I have no scepter, but I have a pen. — Voltaire
I sat in the physical therapist’s office waiting for treatment. It was September 1995. Women would enter the softly lit room, sit on one of several sofas and remove bandages from their huge edematous arms. I stared as a petite woman in her 60s unwrapped the wide beige bandage on her upper arm, the narrow one on her forearm, then the small white finger bandages, letting them fall to the floor. She gathered them, rolled them neatly, set them on her lap. Her unbandaged limb lay heavy and lifeless by her side.
I imagined I had entered some ancient temple for a strange religious ritual, the atmosphere was solemn, dignified. Yet this space was punctuated by women’s voices, swelling with the joy of reduced measurement. “Look how much this has gone down! It’s much better, see?”
The women unwrapped their arms and chatted on, as if they were rolling dough or folding laundry. But what I saw was horrifying: Their limbs were useless, as good as dead, an additional sacrifice to the cancer. I wanted to flee. Instead I grabbed my own left arm and felt it above the elbow. It burned, and was soft and fleshy. It wasn’t like my right arm, which I now felt, firm, strong, muscular. How could they sit there pretending nothing was wrong?
A middle-aged woman in a jogging suit sat down beside me, and began unbandaging her arm, three times the size of her “good” one. The hard fibrous tissue had formed large bulges under her skin.
“Feel this,” she said, turning to me and rubbing a lump, “How soft it is. Two months ago it was hard as a rock.” I felt it, hard as a rock. “Isn’t it soft?”
I wanted to scream, “No, it’s horrible. You had breast cancer, not arm cancer. How could this have happened to you!” I bolted to my feet, and losing my balance, almost fell.
“Are you all right?” The helpful assistant named Penny stood up from behind the desk. Lying for the second time, I asked, “Please, where is the restroom?”
I made my way unsteadily down the hall, locked the door behind me, and slipped off my blouse. I looked in the mirror at the familiar mastectomy scars, and the reconstructed breasts, which actually always pleased me. I held out my arms, examined the left one. I pulled on it, feeling the fluid that filled it. My God, what’s happened to me? Is it getting bigger? Is there more in my back? Is it in my fingers? How could this have happened?
Two weeks earlier, in late August, I had been working as a fitness trainer, in the gym on Elm Street. It had been a really hot summer. I’d been lifting more weight with my left arm, the side of the cancer and lymph node dissection, because a surgery involving my right breast implant was causing me pain. My left arm had been throbbing for a month, as it had for the last two summers. In previous episodes, the pain had stopped when the weather cooled. I assumed that would happen again. I elevated my arm at night, as instructed, but went on training as usual.
One particular day, I began work early, at 6 a.m. It was a long day. Just after 7 p.m., I was spotting my last client on his final repetition of a 135-pound incline barbell chest press. As we went to rack it, he let the barbell drop, and for a few seconds I sustained the weight. Afterwards my arm hurt, and the next morning it was swollen and burning. I called my oncologist, a crusty old-timer I always liked. Her nonchalance about my early-stage breast cancer had helped keep me from obsessing about it.
“I think I have lymphedema.”
“What did you do?”
“Well, I lifted weights.”
My doctor’s tone shot back like a disgruntled mother to a recalcitrant daughter. “What were you doing lifting weights?”
“I do it for a living. It’s my job.”
“Didn’t anyone tell you never to lift weights?”
“Not exactly.”
“Well, you’ll have to stop.”
–
Generally, breast cancer surgery entails either a lumpectomy, which removes the tumor but preserves the breast, or a mastectomy, which removes the breast. In addition, most women undergo a lymph node, or axillary, dissection, in which the surgeon removes from a woman’s armpit tissue consisting of fat and approximately 10 to 20 lymph nodes. The nodes are examined by a pathologist. If cancer cells are present, doctors assume the cancer may have spread to other parts of the body, and will prescribe additional treatment, such as chemotherapy or hormone therapy.
A “node-positive” diagnosis means cancer cells were present; “node- negative” means no cancer cells were found. However, 30 percent of node-positive patients have no cancer beyond the lymph nodes, and they will survive. And 20 to 30 percent of node-negative patients either have cancer cells elsewhere in the body, or their cancer was undetected in the lymph node dissection, and they will eventually die of metastatic breast cancer. The lymph node dissection isn’t a foolproof test of whether breast cancer has spread, and doctors continue to look for a more accurate way to stage the disease.
Breast cancer is staged, or categorized, from the least to the most aggressive, into Stages I, II, III and IV. A particular breast cancer is staged according to the size of the tumor, whether any distant metastasis can be detected-that is, whether the cancer has invaded other organs- and by the number of cancer-containing lymph nodes in the node dissection. Once these are determined, a woman is given a prognosis of her survival chances.
