Life After Cancer

February 2, 2017

Numbness and Reconstruction

Last week the NYT ran another feature by Roni Caryn Rabin: After Mastectomies, an Unexpected Blow: Numb New Breasts. Roni is one of the few mainstream journalists asking tough questions about breast cancer realities. Last fall, she penned a thought-provoking piece about folks who go flat post-breast cancer. Now, her first follow-up is a well considered examination of a common problem – numbness after reconstruction.

from the NYT

Background: According to the NYT, since 2000 the number of women undergoing breast reconstruction after breast cancer is up 35 percent. In 2015, 106,000 women had reconstruction. Many breast cancer patients report their surgeons did not make it clear that their new breasts would feel numb.

As one can imagine, numbness can be physically and emotionally disorienting for many women. Roni quotes women who’ve injured themselves and not realized it, women who can no longer feel the touch of their children and lovers, and women who feel like they were misinformed when their surgeons told them their breasts would “feel” natural.

Then she digs deeper into that key word: FEEL

Roni spoke to surgeons who explain that when they use the word “feel” in pre-surgery conversations – “as in your new breast will feel natural” – what they mean is that the reconstructed breast(s) will feel natural to other people (aka: men). They aren’t talking about how the breast will feel to the woman herself.*

Doctor-patient convos still centered on what “feels” good to men

Many women don’t realize until after reconstructive surgery that their new breasts will feel numb forever. Some women do regain partial sensation in reconstructed breasts but full sensation is extremely rare due to nerve damage.

My issue is not with numbness. (And, full disclosure, my flat chest has full sensation.) And, as an aside, I’d be curious to know know if flat-chested women are more likely to regain sensation than women who reconstruct.

My point is that plastic surgeons are framing the conversation in terms of what will feel best for men.* And that’s eff-ed up. As I’ve been saying for ages, breast cancer patients can’t make well-informed decisions without accurate and unbiased information. Language that privileges a man’s experience of a woman’s body over her own is biased (to put it mildly).

A woman’s decision to reconstruct is a big one. All reconstructive options require multiple surgeries (even so-called simple implants need to be replaced every 7 to 10 years). Breast reconstructive procedures have unusually high rates of complications, including infection, implant rejection, and lasting pain.

I’m guessing most women would weigh the reconstruction decision differently if they knew in advance their new breasts would feel numb, if their surgeons were able to reframe the conversation around what the new breasts might feel like to the woman herself, not to the man in her life.*

Only when women have complete, accurate, and unbiased information can they make a decision about reconstruction with a clear-eyed expectation about what it will feel like to live in their post-surgical body. Because they are the ones who will be feeling it 24/7 for the rest of their lives.

*In my world, lots of cis-ladies and non-gender-conforming folks touch breasts, but, in the mainstream medical world, the only folks thought to touch women’s breasts are cis-, het-men.

October 28, 2016

What’s Missing from the Mastectomy Conversation?

For Pinktober Self Magazine featured photos from AnaOno Intimates, a company that makes lingerie for women who’ve had “breast cancer-related surgeries.” When the article came across my Facebook feed I clicked because, YES, of course I want to celebrate a company making bras and undies for breast cancer survivors!

But when the first gorgeous, gauzy photo of a woman popped up on my screen my heart sank. Her lovely lingerie-covered breasts looked nothing like my post-mastectomy body. I slowly began to scroll through the five portraits. “Please, please,” I muttered, “please just let one of these women be flat.”

Nope. Each of the five women in the article had a pair of full, lovely, curvy breasts.

Surely, I am not the only breast cancer survivor who is hungry for representations of women proud of their misshapen bodies. Nearly 40 percent of women in the United States who undergo mastectomy for breast cancer choose not to reconstruct, according to a study published in February 2014 in the Journal of Clinical Oncology. That’s 4 in 10 women. Other studies suggest the number is even greater. So where are these women? Are they in the self-congratulatory pages of Self Magazine? No.

Can we please stop rubber stamping homogenous femininity onto the bodies of breast cancer survivors?

The failure to portray a full spectrum of survivorship, in my mind, is not AnaOno’s because the company does have a picture of a flat-chested model on its site. The failure belongs to the magazine. Once more, a major women’s magazine narrowed its vision to see (and show) only women who chose full-on reconstruction. I’m a magazine journalist, I get it. Visibility is good. But I just have one request: can we PLEASE broaden the spectrum of what we make visible?

