Finding normal

When Susan Williams got breast cancer, she had some tough choices to make

Photo By David Robert

The table centerpiece at the party was a mannequin’s head. It was resplendent with make-up, earrings, a dainty fur collar and an ample mane of hair. The wig would soon have a new home on the head of the guest of honor, Susan Williams.

The partygoers nibbled food and socialized. Then, one by one, they clipped locks of blond hair from Williams’ crown. When her scalp was as hairless as scissors could make it, her daughter finished the chemo makeover with a razor. Williams didn’t often cry during her breast cancer experience, but she did then.

“And then it was kind of funny,” Williams said. “Everybody was having a good time, and I put my wig on as soon as it was over. Other than the first shock of losing all my hair, I never really felt badly about [losing it]. … Actually it was kind of great because my hair takes so long to fix, it was nice just popping it on in the morning.”

This was Williams’ “coming out party,” as in “my hair would soon be coming out.” It happened soon after her first chemotherapy treatment. Doctors had informed her that her body would likely lose its hair within two weeks of starting the intravenously fed cancer killer. Opting not to be the victim of spontaneous and patchy hair loss, Williams took matters into her own hands.

While Williams’ reaction to her cancer seems light-hearted, every woman who contracts the disease must find her own way to deal with it. In the Truckee Meadows, about 10 women a week receive the diagnosis. More than 240,000 new patients a year in the United States must make decisions about treatment, surgery and what they need to feel feminine after they have regained their health. These decisions range from prosthetics to reconstructive surgery to nothing at all.

At the time of her treatment, Williams was hoping to feel as normal as she had before she fumbled upon the pea-sized lump in her breast. The discovery of the lump was quite a shock, as nobody in Williams’ family had ever had breast cancer. Her 59-year-old sister had never even bothered to get a mammogram.

She endeavored to feel like a healthy and attractive woman in spite of losing a piece of herself that was so fundamentally tied to her femininity. Aside from donning the wig, part of maintaining normalcy meant having her breast rebuilt immediately after her mastectomy.

“I think anything you can do to be as normal as you were before is very helpful because there are just so many aspects of breast cancer,” Williams said about a year and a half after finishing chemo, looking professional in an ecru linen suit, her short blond hair tousled stylishly and a gold cross around her neck. “The more you can become normal, the better you’re going to be, or the easier your total healing will be.”

The single Williams was 57 when she was diagnosed in October (Breast Cancer Awareness Month) of 2001. She had recently started a new secretarial job. Even though she acted swiftly when she felt the lump one night while talking on the phone with her daughter, it was more than a month before she got into surgery. Her surgery was followed by chemotherapy and radiation.

“I immediately made appointments for surgery,” she said. “My surgery was Dec. 11. The reason it took so long was because I had first decided to have a lumpectomy and somebody at work had a lumpectomy just before I was to have mine. She had to turn right around and have a mastectomy. I thought, ‘I’m not going to mess around with that. I’m going to get rid of it all the first time.’ So, then I had to find a doctor who would do reconstruction.”

Healing, surgery and new breasts
Oncology surgeon Lindsay Smith says about 25 to 30 percent of women opt for reconstructive surgery after the lumpectomies and mastectomies he performs. The national percentage may be higher, especially since the 1998 Federal Breast Reconstruction Law, which required insurers to cover reconstructive surgery after mastectomy.

One reason the average may seem relatively low is because the percentage of mastectomies has dropped. Doctors prefer to preserve as much of the breast as possible, which means there are more partial mastectomies (lumpectomies). Lumpectomies generally don’t require reconstruction, although it is available if the shape of the breast is significantly distorted. Second, reconstructive surgery is more taxing on the body than just a mastectomy alone. The hospital stay and healing time are longer, the discomfort more acute, complications more prominent, and, because muscle tissue from the back or stomach is often pulled into the breast area, there may be uncomfortable muscular sensations that never go away.

