Publications
Insight, Summer 2003
Get practical tips to manage the acute side effects of breast cancer treatment and review a checklist you can take to your doctor''s appointments in the summer 2003 issue of Insight. Other articles discuss coping with early-onset menopausal symptoms, clinical trials on aromatase inhibitors and a profile of a younger woman who drew on family, friends and neighbors during her breast cancer treatment.
Table of Contents
Practical Tips for Managing the Side Effects of Your Treatment
The prospect of post-surgical treatment—chemo, radiation, hormone or biologic therapy or a combination of these—is daunting, and can be frightening. Many women tolerate the treatments very well and have few uncomfortable side effects. There are many medicines available for use in chemotherapy. Some have few side effects and are easy to use. Others may have significant side effects that can be addressed with appropriate medications and advice.
At a recent conference, Living Beyond Breast Cancer conducted an informal survey about managing a wide range of side effects. This article addresses the side effects women affected by breast cancer most frequently cited and offers advice on how to deal with them.
"Knowledge is power. Getting the answers to your questions and concerns as they arise for you is important to your recovery and your attitude," advises Elizabeth Friedman, MD. A pediatrician in private practice, Dr. Friedman was diagnosed with breast cancer in 2001. "I tell women to go slowly and take one step at a time. Don’t be afraid to question anything that is happening to you. Remember that your treatment, whatever the form, is temporary and its purpose is to give you the rest of your life."
Here are some common side effects and what you can do to help alleviate them:
Nausea and Vomiting
Both can occur soon after treatment. A number of effective anti-emetics (anti-nausea medications) offer relief, among them Zofran, Kytril and Anzemet. The most common adverse reactions include constipation and headache. "These are excellent anti-nausea medications. Their main advantage is that they do not cause drowsiness, like most other anti-emetics," says Julie R. Gralow, MD, associate professor of medical oncology at the University of Washington School of Medicine and co-chair of the Southwest Oncology Group Breast Committee.
"Zofran ODT [oral disintegrating tablet] is currently the only drug available which can dissolve in your mouth—the medication is absorbed through your upper GI mucosa," says Dr. Gralow. "You don’t have to swallow the tablet [whole], which is a big plus if you are terribly nauseated. If [you cannot] take pills due to nausea, [you] can also get anti-nausea medication through an IV, a rectal suppository, or a patch."
Two medicines recently approved are Emend and Aloxi. Ask your doctor for information about these and other medications. Some of them are effetive at preventing nausea on the days following your treatment.
"Head [nausea] off at the pass," says Lillie Shockney, RN, BS, MAS, director of education and outreach at the Johns Hopkins Breast Center in Baltimore, Md. Shockney, a breast cancer survivor, and her mother co-founded the organization Mothers Supporting Daughters with Breast Cancer. "Get a prescription for an anti-emetic in preparation for your chemo and use it as directed."
Decadron, a steroid, extends the effectiveness of anti-emetics and helps to avoid headache after you stop using them, Shockney says.
"Eat small rather than heavy meals," she says. "Avoid spicy, fried and fatty foods, as these trigger nausea. Stay well hydrated, drinking water, tea and ginger ale at room temperature."
Your doctor may be able to give you samples of different anti-emetics to see which works best for you, says Dr. Friedman. "If Zofran makes you sleepy or groggy, like it did me, try another. And if you experience a change from what is normal for you as far as bowel movements, work with your doctor to find a solution."
For constipation, drink plenty of liquids, have stool softeners on hand, eat high-fiber foods and exercise. For diarrhea, avoid high-fiber, spicy and fried foods, coffee, tea, alcohol and sweets. Eat high-potassium foods like bananas, oranges, peaches, apricots and potatoes.
Hair Loss
For some women, hair loss is the most difficult part of dealing with chemotherapy treatment because it is so visible.
"It’s a public marker for cancer," says Dr. Friedman. "I got a short haircut before my chemo started so I could get used to a change in my look. I also got fitted for a wig before chemo. This way my stylist could see my natural hair color and style for the wig design, and I’d have the security of knowing I had a wig ready if I felt I needed it."
Shockney believes that for some women, it helps to understand why they are losing their hair. Chemotherapy is effective at destroying rapidly growing cells; hair, skin and some cancer cells grow rapidly. "Unfortunately, chemo can’t distinguish the difference [between the cells]. It helped me look at my own hair loss from chemo as a sign that my chemo was doing its job.
"What I love to see are family and friends hosting ‘coming out’ parties—a shower for the head. Guests bring gifts of scarves and turbans and funny hats. It’s one way for those who care for you to cope with and share their own anxiety about what you’re going through."
