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This Man Survived Breast
Cancer ![]() By Ted Allen This is a story about numbers. And then, decidedly, it is not. The first of these numbers is seven: one man plus one woman plus four kids plus a dog named Happy. [Seven] This is the home of Dave and Teresa Lyons. And you find, after knocking on the door and being admitted to the cozy living room by a seven-year-old in his pj's and a two-year-old Labrador-spaniel mix, a big, loving, chaotic family. There's the two foster kids (eleven and four), whom we'll call Melinda and Jack. There's Jacob and David, their natural-born sons (nine and seven). There's Ashley and Raymond, whom the couple is watching so their mother can go to work. Six kids and a puppy. Three bedrooms. One paycheck. There are sounds of computer games, barking, and occasional shrieks of toddler outrage; there are shelves sagging with National Geographics and videos and toys; there's Dave's collection of Hot Wheels cars—he especially favors purple ones. There are Olan Mills portraits of Jacob and David arranged stair-step on the wall, both looking left and upward, toward a third portrait: Jesus. And on a blue love seat, the closest thing to a sofa that will fit in the crowded room, sit Dave and Teresa. Dave has positioned his right arm upon the back of the sofa, with his forearm hoisted skyward. He flexes his fingers as if he's crunching a squeeze bulb. He does this with his arm, with the squeezing, for hours on end. David Bayne Lyons is thirty-six years old. He is soft-spoken and gentle, and he radiates a goofy sense of humor. He's possessed of a boyish aspect and wiry, thinning black hair, wears blue jeans and a purple T-shirt and glasses and Nikes. He grew up in Fremont, California, where his father was an electronics technician and his mother served it up in school cafeterias. He and Teresa were married in 1986 in a quickie chapel in Reno—the kind of place where you return the plastic bouquet after the ceremony—and kept it a secret until they could seal the deal with a church wedding later that year. "We tied a double knot," says Teresa, "so it won't come untied." They are both devout Seventh-day Adventists, and they eat no meat and neither smoke nor drink. Dave works in the class-1 "clean room" at Intel, where you will find only one half-micron of dust per cubic foot. There, in a white Gore-Tex bunny suit (that's what he calls it: his "bunny suit"), he cranks out the microchips that have powered the nation's techno-revolution. "Mostly what we do is we put the wafers on the machine and push start," he jokes. They are the most regular of American families, a loving family, a salt-of-the-earth, giving sort of family, as you can plainly see, and things are pretty good. But it's been rough these past three years—very rough. The warning
signs, they came way, way back. Back when Dave was just a teenager. And
the signs, despite Dave and Teresa's desperate efforts to get answers,
they were flat-out ignored. [Two-Point-Two] It is. After work, he brings it to Teresa's attention. She looks. He squeezes and more pinkish fluid comes out. Oh, my God, she thinks. What's happening? Something takes shape in her stomach; she will later describe it as a heavy ball of dread. She wipes away the fluid with a tissue. The doctor sees him a week later and forwards him to a specialist in breast diseases. What the specialist in breast diseases tells him: Don't give it a second thought. This pattern will persist, with each new job and each move and each insurance change and each new GP—four doctors, eight years, a mantra of blithe reassurance. And eventually, Teresa says, the pooh-poohing from one medical professional after another takes hold and causes the ball of dread to shrink, to recede. And then, in late 1997, Lyons is roughhousing with his boys, and he finds himself pushing them away from his right side because somewhere along the line, pain has come into the picture—a throbbing ache that radiates from the pectoral area to the right arm. And then there's that dinner at Round Table Pizza, which features a play structure for kids; one of the tots drops a toy between the play structure and a wall, and Dave, reaching for it, brushes the right side of his chest against a sharp corner. "The only pain I can think of that comes even close," he recalls, "is getting hit in the testicles." And Dave is worried. And Teresa is worried. And this time, they resolve, something is damn sure going to be done. An appointment is made, and Dave drives to a clinic. There he is told
