Publications
Insight, Winter 2007/2008
Our last issue of 2007 contains articles on understanding hormonal therapies and coping with your emotions after initial treatment ends. Read a profile of Bob Casey, who cared for his wife during her treatment for early-stage breast cancer. The Clinical Trials Update focuses on studies that may further understanding of triple-negative breast cancer.
Table of Contents
Understanding Hormonal Therapies
Hormonal therapies are a powerful weapon against hormone-sensitive breast cancer, but with so many choices, how do you know which treatment is right for you? Understanding how hormonal therapies work will help you talk with your healthcare team and empower you to ask questions about side effects that could impact your health and quality of life.
Estrogen: Friend or Foe?
Hormones have an important job, but sometimes they need a new set of directions for carrying it out. Hormonal therapies, or medicines that add, block or remove hormones, provide those directions.
Estrogen is a female sex hormone that plays a vital role in human life. It develops sexual organs, regulates the menstrual cycle, keeps bones strong and skin soft and prepares the body for pregnancy.
Human beings need estrogen to live, even after the reproductive years end. During youth, the ovaries do most of the work to produce estrogen. After menopause, when the ovaries stop working, an enzyme called aromatase takes over. Aromatase is found in cells in the adrenal gland (near the kidneys) and in the brain, ovaries and body fat. It converts the male hormone testosterone to estradiol, the most powerful form of estrogen found in the body after menopause.
Normally, the breasts have an "off" signal that tells them to stop producing estrogen. In some breast cancers, the "off" signal stops working. The cells keep growing, forming a tumor. These types of breast cancers may be called "hormone sensitive" or estrogen receptor (ER) positive.
Hormonal therapies interfere with communication between estrogen receptors and cells, sending a message to the cells to stop growing. Different medicines send different instructions, but they all have the same goal: to stop estrogen from allowing breast cancer to grow.
"Estrogen is the fuel, the gasoline, driving cancer inside the breast," says V. Craig Jordan, OBE, PhD, DSc, vice president and research director for medical science at Fox Chase Cancer Center, in Philadelphia. "Hormone therapy stops the gasoline from driving this fuel inside the breast."
ABCs of Hormonal Therapy
For many years tamoxifen, a selective estrogen receptor modulator (SERM), was the standard treatment for ER positive breast cancer. Tamoxifen, a pill, works by filling in spaces on the estrogen receptor and blocking the ability of estrogen to stimulate the cells to grow.
Because tamoxifen blocks estrogen already there, it must be taken every day to have an impact. Clinical trials have shown that taking five years of daily tamoxifen after surgery protects you from a recurrence for ten, 15 or more years. People of all ages who have any stage of breast cancer may take tamoxifen, but it is the only hormonal therapy approved for pre-menopausal women. If you take tamoxifen for advanced breast cancer, you may take it as long as it keeps the cancer from growing.
Tamoxifen and other hormonal therapies may cause menopausal side effects like hot flashes, vaginal dryness or discharge and moodiness. Unique to tamoxifen are two rare but serious side effects, an increased risk of blood clots and endometrial (uterine) cancer. These serious side effects apply only to post-menopausal women, Dr. Jordan says, and your chances of developing them shrink if you "have no history of clotting, exercise regularly or have had a hysterectomy."
In the last decade, researchers have created aromatase inhibitors (AIs), a new type of hormonal therapy pill that does not carry an increased risk of endometrial cancer. Studies show AIs offer several more months of overall survival over tamoxifen, so they have become the gold standard treatment for post-menopausal women with ER positive breast cancer. AIs are effective in both early-stage and advanced breast cancer.
AIs work by blocking the aromatase enzyme to stop converting other substances in the body into estrogen. Unlike tamoxifen, which blocks estrogen activity already in the body, AIs keep the body from producing estrogen in the first place. Only post-menopausal women should take AIs.
Three AIs are available: letrozole (brand name: Femara), exemestane (brand name: Aromasin) and anastrozole (brand name: Arimidex). For early-stage cancer, letrozole and anastrozole may be taken daily as adjuvant (post-surgical) treatment for five years. Exemestane may be taken daily for two to three years after two to three years of daily tamoxifen, for a total of five years of treatment. Letrozole also may be taken daily for five years after five years of tamoxifen, for a total of ten years of therapy. If you have advanced breast cancer, you may take AIs as long as they keep the cancer from growing; if one AI stops working, your doctor may switch you to another one.
