Barbara Mojonnier, doing her weekly volunteer work at the hospital, pushed her book cart into a room and was surprised to find an acquaintance from her church. "What are you doing here--malingering?" she asked cheerfully. "Oh, I've just had a mastectomy," came the response. It was typical of Kim: she never told many people when she was going to the hospital, and she never made a big deal about her treatments.
Kim Schaubel Thomphsen found the first lump in her left breast, in the summer of 1984, when she was 33. (Actually, it was her second lump; the one she'd found seven years before was benign.) After watching it for a month, she saw her doctor. A mammogram led to a biopsy, which led to a modified radical mastectomy of her left breast and lymph nodes. Three of the lymph nodes proved cancerous as well.
Her chemotherapy started six weeks after the surgery, and went on for six months. "What was it like?" I asked her in a 1986 interview. "It was no fun!" she snorted, with a touch of asperity. "How would you like to be bald?" The chemicals that kill cancer cells also kill other fast-dividing cells: skin, hair, digestive tract. She spent most of those six months feeling queasy from the drugs. "I'd rather die than go through that again," she swore.
Her chemotherapy consisted of an IV once a month, containing three kinds of drugs--one of which kills tissue on contact--and a follow-up two weeks later. She was given antinausea pills before treatments, but they didn't help much.
"It's a real slice of life in the waiting room," Thomphsen reported, "all these women in varying stages of cancer. There are some with brain tumors, who are ready to check out. It's hard--it could be you in five years."
In 1960, one out of 20 American women could expect to have breast cancer at some point during her lifetime. Five years ago that figure was one out of 13. Today, it is one out of nine. Some medical experts estimate that it will be one out of four women by the turn of the century.
No one knows what causes breast cancer. Various researchers have various theories: heredity, diet, environment, stress. But one might as well posit the wrath of God for all the good that medical speculation has been in predicting who will get breast cancer and who will be spared.
In 1970, there were 69,000 new cases of breast cancer in women. (Men can get breast cancer, but it is extremely rare.) In 1992, the estimates are for 181,000 new cases. It is also estimated that there will be 46,000 deaths.
Breast cancer is measured in stages. Stage one is the presence of a tumor of less than 2 centimeters that has not spread, or metastasized, to the lymph nodes; stage two is a tumor of 2 to 5 centimeters, with or without metastasization to the lymph nodes; stage three presents a smorgasbord of ten different possibilities, including tumors bigger than 5 centimeters and tumors that invade the skin. Stage four comes when the cancer has metastasized to another part of the body.
The treatments for breast cancer have not appreciably changed in the last decades: they still consist primarily of "slash, burn, and poison," as one breast cancer activist puts it: removing cancerous tissue, using radiation to attempt to kill cancer, and using chemicals.
In the past, women have accepted what was doled out in the way of research money and what the medical establishment chose to do in the way of treatment. Today, women are starting to talk back. Each woman affected by this killer deals with it in her own way--but, increasingly, those ways are tinged with anger.
What do researchers think causes breast cancer? Replies Kara Smiggle, a press officer with the National Cancer Institute, "That's a more loaded question than you know. There are a lot of risk factors: exposure to hormones, early menses, late menarche, children that are born late--after the age of 30--or not at all. Some studies show a connection with post-menopausal estrogen, or with birth control pills. They're looking at fat and alcohol in the diet. There's some evidence that fat is a factor; they go back and forth on alcohol." The one thing that's certain is that the incidence of breast cancer has been rising steadily at a rate of about 3% a year since 1980.
What's the correlation between chemotherapy and survival rates? According to Smiggle, it definitely helps with more advanced cases. "The biggest controversy is with women who have tumors under one centimeter; they may be doing more damage with the therapy than good."
Ninety-two percent of women whose cancer is found early, while it is still a single small lump, are still alive five years later. With cancer that's more advanced but still confined to the breast, the five-year survival rate is 71 percent. Once it's metastasized to other parts of the body, that drops to just 18 percent. The overall five-year survival rate is 72 percent, high because so many cancers are found in their early stages today. Since breast cancer, unlike most cancers, cannot be considered cured after five cancer-free years (it has been known to recur years later), it is worth considering the most recently available data (1989) for the 15-year survival rate for breast cancers in all stages: 51 percent.
Although breast cancer is still most common in postmenopausal women, it is a much more virulent disease with a much lower survival rate when it turns up in younger women, says Joann Schellenbach of the American Cancer Society's New York media office. "Breast cancer is now the number-one diagnosed cancer in the country. It's overshot lung cancer, which affects both men and women. When you consider that, really, only women get breast cancer, that's a lot of cancers." With the aging of the baby boomer generation, Schellenbach anticipates that breast cancer rates will continue to rise.
"The time is ripe. Women are angry. The mortality rate hasn't changed," says Sharon Green. "[The cancer establishment says] "We're making all this progress'--but we're still burying women. Our biggest frustration is that we have nothing to tell people about why women get breast cancer."
Green is executive director of Y-ME, a not-for-profit support organization for women with breast cancer. It provides basic information, education, counseling via a hotline (1-800-221-2141, 9 to 5 weekdays, 708-799-8228 24 hours a day, seven days a week), and self-help meetings for all those affected by breast cancer--patients and their families and friends.
In recent times they've become involved in the political process of lobbying. With seven other groups, they began the Breast Cancer Coalition, with over 150 member organizations nationwide, and, says Green, "a broad agenda." With the flap over the FDA's attacks on silicone breast implants, something which a majority of women who have undergone mastectomies have got in the past, Green's become one of the usual suspects to call for quotes on the topic for reporters from around the country. She's a busy woman, somewhat abrupt, and usually hard to get on the telephone.
