Shirley Temple Made It Easier to Talk About Having Breast Cancer

If a former film star held a press conference today about having breast cancer, she would hardly make history by doing so. Unless she were exceptionally young or famous for her gorgeous body, a celebrity’s cancer announcement might receive less attention, in itself, than scrutiny over her treatment decisions. Parade lists dozens of famous individuals who have “come out” with a breast cancer diagnosis.

Shirley Temple in 1944 (Wikimedia image)

Shirley Temple in 1944 (Wikimedia image)

Yesterday, Shirley Temple Black died at the age of 85 years. In the fall of 1972, the former actress had a mastectomy to remove a tumor from her left breast. She was 44 years old. Within days after surgery at Stanford Hospital in San Francisco, she spoke to the media about her condition. She advised other women not to be afraid to see a doctor if they noticed a breast lump. Newspapers around the country reported on her surgery, and advice. “There is almost certain recovery from this form of cancer if it is caught early enough,” she said. Her intention was to encourage other women to not be afraid of seeking care for breast cancer.

In that era, her message was one of empowerment. In the early 1970s, many women were terrified of having a malignancy. If they felt a breast lump, they might wait months or years, until it grew through to the skin, eroding it, or spread to other body parts, eventually causing pain or death. The message of early detection, which some experts now question, was considered an imperative by almost all authorities – surgeons, medical oncologists and public health experts.

I must admit, I’ve never been a fan of Shirley Temple’s “baby burlesk” style of cuteness, curls and twirls. I acknowledge what historians say, that as a girl she delivered smiles and good cheer when she appeared in Depression-era films. Some of her most famous scenes, like singing “On the Good Ship Lollipop” in Bright Eyes, or dancing with Mr. Bojangles (Bill Robinson) in The Little Colonel, do bear a certain charm, or interest, through time.

Shirley Jane Temple was born on April 23, 1928. She retired from acting at 22 years, around the time she married Charles Alden Black. In the 1950s she entered the political realm, raising money for the Republican Party. In the 1960s, she conveyed support for the war in Vietnam. While Nixon was President, she served as a delegate to the United Nations and ambassador to Ghana. She held positions in the administration of Gerald Ford and, later, under George H. W. Bush as ambassador to Czechoslovakia. She was, most certainly, a woman with whom I might have had some serious disagreements at a dinner table.

What I choose to remember about Shirley Temple is that she lived for 41 years after having a mastectomy for breast cancer in 1972. She spoke openly about her medical condition, and encouraged other women to seek medical care if they noticed a lump. In doing so, she may have saved more than a few lives. And she made it easier for us, today, to talk about breast cancer, options, and long-term effects of treatment.

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Birth of the Metastatic Breast Cancer Alliance

This week marks 11 years since my breast cancer diagnosis. My feelings are mixed. On the one hand, I’m keenly aware, and constantly appreciative, of the fortune of being alive and, as far as I know (knock on virtual wood), free of the disease. That’s great, of course, but I’m lucky – so far at least, still vying not to be cast off by some strange turn of statistical, informed roulette. I can’t help but think, especially today, of my countless BC “sisters” with metastatic disease.

October 13 is Metastatic Breast Cancer Awareness Day. In 2009, the U.S. Congress voted to designate this day for attention to the particular needs of people with metastatic breast cancer (MBC). Although it’s been unofficial since that year, the day has been adopted by several breast cancer agencies as a time to rally in support the cause – and needed research – for people affected by MBC.  For people who are living with MBC, the immediate goals are not so much to prevent breast cancer, or necessarily to cure it, but to find better treatments so they can live longer and fuller lives.National Metastatic Breast Cancer Awarness Day avatar 180 by 180 px

The number of women living with metastatic breast cancer is unknown. Almost all deaths from the disease occur in people who have advanced or metastatic (Stage 4) cases. This year, some 40,000 women and 400 men will die from breast cancer in the United States. According to the Centers for Disease Control, cancer is the number 1 cause of death in women between the ages of 35 and 64 years. Only lung cancer accounts for more cancer deaths among women. Almost all deaths from breast cancer occur in women with Stage 4 disease. The World Health Organization reports that approximately 458,000 will die from breast cancer this year, around the globe.

These are the kinds of numbers that can be hard for some people to face, or think about too much. Deaths from breast cancer amount to 110 people each day in the U.S., or 1,255 each day, around the globe. I’m thinking of a lecture room of women every day in the U.S., or a train’s worth.., every single day, on average. Hard to envision. But it’s almost impossible not to get the message if just one woman, perhaps at the table over a lunch meeting, tells you about her daily life with relapsed or otherwise metastatic disease, and no end of treatment in sight.