"There is no difference [in effectiveness] we know of among the three [AIs], but we have not tested them head to head," says Dr. Jordan. "Those experiments still have to be done."
Possible side effects of AIs include upset stomach, painful or aching joints, higher blood cholesterol levels and bone thinning (osteopenia). Osteopenia results from the AIs’ effectiveness at decreasing circulating estrogen, which helps keep bones strong. Researchers are trying to understand why AIs may prompt joint pain and higher cholesterol.
Before you start an AI, you and your doctor should discuss your risks for side effects, such as a personal or family history of heart disease or osteoporosis. Your doctor will test your blood cholesterol and bone health (using a bone density test) before and during treatment. You also may decide to take a medicine called a bisphosphonate that strengthens and builds bone.
Making Decisions
To choose among hormonal therapies, start by talking with your doctor about the biology of your cancer, your overall health and your lifestyle.
Joan Schiffer Levinson, 51, of Fanwood, New Jersey, just completed five years of tamoxifen and soon will begin a five-year course of letrozole. At the time of her diagnosis with stage I, ER/PR positive breast cancer, tamoxifen was the standard treatment for postmenopausal women like her. But when researchers announced positive results about anastrozole several months into therapy, she wondered whether she should switch.
"I was struggling because I was afraid of the side effects of tamoxifen, the blood clots, the endometrial cancer," Joan says.
Joan consulted with her doctor, who reassured her that tamoxifen was an excellent choice because she is at low risk for its most serious side effects because of her younger age, weight and fitness level.
Personal and family health history should be an important part of your decision-making. A. Lynne Wagner, EdD, RN, MSN, 61, of Chelmsford, Massachusetts, considered tamoxifen when she was diagnosed three years ago with stage I breast cancer.
Ultimately, Lynn chose anastrozole for two reasons: her grandmother had a history of endometrial cancer, and Lynne frequently flies, putting her at higher risk for developing blood clots. Lynne weighed the benefits of AIs against the potential side effects, since she had pre-existing osteoarthritis in her hands.
"I decided if I got osteoporosis, at least there is medication I can take for that," Lynne says. "If I got a blood clot and it goes somewhere [and causes an embolism, a clot blocking oxygen to the brain, heart or lungs], it’s much more serious and there’s nothing I can do."
Studies have suggested one of the AIs, exemestane, may pose fewer risks to the bones. Cynthia Wheelehan, 49, of Carrollton, Virginia, knew her mother had been treated for breast cancer 20 years ago and later developed debilitating osteoporosis. And tests revealed Cynthia had lost 8 percent of the calcium in her bones in just three years.
Because her cancer had not traveled to the lymph nodes, Cynthia’s doctors told her she could reasonably skip hormonal therapy. But when they told her exemestane could decrease her risk for recurrence from 15 percent to 3 percent, she decided to try it.
"I called Mom, and she told me to do everything I could to never go through this again," Cynthia says. "So [hormonal therapy] just made sense to me."
Coping with Side Effects
Talk to your healthcare team about solutions to manage side effects; some may be easier than you think. Initially, Joan took tamoxifen at night, but in the mornings she felt too dizzy to drive to work. Her doctor changed her prescription so she could take half the dose in the morning and half at night. The dizziness stopped, and she never had a problem again.
You should not ignore side effects that make you uncomfortable or keep you from living life to its fullest. You may be able to switch to another hormonal therapy or manage the side effects with medication, complementary therapies or lifestyle changes.
Jackie Walton Siler, 58, of Bainbridge Island, Washington, switched from anastrozole to letrozole. While training for a three-day breast cancer walk, Jackie developed "horrible shin splints that wouldn’t go away," she says. "I’d stretch and do everything I knew to get rid of it. It didn’t help."
Jackie knew bone pain could result from taking AIs, so she consulted her doctor. After switching to letrozole, the pain stopped, allowing her to complete part of the walk.