Unfortunately, complications can arise from a lymph node dissection, including loss of sensation under the arm, deformity of the armpit, loss of shoulder range-of-motion and injury to nerves that control the back and arm muscles. However, perhaps the most devastating complication to the patient is lymphedema, a swelling of the arm caused by the inability of the remaining lymph nodes to process fluids.
–
I stood examining my arm in the therapist’s restroom, and my mind raced back to the pre-operative appointment with my surgeon. Our conversation, as I recall, had gone like this:
What are the risks of this surgery?
You have a 3 percent chance of developing lymphedema from the lymph node dissection.
That sounds like a pretty small number. I’ll take it if it’ll save my life.
Four weeks after my operation, my surgeon informed me that he instructs all his breast cancer patients never to lift weights.
But-I’m a fitness trainer, I protested. I lift 45-pound weight plates all day.
Well, then, not you, of course.
So those rules weren’t made for me, I thought. Lymphedema is for inactive older women. I have muscles. I’m stronger than the others. I won’t get lymphedema.
My breast cancer battle had begun on Dec. 1, 1989. My first mammogram revealed a cluster of tiny white dots called microcalcifications, signaling a possible tumor. I met with the well-known Chicago breast surgeon recommended by a relative, and he informed me a biopsy was necessary.
Two weeks later, I walked for the first time into a chilly hospital operating room. I climbed onto the operating table and lay down, and as the surgeon draped blue cloths over my upper torso, he said, “We do this so it looks less like a butcher shop in here.” I was petrified.
He injected a local anesthetic into my breast, then began cutting. I wasn’t given a sedative or a muscle relaxer, so I kept shaking under the blue sheets. I began making small frightened noises. The doctor made jokes.
“Relax,” he said. “You sound like you’re having a baby-don’t you have a baby on this table.” He’s trying to calm me, I thought. He held up the scissors and told me they were called breast scissors, then he joked that the hospital didn’t keep them sharp enough.
When he dropped them on the floor he said, “You see now why we call this the practice of medicine. We practice until we get it right.”
I wondered if he hated me, or if that was just how surgeons talked. I desperately wanted to be a good patient, his best patient. But it felt as if he were gouging great holes in my breast, and I couldn’t stop quaking.
When he handed a nurse a container with my breast tissue in it, I saw it. It was the size of a cotton ball, and grayish and dull. Is that cancer? I wondered. Do I have cancer? The surgeon had his resident finish the stitching. As he left he said, “Call me tomorrow so I can tell you you don’t have cancer.”
The surgeon returned my call at 4:45 p.m. the next day, Friday, and told me I had cancer. He said there was something else suspicious about the results, but he had to see the slides himself before he could say more. He told me not to panic, to see him Monday afternoon. I asked him what my prognosis was. He said, “Fine.”
I waited out that long weekend in shock and confusion. I had cancer, but didn’t know how advanced it was, or what “fine” meant in terms of a prognosis. I planned my funeral.
On Monday a close friend and I listened as the surgeon told us the margins of my biopsy were “dirty,” which meant there was invasive cancer on the edges of the tissue he removed. He told me that even though my tumor was small, I must have a mastectomy, because, he explained, the cancer I had, a type of infiltrating ductal carcinoma, didn’t respond well to lumpectomy and radiation.
I desperately wanted the rest of the cancer out of my body. I blurted out, “Can’t you just take both breasts?”
He said that wouldn’t be unreasonable, since my family history indicated that I was at an increased risk of developing cancer in my other breast, and scheduled me for a double mastectomy on Dec. 26. Then he sent me to his plastic surgeon to talk about breast reconstruction.
The plastic surgeon took photographs of my breasts and showed me pictures of women whose reconstructions he had done. I felt relieved. I wouldn’t have to live with a sunken chest like my grandmother did, after her radical mastectomy. I scheduled immediate breast reconstruction following the mastectomies.
That evening I told a friend in nursing my extraordinary plans. She politely suggested I seek a second opinion. I showed my reports to a breast surgeon and a radiation oncologist, each at a different hospital, both women, who urged me to reconsider my decision. They thought I ought to have more tissue removed-a lumpectomy-and try to get to what they called “clean,” or cancer-free, margins. They thought amputation of both breasts was overkill. The radiation oncologist assured me my tumor measured a centimeter, about the size of a pea, and that most of it had been removed in the biopsy. They both said there was probably no reason I couldn’t keep my breasts if I wished.