Some women take control of when their hair loss begins. They shave their heads and wear turbans, hats and wigs. Or they go all the way and do a Yul Brenner. "You can have a party for this, too," says Shockney. "Friends, husbands and children sometimes get their own buzz cuts right along with [you]. This can help take some of the fear away, especially as experienced by children."
Shockney suggests avoiding hair dryers and chemical treatments like coloring and permanents in the two weeks before the start of chemotherapy treatments. "And because this is chemically and not genetically induced hair loss, avoid hair growth remedies like Rogaine. During chemo use very mild shampoo, soft hair brushes instead of combs, and sleep on satin rather than cotton pillowcases. I advise patients to remember that there’s a beginning and an end to chemotherapy. We can predict hair loss to begin 10 to 12 days after the first chemo treatment." Some women’s hair will begin to grow back during or near the end of treatment. Others will experience regrowth in the months following treatment. Either way, hair loss is temporary; it will grow back.
For tips on camouflaging facial hair loss with cosmetics and enhancing overall appearance, contact Look Good…Feel Better, a free program offered by the American Cancer Society.
Anemia and Fatigue
"The most common side effects of cancer treatment are anemia and fatigue," says Dr. Gralow. "Chemo affects all rapidly growing cells, including the cells in the bone marrow that make new red and white blood cells. Anemia results when the red blood cell count falls during treatment, causing fatigue. Procrit, Epogen and the new longer-lasting Aranesp stimulate the red blood cell precursors in the bone marrow and decrease anemia." The most common adverse reactions are diarrhea and edema (swelling).
Physical activity, planned in consultation with your doctor, can help prevent fatigue, says Shockney. "Choose a comfortable exercise that fits your lifestyle and is something you’d enjoy. Exercise also releases endorphins in the brain that act as natural pain killers."
"I exercised throughout my chemo," says Dr. Friedman. "Walking outdoors or on my treadmill was beneficial both mentally and physically. It helped me feel healthy and calm. It also helped to get a good night’s sleep."
Neutropenia (Fever) and Infection
"If the white blood cell count falls during chemotherapy," says Dr. Gralow, "neutropenia results, with infection the main complication. Neupogen and the new, longer-lasting Neulasta help keep the infection-fighting white blood cells in normal range."
These drugs also improve a low white blood cell count after an infection has already developed. Avoiding infection and lowered blood counts eliminate interruptions of the chemotherapy schedule and delays in your treatment. The most common adverse reactions to these drugs are mild to moderate bone pain and nausea/vomiting.
"Because your immune system may be compromised during chemotherapy, you need to take some precautions to avoid infection," says Shockney. "Become an avid hand washer. If possible, avoid crowds and settings where you are most likely to be exposed to germs and viruses. Avoid shaking hands. Use a soft toothbrush as gums are a primary way to introduce infection. Use lotion for dry, cracked skin; and use an electric razor versus a blade to prevent cuts and scrapes, another means to introduce infection. Make sure all foods are properly washed and cooked."
Your oncologist monitors your white and red blood cell counts throughout treatment and can tell you which days you may be most at risk for infection. During those times you may receive medications, or you may choose to plan your activities with your potential risk in mind. "When you know your window of highest risk, you can schedule safer times for travel and shopping," Shockney says.
Cognitive Dysfunction
Chemotherapy can, in some cases, cause problems with memory and concentration. Many women experience memory problems much like those linked to aging. They cannot remember where they put their keys or recall lists of things they planned to accomplish. Some report being easily distracted or losing the ability to calculate in their heads.
Studies suggest that the risk of mental impairment—sometimes called "chemo brain"—rises with the intensity of the chemotherapy. "Chemo brain is common during therapy but mostly reversible after treatment," says Dr. Gralow. "We are testing a ritalin-like drug for [those] affected by this."
Exactly how chemotherapy treatments might impair the mind is not known. There are questions as to whether chemotherapy is even entirely to blame. Some research suggests "chemo brain" may be caused by hormonal changes. "And some studies show it’s like post-traumatic stress syndrome," says Shockney. "We’ve gone to war against our cancer and we come back with the same psychological symptoms as soldiers."
Cognitive dysfunction is a hot topic among researchers. They seek to better understand what causes "chemo brain" and to develop treatments to reduce or minimize its effects. The subject will be discussed at LBBC’s next conference, on November 15 (see page 2 for details).
Menopausal Symptoms
It’s typical to experience some or all of the common symptoms of menopause as side effects of both chemo and hormonal therapy. They include hot flashes, night sweats, fatigue, headaches, insomnia, depression, osteoporosis, heart disease, loss of bladder control, weight gain, loss of sexual drive, vaginal dryness, and memory loss. When any of these symptoms arise, seek help. There are interventions that can prevent, minimize or manage these side effects.