Learning about hormonal therapies and communicating with your healthcare team are key. "Gather as much information as you possibly can, but don’t make any decisions based upon other people," says Joan. "It’s not about your next door neighbor or your sister or cousin, because even though the situations may look the same on paper, it’s not the same as yours. You have to look at your situation and your doctor’s advice to you."
Treating Metastatic Cancer
If you are living with ER positive advanced cancer, hormonal therapies may be a vital part of your treatment. They may be taken with other treatments or on their own. When one hormonal therapy stops working, you may be able to switch to a different one.
Rochelle Kelman, 56, of Morris Plains, New Jersey, was diagnosed with advanced breast cancer in 2002. After her chemotherapy stopped working, she began taking letrozole. She took the AI for three years, until she had another recurrence. She then took exemestane and anastrozole in turn, until her doctor recommended a chemotherapy medicine that would directly treat the tumor.
"Femara gave me three good years, with a good quality of life," Rochelle says. "It gave me three years without chemo—I was grateful to have it be part of my arsenal."
In addition to tamoxifen and the AIs, fulvestrant (brand name: Faslodex) offers another option for metastatic cancer. Fulvestrant, a selective estrogen receptor downregulator (SERD), is a "second-line therapy," or a treatment given after the standard treatment has stopped working. Fulvestrant, given by injection, works by binding to the estrogen receptor and blocking signals that make a breast cancer resistant to hormonal therapy.
A ‘Hope Pill’
If you aren’t accustomed to taking pills regularly, you might worry about forgetting to take your hormonal therapy. You might even feel distress because pills remind you every day of breast cancer.
"Emotionally, I hate taking medication," Lynne says. "It took me a while to decide to take it. I would swear at it every morning when I had it in my hand."
Lynne’s doctor helped by reminding her that her AI was cutting her risk for recurrence by 50 percent.
"Now every morning I ‘greet’ the little pill and call it my ‘Hope Pill,’" she says. "It’s made a big difference in my coping, accepting the medication in a more positive way."
Make hormonal therapy part of your routine. Take your pill at the same time every day, or take it at the same time you carry out other activities like brushing your teeth or turning down the bed.
Finances can be a consideration, especially if you take one of the brand name AIs. Most private and government health insurance will cover all but the co-pay. If you have little or no insurance, talk with your doctor. The companies that manufacture AIs have patient assistance programs.
Side effects are the likeliest reason women stop treatment—one study revealed that between one-third and one-half of women on tamoxifen stop taking it before completing five years. But stopping early comes at a price.
"We know absolutely that if you do not take five years of tamoxifen, your chances of having a recurrence change dramatically," says Dr. Jordan.
Although less data exist on the long-term impact of AIs, evidence of their effectiveness comes from studies in which women took the medicines every day for five years. To ensure you get the full benefit of hormonal therapies, keep lines of communication open with your healthcare team. They can explore ways to help you prevent or manage side effects.
"Before, tamoxifen was the only game in town," Dr. Jordan says. "Now the doctor can match the patient with the right medication based on the severity of disease, the physical status of the woman and the risk of side effects."
Assisting a Loved One: Portrait of a Caregiver
One evening in April 2003, Bob Casey, an avid motorcycle enthusiast, was preparing to ride his Harley from his family’s home in the Denver suburbs to San Francisco. His wife, Linda, had planned to fly out and meet him a few days later. Bob owned a sales and marketing business, and Linda worked full-time as a director of operations support. They were parents of two school-aged children.
As Bob was gathering his things, Linda came out of the bathroom and told him she had found a lump in her breast. Although doctors had discovered benign calcium deposits in her breasts before, Linda felt this lump was different—it grew fast, seemingly overnight. She was worried.
After seeing a doctor, they went to San Francisco, where they got the call. Linda had stage 2 breast cancer. She was 39 years old.
"When things operate normally for so long and you get news like this, it’s devastating," Bob says. "It was very emotional. Tears were shed, and things were very uncertain. What was going to happen from here?"
Because he considers the family private, Bob initially decided to tell the news only to a few people, including his business partner, a close friend.
"I told him not to say anything, and his response was, ‘Why? Use the power of prayer, Bob.’ We’re not super religious people, but I’m glad he said it," Bob remembers. "We have a lot of friends and contacts. After I told people about Linda’s diagnosis, I was overwhelmed by the support we received."