But the original surgeon had been adamant about the need for a something he didn’t? Were these women overly concerned about my keeping my breasts? Would I save my breasts and end up dead? Unsure of everything, I scheduled the lumpectomy with the woman breast surgeon, also on Dec. 26. I wondered how I would decide which surgery I would undergo.
I phoned my biopsy surgeon and told him the others had said I might save my breasts. He said if I wanted him to do a lumpectomy he would, but that it would only put more money in his pocket because he would have to go back in to do a mastectomy later anyway. He said whenever he’d tried to get clean margins with this type of cancer he always ended up having to do a mastectomy. And then he said this about the remainder of the cancer in my breast, caught on my first mammogram: “There’s tons of it. It’s going to be everywhere.” Now I was terrified. But I quickly shut that feeling out.
Deciding to seek a fourth opinion, I was fortunate to find a breast center at one of Chicago’s teaching hospitals, where a team of physicians examined my reports. A surgeon there said either mastectomy or lumpectomy would be reasonable, and he would only slightly nudge me toward a mastectomy because of some studies linking my type of cancer to a higher rate of local recurrence. But he said the decision was ultimately mine. I liked his calm and gentle manner, and the fact I had a part in deciding my care. I agreed to one mastectomy, and made an appointment with his reconstructive (plastic) surgeon.
January, 1990: When I awakened from the mastectomy and reconstruction, I felt like I had been attacked by a pit bull. Then, looking at my chest, I saw that my plastic surgeon had dressed me in a stretchy white lace front-closure bra. I was confused. I was in a regulation backless cotton hospital gown, IV tubes were sticking out of my veins, I had a catheter in my urethra, and large drains from the mastectomy wound grew out from under my arm. I didn’t feel sexy, or even very pretty. Yet my remaining breast and the small new one without a nipple were encased in a fancy bra.Why did he put me in this lace bra, I wondered. Is it because I’m so pathetic, the cancer victim? Was the plastic surgeon implying my femininity is defined by my lost breast, by lace bras, by silicone implants? And when he sent me flowers, I was doubly confused. Did he think I was going to die? Did he send flowers to his breast enlargement patients? Did he put them in lace bras?
Overwhelmed with the cancer and managing the pain, I didn’t spend much time pondering the bra and flowers. But I do remember that every morning, when the troop of six residents came in to examine the wound, the juxtaposition of the lace bra and the regulation hospital gown made me feel like somebody’s idea of a cruel practical joke.
Ultimately, I forgave my plastic surgeon the bra and flowers. But when he checked the drains from my incision, he told me not to move my arm, and since I was determined to be his best patient, I obeyed. I didn’t move my arm for my entire four-day hospital stay. Consequently, when I was sent home, my arm was bent at a 90-degree angle, and my shoulder range-of-motion was permanently impaired.
Two years later I opted for a prophylactic mastectomy of my right breast, because I was so young at the time I was diagnosed, and had such a strong family history of breast cancer. My grandmother was diagnosed at 69; I was 39. She had four granddaughters, and by that time three of us had been diagnosed. And I felt unbalanced, with one pectoral muscle covering an implant and the other flat against my chest. I didn’t regret my decisions. There were no complications with the second mastectomy and no need to remove lymph nodes. It had been more than five years since my diagnosis, and I had resurrected my life.
Until now, I thought, as I stared at my body in the restroom mirror. When I had the first mastectomy, the pathologist had found no cancer cells in the lymph nodes. My oncologist had told me I had a Stage I cancer and had a very good prognosis. She offered me a variety of choices: no additional treatment, or either low- or standard-dose chemotherapy. I chose a regimen of low-dose chemotherapy. But 18 negative lymph nodes had been removed from my armpit. At the time it was wonderful news. Eighteen nodes without cancer. How fortunate. Now, I thought, I could use those nodes. Have they thrown them away? Could someone put them back?
–
I continued examining my arm in the restroom mirror. I always loved challenging myself physically. It made me feel in control of my body, which helped me to feel in control of my life. I maintained a strong and lean physique, through weight-lifting and aerobic conditioning. It was my way of coping in a world I sometimes suspected of trying to diminish me.
As a girl growing up in the 1950s, I was puzzled by that era’s “lessons.” To become powerful, a woman must attach herself to a man with power, or her life would be trivial and inauthentic. I was told never to question the opinion of those in power. To maintain her status and keep her power a woman must be weak, helpless and frail, or at least behave as if she were. I couldn’t buy into that philosophy, though. All I ever wanted was some of my own power
So I got strong. I did chest presses and biceps curls and pull-ups. I did aerobics and ran, performed thousands of abdominal crunches and leg lifts. I turned my strength into a career. I had power.
