Publications
Insight, Fall 2006
Our fall issue explores methods to manage fears of recurrence and the impact of breast cancer on bone health for women with early-stage and advanced disease. A profile of a younger woman with breast cancer discusses the challenges of making treatment decisions soon after diagnosis.
Table of Contents
Boosting Bone Health: Protecting Your Bones During Treatment and Beyond
How strong are your bones? If you were recently diagnosed, you may be planning to think about that question later. Donna M. Siegmeister had other things on her mind—surgery, reconstruction and chemotherapy for early-stage breast cancer—when her doctor suggested she get a baseline DEXA scan. That test would assess her risk for osteoporosis, a disease that weakens bones and can lead to fractures, pain and loss of mobility.
Donna, who lives in Cherry Hill, New Jersey, was 43, premenopausal and about 17 years shy of when such a scan might be suggested for a woman without breast cancer. Yet Donna’s doctor understood that bone health and breast cancer are related in important ways. Those connections make it wise for all women with breast cancer to think about their bones sooner rather than later.
The scan showed Donna had osteopenia, or low bone mass. If left untreated, that condition could lead to osteoporosis.
"I knew I’d have to worry about bone health in the future," says Donna, whose mother had a history of osteoporosis. "It just brought it to the forefront earlier."
Strengthening her bones became part of Donna’s treatment regimen and remains a key issue in managing her health. "It’s a quality-of-life issue," she says.
A Delicate Balance
Healthy bones are hard, but they are also living, growing tissues. They renew themselves through the actions of two types of cells, one that breaks down bone (osteoclasts) and one that forms new bone (osteoblasts).
Normally, that process supports good bone mineral density by maintaining a carefully
regulated balance. The system loses its balance when osteoclasts become too active and too much bone is broken down.
We all have an increasing risk of losing bone density as we age. Women have less bone tissue to begin with, but estrogen helps protect what we have. That’s why bone loss accelerates as estrogen levels fall during menopause.
For women with breast cancer, treatments that shut down or remove the ovaries or suppress estrogen levels increase bone loss. How much bone each woman might lose depends upon her bone strength before diagnosis, the type of treatment used and her menopausal status before and after treatment.
Adding Up Bone Risks
Chemotherapy can shut down the ovaries, temporarily or permanently. Ovarian failure caused by chemotherapy cuts estrogen levels as severely as surgical removal does.
"Some women who are treated with adjuvant chemotherapy have a bone loss risk that, if unchecked, untreated and unmonitored, could lead to problems with osteoporosis," says Charles L. Shapiro, MD, director of breast medical oncology at the Arthur G. James Cancer Hospital at the Ohio State University.
Younger women pushed into permanent early menopause are often unaware of the risk to their bones. A 2006 Baylor College of Medicine study showed only about half of women with chemotherapy-caused premature menopause had talked about bone health with their healthcare providers.
Hormonal treatments also increase risk. Medications that turn off the ovaries of premenopausal women, such as goserelin (brand name: Zoladex) or leuprolide acetate (brand name: Lupron), keep estrogen low and may cause bone loss. Aromatase inhibitors used to treat postmenopausal women, including anastrazole (brand name: Arimidex), letrozole (brand name: Femara) and exemestane (brand name: Aromasin), reduce already low estrogen levels, leading to osteopenia and osteoporosis. Tamoxifen protects bone density in postmenopausal women but may increase loss in premenopausal women, Dr. Shapiro notes.
Donna took tamoxifen after chemotherapy and alendronate (brand name: Fosamax), a bisphosphonate medication, to protect her bones. Bisphosphonates inhibit the bone destruction of osteoclasts. In women with osteopenia and osteoporosis, they help build bone. They reduce bone loss in postmenopausal women taking aromatase inhibitors and in premenopausal women on combination adjuvant hormone therapy (goserelin and tamoxifen or an aromatase inhibitor).