Bob’s thoughts then turned to their son and daughter, who were ages 10 and 14 at the time.
Bob and Linda decided to tell the children together when they returned from their trip. Since the Caseys always ate dinner together, it was natural for them to discuss the diagnosis at the dinner table. Bob told the children that not only their mother, but the whole family, would have to cope with cancer. He emphasized they must work as a team. Although they shed tears, the children rallied behind Linda.
"The kids were incredible," Bob says. "During Linda’s chemotherapy treatments, both our daughter and our son cut their hair short to support her."
Linda underwent a double mastectomy with reconstruction, followed by chemotherapy. Bob was her primary caregiver. Because he wanted Linda to make getting better her primary goal, as she began chemotherapy, Bob encouraged her to take a leave of absence. He emphasized the need to take things one day at a time, one treatment at a time, to keep from becoming overwhelmed by the total number of treatments.
"After one of Linda’s early consultations with her oncologist, she became very upset when she heard her cancer had a 50/50 chance of coming back after chemotherapy. She began to shut down," Bob says.
During their drive home, he tried to help her focus on the things she could control at that moment. "I told her, ‘we can only play the game we’re in right now. We can’t play next weekend’s game,’" he says.
Bob was concerned that Linda’s treatments might have long-lasting effects on her health, and he feared he did not understand enough about cancer to know whether Linda was on the right treatment path. However, he realized he had to trust the doctors and nurses.
"I am used to having more control and driving processes, and I felt like I didn’t have any in this situation," he says.
Throughout Linda’s treatment, Bob incorporated as much spontaneity into their relationship as possible. One day, when Linda had a particularly hard time at chemotherapy and wanted to quit treatment, Bob took the family on a last-minute trip.
"I never stopped talking about the future, and I tried to get Linda out of the house as much as possible," he says. "At times it got hard and she got down, but I was pretty firm with her. I told her, ‘We’re going to get through it.’"
Bob credits the support of friends and family with helping him cope—if he was getting blue, he always had someone to talk to. Bob also tried to keep busy and stay active throughout Linda’s treatment by working on his motorcycle in the garage and going out for rides. He tried to get plenty of rest, keep his stress levels low and continue his daily activities to maintain as much normalcy as possible.
"As I watched Linda go through this illness, it did cross my mind from time to time, ‘What if she doesn’t make it? How would I do it alone, with the kids?’" Bob says. "It was scary, but I tried to keep those thoughts at a minimum and take it one day at a time. I’m a pretty determined person. I never lost hope."
Four years later, Linda is healthy and has no evidence of cancer. The Casey family has become more health-conscious—and much closer to each other—than they ever were before. For Bob, becoming a caregiver was a life-changing experience. It made him realize how short life can be, that he needed to enjoy it and not take the people around him or anything else for granted, because "everything can change in a split second."
"Everyone talks about weddings and big trips as the life events that matter most to them. But it’s the small stuff that really matters—I appreciate things like getting up and having coffee on a Sunday morning much more," Bob says. "When Linda was ill, she couldn’t get up and do those things."
Bob’s fear has also subsided. "It’s still in the back of my mind," he says. "But with every day that passes, every blood test that comes back okay, it gets less and less. I’m looking forward to growing old with her."
When Treatment Ends: Managing Your Emotions After Breast Cancer
At follow-up appointments since completing chemotherapy in 2002, Vicki Brown, of Wilmington, Delaware, had heard only good news. So when she had her five-year appointment last spring, Vicki, 57, expected this milestone visit to be equally encouraging. But a suspicious area in a chest x-ray prompted several months of medical tests.
"All summer, on and off, I would have incredible anxiety right before getting test results," she says. "I would have a rapid heart rate, difficulty concentrating on anything and difficulty sleeping. I feared it would be bad news."
Vicki was not diagnosed with a recurrence, but the tests prompted intense anxiety and depression she had never experienced before. She remembers thinking, "What am I going to do if the cancer comes back?"
Vicki’s response is not uncommon. After initial treatment ends, you may find you experienced breast cancer as a trauma. Coming to terms with your changed body and emotional life can make you feel numb, vulnerable, angry or overwhelmed. Everyday aches and pains can evoke fears of recurrence, and you may feel you are no longer actively fighting the disease once you finish chemotherapy, radiation or hormonal therapy.
