That these new guidelines come amid a contentious healthcare debate has also raised paranoia that this is part of an effort to lower healthcare costs -- at the expense of women's health. The impossible-to-avoid Sarah Palin took to Facebook late Thursday to air her worries about this shift in the wisdom about pap smears: "There are many questions unanswered for me, but one which immediately comes to mind is whether costs have anything to do with these recommendations," she wrote. "The current health care debate elicits great concern because of its introduction of socialized medicine in America and the inevitable rationed care." Many other Republicans have jumped on the "rationing" bandwagon as well. (Yeah, now they care about women's healthcare!) Judy Norsigian, executive director of the Boston Women's Health Book Collective (aka Our Bodies Ourselves), told me that "we have a discourse at the moment that is dominated by right-wing rhetoric that the Democrats are all about denying healthcare services."

The truth is that Kathleen Sebelius, secretary of health and human services, insists that the breast cancer screening guidelines will not change "what services are covered by the federal government." (Also, insurance companies claim they won't change mammogram coverage and, as David Dayen points out on FireDogLake, "the procedure is mandated at [age 40] in 49 of the 50 states.") The Obama administration has yet to address the new standards for cervical cancer screening -- but medical opinion on the benefits and risks of pap smears is far less contentious than when it comes to the mammogram debate (which has been going on for decades).

Cindy Pearson, executive director of the National Women's Health Network, an independent consumer-advocacy group, told me that the suggested pap smear routine "is not at all about cost-cutting," but instead "improving women's health." Most women's bodies are able to fight off the virus that causes cervical cancer -- but, when a doctor does detect infection through a test for the virus or the appearance of "disturbed cells" on the surface of the cervix, they typically provide treatment that very well might be unnecessary. This isn't just an issue of experiencing bothersome "cramping, discomfort and missing some work" after having the abnormal cells removed, she says -- "what's actually happening is it's weakening the cervix in some women so that they can't support a pregnancy full-term."

My question for her was why doctors haven't instead adjusted their response to the discovery of the virus' presence -- was it in the interest of avoiding malpractice suits? She explained that the medical community operates under the mantra of "if you see it, you treat it." Essentially, the new cervical cancer screening guidelines reduce the likelihood of a doctor seeing it, so as to avoid their treating something likely to clear up on it's own. "Sometimes there are cases when you say, 'Watch and wait,'" she says, "but almost no one does it."

It just goes to show that you have to be your own advocate when it comes to navigating the healthcare system. As Mary Elizabeth Williams wrote earlier this week about the new mammogram standards, "What’s optional for one woman may be the difference between life and death for another." She also added that "blanket guidelines are just that -- they're fine for covering the many, and they are not laws we have to follow." A woman and her doctor still have to take into account her individual history and particular risk factors. That has always been the case and continues to be so. As Norsigian from Our Bodies Ourselves said: "You give women the scientific evidence and let them make their own choices."

Black women, writes Lattimore, "have the highest breast cancer death rate of any race, are at increased risk for developing the diseases at younger ages, and are disproportionately prone to an extremely aggressive form of breast cancer" known as "triple negative," which can move fast enough to progress beyond stage 1 in between annual screenings, let alone biannual ones. Additionally, African-American women "already receive fewer mammograms than white women," are more likely to be diagnosed at later stages and less likely to receive the appropriate follow-up care. Moreover, "the U.S. Department of Health reports that Black women ages 35 to 44 have a breast cancer death rate more than twice that of white women in the same age group."

According to Marisa Weiss, M.D., director of Breast Radiation Oncology and director of Breast Health Outreach at Pennsylvania's Lankenau Hospital, delaying screening until age 50 and extending the length of time between mammograms "could have a devastating effect on African-American women." Alexine Clement Jackson, writing in Essence, agrees. "As a breast cancer survivor myself, and chairman of the [Susan G. Komen for the Cure] Board of Directors, I urge all women, but especially African-American women under 50, to pay attention to their breast health."

Fortunately, Secretary of Health and Human Services Kathleen Sebelius has stated that Medicare will continue to cover breast cancer screening according to the old guidelines, and she "would be very surprised if any private insurance company changed its mammography coverage decisions as a result of this action." (That makes one of us.) The New York Times reports that in a statement, Sebelius "stressed that the task force 'is an outside independent panel of doctors and scientists who make recommendations' and who neither 'set federal policy' nor 'determine what services are covered by the federal government.'" That's good. What would be even better is if doctors and scientists -- and the journalists who report on their findings -- kept in mind that public health recommendations for women need to take more than just white women into account.