So when a surgeon made crude remarks during a biopsy, I didn’t ultimately care. As long as he got the cancer out, I could tolerate a few stupid remarks. And perhaps he did frighten me into having a mastectomy. But that was all right, too. I didn’t need my breast in order to function. I could work off anger and hurt with an hour on the treadmill and 40 minutes of weights. A callous surgeon couldn’t hurt me. I had my strength.
An insensitive doctor might diminish me in his arena, but I could always retreat to the weight room. I could lie on a weight bench, take a 45-pound barbell and do a chest press with it 15 times without effort. I had power there. I could be me there.
But not any longer. I put my fingers around my upper arm and felt the swelling, certain if I didn’t start bandaging soon my arm would grow, minute by minute, until it took a wheelbarrow to carry it. Please, I thought, somebody let me have my arm back. Needing the camaraderie of the women wrapped like mummies to their shoulders, I hurried back to the waiting room. Slumping into the soft sofa in a “Please, help me” pose, I let the warmth in the room envelop me. I was a patient again, after five years of freedom from cancer.
The therapist entered, examined my arm, gave me two beige bandages, and instruction on how to wrap. Starting at my palm, I fumbled, and the bandage unraveled across the floor. Looking to see whether anyone had noticed, I fought back tears and began again. I don’t want to know how to do this, I protested silently. I don’t understand. The cancer was in my breast, and now I’m bandaging my arm.
When I finished, the therapist’s assistant took me to the exercise room, and showed me some stretches and light weight-lifting exercises. Alone in the room performing them, I stared at my heavily wrapped arm in the mirror. I looked weak and hurt-diminished. Afterwards, I was directed to a treatment room, where the therapist removed the bandages. She carefully measured the girth of both arms, then began a manual lymph drainage, a gentle skin massage that helps remove fluid from the limb.
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Lymph fluid, clear and colorless, bathes the tissues of the body. Lymph fluid carries cellular waste products through channels called lymph vessels, to the lymph nodes. In the nodes, the lymph fluid is cleansed and detoxified of bacteria, viruses and dead cells, then delivered back to the bloodstream to be eliminated.
Lymphedema is a chronic swelling, usually of an arm or a leg. Anytime a surgeon removes lymph nodes during certain cancer surgeries, patients are at risk for developing it, immediately or even many years after surgery. The fewer remaining nodes and the vessels scarred by surgery can’t adequately process the lymph fluid, so it collects and causes the arm or leg to swell, like leaves collecting over a drain prevent water flow. Lymphedema has no cure, and can be far more physically disfiguring than cancer surgery.
A woman has between 30 and 60 lymph nodes in her armpit, and removing some during a lymph node dissection puts her at risk for developing lymphedema. Doctors know some strain causes the first episode of lymphedema, either the initial surgical assault, or some later strain on the compromised lymph system. For this reason, breast cancer patients are warned to protect their arms from cuts, burns, heavy lifting, trauma of any kind. Although mild cases sometimes resolve themselves, it is generally thought that once lymphedema develops, it cannot be cured, and can easily worsen. If left untreated, lymphedema can cause massive swelling, limitation in motion, repeated infections, skin thickening, lymph leakage through the skin, even loss of limb. The arm may become non-functional, and in about 10 percent of cases, the condition can develop into a lymphatic cancer, which can be fatal.
The general consensus is that most breast cancer patients will not develop lymphedema, although there are variable statistics about how many do. Dr. Susan Love, director of the Revlon/UCLA Breast Center and author of “Dr. Susan Love’s Breast Book,” says 10 percent of mastectomy patients will develop lymphedema, although she states that number is probably higher. An oncology nurse at a Chicago teaching hospital says doctors there assume 30 percent of their breast cancer patients will be diagnosed with it. And Dr. Steven Passik, writing for the National Lymphedema Network, states, “The number of women treated for early breast cancer who will go on to develop lymphedema of the upper extremity is not known, but widely variable estimates range from 7 percent to 62 percent.”
Not many physicians in the United States specialize in lymphology and related disorders. Yet some therapists estimate that there are as many as 2 million cases of medically caused lymphedema in this country, many the result of breast cancer treatment (others from gynecological and prostate cancers and melanoma). Although no cure for lymphedema exists, it can be managed with bandaging, exercise, manual lymph drainage and skin care.
Among physical therapists who treat the condition, some believe patients would have a better chance of living free of lymphedema if the post-surgical healing process were more carefully monitored. They believe that with proper physical therapy, including exercises, stretching and manual lymph massage, less scar tissue would form on the remaining nodes. These nodes would then be better able to function.