If you break the deaths down by age group, as does the American Cancer Society in its most recent report on Breast Cancer Facts & Figures, you’ll find these numbers in Table 1: over 1,000 women die of breast cancer each year under the age of 40 years; an additional 4,780 die under the age of 50; almost 12,000 die between the ages of 50 and 64; the remainder of BC deaths (nearly  23,000) occur in people age 65 and older. The overwhelming proportion of cases arises in women, although there’s a trend of more cases in men. The median age of a breast cancer diagnosis is 61 years; this is largely a disease of middle-aged women.

Some encouraging news on the research front, besides new drugs in the pipeline and ongoing trials, is the formation of a new, cooperative coalition of breast cancer charities that will work together to address the problem MBC. The new Metastatic Breast Cancer Alliance includes a spectrum of pink and gray agencies, young and old, working together. The main thing is to promote knowledge and research about breast cancer metastases – to reduce formation and growth of metastases, and to treat those affected with better, less toxic meds.

I’m delighted to see an example of BC agencies working together, constructively. Sure, each group has its particular priorities and “personality,” if you will. But we all want to end misunderstanding, and we all hope to improve the lives of people living with Stage 4 disease. Breast cancer is not “easy.” It’s serious and life-destroying. The more research and scientific attention that we devote to men and women with metastatic breast cancer, the more likely will be an extension of their survival, and improved quality of what lives they’ve living, now and hopefully in the future.

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Reading and Hearing ‘Bang the Drum Slowly’

image from the 1973 film

Recently I read Bang the Drum Slowly, a 1956 novel by Mark Harris about players on a fictional baseball team. According to the University of Nebraska Press website, this book was once ranked among the top 100 sports books of all time by Sports Illustrated.

This is a rare cancer narrative. I’d give it 4 stars, or maybe even 5 – depending on my mood and your scale. The story’s told from the perspective of the New York Mammoths’ reliable and usually-winning pitcher, Henry Wiggen. With reason, his teammates call him “Author.” Early on, Author learns his team’s less verbal catcher, Bruce Pearson, had traveled, covertly, to Rochester Minnesota for treatment of Hodgkin’s disease.

In the patient’s words, he’s “doomeded.” Author’s immediate response reveals a clear sense of obligation to his teammate: “I will come,” he says, despite that it’s far away and his wife is pregnant. When he gets to the medical center in Minnesota, he finds Bruce looking deceptively well:

“…and in he come, all dressed, all fit as a fiddle, looking as tip-top as I ever seen him, and I said, ‘This is sick? This is why I dropped everything back home and risked my life in a snowstorm and went to the expense of a new wardrobe in Minneapolis?’   (p. 11)

Harris’s insights and skepticism about physicians in white coats and research funding are familiar now. As his protagonist (Author) remarks:

“’…You are the boys that send me 50 letters a day looking for contributions for your rotten hospitals. What do you do with the contributions I send?’

‘We done many great things,’ said the first doctor. ‘We are only human and cannot do everything.’ (p. 13)

This slim work, oddly elegant in its tenderness and guyish language, resonates today. Some of the pertinent issues include Author’s difficulty in keeping the knowledge of his friend’s illness to himself, the others’ varied responses to the catcher’s disease and cope with his looming death, some acquaintances trying to take advantage of the situation while others reach out and help, fear of the disease…It’s loaded!

An unmissable medical message – apart from the work’s cultural aspects – is that the young player with Hodgkin’s lymphoma had what was accepted as an incurable illness back then. Today, approximately 90 percent of young people with that cancer type survive for decades after the illness and may have a full life after treatment. With so much talk about the costs of care, and research, it’s easy to forget that this was a usually-lethal disease, even at the best of medical centers six decades ago.

I plan to see the two cinematic versions of this story. The first appeared on TV in a 1956 episode of the United States Steel Hour, with Paul Newman as Author and Albert Salmi playing the infirm catcher, among others. More of you may be familiar with the 1973 movie, called Bang the Drum Slowly, starring Michael Moriarty and Robert DeNiro.

Toward the end of the book, a character nick-named Piney sings an old tune about a dying cowboy with this verse: “O bang the drum slowly and play the fife lowly, Play the dead march as they carry me on, Put bunches of roses all over my coffin, “Roses to deaden the clods as they fall.” Some of the players mind the music more than others. The author admits feeling sad.

Though I didn’t find much on the original music behind those verses, which probably exists and has a long history, I did find a clip of Emmylou Harris singing a newer song of the same name.