 

But my friends aren’t the only reason that I’m skeptical of the new U.S. Department of Health and Human Services guidelines that have raised the suggested age to start getting mammograms to 50. The recommendations, which went off like a bombshell earlier this week, not only up the screening age by a full decade, they go on to suggest mammograms only every two years for women 50-74, and to discourage self-exams, which have never been conclusively linked to mortality prevention.

Why the sudden change? The report, the department’s first in seven years, notes the high prevalence of false positives for mammograms, “which can cause anxiety and lead to additional imaging studies and invasive procedures (such as biopsy or fine-needle aspiration).” Frankly, given the choice between “anxiety” or not living to see my children grow up, I’d go for the first one. But the report does make a persuasive case that not all cancers are life-threatening, and that “over detection” and “over treatment” pose their own -- often considerable -- health risks. And at the heart of the new guidelines, which are similar to those from the World Health Organization,  is the sobering fact that detection is not the same as curing anything.

The American Cancer Society promptly shot back that it’s sticking by its recommended guidelines to start mammograms at age 40, noting that “Our experts make this recommendation having reviewed virtually all the same data reviewed by the USPSTF, but also additional data that the USPSTF did not consider.” The American College of Radiology went even further, saying that the “cost-cutting” recommendations “will result in countless unnecessary breast cancer deaths each year.” Noting the steep decline in breast cancer rates in the last three decades, the ACR said that “At least forty percent of the patient years of life saved by mammographic screening are of women aged  forty-49.” And Florida Rep. Debbie Wasserman Schultz, who detected who own breast cancer via self exam at age 41, lambasted the guidelines as “totally inappropriate.”

Yet there’s plenty in the new guidelines worth considering. The radiation from regular mammography poses a health risk of its own. And loathsome as the American College of Radiology may find the phrase “cost-cutting,” the truth is that mammograms are expensive. Want a potentially better healthcare system for everybody? Then we need to reconsider what’s necessary and what’s optional.

But what’s optional for one woman may be the difference between life and death for another. The U.S. National Institute of Health itself estimates that a woman aged 30-39 has a 1 in 233 chance of being diagnosed with breast cancer. For women 40-49, those odds leap to 1 in 69.

A birthday isn’t an automatic excuse for anything other than cake. I didn’t run out and get me a big old burst of breast-centric radiation the day I turned 40 (I must have been getting one of those abortions of which we feminists are so very fond), any more than I’m going to shrug my shoulders and figure I can worry about cancer when I hit the magic half-century mark.

I’m a healthy woman under the age of 50. There’s no history of breast cancer in my family. And I wouldn’t mind blowing off those cold, painful dates with the machines that squeezed me so hard I cried at my last appointment.

But not so fast. I grew up in New Jersey, which has one of the highest breast cancer rates  in the country. I started menstruating young. I smoked. I had my first child in my mid-30s. All of which are risk factors. And, as I’ve learned from the mammograms I did start at age 41, I have dense breast tissue, which means that not only do I run an elevated chance of developing breast cancer, it could be harder to detect if I do get it.

I’m no believer in the word “routine,” whether applied to getting a procedure or skipping it. Healthcare is about active self-advocacy and not being shy about speaking up. Every woman with an opinion about breast cancer has to figure out her own risks -- and share them with her doctors. I’m not my age. I’m not my breasts. I’m not the 10:15 appointment being hustled out the door before the 10:20 appointment. Blanket guidelines are just that -- they're fine for covering the many, and they are not laws we have to follow. They don’t mean much to my little neighbor who lost her mother the day after she finished kindergarten. And they’re no substitute for the individual care the rest of us who plan on making it to 50 need and deserve.

Then she looked at her partner’s face and saw panic. So she put the procedure off … for a while.

Finally, though, she decided she couldn’t live with the odds any longer. She scheduled the mastectomy, along with plastic surgery to get implants. After discussing it with her doctor, Jessie opted against saving her nipples -- an option some women choose even though it carries a small risk.