Darek Zurawski, a Northbrook lymph massage therapist certified in Combined Decongestive Therapy by the Dr. (Emil) Vodder School in Tirol, Austria, believes that with early intervention, lymphedema may be prevented from developing, because manual lymphatic massage has been shown to establish collateral pathways for the lymph to drain. He says in many European countries lymph massages are performed in hospitals a few weeks following breast cancer surgery. But even if lymphedema develops years after surgery, the fluid can be removed from the limb using the same technique, developed by Dr. Vodder.
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After the manual lymph drainage, I was instructed to rewrap my arm, wear the bandages to bed and return to the clinic the following morning. I had traveled from Chicago to Philadelphia, because I had heard this was the best place to be treated for lymphedema. At the time I knew of no treatment centers in Chicago.
It was 75 degrees in Philadelphia that evening, but I wore a sweater to cover my bandages. Looking for a place to dine, I passed a Chinese restaurant, then several coffee houses. Turning a corner, I came to a popular new dining spot I had heard about. As I stood perspiring in the late summer heat, the women inside looked cool in sleeveless summer dresses, and every gesture they made seemed graceful. At the bar a woman suit. I could only imagine their banter. I felt my edematous arm, and wondered if I would ever again wear even a short-sleeved summer dress. I walked back to my hotel.
Sitting on the bed, I watched people working late in the office building across the street. They pushed paper, but I lifted iron. I took pride in being a modern women who had chosen a different path. Sitting in the dark with my knees cradling my chin, I remembered a conscious decision I had made many years earlier, always to link two words in my mind: feminine and strong. I held out my left arm and realized what that decision had cost me. I sank under the covers and forced myself not to think.
Suddenly I was in a white office, naked from the waist up, legs dangling over an examining table. A man in a white coat entered and began bandaging my fingers. When he finished, I couldn’t move them. But I thought I ought not to say anything. He must know what he was doing. He wrapped my arm, until I couldn’t bend my elbow, and I almost said, “Isn’t this too much? But he was the doctor, after all. He bound my arms to my torso, and the bandage flattened my breasts against my body. When he brought the bandage to my neck, I pulled away.
“Be still,” he said, and I allowed him to go on. He continued wrapping . . . my head and eyes, until I felt the bandage cover my nose. As he was about to wrap my mouth, I spoke. “I can’t move,” I said. “Please, stop.”
“This is the way we do things now,” he replied, and pulled the bandage across my mouth.
I sat up in bed, panting from the nightmare, felt my face, breasts, arms. I rushed to the bathroom and vomited, then stood queasy before the mirror. I tore off the bandages and threw them on the floor, screaming, “No, no, no! You can’t take my arm! I won’t let you take my arm!” I fell to my knees and wept, then curled up with my cheek to the floor and let the granite tile cool my burning limb. I felt as if I were dying, body part by body part.
I woke to the phone ringing-my wake-up call. I pushed myself up from the floor with my bad arm, felt it throb. Barely looking at it, I took a shower. I rewrapped my arm clinically, without emotion, threw on a big sweatshirt and walked to the therapist’s office.
I sat, quiet and complacent, as a beautiful young Asian woman entered, wearing bicycle shorts and a T-shirt. Her husband accompanied her, watching anxiously as she unwrapped her arm, swollen from her shoulder to her fingers.
You can’t be over 30, I thought. I bet you haven’t had children yet. How are you going to pick up your children? I wonder how many lymph nodes they took from you.
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Doctors divide the lymph nodes distributed throughout the armpit into three levels: I, II and III. Today, the standard of care is for most breast cancer patients to receive a Level II dissection, in which both Level I and II nodes are removed. A Level II dissection can remove over half the lymph nodes in a woman’s armpit, and generally, the deeper the level of the lymph node dissection, the greater a woman’s risk of developing lymphedema. The skills of the surgeon also play a part. One physician said that if a surgeon is too vigorous in his dissection, he will interrupt the flow of the lymph fluid from the arm.
If 10 to 11 negative lymph nodes are removed from a woman’s armpit, there is an excellent chance that the remaining nodes will also be negative. In the American Cancer Society journal CA (Sept.-Oct., 1995), Dr. Michael P. Moore and Dr. David W. Kinne write that removing additional nodes increases this predictive value, forming the basis for the recommendation that Level I and II nodes be removed. But surgeons disagree about the necessary level of dissection. Dr. R.P. Robinson Baker, author of a chapter in the textbook “Current Surgical Therapy” (1992 edition), states, “Although most authorities agree that a lymph node dissection is indicated in patients with (early stage) breast cancer, the extent of the lymph node dissection is controversial.” Because of this, surgeons remove different levels and numbers of lymph nodes. One abstract states, “. . .some surgeons only sample the axillary nodes, while others undertake complete three-level dissection.”
