While helping her mom through treatment, Yael decided to speak up. Loudly. She started Fuck Cancer, a ballsy, straight-talking nonprofit organization with an explicit mission: Teach people how to look for cancer in themselves and others. Here are Yael's frank thoughts on how to spread the word.
Feel free to drop the F-bomb.
Just like the word cancer, a profanity may be something you think about but are hesitant to voice. Don't be bashful: Cursing cancer out loud can help you feel brave and get other people talking about prevention, says Yael.
Throw a shower party.
Yael once designed cheeky invitations to a shower bashÃ¢â‚¬”as in, the bathroom shower, where it's often recommended women check their breasts. "None of us actually showered together," she says, laughing, "but it was a great way to remind people in a nonscary way to do a breast self-exam."
Get the guys involved.
Let the breast-obsessed men in your life know they have a new job: to pay extra close attention to their S.O.'s chests, and to speak up the second something feels or looks different, says Yael.
Be real with your parents.
Remember that sex talk they stumbled through with you? It's your turn. Urging your folks to get screened for cancer is worth it; lifesavingly worth it. If they brush you off, Yael says, you can employ the good-old guilt trip: "If you can't do it for yourself, do it for me."
Owe it to yourself. THE AFFECTIONATE PHYSICIAN
"You might not develop cancer. Your kids might not. But someone you love or know probably will," says Yael. "It's your responsibility to yourself and others to talk about it. The more we talk, the more we'll know about catching it early."
Krupali Tejura, M.D., is a radiation oncologist and blogger
Your friend tells you that she has bad news. You freeze up and say, "I don't know what to say." Understandable, but not the most helpful. Fact is, research shows breast-cancer patients who get loads of emotional support tend to fare better in the long run. Just ask Krupali Tejura, M.D., a cancer doctor who knows all about bedside manner. She's not shy about hand-holding or using social media to give her patients something to smile about (she often tweets out their wish listsÃ¢â‚¬”tickets to the Ellen show; a powwow with a famous musicianÃ¢â‚¬”mobilizing her followers to pitch in). Take a cue from Krupali and hone your own bedside manner by learning what to say to someone who's dealing with cancer.
DO say, "Let me know what I can do." But follow up with specific suggestions: "Can I give you a ride to the doctor? Can I pick up your dry cleaning? Can I do your grocery shopping this week?" Krupali says that "concrete examples are better than vague offers. People going through cancer can't always quickly think of stuff you can help with."
DO say, "I'm thinking of you." Then prove it. Send her a care package or remember to call and check in every week.
DO keep in mind who you're talking to. Blanket statements such as "I know you're strong enough to handle this" could be interpreted as supportive or helpful by some and as bullying or dismissive by others.
DO lend your words to strangers. Krupali recently tweeted that she was saddened by the fact that one of her patients was fighting colon cancer alone. A week later, Krupali received an unsolicited handmade get-well card from a family across the country. "My patient was in the ICU," she says. "I brought him the card, and he had tears in his eyes. He was so grateful that someone cared."
DON'T go on and on. Cancer patients are still people, and like all people, they get tired of talking about the same thing all the time. Krupali makes a point of reviewing the news or swapping pop-culture gossip with her patients to help them retain a sense of normalcy.
DON'T speak like you know better: "Why aren't you getting chemo? My aunt did and is totally fine now." "Every patient and every cancer is different," says Krupali. "Leave the treatment to the doctors and respect your friend's choices without judging her decisions." If you just can't keep mum, try something more constructive, like, "Do you need help getting a second opinion?"
DON'T be afraid of silence. "Sometimes less is more, even verbally," says Krupali. "You don't have to move mountains to show that you care." Taking the time to sit with your pal can often be enough.
DON'T apologize profusely or beat yourself up if "I don't know what to say" slips out of your mouth. "You may sometimes say things that the other person doesn't appreciate," says Krupali. "That's OK. There's no one perfect response." THE BREAST INVESTIGATOR
Florence Williams is the author of the book Breasts: A Natural and Unnatural History
Florence Williams knows a thing or two about boobs (they don't officially stop growing until you get pregnant; guys may prefer smaller ta-tas after all). She also knows that you should protect your chest without driving yourself nuts. Behold, some of her fascinating findings:
Just how complex are breasts?
So complex. I like to say they almost always have antennae out so they can feed the body information. They are like sponges; they seem to absorb things quickly, including toxins. In fact, I had my breast milk tested and it came back positive for flame retardants, pesticides, and ingredients found in jet fuel.