In a so-called nipple-sparing procedure, surgeons would have carved out the breast tissue under and around while leaving the nipple and areola of each attached. Because nerves would be cut during the surgery, there’s little chance of actual nipple sensation. And in some cases, diminished blood supply causes the nipple to shrivel and become deformed over time. Of greater concern to Jessie and her surgeon: There’s a small chance that breast cancer lurks or will grow in the nipple itself.

“My attitude was, if I’m going to do this, I’m going to do it right,” she says.

But her boyfriend disagreed. He was angry and felt she hadn’t taken his feelings into account. He grew increasingly uncomfortable and remote throughout the procedure: double mastectomy, reconstruction of the breasts using cadaver tissue, and a messy, gory aftermath involving lymphatic drains.

At the time, Jessie was entirely focused on her own body and its recovery. She didn’t want to die. And how, exactly, was she supposed to negotiate this decision with her lover when no expert she consulted ever mentioned sex?

Looking back, she says she wishes she had handled it differently. Her boyfriend really tried. He stayed. He helped her to the bathroom and brought her Vicodin at 4 a.m.

“If I could talk to women, I’d tell them do not let your man drain you,” Jessie says, referring to the process of emptying and measuring the bloody lymphatic fluid siphoned off by her surgical drains. “That whole area is just a mess. I think my partner couldn’t deal with the act of being a caregiver. And a lot is written about the women’s side of it, but I don’t think men get due credit for what it does to him.”

Jessie’s new breasts, for instance. They looked great under clothing, but artificial -- smooth but for scars running like lightning along the surface of the skin -- and her partner didn’t want to touch them. Or her.

The couple tried counseling, but Jessie’s boyfriend was reluctant to share his true feelings. He admitted that he felt guilty, yet he couldn’t help being totally turned off. For her part, Jessie was just as capable of orgasm and inclined to be as sexual as before. And she’d developed new hot spots to make up for the ones that were gone: Her cleavage and the region under her collarbone suddenly had become erogenous. She asked her boyfriend to kiss her there when they made love. But he couldn’t do it. There was something too disturbing about her nipple-less breasts.

“I will never forget turning around in the kitchen one night,” says Jessie. “I was doing dishes and I slammed them down and was crying and said, ‘Honey, these things may be plastic, but the rest of me is not. I need you to start touching me again.’”

A few months later, they broke up.

---------

The chance that a man will be diagnosed with prostate cancer in his lifetime is 17 percent -- roughly 4.5 percent greater than a woman's risk of getting breast cancer. One could argue that there is inequality in the way society treats the sexes when it comes to cancer: Do we celebrate prostate cancer awareness month? Stage walks for prostate cancer research? Wear purple ribbons?

No, although that may have much to do with other statistics as well: The survival rate with early detection and good quality treatment is nearly 100 percent for prostate cancer, while the cumulative rate for breast cancer is about 90 percent. According to the National Cancer Institute, the average death from breast cancer occurs at 68, while the median age for death from prostate cancer is 80. All of which means that an increasing number of young women, even famous ones, are opting for genetic testing and preventive mastectomies. (Anyone wanting to learn more about preventive surgeries should go to the Bright Pink website.)

And in terms of medical strategies to cope with the sexual aftereffects of cancer treatment, men are literally decades ahead of women. Surgeons long ago developed nerve-sparing procedures and radioactive seed therapies to reduce the risk of impotence. For men who do have difficulty getting erect after undergoing prostatectomies, doctors respond with therapies, drugs, mechanical devices and support groups.

For women, virtually none of this exists.

“It’s sexism, ageism, paternalism,” says Dr. Michael Krychman, medical director of the Southern California Center for Sexual Health and Survivorship. “Sexual health is the No. 1 quality-of-health complaint women have after breast cancer treatment. Men are studs -- we’ll talk to them about sex. But we still have the attitude that a woman who survives should forget about all that and be grateful she’s still alive.”

I've seen this imbalance play out among people I know.

About a year ago, I had lunch with a much older male colleague whom I’d always thought to be genteel and discreet. After we ordered, he confided that he’d recently been treated for prostate cancer. I said I was sorry. Our salads arrived. And he began to talk.

