October 21, 2013 at 4:42 pm , by Amelia Harnish
In May of 1961, President John F. Kennedy stood before Congress with his ambitious plan to land a man on the moon before the end of that decade. Critics across the country balked. How could NASA possibly pull off something so incredible in such a short time? But the following year John Glenn became the first American to orbit the Earth. And on July 20, 1969, Neil Armstrong and Buzz Aldrin planted a flag on the moon.
Today, Fran Visco, president of National Breast Cancer Coalition (NBCC), says we need a similarly bold goal to end breast cancer—not in some distant future for our daughter’s daughters, but by the year 2020. “The Apollo Project looked at where technology was at the time, and simply asked, ‘How can we apply this to getting on the moon?’ NBCC is doing the same thing,” she explains.
Two Octobers ago, LHJ ran an interview with Visco (right) to mark the launch of NBCC’s deadline. (Click here to read that interview to get a primer on Visco and NBCC.) Recently, we caught up with her to chat about the progress so far.
LHJ: The last time you talked with us, NBCC had just announced its ambitious goal to end breast cancer by 2020. What’s the latest?
FV: The scientists we’re working with have made progress in identifying targets for a preventive vaccine against breast cancer, and we’re on track to be in Phase 1 clinical trials with it in three years. We’re also making progress in our work on stopping metastasis.
We’ve been able to change the conversation among the research community, which is huge. To give you an example, recently I was invited to speak to an auditorium full of clinicians and researchers at a major cancer center. When I asked the organizers why they wanted me to speak, they said the researchers talk about the deadline campaign a lot among themselves when they talk about their work. That’s exciting because no one even thought this was a possibility when we started, and now there’s enthusiasm and momentum. Instead of asking us, “How on earth are you going to end breast cancer?,” researchers and doctors are now asking us, “How can I help you end breast cancer?” That’s a big deal because the National Breast Cancer Coalition isn’t going to do this alone.
LHJ: What drove your decision to focus on those two areas—metastasis and developing a vaccine?
FV: What we want to do is move away from toxic drugs. If you were diagnosed with breast cancer today, you would be treated with drugs and possibly radiation, both of which can have life-threatening side effects. One of my dear friends, Carolina Hinestrosa, who was the executive vice president of NBCC, died in 2009 of a cancer caused by the radiation treatment she got for her breast cancer. That’s why we’re focusing on developing a safe preventive vaccine—so women don’t have to go through that in the first place.
For the most part, women do not die from a breast tumor. Metastasis is responsible for 90 percent of all breast cancer deaths. If we could stop that process, so that if you do get breast cancer you won’t die from it, that would be enormous. Most recently we put together a think tank of 17 scientists and advocates to look at the issue of tumor dormancy. Why does cancer stay dormant for months or years in some women? Can we learn how to keep it that way? I recall reading several years ago about a group of engineers who were talking about filters for blood flow to “catch” cancer cells. I have no idea if that is even possible but that is the kind of innovative thinking we want to encourage. We still lose too many women to this disease, and unfortunately, early detection is not the answer.
LHJ: Do you think the major focus on early detection has actually slowed progress?
FV: The problem is early detection can only do so much. We’ve spent way too much energy, attention and resources on early detection and it hasn’t gotten us very far. This year, an estimated 108 women will die of breast cancer every day. In 1991, just a few years after I was diagnosed, that number was 119.
The world has raised billions of dollars for breast cancer research, but the mortality rates haven’t changed very much. So it’s not that we’re not catching breast cancer early enough or that we haven’t raised enough money, it’s that we’re not focusing our efforts on the right things. That’s why we want NBCC to have an oversight role, which means we want to set priorities and oversee how the money is being spent.
LHJ: You are also lobbying Congress to pass the Accelerating the End of Breast Cancer Act. What would the bill accomplish? And we have to ask, has the current political climate in Washington gotten in the way?
FV: It is definitely slowing things down because Congress is dealing with other pressing issues, but I hope it won’t be a barrier to getting it done.
What we are trying to do with the bill is create a systematic way to leverage the investments we’ve already made in research. We’re not asking for more money, we’re asking to create an entity that can bring people together to collaborate. We have a lot of tools, technology and knowledge already, but none of this stuff is being translated into things that actually help people. That’s exactly how this is like the Apollo project. Let’s look at where the science is and figure out how to accomplish the goal, rather than just making another drug or another tool. I truly believe that now is the time to do that. Let’s take all this awareness, all this funding and work together to end breast cancer for good.