A mastectomy typically calls for an overnight stay in the hospital. A patient will be able to shower and drive a car the next day. However, when body parts, such as back muscle or muscles from the abdomen, are used to create a breast, the patient’s hospital stay is two or three days. It was three for Williams.

Patients also have the option of a saline implant; healing time for this procedure is less, although implants can become hard and cause the breast to become desensitized. Many times, muscle tissue and an implant are used. Since the nipple is usually removed in a mastectomy, it’s often necessary to build a new one. This involves taking tissue from the newly created breast, the opposite nipple, the ear or the upper inner thigh, and then tattooing the skin to make the nipple look natural.

But many patients feel it is less of an adjustment to have the cancer surgery and the reconstructive surgery all at once. For Williams, not having reconstruction was never an option.

"[Even] with my reconstruction, they don’t look totally natural,” Williams said. “There’s a scar straight across, right in the middle, and the new nipple doesn’t look quite right. It doesn’t look horrible, but it doesn’t look natural. … But I was just very happy that it was there. The doctor who did the reconstruction showed me a book of pictures before and after, and the women who didn’t [have reconstruction] on one side are just totally flat and terribly scarred. Breast cancer and everything that goes along with it is traumatic enough without having to be … maimed.”

Whether a woman feels maimed after losing her breast depends on how fervently she associates it with her sense of femininity and beauty. For most women—but not all—the connection is strong. Smith said the decision to undergo the surgery can’t be predicted based on things like education, age or socioeconomic group.

“Whether people chose to do reconstruction or not is a very personal decision,” Smith said. “Some young women say, ‘I just want the breast off. I don’t want reconstruction.’ … We had an 89-year-old who came in here, maybe a year ago now, a lovely little lady who had known breast cancer, and we talked about a mastectomy versus preservation. She says, ‘I love my breasts. You’re not going to take that thing away. Besides, I have a new boyfriend.’ “

Stages of disease
Breast cancer can be described partially by where it begins. There are two main types of breast cancer: ductal carcinoma and lobular carcinoma. A breast is made up of lobules, ducts and fatty tissue. The lobules are the mammary glands and produce milk. The ducts carry the milk from the lobules to the nipple. Fatty tissue fills the spaces around and between the ducts and lobules. Axillary lymph nodes filter fluid from the breasts.

Susan Williams says part of total healing for her meant having breast reconstructive surgery after her mastectomy.

Photo By David Robert

Ductal carcinoma begins in the lining of the milk ducts and is the most common form of cancer. Lobular carcinoma begins in the lobules. If a malignant tumor invades nearby tissue, it is known as infiltrating or invasive cancer.

There are four stages of breast cancer, and the stage determines treatment.

In Stage 0, the cancer is noninvasive. This is a very early stage of cancer, meaning that it has not spread outside the breast. Cancer cells are found only in the ducts.

To be considered Stage I, the cancer is 1 inch or less in diameter. The tissue around the ducts has been invaded, but the cancer has not spread outside the breast to the lymph nodes or elsewhere in the body.

Stage II has three types. First, the cancer is no larger than 1 inch, but it has spread to the lymph nodes. Second, the cancer is between 1 and 2 inches and may or may not have spread to the lymph nodes. Third, the cancer is larger than 2 inches but has not spread to the lymph nodes.

Increased awareness, mammogram technology and self-screening help to catch breast cancer when it is still in Stages 0 through II, when it is easiest to treat and has the highest survival rates.

In Stage III, the tumor is generally larger than 2 inches and has spread to the skin, chest wall or nearby lymph nodes. In Stage IV, the tumor has spread to other parts of the body, most often the bones, liver, brain or lymph nodes. At this point, the cancer has become metastatic, meaning it has transferred the cancer to other parts of the body.

Aggressive treatment
Lumps themselves often cause little or no pain, although there are exceptions. Williams says that it was the soreness she felt that prompted her to do a self-exam and start asking questions.

