Learning to Cope With Breast Cancer : A 48-Year-Old Fullerton Resident First Grapples With the Fear of Reoccurrence and Death but Then Manages to Rebound, Utilizing Inner Strength and the Helping Hand of a UCI Support Group
Jane was lying in bed last March with tubes coming out of her arms and chest, but she was feeling well enough to ask herself, “What do I want most at this moment?”
She was recuperating from a mastectomy and reconstructive surgery, and her answer caught her by surprise. “I was horny. I was thinking, ‘I would love to have sex right now,’ ” she recalls, smiling at the untimeliness of her desire.
Still, it was a remarkably affirmative thought for someone who had just confronted breast cancer, an illness that often threatens a woman’s sexuality and self-esteem, as well as her life.
“Your essence is what makes you a woman, not your breasts,” Jane says emphatically. “I’m a woman who’s had a double mastectomy--and I’m still a woman.”
The 48-year-old Fullerton resident, who asked to remain anonymous, is one of about six women who attend weekly meetings of a support group that helps cancer patients at the UCI Breast Center in Orange cope with the emotional complications of breast-cancer treatment.
Jodi Saia, a registered nurse who helps lead the support group, says every breast cancer victim has to reassess her self-image after treatment. Jane is among the more resilient patients who have been able to regain their positive self-image soon after surgery. At the other extreme, Saia notes, is a single woman who hasn’t been able to look at her breasts since their appearance was slightly altered as a result of radiation treatment following the removal of a cancerous lump.
The adjustment after a mastectomy may be easier for women who have reconstructive surgery immediately, but they still have to come to terms with changes in their bodies. At the same time, they’re struggling with the fatigue, mood swings and loss of hair that usually accompany chemotherapy, according to Saia.
And always looming is a fear of death that may persist long after recovery because of the possibility that the cancer could reoccur. (On the reassuring side, Saia notes that there is a greater than 90% chance of curing breast cancer if it is detected early, and--for those who are afraid of what they might find in a self-exam--80% of all breast lumps prove to be benign.)
Because of the way breast-cancer treatment threatens a woman’s self-image, patients have special needs for support from their loved ones, says Bobbe Mootchnik, a clinical social worker who leads the UCI support group with Saia. For example, a woman needs her husband or “significant other” to reassure her “that she’s the same person and his feelings haven’t changed,” Mootchnik explains.
But some family members have as much trouble accepting a cancer diagnosis as the patient. One long-married woman in the UCI support group said her husband showed little empathy after she had a mastectomy. His mother had died of cancer when he was a teen-ager, and his fear of losing his wife had caused him to withdraw when she needed him most.
Daughters who fear they will inherit the disease from their mothers may also have trouble facing the illness and providing support, Mootchnik says.
Loved ones, she adds, may even feel resentment if a wife or mother who has always been the family’s primary nurturer suddenly becomes dependent on them for care and support. The patient, in turn, may feel guilty by allowing others to take care of her.
The UCI support group offers patients a kind of empathy that cancer victims can get only from each other, Saia notes. Their open talk about emotions as well as medical questions is especially important for those whose illness has illuminated long-neglected problems in their family relationships.
Jane, for example, was shocked and hurt when her 21-year-old daughter, Lori (not her real name), failed to show any compassion for her after the mastectomy.
The tension between them dates back to Lori’s volatile teen years and has been aggravated in recent years by Jane’s disapproval of her daughter’s “irresponsible” choices.
But they felt a special bond when Lori became an unwed mother and turned to Jane for support three years ago. Jane understood because she had never married and had chosen to raise Lori alone. Lori’s child quickly became one of the greatest joys in Jane’s life.
She welcomed Lori and her granddaughter into her home in August when her daughter told her she was having trouble making it on her own. And she thought that having them there would be helpful because she was still suffering side effects from chemotherapy. But Lori kept her distance.
Jane finally confronted her after noticing that she was looking away when her mother undressed. Lori explained, simply: “I can’t deal with it.”
Jane thinks she may be partly responsible for her daughter’s lack of empathy because she taught her to always “get up and keep moving” and not let anything get her down.
“She’s seen me survive so many things that she didn’t comprehend this was much harder than anything else I’ve had to deal with. I think she sees me as invincible.”
And she was--until cancer struck.
She discovered a lump under her arm in November, 1989, five months after she’d had a routine mammogram that revealed nothing.
Jane, who had recently left San Diego and had been job hunting, was terrified because she knew she needed a biopsy but had no medical insurance. She soon learned, however, that she qualified for a program that provides medical insurance for the indigent. The biopsy performed last February confirmed that she had cancer in the lymph nodes on her left side--which meant a strong chance of cancer in her left breast, even though it didn’t show up in another mammogram.
She says her doctor recommended removing her left breast and lymph nodes and doing reconstruction that would include a reduction of her right breast. At that point, Jane made an unusual decision. She chose to have both breasts removed because there was a 10% chance that cancer would eventually occur in her right breast and she couldn’t live with that possibility.
“It’s my body. It was my decision. This was easier for me,” she says, sipping a glass of water during a teary two-hour interview in a quiet hotel bar. “I’m very practical in a lot of ways, and I didn’t want to go through all this again.”