Emmylou Harris sings another version of "Bang the Drum Slowly" (YouTube)

Emmylou Harris sings another version of “Bang the Drum Slowly” (YouTube)

All these “lessons” – stories of patients, from patients, about patients, form a trail.

ES

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What Does a Bikini Parade Have to Do with Breast Cancer?

A recurring question on this blog is this: Is there a limit, in terms of appropriateness or “correctness,” in fundraising for causes that would help put an end to breast cancer?

My blogging colleague and friend, fellow BC ~survivor/advocate/NBCC summit attendee and former chemo recipient, AnneMarie Ciccarella, @chemobrainfog wrote about an upcoming bikini parade planned by a tanning salon owner in Madison Lake, MN. Proceeds from the march will go toward a nonprofit group called the Breast Cancer Natural Prevention Foundation (preventbc.org). This true story is problematic at many levels, as AnneMarie points out.

But sometimes an extreme case of something – here what’s billed as a BC fundraiser – can be instructive. A few months ago I wrote about Boobstagram – a French website that asks women to submit pictures of their breasts to increase awareness of the value of healthy breasts. The site, vaguely and with few words, tries connecting the barely clad images with “the fight against cancer.” Although I’m still not convinced that the concept utterly lacks merit in principle, and maintain that some of the voices raised here were, perhaps, too quickly dismissive and uptight about the possibility of fundraising or BC activism by this method, I acknowledge that the men running that company seem to be doing nothing useful in terms of reducing breast cancer or its complications.

The Minnesota bikini march will take place on July 28. The line-up starts at noon. The walk will begin at 1PM. According to the announcement on the Electric Beach Mankato website, “only females in bikinis will be counted toward the world record.” The organizer and salon owner, Cynthia Frederick, needs 451 participants to break the Guinness World Records mark for largest bikini parade. That site lists the record as 357 women, based on a 2011 event in Queensland, Australia. But that achievement was recently surpassed in Panama City, FL. What’s different about the prior demonstrations is that there was no pretense of raising money or awareness to help fight, prevent or cure breast cancer.

Minnesota bikini parade participants will pay $20 or $25 for tee shirts. Net proceeds will to go the Breast Cancer Natural Prevention Foundation. The foundation’s site suggests that sunlight prevents BC by increasing vitamin D levels (which is total BS, to be perfectly clear). Taking too much vitamin D can do damage, as can excessive sun exposure.

As I read this, a tanning salon – a business that causes melanoma and other skin cancers – is promoting a walk of bikini-wearing women in midday summer sun to break an amusing world’s record. The parade will, if anything, harm those women who, naively or otherwise, believe they’re supporting a legitimate effort to prevent breast cancer. Any funds raised will support a foundation that promotes what’s tantamount to snake oil for the disease.

So there is a line, in the sand… And it’s been crossed!

If I were an investigative journalist, I’d want to know more about the organization that calls itself the “Breast Cancer Natural Prevention Foundation.” Does it get tax breaks? If so, why?

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This Week’s Triple, Tough Dose of Real Stories on Women with Cancer

Dear Readers,

It’s been a tough week on the breast cancer front.

Many in the community first learned that Ellen Moskowitz, a former leader at the Metastatic Breast Cancer Network (MBCN), died. Ellen was a funny, articulate woman who lived with MBC. When I interviewed her for an article on the value of a day designated to awareness about metastatic disease, she kept me laughing.

Robin Roberts, a co-host of Good Morning America who was treated for breast cancer less than 5 years ago, announced that she’ll be getting a bone marrow transplant for MDS. The blood condition is, in some cases, a complication of chemotherapy. I wrote a piece about this for the Atlantic Health. This unfortunate news reminds us an aspect of cancer treatment some of us would rather put out of our heads. The main message – which I hope came through editing – is that all cancer patients should take careful notes on their planned treatments and ask their doctors about the long-term consequences of therapy. Not all chemo is the same; the risks vary among regimens and doses. The reality is that some of us – patients and doctors – prefer not to think about late, long-term, possible effects of treatment, like secondary tumors, when there’s a life-threatening condition in hand. This doesn’t mean chemo isn’t the right choice. Often it is, but it should be weighed out, carefully.

Finally, we learned that Dr. Susan Love, a breast surgeon and professor at UCLA, and leader of an Army of Women, has leukemia. Dr. Susan Love’s Breast Book is a reference my friends and patients turned to in the 1990s, before the Internet was so loaded with cancer info, and many still do. She has, through that book and through her Foundation, besides through her work as a surgeon, helped an army of women to heal, and more.