Green has been chief administrator for Y-ME since 1983; co-founder Mimi Kaplan was her neighbor and friend, and they worked together on various projects. Has she seen women's attitudes change in that time? "Absolutely. Women have become much more public about it--they've taken it out of the private arena, and put it into public view."
Where she hasn't seen much change is in the treatment of breast cancer, or in the importance given research. "In 1989, there were 150,000 new cases. For 1991, the figure is 175,000. They don't know what's causing it. The survival rate has been the same for 60 years. Today's treatments are prolonging lives, but not necessarily saving lives over the long term. There's an emphasis on mammography now, and that's good, but mammography is not prevention--mammography is detection."
"I am angry. I am pissed. In fact, I think what keeps me going is my sheer anger. I am really livid."
Margaret Harte seems an unlikely candidate for such vehement sentiments. Small, blond, attractive, and looking much younger than her 51 years, the North Carolina native and erstwhile civil rights marcher is the wife of a successful attorney, William Harte; they live on Lake Shore Drive and just bought a farm near Monroe, Wisconsin. At a recent fund-raising dinner for the Wendy Will Case Cancer Fund (founded by U.S. District Court Judge Hubert L. Will, in honor of his late daughter, and dedicated to funding cancer research), Harte mingled easily in the well-connected crowd. Her first friends, when she moved here from Baltimore three-and-a-half years ago, were Carol Phelan and Barbara Daley, wife of the now-president of the Cook County Board and sister-in-law of the mayor, respectively. Both are now dead of breast cancer.
Margaret Harte's mother died of breast cancer at the age of 47. Harte has had breast cancer twice: in 1982 and in 1987. The second instance was overlooked by doctors at two major institutions, Deaconess Hospital in Boston (where her mother died) and Johns Hopkins, in Baltimore. In April of 1987, she found something in her breast; a benign cyst was removed. She went to Johns Hopkins in August, where the doctor told her, "Don't worry, honey--it's scar tissue." Three months later, when, persistent, she returned, the diagnosis was a little different: "I don't think it's all scar tissue." It turned out to be a huge nine-centimeter tumor. The chemotherapy, she says, was "horrible," and lasted for almost ten months. She was told she had a 40 percent chance of being alive in five years.
Because her lymph nodes have been removed, she has edema (an accumulation of fluid) in her right arm; on those days when she doesn't have time to put her arm in a machine and pump it for an hour, it grows swollen and livid, a condition she disguises under long sleeves. Says Harte, "I'm one of the lucky ones."
Harte has seen the tone of the discussion change in the time she's been involved with Y-ME. "It used to be, "We don't want to talk about death.' That changed in March or April. In the last year or so, it's like the momentum has really increased. Women are angry."
Harte says she doesn't worry about her own future too much anymore. "95 percent of the time I am okay. The other 5 percent of the time I am scared shitless.
"I've had a full life; I've seen my children grow up. I don't have grandchildren, but I've made my peace. My fear is that in the next ten years my daughter will develop breast cancer." Because of the family history, she took her daughter to see a surgeon "when she was 29, to investigate the possibility of a prophylactic mastectomy. The surgeon said she had a 30 to 40 percent risk factor--'but life is a risk, you take a risk driving home.' I told him, 'If I thought my chances of getting killed on the way home were 40 percent, I wouldn't drive.'" Harte sees the surgeon's remark as indicative of a pervasive sexism: "I think that because they have this mindset of what the breast represents to men, to women, to children in our society, men cannot give women good advice about their breasts."
Harte's 52-year-old sister is now in her 21st month of chemotherapy for ovarian cancer, and 20 members of her family are to be genetically tested, to look for markers that might predict which of them will develop cancer. "Some people think that's just awful," she remarks, "They ask, "Why would you want to know?' Well, if I had had the information three years ago, I would have made different decisions."
Margaret Harte has made the decision to have her breast implants removed, even though they're not from Dow Corning. "I'm going to go to Marshall Field's, and buy the size I want. I have decided I'm okay without breasts, and I just don't want to run those risks. Basically, what it comes down to is that I don't want to die."
"I try to get as much information as I can; I keep up to date on research." says Margaret Harte's daughter, Kim Forehand. "I've read a ton of literature. I've altered my lifestyle a lot, based on some of the things I've read. I try to minimize the amount of stress I subject myself to. I'm on a low-fat, macrobiotic diet, I grow my own organic food and shop in specialty stores, because of the differences in breast cancer rates here and in Japan. But I don't think I'd be real surprised if I had it."
Forehand, 32, moved to the university town of Lawrence, Kansas, because "things are quiet here, and there's not a lot of stress for me." She has already had one benign cyst removed from her right breast. When her mother suggested she have a prophylactic mastectomy, "it sounded a little bit alarmist. Mom accuses me of denying a lot of it. She wants me to get a yearly mammogram, but I'm real squeamish about x-rays and radiation, even though it's low level. She really wants to protect me, and make sure I don't have to go through what she went through. It's kind of terrifying to be around her when she's afraid for me." Does Forehand worry a lot about the future? "I think about it, but it's not as real for me as when I'm around her.
"I think there are a lot of things that I do to prepare myself for the possibility that I might lose my breasts. Sometimes I imagine what life would be without them--and I'm pretty uncomfortable with that. But I'm not a real bosomy woman, and I don't have a lot of identity wrapped up in my breasts. Maybe I've downplayed that part of my anatomy. I try not to be negative."