to put on a gown, open to the front, which feels strange. He's a man,
after all, he goes to the swimming pool without a shirt; why not here? But
he complies. She notes that his is the hairiest chest she has X-rayed in some time. They laugh. The crack makes Dave feel a little better. After the X ray, there is an ultrasound. And the radiologist tells Dave he does not like the looks of this thing. Not at all. This thing, he tells Dave, it measures 2.2 centimeters. It has edges that are bumpy, like a piece of cauliflower. Garden-variety cysts don't have edges like that, plus, they're hollow, with fluid inside. This thing, he says, it has blood vessels in it. [Fourteen Hundred] Borgen is the breast-service chief in Sloan-Kettering's department of surgery. He is a nationally recognized authority in the field of breast cancer at one of the nation's best cancer hospitals. He has seen thousands upon thousands of breast-cancer patients since the 1980s and has saved thousands of their lives and has lost many, too, and of these thousands upon thousands, about 140 of these breast-cancer patients were men. You are surprised to learn that men can develop breast cancer? That selfsame disease that ravages millions of women the world over? You did not know this? Don't feel bad. Your doctor doesn't know, either. Even breast specialists don't always know, as Dave Lyons learned. In his entire lifetime of practicing, chances are, your general practitioner might identify one case. He will be shocked and astonished. He will telephone his colleagues. He will not know what to do. Why this uncertainty, this lack of information? Simple, really: "You look for common things, commonly," says Portland oncologist Ralph Weinstein. "Men, they feel a lump, they don't know they can get breast cancer,
they go, they see their doctor, he doesn't know men can get breast
cancer," Borgen says. "Their doctor tells them, 'Well, let's see if it
goes away. Come back in six months.' " So is this yet another damned disease a man needs to worry about catching? Not really. Not much. But a little. When boys and girls are still in the single digits, their breasts are essentially the same—undeveloped ducts just under the nipple and areola. At puberty, girls' ovaries produce hormones (notably estrogen) that cause the ducts to grow and lobules (milk glands) to form at the ends of the ducts. The lack of estrogen prevents this growth from happening in boys. But they retain those vestigial, atrophied ducts. Women have vastly more breast cells than men, which is part of the reason why they're much more susceptible to breast cancer. But men aren't home free, particularly men with a family history of breast cancer (even among female ancestors) and men with the common disorder gynecomastia (an enlargement of the male breast) or the rare genetic condition Klinefelter's syndrome. Age is also a risk factor (most patients are diagnosed in their fifties and sixties), as are exposure to radiation, liver disease, and estrogen treatments, such as those used by prostate-cancer patients and transsexuals. The causes of breast cancer, as with most cancers, are not firmly known. Some breast cancers are related to inherited mutations of the genes that suppress tumors. Estrogen and other hormones are thought to play a major role; most breast cancers feed on these hormones. Ironically, the whole reason Borgen became interested in male breast cancer in the first place was the potential such research into hormonal differences between the genders could offer. The good news: Male breast cancer is often easy to detect. It always occurs immediately behind the nipple, in the milk ducts that, because men are men, never develop. So that's where you look. (In women, cancer can occur behind the nipple, but far more often it strikes in the upper lobes of the breast, closer to the arm.) Sometimes male breast cancer causes inversion of the nipple. It may cause bleeding there, too, although that happens in only about 20 percent of cases. "A bloody nipple discharge in a man who hasn't had any history of trauma is breast cancer about 90 to 95 percent of the time," says Borgen. Yet, harmless cysts are common enough that it hardly makes sense to go
around mammogramming and biopsying every guy who comes into the doctor's
office complaining about a bump (numbers, yet again). What's needed is
something simpler: for more doctors to become at least dimly aware of a
constellation of symptoms. You figure, male patient, in his fifties or
sixties, family history of cancer, painless mass behind a nipple,