One surgeon said that a Level I dissection was another way of doing it, but he considered a proper dissection Levels I and II.
Before mammography was used extensively, up to 40 percent of breast tumors had spread to the lymph nodes at the time of the surgery. Yet last year at Rush-Presbyterian-St. Luke’s Medical Center, 70 percent of all breast cancer patients were node negative. And the typical tumor found on mammography today is smaller than one centimeter. These early-stage breast cancer patients have an 80 to 95 percent chance their nodes will be negative.
Some of these patients, therefore, are questioning the necessity of the axillary dissection, since they have such a good chance the cancer won’t be in the lymph nodes. Women also fear the potential complications of the dissection, including lymphedema. And some question its value in regard to a cure, because many will be receiving chemotherapy, which they reason ought to destroy any stray cancer cells.
Is the lymph node dissection part of the treatment for cancer? Does it have a role in curing cancer? This is also a controversial issue. One Chicago surgeon, who asked not to be named, said, “The dissection itself doesn’t impact on survival.” And Dr. Love writes, ” . . . there is no evidence that axillary surgery affects survival, and our main purpose in doing it is to decide about adjuvant therapy (such as chemotherapy) and to prevent recurrence in the armpit.” Other doctors disagree. Drs. Moore and Kinne, in their article in the journal CA, state that axillary surgery “has been proved to have a survival benefit.”
Dr. Kambiz Dowlat, a breast surgeon at Rush-Presbyterian-St. Luke’s Medical Center, sums up the issue: “We used to think the lymph node dissection was therapeutic, that part of breast cancer treatment was to remove those glands (nodes). The thinking was that if the cancer had moved to the lymph glands, and you removed those glands, you had prevented local recurrence and possibly removed the remainder of the cancer cells. This has become a controversial issue, and the majority of doctors now think the presence of cancer cells in the lymph nodes predicts, but does not govern, the cure. Positive lymph nodes will tell the doctor that a particular tumor has a tendency to spread all over the body, and here is one site to which it has spread.”
Unfortunately, at this time the lymph node dissection is the best test medical science has to guess the aggressiveness of a particular breast cancer and to guide further therapy. Dr Love writes: “Until . . . we have a better marker of prognosis than lymph nodes, I still feel a lymph node dissection is an important operation for most women . . . however, I think it is important for every woman to question her surgeon about the necessity of the axillary dissection and make sure she is comfortable with the explanation before proceeding.”
–
The therapist came out and I showed her the arm; then I rewrapped it and did my exercises. I was again directed to a treatment room, and the therapist began another manual lymph massage. As she massaged my arm, she explained that, in addition to the lymph node dissection, radiation damages delicate lymph vessels by scarring them. Because of this, women receiving lumpectomies with radiation were at a high risk for developing lymphedema. Most of the women in her clinic were in this group, and young, between 30 and 45. I remember our conversation this way:
“Do you mean women are saving their breasts and losing their arms?’
“I wouldn’t put it exactly like that. But yes, there is a greater risk.”
“How many women are getting lymphedema with lumpectomies? With mastectomies?”
“No one can tell you; no one I know of is monitoring it. I can only tell you that about 80 percent of my lymphedema cases are women who have had lumpectomies with radiation.”
“What a choice: your breast or your arm.”
“But that may be because women with lumpectomies are more motivated to seek treatment. No one knows the real numbers.”
I lay there, feeling helpless and vulnerable. No one knew who was getting lymphedema and who wasn’t; there were few treatment centers, and no one had a cure.
After the lymph massage, the therapist measured my arm for the last time. Although it was still spongy, it had lost much of the fluid, and the swelling was nearly gone from my back. The therapist instructed me to wear my bandages whenever I exercised or worked as a trainer. Carefully throwing my backpack over my right shoulder, I left the clinic for home. I felt comatose as I sat in the last row of the airplane, staring at my bandaged arm. When I landed at O’Hare, I resolved to try managing my alien appendage.
At first I lifted weights as before, being careful to bandage my arm, but it kept throbbing and swelling. I lifted less. It still ached. I tried not lifting at all, and had my clients pick up and rack their weights. I cut my work schedule.
I became consumed with treating my left arm, determined to cure myself of lymphedema. I got a compression sleeve and wore it during the day. I kept my arm immaculately clean and free of cuts, examined it for signs of swelling. I had freshly washed bandages and compression sleeves hanging in my bathroom. I found massage therapists in Chicago and scheduled two lymph drainages a week. The swelling would go down, but with activity my arm would swell and throb again. The only time it didn’t hurt was when it was elevated, or immediately after a lymph drainage. I didn’t know where to turn.
