sisters, moms, aunts, grandmothers, wives and girlfriends.

    I keep talking to individuals about gynecological cancers whenever I can . I’ve met many wonderful women and became friends with them who were affected by these cancers. Please keep reaching people through your music. It’s a wonderful way to get your message out there.

    Reply
  3. Shallyn Chasmar says:

    Thank you Dr. Boggess and N.E.D. for being such amazing advocates for the patients, survivors, family members and friends of “below the belt” female cancers! I am currently recovering from surgery due to my second round of endometrial cancer, and as a person who has participated twice in the Race to End Women’s Cancer, I can echo that though I’m so thankful to participate in the event as a survivor, we definitely need more funding for research and participation! My life has been influenced by many friends and family that have struggled with breast cancer and I attend/support those events as well, however, I hope and long for the day that awareness for our cancer is equal and more lives are saved by early detection! I was diagnosed the first time in 2012 and though I have dealt with cancer for the last three years, I refuse to let it scare me, deter me, take over or defeat me. I have no trouble telling my story and remain extremely proud of my battles with my tumor, “Betsy” (yes, I named my tumor…why not? It helps to sack some of the negativity in always referring to it as “cancer” or “tumor”…that and it lightens the mood). One of my goals for my recovery from my surgery (in January) is to run again in the Race to End Women’s Cancer in Washington D.C. this November, and more than achieving a personal best time on the course, I hope to see a larger turnout of supporters that got there by way of having one of those tough conversations about female “below the belt” cancers! Thank you again Dr. Boggess for all you’ve done to help me! You and your band N.E.D. are truly super heroes to us, your survivors!!

    Reply

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