July 17, 2016

3 Steps Before You Walk

Cause marketing is a $2 billion dollar business. That’s a lot of moola. Before you sign on to a charity walk it’s important to know whether your donation will pay for extra balloons at the finish line or something more meaningful.

“When you sponsor someone for a charity walk, you’re really writing three checks — one for the charity, one for the event-management company, and one for the benefits the walker receives, the T-shirt, the massages, and the meals,” said a spokesperson from the American Institute of Philanthropy, a charity watchdog group. “If it’s a very costly event, but you’re happy because you got some great perks, that’s fine. But, if you want to help the cause, you should find out how much will be left over.”

Last month Breast Cancer Action published 4 questions to ask before you walk for breast cancer.

Here are 3 more steps you can take to find out where your donation will go.

Rate of Growth of Cause Marketing from CauseGood

Find out how much of your contribution will benefit the charity directly. According to the Better Business Bureau’s Wise Giving Alliance, “at least 50 percent should be spent on programs and activities directly related to the organization’s purposes.”
Ask yourself if the charity’s goals are clear? What tangible results have they achieved in the past year, the more specifics the better. Is the charity’s mission specific, like providing wigs to women receiving chemotherapy, or vague, such as eradicating breast cancer.
Ask how successful is the charity in meeting its goals? If a charity spokesperson can’t tell you what they’ve done to forward the cause lately, choose a charity that can.

May 8, 2016

What Barbara Brenner Taught Me About Charity Walks

Thirteen years ago, in the spring of 2003, I interviewed Barbara Brenner, then executive director of Breast Cancer Action (BCA). The interview never ran.

I was an optimistic, young journalist excited about her first investigative assignment. The topic was cause-marketing. The news hook was a brewing controversy surrounding Avon’s 3-day breast cancer events.

I’d pitched and sold the idea to a national women’s magazine. My editor loved it. The magazine slated the article for the October issue — Breast Cancer Awareness Month.

I spent six weeks researching, interviewing, and writing the 3,000-word feature. Brenner was front and center. Her message stressed the importance of women taking back their power from corporate America. I couldn’t believe such a bold, feminist message was poised to reach 1.4 million readers.

Then, a month before publication, my editor called to tell me the magazine killed my story. Avon was a new advertiser and the marketing team didn’t want to tarnish the new relationship. My interview with Barbara sank to the bottom of my hard drive. Until now.

I was reminded of the long-lost interview when, in April, BCA redoubled its efforts to get women to ask 4 questions before walking for charity. Then I found out the University of Minnesota Press was set to publish a collection of Barbara’s writings. Finally, last week, Karuna Jaggar, BCA’s new executive director, penned an op-ed for the Washington Post “breast cancer walks are a terrible way to fight breast cancer.”

So it only seems fitting that, for the first time and with the permission of the kind folks at BCA and Barbara Brenner’s family, I’m posting my long-ago interview with Barbara.* She won a life-long supporter in that 20-minute phone call. And, after all these years, her words ring just as true:

Q: Describe, in a nutshell, your chief complaint with cause marketing.

Brenner: One is the exploitation of a devastating illness by companies. The second is that while we really want people to do something about breast cancer, we want people to do something real. Many of these campaigns give people the illusion that they’re doing something real when they’re not.

Q: What do companies gain?

Brenner: They gain profits. They do this to improve their bottom line. That’s what companies do. They gain a reputation for caring deeply about something other people care deeply about.

Q: How do you respond to those who might say, “who cares if companies make money, at least they’re giving back.”

Brenner: I would say that while I appreciate that point of view, we shouldn’t let companies off the hook. People need to think about whether or not companies using breast cancer to improve their bottom line is really helpful.

Q: What makes breast cancer such an easy target for cause marketing?

Brenner: Breast cancer is a great cause-marketing tool because it’s an issue women care about and women have a lot of purchase power. Plus, it’s about breasts. Breast cancer is relatable in a way, for instance, AIDS never was because AIDS was loaded with sex and sexual orientation. Breast cancer is just the opposite. Yes, it’s loaded because it’s about breasts and America loves that.

Q: Can you speak to what raising money for breast cancer through the sale of lipstick, yogurt, and vacuum cleaners says about how women are perceived by these companies? Is it valid or a conditioned response?