gynecomastia, let alone nipple inversion or bleeding—"these should all
play a role in someone's index of suspicion," Borgen says. All of the
above, he says, "that should set off a lot of bells, buzzers, and
whistles." That's all. On D-day, the doc is almost jolly, despite his conviction that the Lyonses are wasting their time and, more important, his. He performs the lumpectomy. Local anesthetic. Dave feels no cutting, no pain; he does feel a touch of nausea, a tugging. He hears these sounds: the suction machine, the snipping of scissors, the clanking of instruments on a tray. The proceeds: a lump of flesh, size of a grape. It's a dull word, lump, suggesting something stupid, inanimate. Another term, mass, feels similarly vague, faintly threatening, maybe, but clinical. Growth, that's worse than mass. Cyst sounds like something disgusting on your toe that doesn't belong, but harmless; something that's removed and forgotten. And then there's tumor. "Oh, yeah; this is fine," the surgeon says. "I'll be able to tell you this is not cancer." Seven days pass. On December 16, there is a chemical spill at the Intel plant. Dave, being a member of the emergency-response team, dons a protective suit and helps clean it up. Wearing the suit causes a man to sweat prodigiously, so when the job is done, Dave's supervisor sends team members home for a shower. Dave reaches the trailer about noon, scrubs up, and sits down at the kitchen table with Teresa. It is a pleasant surprise for her; Dave rarely comes home in the middle of the day. The phone rings; Teresa answers. It is a man. He asks for Dave. It is the surgeon. "And so I handed the phone to Dave and I just collapsed in a chair," Teresa says. "Dave sat down and his face just turned white, I mean white as a sheet. If I could have sunk down any more, if I could have fallen off the chair—I was just in shock. I didn't even have any words. I couldn't cry. I was just too . . . too shocked to cry, I guess. "And I said, 'It was cancer?' And he goes, 'Yes.' And we just sat there looking at each other. "I said, 'Honey, you can't go back to work.' He said, 'I have to. What am I gonna do? Sit around here and mope all day?' " Teresa tried hard not to start crying. They stood there hugging each other for probably five minutes. And he said, "I have to go." "You can't even describe the awful sick feeling you have, the sinking feeling, like a ship is going down," Teresa says. "And I thought, Oh, my God, he's gonna die. And there's no way I can raise my kids on my own. The kids are playing; how do you explain to them that Daddy's got cancer? "All we knew was that they didn't get it all. There was still more there. The margins had been positive." The second surgery, a modified radical mastectomy, comes without delay this time. It takes three and a half hours. The lymph nodes feel unusually large, the surgeon tells Teresa. You better pray there wasn't cancer in those nodes, he tells her. When the nurse removes the bandages the next morning, a huge flap of skin comes off with them. On the right side, Dave's chest is not just flat; it's deeply indented, purple and red from the trauma, staples and sutures everywhere, two elliptical scars coming together and trailing up to the armpit, from which a clear tube drains fluid into a bulb. After a time, the doctors and nurses leave. Dave and Teresa are shocked and angry; the wounds look sloppy to them. "They took my nipple," Dave says. The surgeon hadn't mentioned that. Happily, they can do that sort of manipulation now with drugs. But nearly any man who develops breast cancer will need a mastectomy, the removal of all the offending breast tissue, the nipple, and the areola. Of course, cancer is often not content to stay put. If it metastasizes through the lymphatic system, the body's "pool filter" network, which drains upward from the breast through a string of lymph nodes under the arm, those nodes must come out, too. And when you take out enough nodes under an arm, a condition called lymphedema can result, in which the lymphatic fluid that accumulates in that arm has no nodes to escape to. The arm swells, sometimes painfully, making manual work difficult. There's no cure, just massage techniques and compressive bandages that help force the fluid back out of the arm. For many men, of course, the surgery is just the beginning. There's chemo and radiation, too. Lyons was lucky enough to dodge those bullets, but he got a nasty case of lymphedema—that's why he holds his arm skyward on the back of the couch, flexing his hand, squeezing the lymphatic fluid back into his torso. Considerably worse, both