Whoa. How could that be?
The science isn't clear, but it may be because breasts are very fatty and a lot of industrial chemicals are attracted to fat. Unfortunately, many chemicals can also mimic the female hormone estrogen, high levels of which have been linked to breast cancer.
How can you cut out chemicals?
The truth is you can't totally control your exposure. I make an effort, but I don't want to make myself crazy. What we really need is better science and government involvement. The best thing you can do for your breasts is encourage more research into prevention. Write letters to your elected officials; get involved by volunteering for a group like the Silent Spring Institute or Breast Cancer Action.
Great idea. Day-to-day prevention advice?
I think it makes sense for women to avoid exposure to gasoline by-products. When you're pumping gas, stand a few feet away from the pump. And don't walk or jog next to a highway. It also makes sense to try to avoid flame retardants, which are often used in furniture. Do your research, and read labels before buying. Look for a "green" cleaner to dry-clean your clothes.
What about BPA?
In animal studies, BPA, a chemical often found in plastics and canned food, appears to alter mammary glands in ways that can lead to cancer. We don't know for sure that it causes human tumors, but I would take a moderated approach. Buy BPA-free canned food and bottles. Personally, I never take a store receiptÃ¢â‚¬”they're often covered in BPA.
Any other tips? THE CAUSE COMEDIENNE
Do what seems comfortable and manageable: Try eating more fresh and less canned food, avoid cigarette smoke, and drink lightly. These things are great for you beyond breast health, so you get big rewards.
Katy Franco is an actress, comedienne, breast-cancer survivor, and coauthor of Chemorella. Her one-woman comedy show, The Breast Years of My Life, is at the Laugh Factory in Los Angeles this month
Ask Katy Franco and she'll tell you that breast cancer has made her a funnier person. A soap-opera actress in Puerto Rico (she played a husband-stealing villain who poisoned people), she moved to Los Angeles and, in 2005, was working the stand-up comedy circuit when she felt a burning sensation in her left breast. After her breast-cancer diagnosis, she continued performing right through chemo and radiation. "When I was diagnosed, I had to find a reason to live," says Katy. "Making other people laugh made me feel alive."
Still, when her writing partner suggested she create a show about her experience, Katy hesitated. "So many people think, Cancer's no laughing matter," she says. "But the truth is, you're not laughing at the cancer. You're laughing at how absurd life can be." (A joke in her repertoire: "In solidarity with me during my chemotherapy treatment, my 70-year-old mother offered to shave her head. I said, 'You know, Mom, I would really appreciate it if you shaved your legs!'")
When you look at what's happening in your life as tragedy, you're going to feel tragic, says Katy. A key to fighting breast cancerÃ¢â‚¬”or, really, any of life's big speed bumpsÃ¢â‚¬”is looking for the positive or the funny. Here, Katy's tips on finding laughter in trying times.
1. "Rent funny movies, even if you're not in the mood. Or get on YouTube and watch one of those animal videos. Pets can be hilarious."
2. "Think of great memories. Ring a friend and ask, 'Do you remember when. . .?' See, you're already smiling."
3. "Play all the happy music. Especially songs that remind you of good times."
4. "If you have cancer, people will be very solemn. That's OK, but you also need to be around people who laugh a lot. It's contagious."
5. "Act like a kid. I sang and danced around my house wearing hot-pink lipstick. I wrote a ridiculous rap about my cancer. I take my illness very seriously, but I also know that silliness can lead to happiness." THE THOUGHT LEADER
Ann Partridge, M.D., M.P.H., is a medical oncologist, founder and director of the Program for Young Women with Breast Cancer, and director of the Adult Survivorship Program at Dana-Farber Cancer Institute. An associate professor at Harvard Medical School and a leader in her field, Ann works with young breast-cancer patients and tests new treatments. Her mission, besides working to find a cure, is to help women survive the disease while maintaining a high quality of life
Turns out, breast cancer is a bit of a misnomerÃ¢â‚¬”or at least more of an umbrella term than a specific one. And cases in young women are generally different from cases in older women, which is why learning about the particulars could save your life.
As told to WH by Ann Partridge, M.D., M.P.H.
In 1999, my best friend from high school found a lump in her breast. She went for tests and was told it was probably nothing. She was just 30 years old; no one expected her to have cancer. But she did, and I saw up close and personal for the first time the unique illness and issues young breast-cancer patients face.