Brenner: It’s valid in that it works. These campaigns communicate that what women can do about breast cancer is to buy things. It’s a disservice to women.

Q: If a woman wants to contribute to breast cancer research, how would you advise her to go about it?

Brenner: Look at what kind of research you want to fund then look at who’s doing that and who doesn’t already have enormous access to money. If you don’t know who’s doing it, contact a breast cancer organization in your area and ask.

Also, think about whether or not the organization is getting any results for the money that is going to them. What can they tell you about how successful their programs are about getting to the bottom of this problem?

Q: Any last thoughts?

Brenner: Research is a big universe. What makes signing up for a walk or sending in yogurt lids appealing is that somebody else is making decisions for us about where to put the money. But as long as we leave those decisions in the hands of those who are not directly affected by breast cancer we will continue to throw money down a black hole. Remember: Activism works by multiplying the affects of a single action. It is the power of individuals to create change.

*Note: The interview has been edited for length.

May 8, 2013

Hormone Blockers: Why 25 percent of us ditch the drugs

Hormone blockers and you.

Last month, researchers at the University of Michigan seemed genuinely surprised when they discovered that 1 in 4 women given hormone-blocking drugs as a continuation of breast cancer treatment either stopped taking the drugs or never started.

But, if you’ve ever taken these drugs, this news comes as no surprise.

Living with the side effects of these drugs can be disabling. I can’t speak for anyone else and many of my friends tolerate these drugs, especially Tamoxifen (the most common first-line therapy) pretty well.

But I count myself among the 25 percent.

In the past 3 years, I gave each of these drugs a fair shake. For the first year, I dutifully swallowed Tamoxifen every day and took solace in the fact that it was “proven” to lower my odds of recurrence by 50 percent. But I stopped cold turkey when my breast cancer came back. No one told me that some women “fail” on Tamoxifen and that no one can tell if it’s really working until it’s too late. Dang. For a drug that’s been around since the 1970s, you’d think someone would work out that little kink.

After breast cancer #2, I diligently worked my way through all three second-tier drugs (the aromatase inhibitors Arimidex, Femara, and Aromasin) as well as Lupron, the hard-core ovarian-suppressant. I’m hesitant to list the number and severity of my side effects because I don’t want to discourage anyone. But suffice it to say I was unable to live in a way that made life worth living. And, yes, I do want to live very much…but at what cost?

The side effects that derailed the women in the Michigan study included hot flashes, vaginal dryness, and joint pain. Check. Check. And check. The authors noted that those women who had the most angst about recurrence were more the most compliant. “Greater fear [equalled] greater adherence,” says the medical oncologist who treats breast cancer patients at UM. The beauty of this quote is how conflicted she seems about the fact that the women who are scared shitless make the best patients. Of course, that sounds bad so she continues…”we don’t want our patients living under a cloud of fear, so we need to develop creative ways to both reassure and motivate them.”

Here’s the problem lady: women don’t need your creativity or your reassurance…we need better drugs and we need them NOW. Stat. We also need breast cancer specialists to pick up the clue phone and start shouldering some of the responsibility for their non-compliant patients.

For instance, when I called my breast cancer oncologist worried as hell that my joints were double their normal size and too painful to move, his nurse called me back and said “it couldn’t be the hormone therapy.” That “it sounds like arthritis. You should call a rheumatologist.” Really?

Stunned by the brush-off, (here’s where I should mention that my oncologist was the president of the f**ing American Society of Clinical Oncology), so I’m pretty sure I’m not the only woman who gets the cold shoulder, I used my fat, painful fingers to find a handful of peer-reviewed studies from top-tier medical journals describing the direct link between the drugs I was on and severe joint paint, primarily in premenopausal women (like me). I sent him links to the medical literature. And then I fired him.

I hired a new breast oncologist. She’s a Harvard-trained MD, PhD at a top Boston cancer center who specializes in treating younger women with breast cancer. She listened. She shared her thoughts. She treated me like a capable adult. Together we tried a few more drug combinations. And, after talking with her about my fears, my anxieties, and my side effects, she gave me her blessing to join the 25 percent club because, as she says, “I don’t want to save your life if it’s going to be a miserable one.”

And that’s what we should be talking about.