Earlier this year, Donna had her ovaries removed and started taking an aromatase inhibitor. "I’m basically juggling," she says, "trying to do everything I can to prevent a recurrence of breast cancer, when at the same time I’m robbing my bones." She now uses the bisphosphonate ibandronate (brand name: Boniva) and takes calcium.
In addition to treatment-related risks, all women are more likely to develop fragile bones if they have one or more of these factors: a personal or family history of fractures in adulthood; small bone structure; weight under 127 pounds; are Caucasian or Asian (although African-American and Latina women also are at risk); smoke; consume too much alcohol or too little calcium; don’t get enough weight-bearing exercise; or take certain medications.
Kristine L. Tanno, of New York City, is Japanese by descent and knew her heritage increased her chances of osteoporosis. After surgery and chemotherapy at age 35, Kristine remained premenopausal. She takes about half her daily calcium in vitamin supplements and recently participated in a bisphosphonate clinical trial.
Her doctors talked to Kristine about her bone health needs. "I’m Asian, so there’s always this assumption that we don’t get enough calcium for many reasons," she says. "They joke around that I’m their only Japanese person who is obsessed with cheese. I eat cheese all the time. So they said, ‘Okay, maybe you are covered.’"
Metastases in Bone
Concerns about bone health go beyond bone loss. As bone breaks down, growth factors are released that may be connected to advanced (metastatic) breast cancer.
"These are the same growth factors that breast cancer, we think, depends on,"
Dr. Shapiro says. "[This may explain why] bone is the most frequent site of breast cancer metastases—because it’s an environment rich in the relevant growth factors for breast cancer growth."
Most bone metastases related to breast cancer are osteolytic—meaning the bone is worn away in places and weakened. Some are osteoblastic, creating areas of abnormal bone formation that are easily broken. Both can lead to bone pain, fractures, spinal cord compression and hypercalcemia, abnormally high levels of calcium in the blood.
Chemotherapy and hormonal therapy are used most often to treat bone metastases. Bisphosphonates supplement those treatments. Radiation helps alleviate pain.
When Lauralee Krabill, of Sandusky, Ohio, was diagnosed at 48 with metastases to her bones, she had her ovaries removed—making her postmenopausal—so she could take an aromatase inhibitor. At the same time, Lauralee’s doctor started her on zoledronic acid (brand name: Zometa), a powerful bisphosphonate.
Some bisphosphonates are given by pill; those used to treat bone metastases are usually given intravenously. Bisphosphonates are more effective in treating osteolytic metastases than osteoblastic metastases.
"Bisphosphonates in the setting of breast cancer metastasis are associated with less pain, fewer pathological fractures, less requirements for radiation for painful metastasis and decreased hypercalcemia," Dr. Shapiro says.
Although many women take bisphosphonates, Dr. Shapiro notes that much still isn’t known about their use to treat or prevent metastases, or to counter bone loss. Other questions persist: which bisphosphonates to use in what settings, how frequently to dose, and how long treatment should be given.
"The longer you treat, the more risky it is for osteonecrosis," says Dr. Shapiro. That rare, but serious, side effect causes an area of jaw bone to lose its blood supply, creating tooth loss and exposed bone. Nearly all cases of osteonecrosis linked to bisphosphonates happened in people receiving high-dose intravenous treatment. The condition often develops after a tooth extraction or dental surgery. Before starting bisphosphonates, have dental or jaw problems treated and maintain good oral care.
Because of that risk, Lauralee’s doctor took her off the bisphosphonate she had been on for almost four years. She switched to calcium and vitamin D. She has PET (positron emission tomography) scans every six months, which so far have shown no hyperactivity in her bones.
Still, bone health remains a concern. "I’m a little extra careful," she says, because "the metastasis could cause me to fracture a bone. And I would be in surgery, having treatment for the bone fracture, when my breast cancer’s under control."
Knowing the Score
Discussions about bone health usually focus on bone loss, but Dr. Shapiro says it’s "more important and relevant" to know how your bone loss, over time, relates to a T-score. That number is defined through DEXA scans or other bone mineral density tests. (Those differ from bone scans given to detect metastases.)