Forehand has consulted a geneticist and other authorities in the field. "I'd like to see if altering my lifestyle makes a difference. But you read all the research--and no one knows why some women get breast cancer and some don't. It's kind of a scary thing. It makes me get things done sooner, I think. Even though I say I intend to live to be 100, I don't really expect my life to be that long."
Kim Thomphsen went on a strict macrobiotic diet after her first diagnosis, sticking to it even on vacation, and giving up all the foods she loved, in the hopes that it would keep the cancer at bay. She had reconstructive surgery, and made jokes about the surgeon throwing in a tummy tuck at no extra charge; according to her husband, Richard, she had only a couple of tearful, "Why me?" episodes in all that time. Kim kept on working--she was a popular children's librarian at Oak Park's main library--and singing in the choir at her church. She had another half-dozen recurrences of her cancer, most of them localized and easily removed. "Every lump she ever had, she found herself," says her mother, Joan Schaubel. "She'd find a spot, and they'd take it out--except for the one that crossed her waist, the last one."
In the spring of 1990, Kim had a radiation implant at Rush-Pres-St. Luke's. It burnt the lower part of her left breast, the reconstructed one--"it was like a little hunk of leather," her mother reports--and she got an infection. Soon she began having trouble walking. There was a spot on her lower lumbar: The cancer had metastasized.
Her doctors decided on a bone marrow harvest, to be followed by massive chemotherapy and reimplantation of the marrow. The chemotherapy almost killed her. The implant was in March of 1991, and it kept her in the hospital for a month. "How are you feeling?" I asked Kim, somewhat inanely, through my surgical mask, during a visit: she was bald, her skin pasty, her eyes half-shut; her hands passed languidly, randomly across the sheet. She shot me a sly, sideways glance, and managed a grin. "Don't worry about me. I plan to die with hair."
Kim felt better for a couple of months, but never really got back to normal after that round of chemotherapy. Less than a season after her return home, more cancer was found, and all the doctors could propose was yet another bout of chemotherapy. Kim elected not to have it.
Instead, she went home, with an IV containing morphine and a button to dose herself. She was still in pain, she confided, because the morphine gave her frightening dreams, and so she took very little of it. Morphine does not really make a patient feel good, in any case; all it does is dull the pain. The use of heroin, which can actually make cancer patients feel good, is strictly prohibited in this country by government decree. One cannot, after all, have dying people turning into junkies.
Wracked by pain and nausea, Kim gradually slipped away. Friends and colleagues came to say farewell. Some days were better than others, but the spiral led implacably down. She could still make a joke the day before her death: trying to see if she could feel anything, to get some response, her husband, Richard, ran his fingers along her neck and upper chest--"Can you feel the little spider?" Kim opened her eyes, glanced at him and whispered, "You're not gettin' any." She died in her own bed on July 27, her hair still just a fine, short golden fuzz, like a baby's.
We buried her ashes the following Wednesday evening, on a night so hot that all moisture was leached away; there was nothing left to cry with. The choir to which she had belonged since age seven sang her to her grave in the church garden; the parish was packed with mourners, and her little boys fidgeted in the front pew.
"Kim was angry," says her mother. "She'd say, 'If it was a man's disease, something would have been done about it. If it had been a disease of the penis, they'd have found a cure.'
"If she'd got it a couple of years later, she might have had a better chance. Now they know that, if she'd had a hysterectomy, it might have helped. Now they know that the time of the month you have your surgery makes a difference. Who knows what else they might find out, if they work on it?
"I often think about that--'What if?'" She pauses, collects herself. "But you can't go back. You can't go back."
Sue Gole was diagnosed with breast cancer a little less than four years ago. She choose to have a mastectomy and immediate reconstructive surgery, with eleven months of chemotherapy as part of the package; her reconstruction sprang a leak, and had to be redone. A staff hotline counselor for Y-ME, she is one of their most articulate spokeswomen.
Gole thinks the AIDS lobby has been far more effective in getting funding than have groups concerned with breast cancer: she cites the $1.1 billion spent on AIDS research in 1990 as opposed to $81 million on breast cancer. "In the last eight to ten years, 120,000 people have died of AIDS. At the same time, 500,000 died of breast cancer. That's kind of one-sided, don't you think?
"We have been taught to be good little girls, and it's killing us. Our silence is killing us. We can't just be good little girls anymore. I don't plan to go rampaging through a TV studio, but it's time that we speak out."
Gole says there was no history of cancer in her family when she was diagnosed with breast cancer at 41. "It's one of the things that makes me mad. We don't know what to do to keep from getting breast cancer. We know how to avoid diabetes. We know how to avoid heart disease." While there are some tentative guidelines purporting to show who may be at risk for cancer, "70 to 80 percent of the women who develop breast cancer meet few or none of the guidelines."
Gole suspects that environmental factors may be a larger part than acknowledged, and that there may be some correlation of cancer with geography. "I live in northwest Indiana, and I worked in a steel mill for ten years. I smoked for a long time. The highest cancer rate in the state is in Laporte County. Twelve people in my temple have had cancer, out of a congregation of 200."
But breast cancer, as she stresses to the women she talks to on the hotline, "is not necessarily a death sentence. If it's caught early, it quite frequently can be cured. One of the problems that we see is with women who are caregivers for others, who put off their own care. They find a lump, and instead of getting it looked at, they take care of everything and everybody else first."