My thoughts are with each of these remarkable women, and their loved ones, now.

ES

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The NBCC Holds Annual Summit and Pushes for Deadline 2020

Last week the National Breast Cancer Coalition (NBCC) held its annual summit. The meeting drew over 600 women to its opening rally in a Crystal City ballroom on Saturday, along with students who participated in sessions for Emerging Leaders, and a few men who joined in lectures and panels, and lobbied on Tuesday on Capitol Hill.

The NBCC aims to get HR 3067, the Accelerating the End of Breast Cancer Act, passed by the House of Representatives and, ultimately, into law. The bill ties in with Deadline 2020 and with the conference theme: “It’s Time.”

The opening rally, organized in the style of a political convention, was lively. When I entered, participants – or “activists,” as they might be called – were rocking to Three Dog Night’s Joy to the World. Attendees congregated by state and region. Most wore festive garments and signs over black tee shirts carrying the Deadline logo: women from Maine wore floppy red lobster hats; a contingent from Pennsylvania held brightly-decorated kite-posters; a group from Oregon played kazoos (to We’re Not Gonna Take It) and supported multicolored umbrellas over their heads; members of the CBCC lifted Rosie the Riveter boards proclaiming: “We Can Do It!” Each region offered a progress report. In videos, these demonstrated a mix of activism (“waving breast cancer goodbye” on a Rhode Island beach) and seriousness (scientist in a lab, explaining why the research matters).

Fun aside – the meeting’s mood was overwhelmingly serious. Each day’s session opened with a moment of silence to recall women who have died from breast cancer. There were plenary lectures, and smaller educational meetings on topics like “A Critical Review of New Therapies for Metastatic Breast Cancer,” “Estrogen Exposure throughout the Life Cycle,” “Nuts and Bolts of Congress,” “and “The Environment and Breast Cancer.” Many of the women there have metastatic cancer, or had cancer. I had lunch one day with a woman whose early-stage cancer came back after 15 years. Many of the college-age people attending have moms with advanced disease or who died from that. There were young people who’d had breast cancer – some under 30 years old. The few men I spoke with were affected by their wives and mothers’ illnesses. You couldn’t walk a few feet without hearing a sad tale, or seeing the outcome of loss, in motivating people to take action.

In her remarks, Fran Visco, the NBCC Founder and leader, reminded the group that breast cancer remains a leading cause of cancer deaths. Each day, on average, 110 women die in the U.S. from breast cancer. That’s the equivalent of a woman dying every 14 minutes from the disease, she explained. “This should not be considered success, or even meaningful progress.”

“We need to take a less comfortable approach,” she said. “The system rewards safe ideas. We need to take risks.” She spoke of the Artemis project, an NBCC-supported research program to develop a preventive breast cancer vaccine. “There’s a moral imperative to do these trials,” she said. “We’ll get scientists to form new collaborations, to change their focus not on the next grant, or publication, but on the real goal, which is saving patients’ lives.”

In the 20 years since NBCC was founded there’s been progress, she said. “But we’re nowhere near close enough.” She referred to Dr. Jonas Salk, whose polio vaccine came through after just seven years in the lab, and – as did others at the same meeting – to JFK’s 1961 promise to put a man on the moon. That seemingly impossible mission got done in less than nine years. The idea of the Accelerating the End of Breast Cancer Act is to leverage our nation’s prior investment in biotechnology, and to use that work – including much research already done – to end to breast cancer and stop metastases. Visco hopes to deliver a petition to the President on inauguration day in January, 2013.

Through the meeting, I gained a better sense of the organization and Deadline’s purpose. In the words of Senator Kirsten Gillebrand, who met with a delegation from New York on Tuesday: “It creates an urgency about the issue.”

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50-50, A Serious Film About a Young Man With a Rare Cancer

scene from "50/50"

The other evening I watched 50/50, a film about a 27 year old man with a rare kind of cancer, a malignant schwannoma. The tumor is growing and pushing into the protagonist’s lower spine. The movie, based in part on the true story of scriptwriter Will Reiser, surprised me by its candor.

Actor Joseph Gordon-Levitt smoothly portrays Adam Lerner, who soon finds out he has cancer. The opening scene captures him jogging in an early morning. He seems a nice, cautious and perceptive young man in a relationship. His rowdier buddy, played hardily by Reiser’s real-life friend Seth Rogan, proves loyal during Adam’s chemotherapy and, later, big spine surgery.