“I had a little bit of pain, very little, but just something unusual in my right rib,” she said. “Everybody said, ‘Oh, don’t worry about it … with breast cancer, there’s no pain.’ I was not accustomed to doing self-exams. But I was telling my daughter about it, and she said, ‘You better do a self-examine,’ which I did right then and there, and I felt a lump. I knew immediately what it was.”

Sometimes, though, self-exams can result in an incorrect diagnosis. It’s important to visit the doctor if there’s anything new or changing in the breast.

“The first thing we do is to try to make a diagnosis, to see whether it’s breast cancer or not,” Smith said. “A lot of women come in with lumps or masses, other women come in with what we call microcalcifications, little specks of calcium in the breast that we see in mammograms. When we see those tiny little specks in a cluster, there’s a 20 percent chance that it may be cancer and an 80 percent chance that it’ll be benign.”

After a lump has been found in the breast or aberrances were detected during a mammogram, a patient needs to have a tissue sample removed to test for the presence of cancer. This is the biopsy. Percutaneous biopsies involve using a needle or a vacuum to draw cells or fluid from the lump or anomalous tissue. Then there are surgical biopsies, which remove all or part of a lump for testing.

Many women aren’t aware that, if cancer is detected, they may well find themselves having more than one surgical procedure. If a biopsy detects cancer, patient and doctor leap on the warpath.

“What is usually done is that the area of the biopsy (or the area of the tumor), the nipple and the areola are all included in an elliptical incision. … So we remove the breast and take the lymph nodes out if we want to, then put the skin back down, and then it’s just a transverse or diagonal scar depending on the area of the tumor.

“If we preserve the breast, which is what we do in the majority of patients we see today, we do recommend radiation or X-ray treatment to the breast after that’s over,” Smith said. “The reason for that is, if the patient has an invasive cancer in the breast and we do a lumpectomy and preserve the remaining breast, 40 percent of those patients will have another cancer occur in that breast if we do not do the radiation.”

If radiation is performed, the recurrence rate ends up being the same as it would have been were a woman to have a full mastectomy.

Often additional therapy—chemotherapy, radiation therapy and/or hormone therapy—may be needed. This additional therapy destroys cancer cells (and sometimes healthy cells, as well) and helps prevent breast cancer from returning.

Feeling feminine after cancer
Trudy Harper, owner of Bras Plus on Virginia Street, has been in the plus-size bra and prosthetic breast business almost all her life. She seems at home in her shop, wearing modest denim, her brown hair relaxed around her shoulders and a perky pink lipstick framing her smile. Harper said that, in the 11 years that Bras Plus has been open, sales have jumped every year—almost in spite of the Federal Breast Reconstruction Law.

“We haven’t seen a drop,” Harper said in her snug and lilting voice that is surely soothing to clients. “Most of my people opt not to do the reconstruction … It’s a lot of surgery, and it doesn’t look like their original breast is back.”

Harper, like Smith, has never noticed a trend in the type of woman who travels the reconstruction route rather than the prosthetic.

Trudy Harper, owner of Bras Plus, shows off some of the sizes and shapes of prosthetic breast forms that women have to choose from.

Photo By David Robert

“I always thought the younger girls or the younger woman would have the reconstruction, but a lot of them don’t,” she said. “Then I have women that are 80 years old, and they’re going to have reconstruction. It’s just the person.”

Most oncologists will send their patients to a prosthetic shop like Harper’s about four or five weeks after surgery.

Sometimes, though, women come in before surgery to see what their choices are. Women will even come in three or four weeks before surgery if they’re still vacillating on whether to get reconstruction. In a six-day week, Bras Plus does about 10 fittings for mastectomy bras.

When a woman comes in after a mastectomy, Harper spends about 20 minutes taking her measurements for a pocketed bra. There are different form shapes to fit inside the bra: triangle, teardrop and heart. The form is available with or without nipples. There are lightweight forms. There are foam prosthetics for swimming. There’s also an attachable prosthetic that can be worn without a bra; a Velcro strip attaches to the chest wall, and the removable breast attaches to Velcro. This works well for women who don’t like to wear bras or who are very active. Most women with prosthetics wear the pocketed form.