After getting women to take responsibility for seeing a doctor early ("It's beyond fear--it's a terror of cancer"), Gole says, the problem is making doctors take their concerns seriously. "I hear the horror stories every day, of doctors who won't check things out. No one is God. Hearing the stories [of women with breast cancer] isn't tough--what's tough is combatting stupidity. You get these women who say they've got lumps, 'but my doctor said we'd wait and watch it.' What do you mean, watch it? What do you want it to do--break into song?"
The next step, for Gole, is to get Congress to sit up and take notice. "We have to make sure they know how we feel." Recent history suggests that there's still a great deal of room for improvement on that front. Gole (along with Sharon Green and Margaret Harte) was one of a group from the Breast Cancer Coalition who travelled to Washington last fall to present letters from constituents to members of Congress. Their goal was to bring in 175,000 letters, one for every new case of breast cancer for the year. They overshot the mark, and instead hauled in an impressive 627,000 missives.
This was supposed to be a major public relations event, and everything was set up for massive media coverage. Unfortunately, the day chosen was October 8, and the world was watching Anita Hill testify against Clarence Thomas. The Bush administration could barely be persuaded to accept the letters; finally, the women were told to haul their boxes to a corner of the old Senate office building, where a giggling male staffer reluctantly took charge of them. "It's a question of not being taken seriously," steams Sharon Green. And, adds, Gole, "we got zippo in terms of publicity."
To Gole, getting more research into the causes and cures of cancer is a prime concern, and she thinks women should become activists toward that end. She thinks it can be done. "We're getting calls from college-age women, asking, 'What can I do on my campus?' We're the generation of the 60s and 70s, a protest group! We're not above marching. But we've got to take steps instead of sitting back and saying, 'It's the government.' Not enough noise is made--it really is the squeaky wheel that gets the grease."
She's also underwhelmed by the FDA and Congress in their debates on the topic of breast implants. "The entire committee [that decided on the moratorium on breast implants] was made up of men. They're going to tell us what to do with our implants--but they continue to sell cigarettes. Something's wrong here."
"If nothing else, we've learned we have to take more control over our medical treatment," says Dolores Barnett. The chief financial officer at Triodyne, Inc., in Niles, Barnett was diagnosed with breast cancer ten years ago. She found the lump herself. "I had a silk blouse on; I was perspiring; and as I pulled the blouse away, I felt the lump." She saw her gynecologist, who, she says, told her, "This is nothing, but have a mammogram."
"The mammogram showed a suspicious something--but I didn't know that," says Barnett, 57. "After seven days, there was no word from my doctor. Finally, I called him and asked him about it; he said, 'Oh, yes, it's right here--I haven't even looked at it.' Then it was, 'Oops! There's something here!' I was livid. I was this doctor's first patient; I went to him for 25 years.
"I went into his office to get my records. It was full of people, just swarming with women. And I announced, 'I have no intention of going to an office where they can't even take time to look at a mammogram. If you trust this man, you're taking your lives in your hands.' It made quite a sensation. It gave me the courage to take my treatment into my own hands."
Barnett had a hard time with her treatment and reconstructive surgeries ("Nobody warned me about it, but it's major stuff"). "I feel very strongly that I don't want my daughter or granddaughter to go through a situation where she can't find proper treatment or information from the medical profession." A member of Y-ME "from the very beginning," Barnett says that "the information I got from Y-ME was far superior to anything I got from any doctor. We've got to learn, all of us, to take control and not get shoved around.
"We have been forced to go into advocacy because of the way we get shoved around by the government. The money given to breast cancer research is miniscule, compared to the money given to AIDS. But lots more people are dying from breast cancer. There's a lot to this business of "it doesn't happen to a man.' If men got breast cancer like women do, you can bet they'd do more research, kiddo."
"I don't think women are any angrier than they ever were; I think there has always been as much anger as dismay associated with breast cancer," says University of Chicago surgical oncologist Monica Morrow, M.D.. "But women are more vocal now, and the activism of other groups--like the AIDS groups--shows that being vocal may have some value to it."
Morrow, who's been in practice since 1983, says that "90-something-percent" of her practice deals with breast diseases; "as a relatively young female, I tend to see a lot of young women in my practice." Has she seen any progress in dealing with breast cancer? "That's not easy to measure. The biggest change is in the options available to women who have breast cancer. Ten years ago, the overwhelming majority of women got mastectomies; breast preservation was just not done. That's changed; now, they try to save as much of the breast as they can. The availability of immediate breast reconstruction came about in the last ten years. These are big changes--positive movements in the treatment of cancer."
Eighty-five percent of the cancers she sees, says Morrow, are in stages one or two. Most women in these early stages can opt for local, relatively confined treatment. "The majority of stage ones and twos can have a lumpectomy, removal of the lymph nodes, and radiation treatment, or a modified radical mastectomy with or without immediate breast reconstruction. About 75 percent of the women I see who are eligible for breast preservation opt for that treatment. About half of those who have radicals have immediate breast reconstruction. I give them all the information, and let them decide."
How does she feel about the FDA's attack on breast implants? "I think it's ludicrous. There is absolutely no scientific evidence whatsoever that they're dangerous--I think it's just an attempt by some politicians to keep themselves in the news."
Katherine Billingham is a psychologist on the faculty of Rush-Presbyterian-St. Luke's, with a practice downtown. In 1978, she started working with patients suffering from chronic pain, which evolved into a practice largely concerned with women with breast cancer. She has worked with over 400 in the last 12 years, primarily in individual therapy. "It's primarily directed at people in unusual circumstances--young women with breast cancer, or women whose treatment is going poorly, or where the disease is progressing and the treatment is not going as it should.