For the next hour, I heard about penis pumps and Viagra. He told me his urologist had given him orders to masturbate at least once a day — twice, if possible. Then he described how odd it was to have an orgasm without ejaculation. Excising the prostate eliminated semen, he explained. But he was learning that even without the thick spray he was used to, coming could still feel good.

Later, the man phoned me to apologize. He’d been terribly inappropriate, he said. But I had to understand: From the moment his cancer was diagnosed, healthcare professionals had been talking to him nonstop about sex.

A few weeks later my friend Becky was diagnosed with a hormone-receptive breast tumor. She was in her late 40s -- an outspoken woman working in a male-dominated field. The oncologist told Becky she’d need a sizable lumpectomy, chemotherapy, radiation and treatment with Tamoxifen, a combination that often triggers immediate menopause in women over 40.

"Could any of this affect you sexually?" I asked, flashing back to the conversation with my 70-year-old colleague. "Will you lose sensation? Will your libido drop as a result of the drugs?"

Becky had no idea. No one had talked to her about any of this. The one time she’d asked a sexual question of her surgeon -- about whether she could leave intact the nerve endings leading to her nipple -- the woman shrugged, telling Becky she would do what was necessary to eliminate the cancer. Period.

“We find there is a real difference in the way physicians treat the genders,” confirms Dr. Dixie Mills, medical director for the Dr. Susan Love Research Foundation, one of the nation’s leading nonprofit organizations devoted to the study of breast cancer and women’s health. “Maybe it goes back to unconscious, ingrained stereotypes. A lot of male doctors won’t talk to their mothers about sexuality, but they’ll talk to their fathers. So they’ll talk to their male patients but not their female patients. Yet we’ve found even some women doctors aren’t comfortable talking to their female patients about sex.” 

This is particularly true, it seems, when the topic is nipples. Virtually none of the literature or education around the topic of breast cancer covers the sudden disappearance of erotic sensation in the breast. There is no attempt, as there is in a prostatectomy, to preserve the nerves. Modern mastectomy simply hacks off the offending tissue and creates a blank area where there once was tingling current.

“It’s a really huge loss sexually, and also in ways you don’t anticipate,” says Meg, a 35-year-old Ohio woman who, like Jessie, underwent a preventive double mastectomy. “For instance, I have no warning when I’m going to get my period. I used to know exactly because my breasts would get sore. For the first couple months after the surgery, I’d be just floored every month.”

Even less-invasive lumpectomies often damage the nerves so nipple stimulation is no longer helpful in achieving orgasm. My friend Becky, who had her surgery in early January, now reports her left breast and armpit are entirely "dead."

“This happens mostly when the incision is near the nipple,” Mills says. “But rather than talking about this with their patients or cutting into a different area, surgeons just go ahead and consider it necessary. Everyone is so focused on getting the cancer out that sexual issues fall to the bottom.”

One organization is trying to correct that. The Young Survival Coalition, a New York-based nonprofit that supports women under 40 who have been diagnosed with breast cancer, runs seminars and support groups whose focus is on relationships and sexuality. And the offerings have become so popular that older women are asking to join the organization.

”We have sex therapists and counselors who can help them deal with things like vaginal dryness -- which occurs in most women after chemotherapy,” says Stacy Lewis, vice-president of programming for the Young Survival Coalition. “For a lot of women, we find it’s simply pain that’s preventing them from having sex.”

In fact, both chemotherapy and many of the drugs used to treat hormone-receptive breast tumors can cause the abrupt onset of menopausal symptoms: hot flashes, mood swings, loss of libido, and vaginal dryness, which leads to painful intercourse. But women at risk for reproductive cancers -- particularly young women -- cannot use many of the fixes available to the general population, such as HRT (hormone replacement therapy) or topical hormone creams.

There is a non-hormonal drug for female sexual dysfunction in Stage 3 FDA clinical trials. But it could be years before it’s brought to market; at this point, there is no effective Viagra-style therapy for women. Nor have any of the dozen or so women I interviewed been advised by their doctors to masturbate in order to increase blood flow to the area -- though it makes sense it might help. Only KY seems to be sensing the growing need for solutions, with its ever-expanding line of female-targeted lubricants.

The only real medical advances for women have been made in the area of cosmetic surgery -- making the areas look more normal and functional even if they’re completely numb. Still, design options are far from perfect.