Breast cancer is not one disease. There are multiple kinds and, within those, many subcategories. Young women tend to get more aggressive, nastier breast cancers. Why? That's the Holy Grail question. Cancer is a disease of aging; risk generally has to do with environmental exposures over a lifetime. That doesn't make sense in a 30-year-old.
We just don't know enough yet, but one big problem is that because young women aren't frequently screened, their breast cancers are often diagnosed at a later stage. And those really aggressive tumors are more likely to come back, making young patients more likely to die of their breast cancers.
A red flag I look for is family history. If you have a first-degree relative with breast cancer, or if, say, your dad's mother had breast cancer at a young age, that could be a risk factor. Another one is drinking, which has been associated with breast-cancer risk in women of all ages. There's a "dose response" factor; the more you drink, the higher your risk. About six servings of alcohol a week should be your limitÃ¢â‚¬”no more than one glass (not goblet!) per day.
The good news is that unless you have a clear genetic predisposition (see "The Action Hero," page 142), your risk is probably mutable. One really, really important thing you can do to reduce your chances is maintain a normal weight. The other big thing: regular exercise. It has repeatedly been linked to a decreased risk for breast cancer. THE INNOVATORS
Julie Silver, M.D., is a physiatrist, an author, an entrepreneur, and an assistant professor at Harvard Medical School. Elizabeth Chabner Thompson, M.D., is a radiation oncologist, an entrepreneur, and a physician at 21st Century Radiation Oncology
After Julie Silver, M.D., was diagnosed with breast cancer at age 38, she encountered a common patient paradox: Her treatment made her feel sicker than the disease ever did. The bigger problem? No one was doing anything about it. (Her doctor's advice: Go home and rest.) A rehabilitation specialist, Julie designed her own healing planÃ¢â‚¬”then parlayed it into the STAR Program at Oncology Rehab Partners, the first-ever nationwide rehab program that uses tailored therapies to help patients bounce back from the harsh side effects of cancer treatment.
Similarly, when Elizabeth Chabner Thompson, M.D., had a prophylactic mastectomy at age 38, she found herself in the very situation her patients often lamented: Her pre-op checklist was overwhelming and her post-op surgical bra was a chafing, painful mess. Elizabeth pooled her resources and launched BFFL, a line of bags sold online and in hospitals, stuffed with every imaginable patient need (support pillows, surgical drain care packs, toiletries, and more). This month, she'll debut her second innovation: Masthead, a line of pain-free surgical and radiation bras. Here, Elizabeth and Julie chat about how it's imperative to speak up when you see something's not rightÃ¢â‚¬”and how the best solutions can stem from your own ideas.
Julie Silver: Doctors learn that suffering is inevitable. But unnecessary suffering is intolerable. I suffered enough going through toxic treatments. The fact that I wasn't offered any help in healing was intolerable. I had no choice but to heal myself.
Elizabeth Thompson: When you see something isn't right, you first need to ask why. In my case, the answer I got was "This is the way we have done it from the get-go." When I proposed solutions, people said, "Go for it."
JS: Sometimes it's easy to think of the solution, but executing it is not as easy. Understanding your goals and staying true to your mission are important, but it's more than that. My biggest issue was challenging the status quo. I found myself saying over and over again to doctors, "Please don't tell patients to accept a 'new normal' before you offer them rehab." And to patients: "You shouldn't accept this new normal!"
ET: My biggest hurdles were finding fabrics, overcoming design challenges, and patenting my ideas without bankrupting my family. I had many, many sleepless nights.
JS: It's hard to do it alone. Innovators need teams of really smart and dedicated people to work with them.
ET: I could not have made it to where we are without input from other women. For example, a friend of mine in the apparel industry was horrified when I showed her the standard-issue surgical bra. She helped me find better fabric for my new one.
JS: I get a lot of e-mails from people thanking me for supporting cancer survivors' healing. They keep me going.
ET: I couldn't agree more. All the hard work pays off. Hospital administrators have told me about patients "paying it forward" by ordering a BFFL bag for someone after they themselves received one. These stories keep me motivated.