"Anger occurs so frequently that no one bothers to describe it or what causes it. Ninety-five percent [of women] report it--as high a rate as for anxiety. Depression is rare--about 12 percent--because it means they're hopeless, and don't want to live. And most people want to live. But anger is so common that no one has really examined what women are angry about."
Part of that anger and frustration, she says, is with the medical establishment. "There are really three categories of anger. There's anger at the body: she took care of it all her life, and it's doing her wrong. There's anger with societal problems, like job discrimination [which people who've had cancer frequently experience]. And there's a clash with the medical system.
"It's my impression that we've done a disservice to people by promoting medicine as being more capable and thorough and complete than it is. There are false negatives in mammograms. There's an impression that doctors and people in health care can solve everything--that they always have an answer, that there aren't unknowns in science. When questions go unanswered, disillusion or disbelief set in--'They don't want to tell me.' In some ways, we've oversold medicine."
At present, there is the issue of implants and reconstruction, and the confusion and anger that the FDA's charges have brought. Women, says Billingham, have a fear of both mastectomy and reconstruction. And this fear sometimes leads them to put off seeking treatment. "Another area women get upset over is the reactions of their spouses and families. Even with very supportive husbands and friends, once the main treatment ends, and the patient starts to look normal again, they want it to be over, they're tired of it, they treat the patient as normal again. Whereas the patient is still anxious and angry. They need to talk about it more. The families say, "We've been in chaos too long, we want you to be like you were before.' And the woman says, 'I'm not sure I can be normal again. I'm reevaluating everything.'"
Are there significant differences between breast cancer and other kinds of cancer? "Yeah. The difference is that other kinds of cancer are more time-limited--you get the treatment, and in a year or two you usually know whether you're done with it or not. Breast cancer, unfortunately, can occur later. You never have that total safety--'It was a hard thing, but I dealt with it.' You never know if it's coming back.
"Socially, women are the center spoke of a lot of things. Families and a lot of other people depend on women. And this is still primarily a disease treated by men. A woman is being told by a man how should do things. That's OK for some; it's a conflict for others. And you can't presume that a man can know what these things mean to a woman. Something that's not talked about is that this is the loss of a part of the body that women got to know in adolescence. It's important to them. How they feel about it is very private."
What are the major causes of stress in women with breast cancer? "This is not science, but in my clinical experience, the number one cause of anger is getting cancer, losing your hair, having people talk to you in the hospital in disrespectful ways. Number two--number two is insurance. There's the confusion and the burden of paperwork when you're tired and throwing up, the incredible worry that the treatment won't be covered, and when people are put into dilemmas over whether or not they should take out a second mortgage to pay for it."
Once again, there seems to be more than a little gender-related prejudice at work here, says Billingham. "Take testicular cancer. When surgery had to be done on men, there was never a question of whether cosmetic surgery would be covered. But women have had to do battle for cosmetic surgery and implants; it's somehow seen as a battle of vanity versus self-esteem. With other amputations, there is never a question of necessity. And the whole implant issue is a case of men telling us what we can and can't do, in this quasi-paternalistic way."
Billingham says that she has to help women to deal with feelings of adversity and cynicism in dealing with insurance companies. "At a minimum, the paperwork should be streamlined. There's too much confusion. We in health care have a role in that. By the time people come to see me, they're so financially overburdened that we have to negotiate fees. Changes need to be made by health care professionals--they need to reevaluate fees, reevaluate how they determine how those fees are going to be set, all kinds of stuff--and by the insurance carriers. We need to do cost containment, and we need to do it in careful ways."
Notes Billingham, "Three out of four families are going to be affected by cancer, but you wouldn't believe that from the funding. We need more advocacy. Take a drug like tomoxifen, which is turning out to be helpful for breast cancer. Tomoxifen was not originally worked up and researched as a breast cancer drug--it's a fertility drug. It needs more research. We need more research generally. Maybe someone's going down the road trying to find a better carpet cleaner, and finds something helpful. Our funding for basic science needs to be increased across the board. Our funding for science in colleges needs to be increased, to get bright young people interested.
"More and more, people are seeing this as a women's issue. Every woman is at risk."
Richard Thomphsen has had to deal with the repeated illnesses and surgeries and the death of his wife, with the devastation suffered by their two boys over the course of Kim's illness, and with his own ill health, the latter mostly stress-related. And, for the last year, he has also had to deal with his insurance company.
While the company agreed to the extraction of Kim Thomphsen's bone marrow--a harvest which could be put to but one purpose--they informed the Thomphsens on the day before her surgery that they would not pay any of the costs of the bone marrow implant. It was, the Thomphsens were informed, considered "experimental," and was therefore not covered.
"The night before she went in, and we found out the insurance company wouldn't pay, Kim cried, and said maybe she shouldn't do it, that she didn't want to put that kind of financial burden on the family," says Thomphsen, a teacher at Oak Park-River Forest High School. "She was ready to put aside her last chance for life because of money. I told her we'd risk it. But it makes you wonder--how many people die because they are afraid of the legal hassle?"
The company claimed, says Thomphsen, that "Kim was donating bone marrow for someone else. Right. That's like taking blood from a known HIV-positive individual for donation. I sometimes feel that logic is just a word in a dictionary, and doesn't really affect people in the insurance industry."