I attended a lymphedema support meeting. I sat comparing my arm to those around me, and listened to their stories. I learned that lymphedema affected not only cancer patients, but that there was also a congenital, or primary lymphedema. One father sought help for his 8-year-old daughter, born with lymphedema in both legs.
These patients complained about the lack of effective treatment and the fact that physicians knew so little about the condition. One patient told her doctor her arm was painful. He said her pain couldn’t be from the lymphedema because lymphedema didn’t hurt.
A breast cancer survivor who had spent thousands of dollars to get her arm down to a reasonable size said, “No one caused it. The surgeon said he didn’t cause it; the radiation oncologist said she didn’t cause it. But two weeks after radiation therapy my arm swelled. All I know is that somebody besides me caused it.”
Beneath these complaints, I sensed that these men and women felt helpless. The medical profession seemed indifferent to their suffering, and their lives had been debilitated by their condition. One survivor’s arm was permanently swollen because she’d picked up her 30-pound grandchild. She had to stop. From gardening to hiking to enjoying a warm summer day without a thick compression sleeve or stocking, these patients had been sentenced to a life of compromises. I could see how their lives had been diminished, like mine, how much lymphedema had limited the joy of surviving cancer. Doctors can measure the number of lymph nodes that contain cancer, but how do you measure the absence of joy? Of a life less fully lived?
Some sufferers live with pain, have lost work or have been forced to change jobs. Others complain their insurance companies won’t cover their treatment: “If this is a medical condition caused by my cancer treatment, why won’t Medicare pay for my compression sleeves?” And this devastating side effect can be worse than the cancer treatment many have endured: “Breast cancer was a cakewalk compared to this.” “This is a thousand times worse than the cancer.” “I’d go through surgery, chemotherapy and radiation all over again, if I could have my arm back.”
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It is hoped, of course, that when doctors find a less invasive way to determine the stages of breast cancer, fewer patients will develop lymphedema and suffer its debilitating consequences. Dr. David Krag, surgeon at the Fletcher Allen Health Care Center in Burlington, Vt., has developed a promising new technique called sentinel node mapping, now in clinical trials at Rush-Presbyterian St. Luke’s and 14 other centers. This technique would remove only the one or two lymph nodes that drain the tumor. Dr. Dowlat, whose breast cancer research is financed by the Brian Piccolo Breast Cancer Fund, is directing the trial at Rush. Also, doctors are shifting their emphasis from lymph node involvement to the characteristics of the tumor itself as a way to stage the disease. Pathologists currently examine characteristics of a tumor and perform tests on it, looking for other markers that might indicate its aggressiveness. In the future, doctors will know so much about a woman’s cancer from the tumor itself, lymph node dissections may rarely be done. But doctors need years to collect data that will tell them which of these indicators will help them in determining the stage of the disease.
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My lymphedema didn’t go away, and I began viewing my body as a necessary nuisance. I could keep most of the swelling and pain out of my arm if I elevated it, wore the compression sleeve during the day, and bandaged during exercise. Other than that, I tried to ignore my arm, my body. It was an uneasy truce, but it kept the madness at bay.
Then early last spring, I noticed a new symptom. When I taught aerobics, my back and chest swelled. I could feel the fluid filling the area between my skin and the implant, and tried to massage it out.
One day I sat, my arm elevated on the back of my sofa, doing the self- massage, and for the millionth time thought about breast cancer. My tumor had been small, well differentiated, and not dividing very rapidly. I had done some research and found that I had a 90 percent chance the cancer wouldn’t be in my lymph nodes. Yet my surgeon had made the decision to do a Level II dissection, possibly removing over half the nodes in my armpit.
It seemed so senseless to me, sitting with my burning, swollen arm. I was alive, and grateful for that. But I had lost the use of my arm in my work, and a third of my income because I couldn’t work the hours I once did. And I lived with swelling, relieved by one or two weekly manual lymph massages. If I did live a normal life span, these would end up costing me $156,000, as not a penny would be covered by my insurance. I kept ruminating. That axillary dissection had nothing to do with curing me. It seemed brutal and barbaric.
Over and over I kept puzzling. There was a modern way to detect breast cancer, and many modern ways to reconstruct a breast. Yet doctors still employed this archaic method of staging the disease. My mind kept spinning in the circle of the contradictions.