Your T-score compares your bone mass to that of a healthy 30-year-old. A score of minus one (-1) or higher (0, 1, 2) is normal. From -1 to -2.5 indicates osteopenia; below -2.5 is osteoporosis. "Changes in the T-score are more accurate and reflective of fracture risk than bone loss per se," Dr. Shapiro adds.
If your T-score indicates osteoporosis or even osteopenia, your doctor may recommend a bisphosphonate. Women in the normal range and even some with bone loss should take daily calcium (1,200 mg) and vitamin D (400 IU), to aid absorption.
Lifestyle can strengthen your bone health. Improve your diet with calcium-fortified products and by adding yogurt or nonfat dry milk to recipes. Weight-bearing physical activities like walking, running and lifting weights help build bone. Building balance through tai chi or yoga can help prevent falls and broken bones. Eliminate smoking and heavy drinking.
Since her diagnosis in 2003, Donna has been on a bisphosphonate, takes calcium, walks 45 minutes and drinks water containing added calcium.
Earlier this year, a DEXA scan showed her osteopenia had improved. "Which was really good, because they want it to at least be stable," she says. "It was a small improvement, but all this stuff is really working."
Facing the Future: Coping with Fear of Recurrence
Beth Cordingley, of Tulsa, Oklahoma, felt relieved when she finished treatment. For the next two years, she remained peaceful when she went for checkups and even looked forward to receiving results of her blood work.
But after the third year, something changed. As her yearly appointment drew closer, she became anxious and irritable and had bad dreams.
"When you’re used to going in for checkups every three months, then every six months, then all of a sudden you’re only going in once a year, it’s spooky," she says. "With every ache or pain, I began to think something was happening that I didn’t know about."
Ronnie Kaye, MFT, a psychotherapist treated twice for breast cancer, says her fears started after her second diagnosis.
"As soon as treatment ended, I became very gun-shy," Ronnie says. "If I had a headache, I suspected brain cancer. If I had a backache, I worried that cancer had spread to my spine."
Fear of recurrence is one of the biggest challenges women face in moving on with their lives; sometimes it causes more anxiety than you may have experienced during treatment. But by learning what causes your fear, you can find ways to manage and integrate it into your life.
What Triggers Fear
Many women feel confident during initial treatment or adjuvant therapy because they feel they are actively fighting the disease. But what happens when treatment ends?
"I felt cast adrift into deep water," says Elizabeth Silva, of Los Osos, California, who was diagnosed in 2004. "I was a professional patient, and then all of a sudden my medical support team wasn’t keeping an eye on me all the time anymore. Being in their presence and receiving treatment was reassuring. When that ended, I didn’t know what to do with myself for quite awhile. I had to learn new routines, kind of reinvent myself."
When the fear begins, how it changes over time and how it manifests itself depends on many factors, including personality and coping styles, spiritual attitudes and level of social support.
Candyce Kamphaus, of Bensalem, Pennsylvania, lost her mother and other family members to breast cancer. So when Candyce was diagnosed in 2004 and discovered she had the BRCA2 gene mutation, her fear of recurrence set in right away.
"I wasn’t afraid of dying," she says. "I was afraid of the pain because of seeing my mother suffer through it. I had an 8-year-old son and wanted badly to raise him. I would dwell on it, and I felt very alone."
The fear consumed Candyce until she saw a therapist, who told her that even if she had a recurrence, the pain would be better managed than when her mother was treated.
"I wouldn’t have thought about the things I was thinking about had I not had the experience I did," Candyce says. "But I realize now that I’m not my mother, and there are treatments today that weren’t available in the 1970s."
For Elizabeth, it’s physical reminders that cause fear: "My reminders are the scar I feel when I shower, the numb skin I must shave carefully in my right armpit, the neuropathy in my legs and feet from a failed chemotherapy drug, the constant tenderness in my right breast, and the frequent doctor appointments—even if they have delivered good news thus far. The anniversary of my diagnosis also triggers an exceptional amount of anxiety."