To learn more about NBCC’s work and how you can help, head to breastcancerdeadline2020.org.
May 16, 2013 at 11:51 am , by Amelia Harnish
When activist and author Letty Cottin Pogrebin was diagnosed with breast cancer in 2009, she was surprised at how not sick she felt—until word spread among her friends. Some loved ones avoided her completely. Others seemed tongue-tied or awkwardly danced around the issue in conversation. “Instead of, ‘Hey, how are you?’ everyone started asking ‘Oh, how are you?’ in that tone that says they’re painfully worried about you,” she says. She realized that many people have no idea how to act around someone who’s dealing with an illness. At the time of her diagnosis, Pogrebin was working on a novel but decided to shift gears and instead write her latest book, How To Be A Friend To A Friend Who’s Sick.
Based on her own experience as well as interviews with 80 other patients, the book covers what to say in response to bad news, how to help and even what to bring to the hospital when you visit. I had the pleasure of meeting Pogrebin and collecting a few dos and don’ts.
Do ask her what she wants. “Everybody wants different things. Some people want to be treated as though they’re not even sick. Some people want you to sit and listen,” Pogrebin explains. You may feel like you shouldn’t ask, you should just act. But it can be liberating, not to mention extremely helpful, to give the sick person the opportunity to tell you exactly what she needs.
Do keep your good fortune to yourself. You should be honest if she asks how things are going in your life, but she doesn’t need to hear every detail about your promotion or the great vacation you’re planning. Keep it vague, and start conversations about current events or other interests you share, like movies, sports or politics, Pogrebin suggests.
Don’t ask, “How are you?” at all. If you’re someone dealing with chronic pain or chemotherapy, that’s a very awkward question to answer, says Pogrebin. “It’s the most basic opening line in human conversation, and it’s the most problematic for a sick person.” Instead, ask her, what’s new? This way, the conversation doesn’t begin with her having to acknowledge she’s not doing so well, and it’s open-ended. She can say “Not much,” or she can tell you about her treatment if she wants, or she can tell you her mother called.
Don’t tell her about that miracle treatment you heard about. It’s natural for you to feel like you should offer advice, but fight the urge. “Part of why disease makes us so uncomfortable is that we feel powerless,” says Pogrebin. “But so much advice is dizzying. She has a doctor for that. She needs you to be her friend.”
October 24, 2012 at 4:48 pm , by Amelia Harnish
An army of soldiers, wearing everything from pink wigs and tutus to T-shirts with photos of loved ones, invaded New York City last weekend. They were there for the 10th annual Avon Walk for Breast Cancer, and the Journal team was there to capture it. We wanted to meet some of the women (and guys) who raised money to walk up to 26 miles around the island of Manhattan on Saturday, camp out on Randall’s Island and then finish with another 13-mile hike on Sunday. With that kind of commitment, we knew we were bound to find good stories.
We met a woman who signed up in honor of her grandmother and then got diagnosed herself before she finished fundraising. We met a woman with a pink ribbon tattoo on her ankle in memory of her mom, who lost her battle six years ago. We met a group of young men doing the walk for their girlfriends, sisters and mothers. (You’ll get to meet them all, too, in an upcoming issue.)
Sheri McCoy, Avon’s new CEO, joined the charge. She spoke at the opening ceremony and spent the day walking and talking with participants. I got to sit down and chat with McCoy, whose mother was diagnosed with breast cancer in 2005, after she crossed the finish line on day one (that’s her, above). “We had a woman tell her story on stage with me today who was diagnosed when she was only 27 years old. And the woman who spoke after me, her mother died just a few months ago. It was incredible that she was able to tell that story. I couldn’t have done it,” says McCoy, tearing up a little.
She clearly cares about this cause, as well as the more than 6 million Avon representatives she oversees, many of them women, across the United States and in countries all over the world. “As a manager, I want the people who work for Avon to be successful the same way I want my kids to be successful,” she says. “In motherhood and in business, you want to create an environment where people can achieve.” Her husband, who was the oldest of 13 kids growing up, did a lot of the childcare for their three boys, now 24, 22 and 20. “I’ve been fortunate to have the support—and to have worked for companies that are family friendly,” she says. “But I also had to learn to recognize what’s important, to prioritize and say no to things. It took maturity to say I can’t be perfect.”
During the week McCoy is up by 6 a.m. and often is in meetings or traveling until 9 p.m.. But the weekends are all hers. In addition to spending time with her boys, she’s a Zumba fanatic and bookworm. “Most of the time I have to read business journals and work-related things, so I love to pick up a James Patterson mystery. I can finish it in a few hours,” she says, smiling.