for him and his family, have been the side effects of his primary medication. Four weeks after his mastectomy, Lyons sees his oncologist for the first time. The prescription: tamoxifen, a frontline treatment for breast cancer that blocks cancer-cell receptor sites for estrogen, upon which they would otherwise feed and grow. The drug is effective for many people, but it can cause serious side effects in men: depression, hot flashes, sleep problems, lack of libido, impotence. "We read that the loss of libido was awful," Teresa Lyons says, "but the worst part were the mood swings and depression." Dave rubs his eyes; his left hand shakes slightly. "It's been pretty hard on my family," he agrees. Nine months into the drug therapy, Teresa's parents are visiting, staying with the Lyonses in their crowded trailer. Teresa's mom ignores Dave's pleas that she stop cleaning, scrubbing, washing. He blows up. "He told her that he didn't like having her in our house, and that she needs to mind her own business," Teresa says. Mom starts crying. Dave rips his arm from Teresa's grasp and runs out of the house into a frigid night. In a T-shirt. Half an hour later, she finds him pacing the block, still seething. Around the same time: Tough day at the plant, nothing's going right, and the emergency-response team is paged to perform an emergency drill. Lyons goes ballistic. He peels the ERT sticker from his employee badge, storms up to his supervisor, smacks the sticker onto the supervisor's chest, and hollers, "I don't have time for this crap!" "I don't talk to anybody that way," Dave says, "much less my supervisor." You've got to get this taken care of, Teresa says. You're going to lose your job, she says. You're going to ruin our lives because of your anger. The doctors up his dosage of Paxil, an antidepressant, and Lyons evens out pretty well. "He's still hotter under the collar than he ever was," Teresa says, "but it's under control now." And his prognosis? As with any man, it should be no worse than it would be for a woman. The previously held notion that breast cancer is more deadly in males turns out to be largely a function of delayed diagnosis. Of medical ignorance. When that lack of knowledge is surmounted, male breast cancer is exactly the same disease. "If you correct that delay," Borgen says, "then the disease is every bit as curable, as treatable, as female breast cancer is." Dave had a long, long delay in diagnosis. "There should not be a reason why men have an inferior chance for cure
than women," says Dr. Weinstein. "If it's done right."
The "honorary" thing galls him and Teresa, but they show up, albeit with chips on their shoulders, and they bring more than $200 that they've raised from friends and neighbors and people from church. Dave still has to tussle at the sign-in table to get his hands on a competitor's shirt and cap emblazoned with survivor—the volunteers want to give him a different shirt, the kind worn by spouses. He wins out. When Dave was first diagnosed, he recalls, "I was too embarrassed to tell anyone." Now, at the race, he elects to keep the shirt untucked. "If anybody bugs me about it," he vows, "I will pull up my shirt and show 'em!" Along the route, a few of the onlookers point at Dave. Some snicker. The Komen Foundation is a hugely successful operation—there are now 109 cities hosting Race for the Cure—and is obviously a well-meaning one. But its raison d'être, like that of the entire breast-cancer system—research, fundraising, public relations, psychological support—is breast cancer in women. The movement has been incredibly effective. Borgen calls it the strongest lobby in the country, stronger than the NRA. But it appears unprepared to deal with the 1 percent of cases that happen to be male. Recently, the John W. Nick Foundation, named for a Wall Street broker who lost his life to breast cancer, created a ribbon honoring both men and women with the disease (it's pink and blue), but few have ever seen it. Dave and Teresa Lyons felt so alone in their struggle that they launched a support group, the Male Breast Cancer Awareness Group, in Portland, one of the few anywhere in the country. Its first meeting was in October of 1999. No such endeavor has yet to take wing anywhere near East Windsor, New Jersey—at least not to Bill Sherman's knowledge. Sherman, a high school guidance counselor, naturally felt shocked and frightened when he was diagnosed with breast cancer in 1996, and so he sat in on a women's group. "And I was—I don't want to say shunned, that's a strong word," Sherman recalls. "But I