Fear of recurrence affected Elizabeth’s family as well. "My youngest daughter was in a self-protective mode and pulled back emotionally from me. I felt abandoned, but I think she was so afraid that she didn’t know what to do," she says.
How to Cope
You and your caregivers may experience a range of feelings associated with fear of recurrence, including anxiety, depression, anger, lethargy, disappointment, grief, isolation and loneliness. These fears are a reasonable response to a traumatic period in your life.
Ronnie, who specializes in counseling those facing life-threatening illnesses, says there are five issues that contribute to fear of recurrence: fear of death, fear of dying, mortality, vulnerability, and questions about the purpose of life. By coming to terms with these issues, she emphasizes, you can put your fears to rest and enrich your life.
"Sometimes it helps to create a list of all the things that make you vulnerable. It turns out breast cancer is only one of many things on the list, which allows you to shift your focus and appreciate that vulnerability is a fact of life for everyone, not just cancer survivors," she says.
To get past her fear, Beth reprioritized her life. She decided to enjoy every day so she wouldn’t waste time engulfed in concern and worry.
"It’s important to remember there are others out there who feel exactly the same way," Beth says. "You need to have someone you can talk to in confidence. If you stuff it inside, it will only cause problems."
Elizabeth agrees. "Fears that fester in the dark are so much worse than those exposed to the light of recognition," she says. "I created my own support group by building an email list of friends I knew I could count on. When I felt isolated, I would send an email to this list and get a flood of individual responses."
She also speaks about her fears with her husband, Victor: "We use those moments to express to each other how tremendously we cherish each other and our marriage. We have become more tender with each other as a result."
You may need professional help if your fear keeps you from moving on. Some women are at risk for clinical depression, which may be compounded by the side effects of some treatments.
"Fears of recurrence are certainly understandable, but if your fear begins to interfere with your ability to live, love and laugh, it’s time to seek professional help," Ronnie says.
Elizabeth consulted a psychologist, who helped her family to reconcile emotionally and deal with their fear of the future.
"Part of reconciling us was to reassure the children that I was going to do everything I could to get and stay healthy," she says.
You can also cope with the fear of recurrence by being your own best advocate. "Women should insist that their fears be treated with respect by their doctors," Ronnie says. "Start a chart with two columns. One should say ‘yes cancer’ and one should say ‘no cancer.’ Each time you see the doctor for an ailment and it’s not cancer, check the ‘no’ column. You need to actively teach yourself that your body can have aches and pains that are not cancer."
Eating a balanced diet, exercising regularly, avoiding smoke and limiting alcohol are positive ways to maintain your health. Deep breathing and relaxation exercises can help calm anxiety. Also helpful: staying current with breakthroughs related to breast cancer and spending time with upbeat people who share your experience.
The most important thing is to be easy on yourself. "The worry may always be there, because you can never really forget you had breast cancer," Elizabeth says. "You need to make a conscious effort to do things that are good for you and that you can control, and let go of the things you can’t. I’ve realized that my job is to live each moment the best I can—savor it, treasure it—and leave the rest up to God."
Profile: Catherine Panzarella: Making Tough Medical Decisions with Help from LBBC
Catherine Panzarella, PhD, calls herself the "poster child" for early mammograms. Catherine, 42, was diagnosed late last year after tests confirmed cancer in a suspicious area of her breast.
For Catherine, who is married and has two young children, the diagnosis was both expected and unexpected. Her mother had been treated for breast cancer a year earlier, and several relatives on both sides of her family had a history of breast cancer at a young age.
"In the back of my mind, I thought I might have to deal with breast cancer at some point in my life, maybe in my 60’s," Catherine says. "I never thought I would have to deal with it that young."
Because of her age, Catherine assumed her doctor would recommend a mastectomy. Instead, she learned she had several options. Her physician said she could have a lumpectomy followed by five years of hormonal therapy with tamoxifen, since Catherine’s cancer tested positive for hormone-sensitivity. She also recommended Catherine meet with a genetic counselor to discuss genetic testing.