Many women experience hot flashes when estrogen levels are reduced, either through natural menopause or through surgical or treatment-induced menopause. "Avoid spicy foods; they trigger hot flashes," says Shockney. "Foods like broccoli, cabbage and cauliflower, which contain bioflavonoids, seem to lessen the intensity of hot flashes. Wear loose cotton clothing and breathable fabrics in layers. Keep your home temperature at comfortable levels for you. And sleep on cotton sheets."
Keeping a log or diary of hot flash incidents can help you detect a pattern of trigger events, Shockney says. "Did you have a hot flash after exercise, cleaning, eating Mexican food, a hot shower? Modify your activities as needed." If your hot flashes are extreme, some anti-depressants, like Effexor, Paxil and Zoloft, have been found to decrease their frequency and intensity.
Most women can eliminate vaginal dryness by using over-the-counter creams and lubricants. For extreme discomfort, oral or vaginal medications can be prescribed. Check with your doctor before using products that contain estrogen. If you experience vaginal itching, avoid perfumed soaps and toilet tissues and wear cotton panties.
"Remember, menopause usually takes place gradually and your body has time to adjust," says Shockney. "Chemically induced menopause is sudden and unplanned. So have patience, pamper yourself and bring up your symptoms with your doctors to get answers to your questions and to seek relief."
Other Suggestions
"No one knows exactly how they will feel or react when starting chemotherapy, so it’s important to know the common side effects of your treatment regimen and how to manage them," advises Dr. Gralow. "Good communication with your chemotherapy team—doctors, nurses, pharmacists—is important in managing symptoms. Don’t wait until the next office visit if you are not feeling well. Severe nausea and vomiting are rare in breast cancer treatment with currently available anti-nausea medications. Fatigue is probably the symptom with the highest impact on daily life, and it builds with each dose of chemotherapy. Fever and signs of infection are the most critical symptoms to report. An infection can be life threatening if the white blood cells are low. If you have fever, chills or any other sign of infection, like a cough or sore throat, call your doctor."
"Chemo infusion feels cold. I found dressing warmly and in layers helped me feel warm during treatments," says Dr. Friedman. "Being warm also makes it easier to find the vein."
Mouth sores may occur following Adriamycin treatment. "Sucking on ice chips during treatment helped me avoid them," Dr. Friedman says. "Cytoxan left me with a bitter, metallic taste. I drank lemonade afterwards and stayed well hydrated. Sucking on hard candies also helped.
"Visualization is a technique I endorse. I found chemo quite scary and was anxious about how I would react to it. During my chemo I would visualize an army coming to do battle on my cancer. This helped me stay relaxed during treatments."
"A healthy diet, physical activity, and maintaining a good body weight are important after breast cancer diagnosis and treatment," says Dr. Gralow. "Caffeine and alcohol should be used in moderation, and there is no place for tobacco in a healthy lifestyle. We are not sure of the effects of phytoestrogens [plant estrogens, such as found in soy] on breast cancer cells. Some dietary soy is likely to be fine and may be good for you, but large doses of soy/phytoestrogen supplements should be avoided until they are better studied. Most menopausal women do not get enough calcium in their diets and are at risk for osteoporosis, so some additional calcium supplements are recommended. Certain alternative treatments may complement your medical treatments. They can help manage discomfort and stress and ease side effects. Yoga, massage, meditation, and support groups can help different [people] in different ways."
Some women use humor to ease the side effects of breast cancer. "Find something to laugh about," Shockney says. "Laughter actually helps build your immune system and eases pain."
This article reflects some of the more frequently reported side effects. It is not comprehensive.
Before Treatment Checklist
Ask your doctor if you are eligible to participate in a clinical trial.
Tell your doctor the medicines, herbs or preparations you take to see if they are safe.
Ask about treatment side effects and ask when you should call if they persist or worsen.
Ask your anesthesiologist for anti-nausea medication before surgery as a preventive measure.
Ask your doctor or nurse how you can integrate complementary medicine in your care.
Ask your health care team about support groups.
Ask your doctor or nurse what foods should be avoided during treatment to prevent or reduce nausea.
Ask your doctor or nurse about medications or methods to increase stamina and reduce fatigue.
Ask your doctor about the "nadir" period of your treatment cycles and what limitations or precautions, if any, you should be aware of during this time.
Ask your doctor how much you should drink to stay well hydrated.
Tell your doctor about your home and work environments. Ask if you need to take any special precautions during or after treatment. If you require special accommodations at your job, ask your doctor to write you a letter to support this change.
Ask your doctor for a prescription for an anti-nausea medicine before the day of your first treatment.