A variety of strategies can help you improve your mood and functioning. Understanding your emotions and responses can help you recover from the trauma of diagnosis and move on with your life.
Fight or Flight?
Your emotional response to breast cancer may be shaped by your personality, health history and mental health history, as well as the amount and type of support you get from family and friends. These factors may contribute to your emotions months, or even years, after treatment ends.
A trauma like breast cancer thrusts you into confronting issues of life and death, says David Sachs, MD, a member of LBBC’s Medical Advisory Board and an analyst at the Philadelphia Center for Psychoanalysis with a special interest in the traumatic consequences of a cancer diagnosis. Trauma can prompt "feelings of fright" that cause common stress symptoms like those Vicki experienced.
"It is difficult to respond at the time of the diagnosis because you have to hold yourself together emotionally to go through the treatment," Dr. Sachs says. "After treatment, when the person finds something that reminds them of the initial diagnosis, that causes an intense emotional reaction that was not experienced at the time the diagnosis was made."
These reminders come in a variety of forms, including mammograms, physical symptoms, anniversaries of your diagnosis, milestone events, holidays or follow-up appointments. You may be surprised that happy occasions bring back feelings of anxiety or sadness. Cancer can deal a deep blow to your sense of security, and it may take a while for you to recapture it.
"After a person experiences a trauma, one option is to become very strong and say, ‘I’m not afraid of anything at all anymore.’ This is frequently described as the ‘fight’ response," Dr. Sachs says. "The other option, the ‘flight’ response, is to withdraw and say, ‘I’m defeated and I’m afraid to do anything.’"
When she found out she had breast cancer, Sarita Jordan, 39, of Philadelphia, a single mother with three children, had just finished her paralegal certification and returned from a family trip. She experienced intense side effects from chemotherapy and radiation, but she dealt with her cancer in a matter-of-fact way so she could keep up with her hectic schedule.
Seven months after treatment was over, however, Sarita retired as a supervisor at the Pennsylvania Department of Public Welfare to deal with her emotions. She constantly feared the cancer would come back. And when her doctor suggested she terminate a pregnancy because of her risk of recurrence, Sarita was devastated.
"I couldn’t get out of the bed," she says. "I was emotionally drained, almost like being sucked dry. I constantly asked myself, because I didn’t deal with the emotions before, ‘Why me? Did I do the right thing?’"
For several months, Sarita was consumed by fears and questions about her baby and mortality. She got up only to shower and to get her kids off to school. Her older children prepared meals, and her younger son brought his homework questions to her bed.
"Because I didn’t have the type of family support that I thought I should have had, I worried, ‘What would happen if this cancer came back and I wasn’t around?’" Sarita remembers. "Who would care for my children?"
Sarita’s response to her fears of recurrence is "a typical post-traumatic reaction for people who went through initial diagnosis so unemotionally," Dr. Sachs says. If you have a similar response, learning how to experience the emotions you missed during diagnosis and treatment can help.
Moving Forward
There is no "right" way to respond to a cancer diagnosis. Breast cancer is a novel experience for most people, and it will take time to adjust to its presence in your life. Finding new coping skills or remembering old skills you used during past difficult times will help. You may also find it helpful to speak to a professional or ask for help, even though you may find it hard to do so.
Abby Grossman, 28, of Philadelphia, was finishing her master’s degree in social work and interviewing for a job when she was diagnosed with extensive ductal carcinoma in situ (DCIS). After a double mastectomy, radiation and reconstruction, she felt dissatisfied with her reconstructive surgery, which triggered some anxiety.
"It was so difficult losing something that was part of my identity," she explains. "I didn’t have realistic expectations of what would happen [when I had my reconstruction]. I thought the breasts would look perfect, but they didn’t."
Frustrated with her surgeon’s response to her concerns, Abby asked a friend to recommend another doctor. Her perception of her body changed when the new surgeon acknowledged Abby’s feelings and told her additional surgery might improve the appearance of her breasts. His understanding of her unique situation gave her hope and confidence to deal with her concerns about body image.