Catherine’s choices became even more complicated when she learned her first surgery had not resulted in clear margins (removal of all cancer from her breast), making mastectomy a possibility once again. To make matters worse, because of difficulties with her insurance company, Catherine had to wait more than two months for results of genetic tests.
"I was through the roof," Catherine says. "I thought, ‘My whole treatment decision is based on the results of this test. How can you do this to me?’ In the end, I finally gave up and decided to look into all my options."
While she waited, Catherine weighed whether to have a lumpectomy or a mastectomy. With a lumpectomy, Catherine would need tamoxifen, which carries an increased risk of developing endometrial (uterine) cancer, a disease that also runs in her family. With a mastectomy, Catherine could avoid chemotherapy and hormonal therapy altogether because her cancer had been found so early, her doctors said.
Just as Catherine started to lean one way, she learned she had tested negative for the BRCA1 and BRCA2 genes, the two genes known to increase a woman’s risk for developing breast cancer. Because of the prevalence of breast cancer in her family, though, her doctors said family history might still be at play.
Armed with this new information, Catherine saw a reconstructive surgeon. She began to think about removing both breasts, or having a prophylactic (or preventive) mastectomy, the removal of a healthy breast to lower the risk of developing a second breast cancer. Not everyone supported her choice.
"People told me I was crazy for getting both breasts removed," Catherine says. "There were times I wanted to punch people who questioned my choices."
One thing that helped was connecting with Living Beyond Breast Cancer. One of Catherine’s friends suggested she contact LBBC, but she didn’t see a reason to do so. Her family and friends had rallied around her, and she thought she had so much support she "wouldn’t need something like LBBC."
The friend persisted, and Catherine relented after speaking with an LBBC staff member. The connection turned out to be important to her decision-making process.
"My impression was that this kind of help is for later, but LBBC is really the first place you should call," Catherine says. "You get so much conflicting information. LBBC helped me take a long view. They had a different perspective in helping me see I would take steps and eventually the breast cancer would be behind me."
Through LBBC’s Survivors’ Helpline, Catherine connected with another woman who had been recently diagnosed. The woman was a few months further along in her treatment, and sharing her experiences helped Catherine to see "this is what I’ll be doing in a few months…[what I’m feeling now] won’t bother me," she says.
She also met two women who offered to show Catherine their reconstructed breasts. "This was such a gift to me," Catherine says. "Pictures of [mastectomies] look really scary. After [one woman] showed me hers, I kept that picture in my mind. It got me through so much, [having a sense] of what it would look like a year later."
In the end, Catherine decided a double mastectomy was the best route for her. "Getting a double mastectomy was really hard, and I’m still recovering in some ways," says Catherine, whose surgery was four months ago. "But it was important to me to avoid tamoxifen because of my concern about uterine cancer, and to be able to avoid chemotherapy."
After surgery, Catherine took two months of medical leave from her job at the Mental Health Association of Southeastern Pennsylvania. She spent most of that time with her five- and eight-year old daughters. She was concerned about her older daughter, whose elementary school principal had died recently from breast cancer.
"Ironically, I think all the talking about it and processing it [at school] made it easier," Catherine says. Her daughter also saw her grandmother do well with her own treatment for breast cancer, so she "understood there were different outcomes."
Her younger daughter struggled more because of her level of emotional development. "Because of her age, she was frustrated. We would try to explain things, and she would say, ‘I don’t understand. I don’t like cancer and I want it to go away.’ She needed things to be concrete. She felt better when I went back to work, when her schedule was regular again."
Catherine advocated for physical therapy, which increased her strength far faster than she expected. She continues to experience some discomfort, but she says she understands it will take a while for her body, and her mind, to settle into her changed life.
"I’m grateful for my life; I’m grateful for my friends and family," Catherine says. "Life seems back to the old, but I’ve been infused with the idea that every day is a gift, and that does affect me."
For guidance, information and peer support in a confidential setting, call our Survivors’ Helpline at 888.753.5222.