After she had her mastectomy, this single mom who had always managed to rise above the emotional and financial hardships that confronted her felt out of control for the first time in her life.
“I’m a very resourceful person. I’ve learned how to do without and make do. All of a sudden, no matter what I did, I couldn’t change the fact that I had cancer,” she explained.
“I wasn’t worried about dying,” she added, explaining that her Mormon faith has given her spiritual sustenance. “I was afraid of the mechanics of living--of not being able to take care of myself.”
There were many nights when she would wake up in a sweat and not be able to get back to sleep. “No matter how intelligent and aware you are or how secure you feel with the medical profession, when you go to bed at night, you’re scared,” she says. “I became physically afraid for the first time. I felt very vulnerable. Your body has deserted you. You wonder, ‘Will I be able to deal with this? I’m single--how will men react? If I die, who will take care of my child?’ ”
Despite those fears, she saw her cancer as a challenge to be conquered. “I asked myself, ‘Are you going to be a champ or a wimp?’ I decided I was going to get an ‘A’ in breast cancer.”
The support she received from her friends--and her mother, who came from Las Vegas to take care of her the first week she was home from the hospital--helped her deal with the fears that plagued her as she recovered from surgery and faced six months of chemotherapy. As she puts it: “You find out who your friends are--the ones who are with you when your head is bent over the toilet.”
Jane says the recovery process may have been easier for her if she had had a boyfriend or husband to support her, but the husbands of her close friends offered just the kind of male support she needed. One friend’s husband, for example, hugged her and asked, “What can I do for you?”
Later, they talked and he helped her realize that she had been delaying the next operation because she was depressed.
Her friend and doctor both encouraged her to have the surgery so she would feel complete. And her doctor suggested she start taking some college classes to help overcome her depression. Jane, who found a job as a receptionist through a temporary agency two months after her mastectomy, is now working toward a degree in counseling and wants to help other victims of breast cancer.
When she resumes her life after completing the surgery, she will still have to deal with her fear of a reoccurrence, because she knows there are no guarantees.
But her attitude toward life couldn’t be better. She says she’s not interested in dating anyone who can’t accept her as she is and, besides, finding a man is a hope but not an ambition in her life.
She has always been able to find joy in each day no matter what difficulties she was facing, and she intends to enjoy life as much now as ever.
“I’m just glad I’m still alive because I want my daughter to be farther along before I have to go,” she says. “I’ve been overprotective. I’ve accepted responsibility for her actions so much that if I were to die, I fear gravely for her because no one would take care of her the way I have.”
She hopes Lori will learn from what she has been through. She wants her to know that: “No matter what happens, no matter how much it hurts, you can survive it. And you’re never alone.”
If you are single and don’t spend the holidays with family, who are the people who make the season special for you and what traditions have you created with them? Send your comments to “Relationships,” Orange County View, The Times, 1375 Sunflower Ave., Costa Mesa, Calif. 92626. Please include a phone number. Responses will remain anonymous upon request.
COUNTYWIDE CASES, TREATMENTS--1985 The reports of actual cases from Orange County showed that there were 1,106 new cases of breast cancer for females. (There were nine cases of breast cancer for men, but they are not broken down by age or included on chart below.) Orange County Cases (Women)
Ages Number of cases % 20-29 14 1.3% 30-39 70 6.3% 40-49 165 14.9% 50-59 229 20.7 60-69 263 23.8% 70-79 225 20.3% 80 and older 140 12.7%
Total: 1,106 cases Note: Age-adjusted incidents were 104 per 100,000. Source: cancer surveillance program of Orange county, UCI epidemiology program Surgical Choices/Treatment Alternatives
Surgery or Treatment Number of cases % Surgery and chemotherapy 188 16.9% Surgery and radiation 131 11.7% Surgery, radiation and chemotherapy 67 6.0% None of the above 23 2.1% Chemotherapy only 14 1.3% Radiation alone 5 0.4% Surgery alone 687 61.6%
Total: 1,115 (1,106 women, 9 men) Surgery refers to modified radical mastectomy. *Other kinds of treatment or no treatment. Cases and Deaths Nationwide statistics of reported cases of invasive carcinoma from the American Cancer Society.