"The second reconstruction enabled me to continue moving forward with my life," she remembers. "It improved my self image, which led to an overall sense of closure. It was very empowering to realize that I had a choice in my treatment."
Tips to Move Forward
Many practical methods may help you move forward; tailor them to your interests and lifestyle. For example, improving your physical health provides a variety of benefits. Walking 15 to 30 minutes several days a week can enhance mood, sleep and energy. Plus, exercise strengthens your muscles and bones and can reduce anxiety. Complementary methods such as yoga, Tai Chi, meditation or massage can also encourage relaxation.
Eat healthy foods and avoid caffeine when you can because it can increase symptoms of anxiety. Getting a full night of rest or napping can help you manage your emotions during your waking hours.
Make sure to create time for yourself and to acknowledge your emotions. Communicate your needs to friends and family, and let them know when you need support—or when you need a few hours to yourself.
Set aside time to think or write about your experience, whether through journaling, blogging or LBBC’s online message boards. Reading stories of other women who might share some of your feelings or experiences often eases fears that you are alone.
Vicki, an LBBC Survivors’ Helpline volunteer, found that talking to others about cancer helped her move forward. At her job as a training and development director at an international insurance company, she volunteered to speak with others dealing with cancer.
"It helps me step outside what I am feeling or fearing and help others," she says. "Talking about it makes it less scary."
Connecting with other women and building a support system helped Sarita turn the corner. During her days in bed, Sarita read Spinning Straw into Gold: Your Emotional Recovery from Breast Cancer by Ronnie Kaye, MFT. The book helped her understand that some of her fears about breast cancer were common. When Sarita found out Ms. Kaye would be speaking at the 7th Annual Conference for Young Women Affected by Breast Cancer, she decided to attend.
"Being in the workshop, ‘Finding Your New Normal,’ helped a lot," Sarita says. "Ronnie Kaye helped me understand that it’s okay to feel awful; it’s normal."
With the knowledge that she was not alone and with the support of her children, close girlfriends and an aunt, Sarita realized that she had to get up and prepare for the birth of her baby. She sought out the opinion of her oncology team and learned that she was safe to go forth with her pregnancy. She also prayed with her support group, Women of Faith and Hope.
Getting More Help
Many people experience feelings of sadness or distress, but if you think you may have an anxiety disorder or clinical depression, you should get medical attention.
A number of healthcare professionals can help you learn to manage your emotions. Your primary care physician, oncologist or oncology nurse are a good place to start, and they may recommend that you talk to an oncology social worker, psychologist or psychiatrist. You also can seek out these professionals on your own. In some cases, mental health professionals may prescribe medications to help you cope.
Different practitioners use different methods to help you. In a typical therapy session, Dr. Sachs, a psychoanalyst, helps his clients understand how their emotional reaction reflects the values they have developed as a result of past emotional or medical situations. Post-traumatic symptoms are normal and understandable after the trauma of diagnosis, he explains.
Other methods include helping you figure out what "triggers" an emotional response and teaching you ways to cope differently with those situations.
Sarita was surprised to find an improvement in her emotional state when she attended therapy with her son, who was having difficulty coping with his mom’s cancer. Vicki saw a social worker, who served as "a great resource to validate things and bounce ideas off of."
Sometimes just talking can help as you make your way through an especially difficult time in your treatment or recovery. We receive hundreds of calls each year on our Survivors’ Helpline from women having difficulty "moving on" after treatment ends. Call 888.753.5222 to talk to someone who has been there.
Resources for the Future
Volunteering is another avenue to enhance your quality of life. Sarita and Abby served on an advisory committee for LBBC’s Guide to Understanding Your Emotions, a brochure we will release in early 2008 to help you understand the range of emotions you may experience.
The brochure contains detailed information about how treatment impacts your emotions, understanding anxiety and depression, places to go for help, talking to your doctor, when to consult a mental health professional, paying for mental health treatment, taking medications and moving forward with your life.
"Working on the anxiety and depression brochure, and reading what the steps are to moving forward, helped confirm to me that I’m taking the right steps necessary to heal and to be better," Sarita explains. "At the same time, it helped me focus on something else."
Pre-order your free copy of the Guide to Understanding Your Emotions.