During my last appointment, to encourage me to protect my edematous arm, my oncologist described a patient who developed lymphedema when she carried books while moving from one home to another. My doctor was angry because she had warned this patient not to lift the books. But the patient’s husband had a heart condition, so who was to lift them? The patient lifted them, and got lymphedema.
Who will lift the books? Who will lift the children? Who will live her life? Was she telling me not to live my life, not to be who I was?
Suddenly, at home on my sofa in the heat, I was haunted by my vow to be both feminine and strong, and the way the world seemed to dismiss it. Strength? You’re a woman! Why do you bother yourself with that! I thought of the years ahead, years of minding my arm, of managing the pain, of fighting daily to be who I was. The price was too dear.
In bed that night, my arm aching and elevated on my pillow, I questioned the value of living out my possibly normal life span. No one seemed to understand that my identity had been stripped from me. “Just be grateful you’re alive,” I could hear them say. But isn’t how one lives nearly as important as that one lives? And how does one justify living if life isn’t meaningful to the person who puts the meaning into living it?
The questions spun themselves. If Michael Jordan were diagnosed with the same breast cancer I was, how many lymph nodes would they take from him? Would they take any? How could I convince the world my arm was as important to me as MJ’s was to him, it’s just that mine might never command as much on the open market.
Might my mastectomy surgeon have informed me before-rather than after-the lymph node dissection that my arm would no longer be able to tolerate heavy weights, so we could discuss it, perhaps find another way? Could he have given the decision, with all its uncertainty and risks, a little to me? And why did I feel as though I were being finally and ironically and hideously punished for claiming some power for myself?
The tears came, then the grand sobs. The one thing I’d had, that one thing that was entirely mine, the one thing I thought nobody could take from me, was my physical strength. It had been taken. I was powerless.
Lying in the dark, the fact I’d been struggling to deny presented itself. I had lymphedema, and I couldn’t change it.
I couldn’t keep running from the gym to the massage therapist. I had to accept the fact that my strength was diminished, my arm probably would ache every day and lifting weights made it worse. I couldn’t be who I had been. I wasn’t who I had been. There was truly no way out.
My eyes traced the walls of my room, until they fell on a photo of my niece, Ashley, and me in front of her 5th birthday cake.
I couldn’t help wondering: What if Ashley gets breast cancer when she’s younger than I was, when she’s 30? Will doctors still be doing lymph node dissections? What if she gets lymphedema, and can’t do her work, or pick up her little girl, because her arm is the size of an elephant’s trunk? Who will say, “No, the standard of care isn’t good enough?”
Who will speak for Ashley, who can’t yet speak for herself? I stared at her picture. She looked so innocent and happy. She doesn’t even know the questions to ask, I thought.
Agitated, I turned on the light, and started taking notes on scraps of paper by my bedside. Here are some of the questions, Ashley. Why doesn’t a surgeon explain the extent of the lymph node dissection he or she intends to do? Why don’t doctors inform women that the extent of the lymph node removal is controversial? Some places are called Comprehensive Breast Centers. But if they don’t treat the lymphedema sometimes caused by the breast cancer treatment, how can they call themselves comprehensive?
If surgery and radiation cause lymphedema, why doesn’t every major hospital have a lymphedema treatment center? (There are a few in the Chicago area, including one at Northwestern Memorial Hospital.)
Why aren’t all doctors who treat breast cancer patients aware of the current treatment options for lymphedema? Why is it acceptable that women enter the 21st Century with swollen, bandaged arms from an often useless method of determining the stage of a patient’s cancer.
Why aren’t women given routine physical therapy after a lymph node dissection? After breast reconstruction? Why don’t insurance companies cover treatment for lymphedema? And why don’t women claim their power?
I stopped writing. I took the scraps of paper, tore them up and let them fall to the floor. These aren’t Ashley’s questions, I thought. They’re mine. I must find answers so that if Ashley gets breast cancer, perhaps she won’t have to live with lymphedema like I do, like her great-grandmother did. It was a small victory, but it was a way out.
I got up, went to my desk and turned on my laptop.
As the familiar whir of it sounded an urgent tone, I opened a new file, and claimed the power left me.
FOR MORE INFORMATION
– Y-Me National Breast Cancer Organization, 800-221-2141; Internet address: http:front/front/www.y-me.org
– Chicagoland Lymphedema Support Network: Lolly Gepson: 847-498-1255, Deborah Horne: 708-790-3264
– National Lymphedema Network: 800-541-3259; e-mail address: lymphnet@hooked.net
– Vodder trained massage therapists: Darek Zurawski, 847-459-8475; Gail Willert, 312-271-2052
– Lymphedema Clinic, Northwestern Memorial Hospital, 312-908-3032
