Editor: Sarah Hepola
Updated: Today
Topic:

Cancer

Why do we resist going to the doctor?

I waited too long for my diagnosis: Whence such perversity? Childhood fears
Illustration by Zach Trenholm

Dear Reader,

Hope you enjoy your Thanksgiving. If you want some rather dark laughs in time for the turkey eating, you can instantly download my holiday collection "That Special Time of Year," or order the print-on-demand book from Lulu in time for that other big holiday that's coming up more quickly than any of us really care to admit. Either way, it's cheap fun!

Today I want to write about my reluctance to go to the doctor and in doing so tease out a paradox of personality by which our own self-destructiveness appears to us as self-preservation. This will take a lot of work so there will not be time to also answer a letter today.

Last week, knowing that I had a cancer that might have been detected as much as a year earlier, I was crushed with the weight of fate and my own fear and pride and resistance. My insistence that I knew what this pain in my lower back was, was groundless, born of wish -- in part a wish to avoid learning the truth but more, as I discovered, a wish to avoid doctors and hospitalization.

Basically I ignored the pain in my lower back for the better part of a year. I was strangely, irrationally evasive about it. I refused to see the doctor. I told my wife I would and then I failed to do so. I was even aware, myself, that I was acting irrationally, that I was avoiding and procrastinating.

Having since been diagnosed, aware that I had a tumor, I was writing last week when out of nowhere a phrase came to me about a boy's fear of going to the hospital, and I recalled that I had had a kidney ailment when I was about 2 years old that required me to be in the hospital for weeks.

When this memory came to me I was overcome with tears. An old, childish fear came over me, a fear of dying and being abandoned, and I remembered how I was put in the hospital when I was very young, perhaps 2, for a kidney ailment, and how I was left there.

This traumatic memory was enveloping, pre-verbal, pure emotion, pure fear -- fear of dying, fear of abandonment. As I choked my way through this, I became aware of a voice, or you could say a voice came alive within me. This voice I recognized as a protective entity, like an internal older brother that long ago, when I was very young, had made a pact with the even younger and helpless part of me, saying, "I will protect you; here is how: You must never tell if you are in pain or you'll end up in the hospital again."

And the younger, frightened voice was grateful. And the pact was made: Do not tell. Do not ever tell if you are in pain or they will put you in the hospital.

So it was suddenly clear to me that below the level of consciousness, my long and perverse refusal to see the doctor was a survival strategy adopted as a very young child.

This realization was very real and emotional, not an analytical thing: I thought I was saving my life by avoiding the doctor.

Perhaps I am not the only one who has had early traumatic experiences with hospitals and doctors, and whose adult behavior is rooted in an unconscious pact of survival through silence about pain.

I know that women also avoid the doctor, but not as much as men, it seems. So I wonder if girls in general have different early medical experiences. I know that in the rural and small-town South of 50 years ago, boys were supposed to be "brave." I remember that word "brave," when they stuck the needles in. I was not brave. I was in fear of my life. I was in fear of abandonment to strangers. I was afraid of pain. But I was supposed to take it like a little man.

Now, we know that the emotional life is fraught with paradox and mirroring, that what we seek in ourselves we find in others, that what we despise in ourselves we find in others. But still, suicide vexes us. Self-mutilation vexes us. Our own perverse, self-defeating behavior vexes us. Addiction vexes us.

I'm thinking that certain contradictions of self make sense if we view the self not as a unified being but as a collection of avatars. What if none of us is a unitary being? What if we are all collections of beings at different stages? The child who fears the doctor is still there, as is the older voice of comfort who promises delivery from danger: You will never have to go to the hospital again as long as you don't tell anyone that you feel pain.

But why? Why would this immature, illogical part of myself still be operating in my adult world? What good is it? Why hadn't I jettisoned this ridiculous, superstitious, illogical child-self long ago, in favor of a rational, grown-up, educated, modern perspective?

To jettison the child meant to jettison not just his irrationality but also the wonder and pure creativity that was embodied in the child.