By its cast, I expected this might be a guys’ flick. Yes, there are jokes about sex and cancer. But the film reveals the young man wincing during sex because he’s in pain and can’t hide it. The young women are pretty much all attractive, but they’re not interchangeable props; the relationships are complicated and plausible.

An unexpected perk in the movie is the realistic family dynamic. Lerner’s mother, a worrying sort, wants to be there for her son and doesn’t trust that his girlfriend will sufficiently help him. Anjelica Huston effectively fills the mother’s role. Lerner rarely answers her calls, while she’s biding her time with a husband who, due to Alzheimer’s, doesn’t comprehend what’s going on. She respects her son’s privacy, but feels, understandably, isolated and scared.

The doctors are flawed, of course. The oncologist at the start doesn’t directly tell Lerner of his diagnosis but, instead, speaks into a dictaphone about the malignancy. He refers Lerner to an analyst of some sort, a young woman with little experience, for talk therapy.

When Lerner goes for surgery, the pre-op scene is frighteningly realistic to anyone who’s ever had a young family member go through this kind of surgery. The family and friends are worried. The patient, calmest of all among the group, can’t determine what will be his fate.

The term schwannoma derives from Schwann cells. These elongate cells normally envelop long nerves and rarely become malignant. Most schwannomas, or neurofibromas, are benign; these can cause pain and other symptoms by pressing on nerves, but don’t usually don’t spread or grow quickly. The names can be confusing, as there are several similar-sounding terms for these growths. Some people inherit a disposition to these non-malignant tumors. Rarely, as seems to have been the case in this story, a schwannoma takes an aggressive, invasive and sometimes lethal course. Another name for the cancerous form is malignant peripheral neural sheath tumor, or MPNST.

50/50 refers to the odds of Lerner’s survival, about which he read somewhere on the Internet shortly after his diagnosis. I’d give the movie a high score, 90+, mainly for its lucid, accessible approach to a cancer patient’s experience and concerns.

—-

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A Note on the Komen Fiasco

When I first heard the Susan G. Komen Foundation is nixing its financial support of Planned Parenthood, I thought it might be a mistake. Maybe a rogue affiliate or anti-choice officer had acted independently of the group’s core and mission, and the press got the early story wrong. I waited for Nancy G. Brinker, Komen’s surviving sister, to step in and deny the BC agency’s change of plans. That didn’t happen.

Rather, in a stilted video released yesterday, Brinker defends her agency’s decision as part of a “strategic shift” having to do with funding for any organization under investigation. That’s a bogus excuse, as others have detailed.

Komen, the world’s largest BC agency, has been under scrutiny for some time. Through its early fundraising campaigns and walks, the group raised public awareness – and discussion – of the disease. Since its inception in 1982, the agency has invested over $1.9 billion in education, breast-cancer screening, research and other grants. The discourse has changed, though. Now, many are critical of Komen’s historic focus on BC education and screening, including mammography, and tire of seeing so much pink.

This week’s outcry over the agency’s political turn has been fierce. It’s not too late for Komen’s leadership to take note, change course and revise its agenda.

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Visiting the Scar Project Exhibit

On Friday I visited the Scar Project exhibit at Openhouse, on Mulberry Street just south of Spring. Photographer David Jay offers penetrating, large, wall-mounted images of young people with breast cancer.

The photos reveal women who’ve have had surgery, radiation, reconstruction or partial reconstruction of the breasts. Some are strikingly beautiful. Some appear confused, others confident. Some look right at you, defiant or maybe proud. Some, post-mastectomy, adopt frankly or strangely sexual postures. Others hide a breast, or turn away from the lens.

This collection is not for everyone. The photos of ravaged bodies of women with cancer might be upsetting, if not frankly disturbing, to some who look at them. Not everyone chooses to do so.

The women’s scars and expressions are telling. Though not representative, these images reflect wounds not often-shown in medical journals, or elsewhere.

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Arizona Cheerleaders Cause Community Stir With Breast Cancer Awareness Shirts

This story, shared today by Debbie Woodbury, warrants ML Annals of Pink inclusion:

The Arizona Republic reports on a divided community in Gilbert, AZ. At issue is the high school cheerleading team’s plan to wear pink tee shirts with the slogan: “Feel for lumps – save your bumps” on the back. The group’s intention was to raise awareness and funds for the Susan G. Komen Foundation. 

The school’s principal said no to the controversial outfits due to their “unacceptably suggestive” content.

What strikes me, among other interesting aspects of this story and what it reflects about BC awareness in 2011, is how the arguments (so needless!) about fundraising play out so differently, depending where you live and the newspapers you might read.

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