The other gaping illogicality in the company's case was that they will pay for bone marrow implants when they're treating bone cancer--but not when that bone cancer started out as breast cancer. "Coretta King once said she thought there was more discrimination against her because she was a woman than because she was black, and I believe her. Look at these heart disease studies that used 22,000 people--and none of them were women. Prostate cancer gets attention, because it's a man's disease. But breast cancer affects mostly women. It doesn't get much attention from the quote-unquote medical establishment, because it's a women's disease."
The Thomphsens were denied $142,000 in procedures by their insurance company, a decision they appealed. In early January, the company did an abrupt about-face--and settled. Thomphsen says he believes they did so because another company recently lost a similar case that went to court.
"I suspect insurance companies are leery of bad publicity. But what about all the pain this caused Kim when she was dying? What about all the pain it has caused me all these months? But insurance companies are not looking at human tragedy. Insurance companies are only looking at profit and loss."
Charles Elsner, service manager for Gallagher, Bassett (the administrators for the Thomphsen's health plan), said he could not comment on the Thomphsen case.
"There are special problems for patients with metastastic breast cancer," says Stephanie Williams, MD. "The insurance companies are claiming their treatments are "investigational,' and not paying for them. But most cancer treatment is investigational."
Williams, on the faculty of the University of Chicago since 1987, is a specialist in hematology. Bone marrow transplants are her bailiwick; she's the co-director of the bone marrow transplant program at the U of C. How successful are the transplants?
"For metastasized breast cancer--using the data that's most mature--we show a 15 to 20 percent long-term [success] rate. That's over four years. It's early; there's not enough data--it's going to take five to ten years before we really know. It's a slightly better rate than for standard therapy."
Those who are referred for bone marrow treatment must meet strict criteria regarding their heart and lung status; they must also have normal kidney and liver functions. The median age is 43, although Williams sees a range of 27 to 62. "We primarily see women with premenopausal breast cancer. It's a much more aggressive kind of cancer. It affects so many women--and we want to be able to treat it as aggressively as we can." The cost averages $150,000 and requires a four-week stay in hospital.
"I see some progress being made with the insurance companies; I see an effort by the companies to work through the problems [with paying for bone marrow transplants]. And we have been able, through the legal system, to get them to change their minds. I think the atmosphere is changing--but it would help to have lobbying."
"There's a special need [for cancer support] in the lesbian community, in part because lesbians tend not to go to the doctor as often," says Angela Van Patten, executive director of Gray Pride, and one of the founders of the Lesbian Community Cancer Project. "We don't need birth control--and we don't tend to take very good care of ourselves."
Lesbians, she says, are now beginning to organize themselves along the lines of the various AIDS support groups. "Many of the women in the movement came to it out of the AIDS movement. The experience has empowered them, politicized them. For a long time, it's been 'AIDS is a tragedy; cancer is something you don't talk about.' Well, now we're talking about it. The AIDS epidemic has taught us to politicize health issues. Because of that, we are aware of the fact that if you need people to tend to your needs, you have to make noise."
Why a separate support group? "If you have a life-threatening illness, you don't want to deal with other people's culture, other people's homophobia. We're not really interested in hearing their husbands' reactions to their surgery. Suppose someone is going to an Al-Anon meeting, and he happens to be a man. Well, most members of Al-Anon are women--does he want to sit and listen to them talking about what rats their husbands are? We want to be comfortable, and talk about the things that matter to us. We don't want to deal with reactions [to our orientation]. However, we help any woman, straight or gay, who needs it and is comfortable with us," says Van Patten, whose lover suffers from colon cancer that metastasized to her liver; the disease is now in remission.
"There's not a family structure in the lesbian community, so we build communities, we build families within our circle. We provide the kind of service your daughter might provide--drive you to the grocery store, for example, do your shopping, take care of your pet.
"A few years ago, there was a saying--'God is coming, and is she pissed,' I'm starting to hear that again."
Nancy Lanoue was diagnosed with breast cancer on her 35th birthday, in 1987. After aggressive treatment, she has been cancer-free for more than four-and-a-half years. Her partner was not so lucky: she died two years ago of pancreatic cancer.
Lanoue teaches martial arts and self-defense to women and children at Thousand Waves, her "beautiful spa facility" at Belmont and Racine. She thinks it's time lesbians "concentrated on the health needs of our own community, and not put all our energy and effort into AIDS caregiving, as important as it is. The fact is, there is much more for AIDS patients than for women with breast cancer."
There are those who resent this stance. "It's creating some conflict in the so-called gay-lesbian community, because some women are pulling back from AIDS, and focussing on women's problems. We're trying to heal our own community--which I think is healthy."
The Lesbian Cancer Community Project, founded a little over a year ago, is still tiny, but is providing services to as many women as possible. Modelled on the AIDS services, the LCCP has trained volunteers to act as buddies to women with cancer; they answer questions women don't feel they can ask their doctors, and act as a sounding board. They have a hot line (763-2951) and a support group.
"Our advocacy caucus is in its budding stages. Our goal's to channel some of that ACT UP kind of energy. We want to be aware of the bills in Congress that might influence us; we're trying to set up a resource library." A Valentine's Day fundraiser raised about $25,000--and received significant support, both financial and in gifts in kind, from the gay community--which the Lesbian Community Cancer Project plans to pump into its support programs.