A child can stare at a bug for a long time, enjoying it. A child can look at bubbles bursting on a foamy ocean surface, fully enjoying the miracle of it. This is something we would like to carry into adulthood with us but often cannot because adulthood requires us to mortgage our attention. We mortgage it to the bankers of adulthood. This wonderful, enriching practice of close, sustained attention to the wonder of the world is interrupted by the classroom discipline. Suddenly, the child's attention belongs no longer to him but to the teacher and the class. The child knows that this practice of wonder is a life-giving activity; the child knows that the world he has come into is marvelous beyond measure and that every inch of it deserves unbroken scrutiny. Yet he is upbraided for being dreamy or inattentive. He learns that his attention no longer belongs to him alone, but is now the property of the state, the school, the public. He must be attuned at all times to their instructions. He is called upon to abandon his inner world. If his obeisance to the glory of tiny naturalism is unrepentant, he may be labeled with a learning disorder. If he is so absorbed in the majesty of bugs and leaves that he seems resistant to contact, he may be sent to a hearing doctor or to a specialist in child development.

Something in us resists leaving all this behind. They try to scorn it out of us or beat it out of us but we children resist because we know, with the deep knowledge of our spirit, that the natural world is our home and our ally.

Science, at one point, appears as a possible avenue by which the child might continue his rapt worship at the altar of bugs and flowers. But as the child grows older he is told of the drudgery of science, that it involves long repetitive experiments, much waiting, much adult patience and hard work. So he despairs. Later he finds that even with all that drudgery, he still would be in the environment that he loves, but by then it is too late.

What would be necessary, in the child's life, for him to retain the creativity and wonder of a child but gently let go of the superstition and fear? He would have to go through stages of life consciously, letting go of certain things, acquiring other things.

As I went through this episode of crying last week, at the recollection of this early fear, it came to me that today I can address that child and say that these doctors we are seeing are going to help us, that they are gentle and loving and know what they are doing, that he is going to be safe. I can do that. I can reassure the child in me.

So as I walked on the beach along the ocean toward the cafe this morning, watching the waves, marveling at my good fortune in having this walk for a daily commute, and as I watched the sparkles of the waves, I entered into that childhood dialogue with the natural world once again, and wondered at the tiny explosions of light along the retreating wave-wash, and saw that they were the explosions of tiny bubbles, and looked with wonder at the small jellyfish that look like oblong glass marbles, and I thought of how the child's mind tries to categorize and understand. Things that look like glass must be glass. But what kind of glass is soft? the child would ask. When would glass be soft? And the adult would answer that glass is soft when it is very, very hot, too hot to touch. So the child would think that the jellyfish must be very, very hot. But it is in fact cool to the touch. So what is what? Such is the world of the child.

But how do we keep that childlike wonder and yet make good adult decisions? We must be in touch with that child.

One more thing, if you please. In the writing workshops I conduct, I read aloud every time the five essential affirmations and the five essential practices from Pat Schneider's book "Writing Alone and With Others." They are articles of faith and instructions both, and the only one with which I ever inwardly quibble is the one that says, "Everyone is born with creative genius."

How can this possibly be true? Does that mean that everyone is a Michelangelo?

I believe it is true that everyone is born with creative genius in this sense: The child has a capacity for sustained, uncritical attention to phenomena. The child has the ability to engage in unfettered fantasy and rearrangement of the world, to make up rules that defy what we "know" to be true; the child has the capacity to create whole worlds, and that can be seen as creative genius. That is not to say that the child will mature into an adult who is a recognized artistic genius. That is to say that the kernel of genius is in the preverbal capacity to see fully without thinking first, and to rearrange and hypothesize and create a world based on one's own system of causality and myth, however far-fetched and strange. And so, if we can find methods to reignite that capacity through supportive exploration, we can tap into some of that long-dormant genius.

So we might say that the genius of the child is that the child is not yet at war with himself; the child is completely of the world. And only later must the child create these chilling and baffling pacts to ensure his survival -- pacts that in fact do not ensure his survival but threaten it, and must be unearthed decades later like tombs in which the living are buried.