Many women only wear their breast forms when out in public. Harper recommends that women with larger breasts, if they’ve had a single mastectomy without reconstruction, wear a weighted prosthetic in order to avoid curvature of the spine from unbalanced weight.

Harper knows some women who have fun with their prosthetics.

“Most of the time, women will go smaller because breasts are very heavy when you’re carrying that weight, especially if they’re not attached to you,” Harper explained. “And then I’ve had one older woman who always wanted to be a D, so she was a D. I have other bilateral [clients] who, every year when they come in for their breast forms, they get a different size, and then they can wear them at different times.”

Women support women
Women often are uninformed about breast cancer and about their post-surgery options. A support group, however, can provide the newly diagnosed patient, the in-the-thick-of it patient and the recuperating patient with information and help they won’t find elsewhere.

Liz Thomas has been heading the On With Life breast cancer support group at Saint Mary’s Community Wellness since March of this year. The support group has been around for 10 years, getting anywhere from 12 to 24 women a week. There is another support group for women with metastatic breast cancer. Meetings tend to be a sharing of experiences, everything from the best kind of cotton camisole to wear during radiation treatment—radiation often leaves the skin feeling raw and sunburned—to preferred doctors, to descriptions of ongoing numbness and pain, to emotional issues such as depression.

“I think the general consensus is that women would have gone about treatment maybe a different way if they’d come here first,” Thomas said, “or they would have felt more confident about the decisions they were making.”

“I came as soon as I got diagnosed,” Sue Yabroff volunteered at a recent support group meeting, looking quite radiant with her rosy cheeks and smartly styled brunette hair. “Just coming here before treatment changed my mind about a few things—even my doctor.”

In 1989, a Stanford University School of Medicine study found that patients with metastatic breast cancer who visited weekly support networks lived 18 months longer than those who didn’t. It’s surmised that women who attended support groups found the confidence and know-how to be more active in their treatment.

“I came after my surgery and before radiation,” said Barbara Kramen-Kahn, who went on a 3,415-mile bike ride from Los Angeles to Boston one year after finishing her radiation treatment. “I learned more here in an hour and a half than I’d learned in the many, many books I’d read. The information was more updated. [Women talked about] what to do about the depression, what to do about the fear. It was really practical knowledge.”

“I think most surgeons give you the general know-how,” added Susan Justice, who had just received her final chemotherapy treatment that day. “But I think 90 percent of the real facts come after the fact. They really don’t tell you what to expect.”

“I think they don’t want to frighten you,” offered Kramen-Kahn.

“What helped me,” said 36-year-old Angie Gibbs, who’s recovering from a lumpectomy, “was thinking about how the Amazon women used to remove one of their breasts so they could shoot better with their bow … thinking of ourselves as warriors.”

On the bright side
Williams doesn’t think the strength she found to get through breast cancer was extraordinary. She’s inclined to call it necessity.

“I think people are resilient to a certain extent, and, when something happens, you have to go on,” she said.

At the time, though, William says that she may have ignored the severity of the disease. She thinks she should have taken the breast cancer more seriously and that her flippant attitude may have contributed to the depression that she eventually suffered.

“I did not ever, until just recently, grasp the seriousness of it, because I tend to look on the lighter side of things and joke about things, and that’s what I did with this. … I think that was probably part of my depression because here I had this trauma going on in my life, but I was acting like everything was normal. So there were these two things pulling opposite directions, and my mind was just not going with either one of them.”

These days, doctors cure more than 90 percent of patients with early-detected forms of breast cancer, and there are options to help women feel feminine after losing a breast.

Despite losing a breast to cancer, and although the seriousness of what she went through—40,200 women die of breast cancer each year—has finally resounded within her, Williams can still find a bright side to something as darkly serious as cancer.

“Better cleavage. I can wear low-cut dresses now."