Lanoue personally opposes breast implants, and doesn't see them as something it's appropriate for the LCCP to take a stand on. She chose not to have an implant or reconstructive surgery herself. "It was another major surgery, with an incredible recovery time. They said, 'Nobody need ever know you had breast cancer.' Well, for me, that pushed the other way--'Why would I want to hide it, if this will encourage other women to get checkups?' It's pretty obvious in the locker room--and I think it's really useful for people to see that a young, healthy person with a healthy lifestyle can still get cancer."
"J.B." is a lesbian whose closest friend died of breast cancer; she asked for anonymity on the grounds that she'd be "crucified" in the gay-lesbian community for voicing her views--views which she maintains are widely held, if seldom expressed. "Lesbian women have been there for gay men since the whole AIDS thing began--but they aren't there for us with breast cancer.
"Let's face it: AIDS is lifestyle-related. If gay men were smart, AIDS would be practically over [in the gay community]. But men keep right on doing what they want to, so they get AIDS. If the druggies were smart they wouldn't get AIDS. I'm real sorry for them, but they don't have to get it. We know how to avoid AIDS. We don't know how to avoid breast cancer.
"Meanwhile, the government is throwing all this money at AIDS research. There's really too much money to fund the number of serious researchers. And there's nothing much for breast cancer. Maybe if we knew what causes breast cancer, or if AIDS wasn't so easy to avoid, I wouldn't be so bitter. But I am bitter. The men scream the loudest, so they get the funding. Most Congresspersons are male, most doctors are male, and they're only interested in male problems. It's just not right."
"Kate" is a registered nurse who has worked with cancer patients. She has a low opinion of most doctors and their treatment of women. "Women are expendable to the medical establishment. We just are. Take cardiac drugs, and the way they treat cardiac disease. All the drugs are tested on men, not on women. Then they treat men and women alike--and men and women are different. We do react differently to some drugs--and they're finally figuring that out with cardiac treatment.
"If it doesn't affect the people who are doing research and development--the people who are making the decisions about money--it doesn't get funded. The people making those decisions are guys, and guys don't get breast cancer. Same with Congress. They don't care. The doctors lop off a woman's breast, and figure she's cured. Then they're surprised when the cancer metastasizes a few years later.
"Now they've found a beneficial time of the month to do breast cancer surgery--what took 'em so long? Hello? It's just that way down the line. I'm still amazed by all the odd things about my body after pregnancy that my doctor didn't tell me about. I call him about a skin problem I'm having. 'You've got all those hormones raging through your body--what did you expect? Of course you've got growths on your skin.' Oh? I thought I had skin cancer. Hello?"
Kate cites the problem of "burnouts" among medical professionals who deal with these problems on a daily basis. "The doctors get very callous; they're not really listening anymore. They don't talk to their patients. Some doctors are pretty good, but most fall into the callous category."
There's also, she maintains, a difference in the ways that men and women deal with things. "When I see a problem, I think I should address it and confront it. Not everybody feels that way, especially men." One of her patients was the wife of a doctor, who had cancer and chemotherapy. "She kept complaining of pains--and she was written off as a crybaby. She was crying because of a pain in her back; it turns out it's because the cancer had metastasized to her bone. My mother-in-law complained about aches and pains. The doctor told her it couldn't be cancer--and of course it was.
"For the most part, men handle aches and pains quite differently than women. They're more stoic. Women are more likely to express their feelings--'Hey, this isn't normal, let's find out about it,' whereas men say, 'It'll probably go away.' So women get labelled as complainers--and that's a problem if a doctor thinks that's how most women are."
Kate doesn't offer much hope for the future, either. "You're just not going to see much of a change until there are more women in the field--and it's going to take a long time. It's the same thing with government. Until women are holding the purse strings, there's not going to be much improvement."
All right, I thought. I've never had a baseline mammogram, and it's probably time I did.
I know quite a few women who avoid mammograms on the grounds that they're physically painful. I found them to be much less objectionable, for general nastiness, than, say, a Pap smear. My mammogram was a great deal faster and easier than the average trip to the dentist. In fact, by far the worst part of the entire process was sitting in the Radiology waiting room at West Suburban Hospital, with commercial daytime television--pitched at the hard of hearing--blaring just a few feet away.
The procedure is simple. Undress from the waist up, put on an enormous, one-size-fits-Luciano-Pavarotti-and-friends hospital gown. Follow the tech into the room with the big machine. Unveil one breast at a time--preserving the concept of modesty is very important, to the techs, at least--flopping it onto the plate, where it can be squished with another plate, and x-rayed. Repeat the process with the other breast. Hang out for ten minutes in the very pleasant little mammography waiting room, reading the book you thoughtfully brought with you, a pamphlet on the procedure, or a stale magazine; the tech will either release you, or make you go through it again.
I had my mammogram done just before Thanksgiving, and between the holiday and a death in the family I had almost forgotten about it. When I called my doctor for the results, two weeks later, he hadn't even been informed that I'd had it done. When West Sub finally found my records, though, I got an urgent call to return for another photo shoot. This time I didn't linger with the game show fans, but was ushered quickly into the mammography department.
They'd found something, calcium deposits. It seems that there are two kinds of calcium deposits--one associated with cancer, the other not. After a few tense days, we learned that I was lucky: the calcium was okay.
My doctor says it still bears watching, that he's going to send me in more often for mammograms than he might normally for a woman of my age. I don't mind. I'm motivated.
There's more to breast cancer than looks. It can affect one's livelihood as well, both directly and indirectly. Kim Thomphsen endured the latter, when she was passed over for a promotion based on her health records. Soprano Elsa Charlston is experiencing the former.