Thank you for sticking with me through this piece; we now come to a rather abrupt end. It has truly been, in the very French sense of the word, an "essay" -- an attempt, a stab at finding meaning in the void.


That Special Time of Year

What? You want more advice?

New health advice hurting women?

Loosened guidelines on breast and cervical cancer screenings spark fears -- some unfounded

Immediately after reading about the new cervical cancer screening guidelines, which recommend delaying pap smears and having them less often, a friend sent me an e-mail reading: "I mean, should this month's headlines be summed up as, 'New medical guidelines recommend that women get a lot less healthcare than they used to?'" Indeed, this advice comes on the heels of the U.S. Preventive Services Task Force's controversial new guidelines that bump the suggested age for mammograms up to 50. The American College of Obstetricians and Gynecologists, which issued the new pap smear guidelines, says the proximity of both news items is strictly coincidental and that its new position has been in development for quite some time.

Some skepticism on women's part about these relaxed standards makes sense after years of repeatedly being pinned with pink ribbons, lectured about the importance of yearly paps and hit over the head with pamphlets about the lifesaving HPV vaccine. That's especially true for those of us who know women -- some in their 20s and 30s -- with breast or cervical cancer. As my friend wrote, it feels a bit like the overarching message is: "Chill out, chicks! It's just cancer!" Yeah, and it'll just kill you!

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."

Breast cancer guidelines could harm black women

The new screening recommendations are questionable for all women, but especially African-American ones

On Wednesday, Broadsheet's Mary Elizabeth Williams laid out some good reasons to be skeptical of The U.S. Preventive Services Task Force's new guidelines for breast cancer screening, which suggest mammograms every two years for women 50-74, as opposed to every year for women over 40. Although "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," Williams says, "What's optional for one woman may be the difference between life and death for another." And sometimes, says Ashton Lattimore at NewsOne, race will be the factor that determines which woman is which. "Perhaps even more than others, one group has particular cause to be wary [of the new guidelines]: Black women."

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.

 

Hold off on that mammogram?

New guidelines for breast cancer screenings say you can wait -- but should you?

On a beautiful June Saturday last year, my friend, neighbor and comrade in motherhood Martha died of breast cancer at age 45. Summer dissolved into fall, and when our community returned in September, I noticed another friend, her head swaddled in a scarf, in the schoolyard. She was in her mid-40s, and in the midst of chemo for breast cancer. (And thankfully, she’s currently doing great.)

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.

Sex without nipples

What doctors rarely tell women with breast cancer: Just because you have the same equipment doesn't mean it works
iStockphoto

What came between Jessie and her boyfriend of seven years was nipples. Or rather, the lack thereof.

Jessie (a pseudonym -- while she wouldn’t mind using her real name, her ex would be mortified, she says) is a 31-year-old schoolteacher from New York who underwent a preventive bilateral mastectomy two years ago. For her, the decision was simple.

She had six maternal relatives who’d had breast cancer, prior to menopause in all but one case. Her own mother had been diagnosed at 26 and was dead by age 30. When Jessie herself tested positive for BRCA1 (a gene mutation that raised her chance of developing breast cancer to 60 percent, as opposed to 12.5 percent for women in the general population) her immediate response was, Why wait to get sick?

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?” 

To hell with the woman, save the boobs

Is a sexy new breast cancer PSA offensive ... to men? Video

You've seen this ad a million times before: There's a massive pool party going on, but one poor, timid dude is floating, alone and forlorn, on an inflatable raft. Suddenly, a bikini-clad hot chick makes a grand entrance, her ample breasts jiggling with every step she takes. Everyone -- men, women, a perplexing group of guys in sailor costumes who seem to fit a particularly offensive gay stereotype -- pause, mid-conversation, to gawk as she passes. The words "You know you like them" flash across the screen. Finally, the girl stops in front of the lonely guy, leans over, and shakes her boobs in his general direction. "Now," we learn, "it's time to save them."

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.

Page 1 of 23 in Cancer Earliest ⇒

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