*1990 *1989 WOMEN Cases 150,000 142,000 Deaths 44,000 43,000 MEN Cases 900 900 Deaths 300 300
*Numbers provided by the American Cancer Society are estimates: There is no national accounting unit, according to Dr. Bill Wright, head of Research and Analysis, Cancer Surveillance Section, Department of Health Services, State of California. Ten regions are reporting the numbers; the rates listed above are generated from these, not based on actual cases. INCIDENCE OF BREAST CANCER The chart below lists the average annual age and specific rates per 100,000 population of breast cancer incidents (new cases reported) for the years 1983 to 1988 in the five Bay Area counties: San Francisco, Marin, Alameda, San Mateo and Contra Costa. (The total state--split into five regions--didn’t begin reporting these statistics until 1987, but trends may be inferred from this Northern California region in which historical data has been kept for a long time.) BREAKDOWN BY AGE AND ETHNICITY
Age Groups White Black Chinese Japanese Filipino 20-24 0.6 1.4 0 0 3.2 25-30 7.5 8.3 8.4 11.9 2.4 30-34 25.7 37.0 19.5 6.1 25.8 35-40 75.0 83.7 75.6 71.6 140.4 40-44 151.6 133.2 88.6 109.6 140.4 45-50 224.3 152.7 96.0 84.2 225.4 50-54 260.7 154.6 113.3 109.0 167.0 55-60 322.8 204.4 188.2 149.1 206.7 60-64 414.8 268.6 193.9 318.1 176.7 65-70 476.4 310.4 228.5 433.2 253.4 70-74 469.6 321.3 220.1 324.4 286.3 75-80 518.4 334.0 234.6 127.9 138.7 80-85 511.0 472.3 132.9 113.4 295.0 85 and older 433.7 363.9 180.9 162.9 508.9
* Standard error for the Filipino rate is more than 600. Would expect a true rate between -500 and +1500. Source: Bay Area Resource for Cancer Control, Alameda UCI CURRENT CHOICES Recent distribution of surgical choices/ treatment alternatives at UCI Breast Center:
45%--Modified radical mastectomy with immediate reconstruction
45%--Breast conservation therapy: lumpectomy, armpit “axillary node dissection”: breast is treated with X-ray therapy (5 weeks of radiation)
10%--Modified radical mastectomy
RISK FACTORS What puts women at higher risk?
Age. As women get older, the risk increases. Breast lumps are very common, particularly in young women, but only one in seven will be cancer. As women become older, the probability increases: after age 50-55, the majority of these lumps will be cancerous.
Childlessness. A woman who has not had children or one who had her first child after the age of 30 is at higher risk.
Early onset of menses. If menstruation began before the age of 12.
Late onset of menopause. If menopause occurred after age 55.
Family history. If the mother, grandmother or sister have had breast cancer.
Obesity. If a woman is more than 40% heavier than her ideal body weight.
DETECTION Recommendations for those aged 20-35 are a monthly breast self-examination and a visit to a physician every three years.
Self-examination should begin at the age when a woman starts seeing a gynecologist, according to Dr. Wile. Women need to be aware of the lumps in their breasts, he said. (UCI offers classes for breast self-examination every other month, open to the public, to encourage women to practice this simple method of early detection.)
A base-line mammogram should be done between the ages of 35 and 39 (mammograms are not necessary until the age of 35 unless there’s a history of breast cancer in the family), a physician should be seen every two years and monthly self-exam is recommended.
Women between the ages of 40-49 should have a mammogram every one to two years (depending on the results of the first exam and on the family medical history of breast cancer), do a monthly self-exam, and be seen by a physician every one to two years.
Women 50 and older should have a mammogram every year and be seen by a physician every year, along with doing a monthly self-examination.
DEATH AND SURVIVAL RATES As women get older, the risk of breast cancer increases. (Women who reach the age of 90 are at a much greater risk than women in their 30s and 40s.) When a woman is in her 80s and has a lump, it is almost certain to be cancerous.
The mammogram, recommended after the age of 35, can detect a cancer so small that it has not yet formed into a lump perceptible to the touch. The chance of cure if the cancer is found on this sort of X-ray is 95%. The cure rate goes down substantially if a lump is found in a self-examination. If there is no evidence that it has spread outside the breast, that rate would be about 75%. But if it has spread to the armpit, the recovery rate numbers are smaller. COMPREHENSIVE BREAST TREATMENT CENTERS IN ORANGE COUNTY Breast-Care Centers are staffed with a radiation oncologist, a radiation therapist (five to six weeks’ radiation after surgery), a plastic surgeon (breast reconstruction) and a surgical oncologist.
In many other places nationwide, women are offered only a mastectomy, Dr. Wile said. “People here at this university have a very great interest in breast-conservation therapy. We have plastic surgeons who participate in the care of the patient from the start.”
The advantage of breast-conservation therapy is that the breast is conserved; the disadvantage is that it combines radiation with therapy and prolongs the treatment substantially. But the results are quite good regardless.
Breast Care Center, UCI Medical Center,
101 The City Drive, Orange; (714) 634-6968.
The Breast Care Center of Orange County, 1000 W. La Veta Ave., Orange; (714) 541-0101. All biopsies and surgeries are performed at St. Joseph Hospital across the street.
Breast Care Center, Saddleback Memorial Medical Center, 24451 Health Center Drive, Laguna Hills (714) 472-7200
Comprehensive Breast Health Program, Cancer Center, Hoag Hospital, 301 N. Newport Blvd., Newport Beach
(714) 7-CANCER.
Sources: Breast Care Center, UCI Medical Center in Orange; Sacramento Cancer Surveillance Section--Research and Analysis, Dept. of Health Services, State of California; Cancer Surveillance Program of Orange County, UCI Epidemiology Program; Tumor Registry, Long Beach; American Cancer Society; individual breast care centers.
Researched by: Elena Brunet / Los Angeles Times