The fake nipples offered to Jessie were perpetually hard and looked terrible under clothing. “I couldn’t see putting a pair of Tic-Tacs on top of these perfectly formed new breasts,” she says.

Despite a modicum of risk, Meg elected to have areola-sparing surgery -- meaning the dark, round circles from around her own nipples were retained and reapplied -- because her plastic surgeon said it would create a “visual cue.” Breasts without nipples or areolae are like faces without eyebrows. They disconcert, making viewers subconsciously uncomfortable.

A sexual partner -- even a devoted husband -- might respond negatively on a visceral level, without really understanding why.

In a voluntary study of 300 women, conducted by the Young Survival Coalition, 49 percent said their breast cancer experience reinforced or strengthened an existing romantic relationship.

Happily, this was the outcome for Meg, whose marriage thrived as she recovered from surgery. Her husband attended every one of her doctor appointments, met her as she came out of the operating room, and had dozens of flowers waiting for her upon her return home. In the year since her surgery, Meg found she prefers to wear lacy camisoles during sex, but this is because her breasts no long feel erotic to her. It is not because she feels the need to hide them from her partner.

“My husband was there for me across the board,” she says. “He was 100 percent loving and accommodating and has never indicated any dissatisfaction with my body. I am keenly aware of how fortunate I am in terms of the person I’m with. The story of having a guy who just can’t deal is not atypical. I know so many women who’ve had that experience, and my heart goes out to them.”

But of those breast cancer patients who’ve remained married or coupled, Mills says anecdotal evidence collected by the Dr. Susan Love Research Foundation indicates many of them are simply living without satisfying -- or any -- sex.

“We hear a lot of women say it just isn’t important to them anymore,” says Mills. “But we hear other women say their marriage is suffering, or they’re in a bad relationship but terrified of separating from their current partner because that means they’ll have to get out there and date.”

And what about those women who happen to be single already? In addition to the physical changes -- the lack of nerve endings and nipples, the vaginal dryness, the low libido -- there’s the sometimes crippling issue of body image. Men are notoriously visual creatures. Jessie is acutely aware of this.

“It's really hard to seek out new partners because, to me at least, there's a certain spontaneity lost in the heat of the moment,” she says. “I mean, you're making out and all of the sudden you have to say, ‘Oh, by the way, don't want to surprise you, but I don't have any nipples.’ Talk about a mood killer! You just cross your fingers and pray you have a nice moment at dinner when the topic gets brought up so you can 'warn him' ahead of time.”

She pauses, then goes on. “But if you don’t, there’s this black cloud following you around while you're talking about music, food and politics … When will I tell him? And how will he react?” 

That's when we realize that this isn't a Budweiser commercial, after all. It's a PSA called "Save the Boobs" (posted below) for Canada's Rethink Breast Cancer charity. The clip ends with the words, "Breast cancer is the leading cause of cancer death in young women ages 20-49" and then a quick, wet T-shirt contest-inspired shot advertising an event called "Boobyball."

"The goal is to get men to care about breast cancer," says Alina Cho at CNN (video) of the ad, before confidently editorializing: "This certainly will be effective in that realm." She reports that Rethink Breast Cancer's founder hopes the ad will reach younger men. "Young people," she says, "are picking up pamphlets with a 65-year-old woman on them, probably tossing them out." (Because, hey, no one gives a shit when some old hag gets cancer, am I right?) "She says this is a bold and fun way to communicate the message that will 'stop them in their tracks.'" According to Cho, the group's founder believes the PSA will encourage men to help their wives and girlfriends check for breast cancer -- despite the fact that the ad never includes such a suggestion, even though it would have been easy to build in. ("Like boobs? Why not spend more time touching them? Help your girlfriend check for breast cancer.")

But what really bothers me about the PSA, aside from the obvious -- how problematic it is to sexualize cancer, the implication that only hot girls with nice racks are worth caring about -- is its cynicism toward young men. Does Rethink Breast Cancer really believe that the only way to make guys care is to slap together a sexy ad with a boobs-to-information ratio that's downright offensive? Is it impossible to believe that men's interest in breast cancer research might go beyond the selfish desire to "Save the boobs"? I'm all for reaching out to get as many people involved in the fight against breast cancer as possible. I just don't think insulting men's intelligence is the way to do it.