McCoy started her career at Johnson & Johnson as a scientist. She stayed with the company for 20 years, eventually leading the pharmaceutical division before coming to Avon in April. This was her first breast-cancer walk. “Avon has always been about empowering women,” she says. “Breast cancer is such a tough disease that touches so many people, so I wanted to be here. I’m inspired by the women participating, and I’m impressed that the foundation isn’t just working on awareness but getting the money to research and care.”
The New York City walkers raised an impressive $8.3 million this year. The majority goes to the Avon Foundation Breast Health Outreach Program, which focuses on screening and education. The rest goes to a variety of programs, including a grant to fund research on inflammatory breast cancer, a less common but very aggressive type of the disease, and support for women undergoing treatment.
Another pink October may be coming to a close, but McCoy is already looking ahead. “I walked with some women from California, and now I can’t wait to do the Santa Barbara walk next year,” she says.
October 4, 2012 at 1:18 pm , by Amelia Harnish
During one of her recent volunteer shifts at Memorial Sloan-Kettering Cancer Center, AnneMarie Ciccarella (right) visited a woman who was recovering from a mastectomy. “It was the same bed in the same room I woke up in six years ago to the day,” she says. “Stuff like that really gets to me: When are we going to figure this out? How can we end this?”
Breast cancer affects 1 in 8 women in their lifetime. This year, more than 220,000 American women will be diagnosed with it and 40,000 will die. When we met Ciccarella for our October issue story on breast cancer survivors, she said she’s so tired of hearing these numbers. We’ve got to find a way to stop breast cancer.
That’s where the Health of Women (HOW) study comes in, says Ciccarella, who serves as the New York volunteer team coordinator with the Love/Avon Army of Women. Launched by the Dr. Susan Love Research Foundation, the Army of Women has been enrolling women in different research projects since 2008. Now the foundation is launching its own study to follow a huge group of women over time to learn why the disease develops. The key to all this? Your participation.
Why It’s Important
Many breast cancer patients have no known risk factors. So, does where you work or how much you sleep affect whether you will get breast cancer? Can anti-inflammatory drugs like aspirin and ibuprofen reduce breast cancer risk? These are the types of thing we want to understand better, and the larger the group of women we study, the more we can learn, says Leslie Bernstein, Ph.D., professor and director of cancer etiology at the Beckman Research Institute of City of Hope in Los Angeles, a partner in the study.
How It Works
After you answer a questionnaire about your health history, the HOW study will send you e-mails every three to four months when a new module becomes available. The questionnaires are co-created by epidemiologists, statisticians and breast cancer advocates, and participants will have the opportunity to submit questions they want answered, says Naz Sykes, executive director of the Dr. Susan Love Research Foundation.
The researchers want to follow women for 20 years or more. It’s a commitment, but the modules only take a few minutes to answer. All of your data will be stored in your account and in a database available to researchers—without your name attached.
Where To Sign Up
Go to HealthofWomenStudy.org and create an account. Then get your friends involved. The researchers want healthy women from every ethnicity, plus breast cancer survivors, women with other health issues and even men who’ve had breast cancer. I’ve already enrolled and I hope you will, too. Head to the study’s helpful FAQs page for more info.
Photo by Avery Powell
Categories: Health, Ladies' Lounge | Tags: AnneMarie Ciccarella, Breast Cancer, Breast Cancer Awareness Month, City of Hope, Dr. Susan Love, Dr. Susan Love Foundation, Leslie Bernstein Ph.D, Love/Avon Army of Women, Prevention | 78 Comments
May 11, 2012 at 2:26 pm , by Amelia Harnish
Emma Stone is one busy woman. Between wowing in red at the Met Gala this week and promoting her upcoming role in this summer’s The Amazing Spiderman, Stone found time to rally for a cause she cares about deeply: support for cancer survivors.
Just in time for Mother’s Day, Stone served as host at the annual benefit luncheon for Gilda’s Club in New York, and she brought her mom Krista, a breast-cancer survivor, with her. Named after comedian Gilda Radner, who died of ovarian cancer in 1989, Gilda’s Club opened in New York City in 1995 as a support and resource center for people living with cancer.