"There's no research, no statistics on the effects [of cancer and chemotherapy] on singing," says Charlston. "I'm having a very stiff time, a hard time getting going. I've lost my top notes--the voice is there, but it's stiff. It's a whole different instrument. I'm having to learn to use it again. The easy highs that have always been there forever and ever and ever are not there. But I'm alive."
Charlston is one of Chicago's best singer-musicians, a talented voice teacher, and the wife of composer Ralph Shapey. She was diagnosed with stage one breast cancer (the tiny lump was found in a mammogram) at the end of November, 1990; had a lumpectomy two weeks later; and sang at her husband's concerts all the time she was having her radiation treatments. She put off her chemotherapy until the concerts were done.
Charlston suspects that "a lot of this is environmental. I live in Hyde Park, and the steel mills are not so far away. I've never smoked, and this does not run in my family at all; it seems very strange."
At age 59, and possessed of a good instrument and technique, "I've been singing and practicing every day. I plan to continue--I just have to be judicious about what I do. I won't make an ass of myself, but I want to give my voice a chance to come back. I know I can do it, but it's a lot more work than it used to be. I know I'm really very lucky--it could have been infinitely worse--but it's still a year out of my life, and that's a lot."
"When I was diagnosed, something like one out of 14 women got breast cancer," says Karen Wicklund. "Now it's one in nine."
In October of 1982, Wicklund was just 25, a rising young soprano. She found the lump herself, and went directly from her biopsy to the library, to read up on breast cancer, "so I knew all the right questions to ask."
Wicklund had a modified radical mastectomy, taking the breast and the lymph nodes under her arm. "But I didn't have radiation," says the singer, "because they couldn't guarantee it wouldn't shrink my lung capacity."
Nodular changes in her other breast led to a simple mastectomy in 1983, and reconstruction that August with silicone implants. Three years later she had nipples grafted on, using skin grafts from her vaginal labia and upper inner thigh. "That was awful," she recalls with an audible shudder, "very painful--the hardest of all my operations."
Wicklund had four operations in all; the reconstruction "enabled me to wear all kinds of clothing, from very small bikinis to concert gowns, which can be very low cut." Although she never had to have chemotherapy or radiation treatment, "you thought about it every day--you felt like, 'Is this going to come back?' When you hit the five-year mark, they say, 'That's great--you're doing very well.' At ten years, you're considered cured."
Wicklund credits Y-ME for a lot of support and information. She worked for them as a volunteer and then as a paid staffer for a year. Today, she's in a doctoral program at Northwestern University, "looking at the physical aspects of singing--at what makes a healthy singer.
"People take care of their cars. They pay the rent every month. And people should check their breasts every month. Nine out of ten lumps are found by women, not doctors."
Wicklund, whose grandmother had breast cancer, and whose mother was diagnosed with it in 1986, says that she and her mother were brought closer by their shared disability. She also says that her husband was "wonderful throughout all of it--very supportive. A lot of women fear they're not going to be sexually attractive after they've had breast cancer. It might be harder for single women--but most men are very supportive. Most of our sensuality comes from within ourselves--and it really did help me to have breasts again. Breasts are as much a part of our bodies as our arms or our legs.
"People have to take time and really think about [the possibility of breast cancer], because being complacent can really be deadly. People think, "It can't happen to me.' But one out of nine is a lot of women."
Dr. David Kessler--the U.S. Surgeon General, who has made such a media campaign out of breast implants--ordering a moratorium, engaging in speculation not supported by any scientific evidence, and generally behaving like someone more interested in generating headlines than in thoughtfully weighing the evidence--and his spokespeople failed to return a total of eight calls, seeking elucidation on his reasoning. A spokeswoman finally called back on February 26--to say that Kessler wouldn't be granting any interviews "for the next few months."
The FDA frequently seems to be more interested in throwing up roadblocks to new treatments than in helping the ailing. It has kept one drug, THA, shown in tests to help victims of Alzheimer's Disease to regain their minds, off the market--to the anguish of their families when the sufferers were plunged back into their mental darkness at the end of the drug trials. The FDA has consistently prevented people with AIDS from trying experimental treatments that might carry some hope; better to die on schedule, but without the threat of possible side effects, the bureaucrats seem to reason. And now the paternalistic FDA threatens the future of breast implants, based primarily (as far as anyone can ascertain, in the face of Kessler's curious silence) on purely anecdotal evidence regarding a possible correlation between leaking implants and immunological disease.
I wanted to ask Kessler why women couldn't simply be given all the evidence, as they are for birth control pills, and then be permitted to make up their own minds. Unfortunately, no one at the FDA had any answers to offer.
Says Sharon Green of Y-ME, "We're not happy with Kessler and the FDA. The moratorium was the worst thing he could have done; they had the opportunity to get some answers, and instead they've just scared people for no reason. He hasn't shown us any of his data.
"We're getting hundreds of calls from women on this. Women are angry, women want their implants out, women are depressed. Women are scared, and that makes it hard to discriminate between real problems and perceived problems. No one is saying we don't need more information--but no one is documenting the cases of those women who have problems with their implants.
"Kessler says women 'don't need' breast implants. Well, most women who made that decision didn't make it lightly. Adults have the right to choose what to do with their bodies."
Says Margaret Harte, "Until we start making a lot more noise, nothing is going to be done." Something should have been done long ago. It's too late for Kim Schaubel Thomphsen and hundreds of thousands of other women. Until breast cancer gets the priority it deserves, hundreds of thousands more will suffer and die.
Art accompanying story in printed newspaper (not available in this archive): photos/Yael Routtenberg.