never felt welcomed. I just didn't feel welcomed, so I didn't go back." Even if there were more men's groups, there's that peculiarly male tendency toward stubborn self-reliance and insecurity at play here, too. "Women pick up the phone and call fifty other women," says Borgen. "They network, they say, 'Oh, I know a good radiation guy, I know a good surgeon, I know a good acupuncturist.' Men don't do that; men sit at home. It's almost like asking for directions; men just don't do it." Sherman is asked if he's ever met another male patient. "Met?" he asks. "Uh, no. Nope. I'm on the Internet, but I have not met any." Back at the 5K race, Dave makes it to the finish line, where the woman
who is supposed to record his time won't take his ticket. "Are you the
person who's supposed to take this?" Dave growls. "Sor-ry," the
woman says sarcastically. "I had women telling me, 'We don't want men in this group; it's a woman thing,' " Teresa says. "I mean, even before the race was half over, we were feeling defeated. I didn't even want to turn in the money." But they did turn in the money. And Dave got a prize. And a short time later, they got a vastly better reward. The best possible reward. The most meaningful, inspiring, exciting outcome possible. Which is to say, through their actions, they quite possibly saved a man's life. [One (One More)] "My daughter says, 'Dad we've already decided you're gonna die of a heart attack, not cancer,' " Gilbert cracks. "She's very candid." Also, Gilbert suffers from a case of gynecomastia, a risk factor for the disease. In late September of 1999, Gilbert was carrying his wife's sewing machine up a flight of stairs and bumped it against the left side of his chest. It hurt. Shortly thereafter, his wife, Nancy, recalls, he went to his doctor on a routine matter and mentioned the chest pain. "And the doctor said, 'Well, let's just watch it.' " Three weeks later, the Portland Oregonian published a small story about Lyons's dustup with Race for the Cure. The story got picked up by the Eugene Register-Guard on October 7. Gilbert read it over breakfast and faxed it to his doctor. The next day, the mammogram. "They squeezed the hell out of me," Gilbert says. On October 12, the ultrasound. "Nodular palpable abnormality just to the ten-o'clock position of the left nipple," the radiologist wrote of the tumor, about the size of a pea. "Should be biopsied . . . suspicious for malignancy." It was. And it was. On October 29, the modified radical mastectomy. Nancy, it should be noted, is not Richard Gilbert's first wife. The woman he was married to before, Roxy, died of brain cancer. Her deterioration lasted five years. In part because of that, Nancy imagines, her husband decided to act early. Still, the improbable activism of the Lyonses can't be overlooked. Because the mild-mannered couple—hardly political rabble-rousers—were hell-bent on participating in a women-only event and because they formed a support group and got their story into Gilbert's local paper and because he saw it and faxed it to his doctor, a malignant tumor was detected and removed. "I think we might have made a difference for a few people," Teresa allows. Gilbert's lymph nodes turned out to be clean. He now will check in with an oncologist every three months for the next two years, every six months for three years after that. "I feel like I've been reborn because of this experience," Gilbert says. After his surgery, he drove up to visit the Lyonses. He brought them an azalea and Morse-code flashlights for the boys. It turns out that Gilbert also is a Seventh-day Adventist. Coincidence?
"That might be the wrong word," Lyons says. "I believe that I was healed," he says. Of course, faith would be meaningless if it were easy. "That fear, it's always there," Teresa admits. "This could show its ugly head again. We believe he was healed, but we also know that—reality—that it could come back." Little Jack, the four-year-old, interrupts for the umpteenth time and approaches Dave's knee. The boy's been living in their home for only a week; already, he's calling them Mom and Dad. "Dad," Jack wants to know, "where are my socks?" "I don't know," Dave says. "Where'd you take them off?" "I took them off in the bedroom." "Well, they must be in the bedroom, then." [Ten] [Eighteen] Five-year survival rate for men with breast cancer with no metastasis: 90 percent. Five-year survival rate when spread to regional lymph nodes: 75 percent. Five-year survival rate with distant spread: 20 percent. Relative delay in diagnosis of men versus women: eighteen months. |