Who could forget Radner’s unforgettable characters from her days as one of the original cast members of Saturday Night Live, such as Roseanne Roseannadanna? Stone definitely hasn’t: her mom introduced her to Radner’s work years ago, including her memoir It’s Always Something, and Stone’s been a fan ever since. In fact, when Stone hosted SNL last November, she paid homage to Radner in a much-talked-about bumper that ran near the end of the show. “Gilda is my biggest hero. Doing that photo shoot was so amazing for me,” she says.
It all came full-circle for Stone when her mom was diagnosed with breast cancer in 2008 and joined a Gilda’s Club support group in Phoenix. “You can’t underestimate the power of finding people who are empathetic instead of just sympathetic,” Stone says. “It was so helpful to her. I wanted to be involved.”
Three and a half years later, her mom is doing well. But Stone continues to lend her celebrity for causes in her honor. She’s also been involved with the organization Stand Up 2 Cancer, and last Saturday she participated in NYC’s EIF Revlon Run/Walk, a fundraiser for women’s cancers, with pal Olivia Wilde. “I’ll be beating this drum forever,” Stone says.
There are now 20 Gilda’s Club centers across the country, with many more in development. To find a support group or make a donation, contact your local Gilda’s Club via this directory.
Happy Mother’s Day from the LHJ Health Ladies!
Photo by Paul Frogatt / PR Photos
Categories: Health, Ladies' Lounge | Tags: Breast Cancer, cancer support, EIF Revlon Run/Walk, Emma Stone, Gilda Radner, Gilda's Club, ovarian cancer, Roseanna Roseannadanna, Saturday Night Live, Stand Up 2 Cancer | No Comments
June 13, 2011 at 1:56 pm , by Ladies' Lounge
It’s a sad day at the LHJ offices, and for breast cancer survivors and advocates everywhere. Last night, one of the recipients of our 2011 Do Good Awards, Laura Ziskin, passed away after a long battle with breast cancer. She was 61.
Ziskin, who produced such modern movie classics as Pretty Woman and Spider Man, was diagnosed with stage 3 breast cancer in 2004 and helped co-found the cancer fighting organization, Stand Up 2 Cancer (SU2C). She raised millions of dollars—and worldwide awareness—in the fight against the deadly disease.
When we interviewed Ziskin last spring, she reiterated to LHJ readers that “Cancer is everybody’s cause.” She also told us that SU2C will “only really meet its goal when someone discovers a treatment that’s going to make a difference in a cancer patient’s life. Who knows, maybe that life will be mine.”
You can read more about SU2C and Ziskin’s brave fight at the Stand Up 2 Cancer site.
March 30, 2011 at 8:19 am , by Amelia Harnish
First, Pam Murphy was a comedian. Then she got breast cancer. Now she’s merged the two for a one-woman comedy show about her life as a cancer survivor. Since opening last October at the Upright Citizens Brigade Theatre (founded by Amy Poehler and friends) in New York City, Time Out New York named it the best solo show of 2010.
“The C Word” is only a half-hour long, but Murphy packs in more than a handful of hilarious characters drawn from her experience: the stoic doctor who lays out her treatment plan like a high-school football coach with a dry erase board. The friend who won’t shut up about the miracle “cure” she found on the Internet. The subway rider who refuses to give up her seat for the bald lady. And of course, the friend who tries to relate but just can’t—“My aunt had breast cancer. Well, she wasn’t really my aunt, but she was so close to my mom we called her my aunt, you know? We never saw her during her chemo. It was awful. But anyway, what I’m saying is, I totally get it.”
She also makes fun of herself, playing a counselor who develops a tailored coping plan just for her: “You’ll be able to lie around, eat a bunch of crap, watch TV, wallow in self pity and everyone you know is going to think that you are a brave little soldier, so that’s a win, win, win, win, win!” Also, check out this scene where she portrays a first date after breast cancer for another hilarious example.
“I don’t portray myself in the best light, either, because I didn’t write the show to say, ‘Look at me, I’m such a brave person,’” she says. “I just wanted to say, look, this experience sucks. Let’s talk about it.”
Murphy was aiming for honesty, and she totally nailed it, while still managing to get lots of laughs. She skipped the soul-searching and just focused on the reality—breast cancer isn’t fun. But she made it through, and now she’s making it funny.
Right now she’s doing two shows in Los Angeles at the UCB Theatre in Hollywood, and she’ll be back in New York City for two shows in April. But stay tuned because the show might be coming to a college near you very soon. Pam says she’s in the process of booking a tour of campuses across the country.
Read on for more of my talk with Murphy about her bout with breast cancer, why she decided to write about it and what she wants other survivors to know.