JS: It's amazing when you can touch someone's life at a time when they're vulnerable. I do whatever I can to make sure what happened to me doesn't happen to other people. The ACTION HERO
Lindsay Avner, founder and CEO of Bright Pink, a nonprofit that focuses on the prevention and early detection of breast and ovarian cancers in young women and provides support to high-risk individuals. Started in 2007, Bright Pink has eight national chapters and over 50,000 members
Women who carry the BRCA gene mutation have up to an 87 percent risk of developing breast cancer and up to a 44 percent risk of getting ovarian cancer by age 70. (Women who don't carry the DNA but have a strong family history are also at a high breast-cancer risk.) The stats seem scary, but as Lindsay Avner tells it, knowing your risk levelÃ¢â‚¬”and understanding your choicesÃ¢â‚¬”can be surprisingly empowering.
My grandmother and great-grandmother died a week apart. Breast cancer took them both, when they were 39 and 58, respectively. I never knew them, but I know their struggle: When I was 12, I watched my mom battle breast cancer and, soon after, ovarian cancer. She survived but, all told, 11 women on my mother's side of the family have lost their lives to one of these diseases.
I was convinced I wouldn't be like them. I was built more like my dad, all skinny arms and legs; surely, my health would take after his. So in the summer of 2005, when my mother told me her cancers were genetic, that she carried the BRCA1 gene mutation and that I had a 50-50 chance of carrying it too, I thought I would test negative. I didn't.
After I got my results, I cried for weeks and weeks. I eventually landed in the ER when my colon started spasming from stress. Some experts say finding out you carry the BRCA mutation can be just as devastating as finding out you have cancer. They may be right.
At first, I regretted ever walking down the path of risk assessment. I was single, starting a new job in a new city, and suddenly navigating what it means to live at high risk. I enrolled in an early detection program that included mammograms, ultrasounds, clinical exams, and blood tests every six months. Though I was technically healthy, getting poked and prodded so often made me feel like something was already wrong, like I was just waiting to get cancer instead of reducing my chances of developing it.
In August 2006, when I was 23 years old, I became, per my doctors, the youngest woman in the country to get a risk-reducing double mastectomy and nipple-sparing reconstruction. Scientifically, it made a ton of sense: My odds of developing breast cancer fell to less than 1 percent. Emotionally, I was terrified I'd feel broken, tainted, like less of a woman, that the guys I'd date might not see me as whole. But after the surgery, I surprised myself by feeling healthy and strong. I found a new kind of beauty inside me I never knew existed. I grew to consider my scars cool; the two small lines on the outer quadrants of my breasts tell one hell of a story. The first time my shirt came off with a new boyfriend, my eyes filled with tears when he looked at my chest and simply said, "They're perfect."
Six years have passed, but my fight against cancer is far from over. I began my twenties by removing my breasts and now, as I approach 30, I am starting to prepare for another surgery. Because there are no good tests for ovarian cancer, which is deadly and can strike young in BRCA carriers, my doctors recommend I have ovary-removing surgery at age 35, by 40 at the latest. The procedure would push me into menopause, something most women don't experience until they're around 50. Hot flashes, insomnia, low sex driveÃ¢â‚¬”not how I'd envisioned my thirties.
As I think about this next step, those old concerns about my femininity are beginning to resurface. But here's my deeper worry: I'm single, and if I don't have kids in the next few years, I might not be able to have them naturally at all. The question every woman asks herself on a first or second dateÃ¢â‚¬”could he be The One?--has taken on new meaning. In my head, the follow-ups unroll: Does he want kids soon . . . like, really soon? How can I tell if he'd be a great dad? How would he feel about embryo freezing?
That last question is the trickiest, but it's also a reminder that I do have options. Even if I don't find the right guy soon, I can still try to preserve my fertility. I could get a sperm donor and freeze a collection of embryos or, thanks to advances in egg freezing, I could have my eggs put on ice, to be thawed and used after ovary removal surgery. (Both require in vitro fertilization, for me or a surrogate, and it's now possible to test for BRCA mutations in embryos.)
If this seems like a lot to handle, it is. I'd be lying if I said I wasn't scared and overwhelmed by the thought of another surgery; by the pressure to find my soul mate and have kids sooner rather than later; by the shots, weight gain, and expenses associated with egg retrieval. But I know something that's way scarier: developing ovarian cancer. As I grapple with this, I'm keeping in mind that, for me, being proactive is better than being reactive, that prevention is better than treatment.
Every woman has a choice of finding out whether she's at high risk for breast or ovarian cancer. In my case, while it's sometimes hard to predict how I will feel at each milestone of this, I know that I am fortunate to have something generations of women before me did not--the ability to do something about my chances. More than anything, I know what I want for myself and for the daughter I hope to have someday: a long, healthy, cancer-free life.