Complete important dental work and get your teeth cleaned. You may need to avoid certain dental procedures during treatment because of your lowered blood count.
Visit a wig shop or hairdresser before you have hair loss so the stylist will see your current hair color and style.
If you get a manicure or pedicure, have your cuticles pushed back and not cut to reduce the risk of infection.
Ask your nurse how to reduce the risk of mouth sores.
Find out what lotions are best to keep your skin moisturized.
Ask your doctor about any special precautions for going in the sun.
Call LBBC’s Survivors’ Helpline at 888.753.5222 for support.
Not Your Mother’s Menopause: Coping with Early Onset Menopausal Symptoms
At a recent meeting of LBBC’s Young Survivors Networking group, Ann Honebrink, MD, spoke about premature, treatment-induced menopause. Dr. Honebrink, who frequently cares for women with breast cancer, is an obstetrician/gynecologist in the department of obstetrics and gynecology at Pennsylvania Hospital, in Philadelphia, and medical director at Penn Health for Women at Radnor.
Dr. Honebrink explained that premenopausal women who undergo chemotherapy often experience temporary or permanent menopausal symptoms. Their bodies need to adjust to lower levels of estrogen because of the disruption to their ovarian function.
Treatment-induced menopause may mean sudden and acute hormonal changes, resulting in severe, difficult-to-manage symptoms, especially for women who have their ovaries removed. Also, women who take tamoxifen may experience uncomfortable symptoms. But you do not have to suffer. Speak with your health care team and other women for advice and treatment options. Below are some of the tips Dr. Honebrink offered at the meeting.
Hot Flashes
—Many women have specific triggers for their hot flashes like wine, food or stress. Pay attention to the messages your body sends you.
—Some women use natural remedies like acupuncture, guided imagery and Vitamin E. Talk to your doctor before taking herbs because some act like estrogen in the body.
—Medical remedies may include anti-depressant and high blood pressure medications.
Vaginal Side Effects
—Use something for lubrication. Avoid those with spermicide unless you are using the lubricant for birth control: spermicidal agents can increase vaginal irritation.
—Some women experience vaginal irritation or dryness, leading to decreased libido. To treat the discharge that accompanies vaginal irritation, keep the area dry and open to air as much as possible.
—Avoid wearing underwear at night, dry well after showering and wear looser clothing around the area.
—Use Crisco or plain yogurt intravaginally to lubricate the lining of the vagina and restore the natural flora.
—Pain from vaginal irritation and dryness may be distressing to you and your partner. Try having intercourse more often! Less frequent use of your vagina, combined with a lack of estrogen, makes the opening of the vagina contract. The more regularly you have intercourse, the less anxious you will feel about pain and the more your vagina will stretch.
—Vaginal estrogen creams and Estrings are not normally prescribed for women who have had breast cancer. Some doctors may consider an estrogen-based cream if a woman’s symptoms are severe and other treatments have not helped her.
Sleep
—Women complain of two types of sleep issues: an inability to fall asleep and an inability to stay asleep. Try to keep to a regular sleep schedule. You will sleep deeper and more soundly if you do not fall asleep doing something that keeps your mind active, such as reading or watching TV.
—Use your bedroom exclusively for sleeping and intimate relations.
—If you wake up in the middle of the night, try stress management techniques.
—You may also try a sleep aid like an antihistamine product, but only for a few days; they can be addictive.
Whatever your side effects, be sure to share them with your health care team so you can work together to determine the best course of action. Talk to other women in a similar situation. They may have tips for alleviating symptoms. Getting the answers you need is an important step toward being comfortable with your body.
Dorel Shanon: A Survivors’ Helpline Trainer Comes Full Circle
About six years ago, Dorel Shanon, an organizational development consultant from Philadelphia, developed and facilitated the first training for women to answer calls on LBBC’s Survivors’ Helpline. Little did Dorel know that within a few years she would need the Helpline herself.
Late one summer, Dorel discovered a lump in her right breast. She attributed it to "naturally lumpy breasts" because a recent mammogram showed no problems. Just to be safe, though, she did more frequent breast self exams.
Within a month the lump became painful, and its size and shape changed. She went to her doctor, who sent her to a breast surgeon. After an ultrasound and a lumpectomy, Dorel learned she had breast cancer.
"It came as a shock, really out of the blue, especially given my age," said Dorel, who was 41 at the time.
Dorel’s diagnosis came after her annual vacation with her family. She and her husband, Stuart, had just celebrated 20 years of companionship. The vacation was a break from her hectic work schedule, a chance to focus on her then 9-year-old son and 6-year old daughter.
"I’ve never been someone who has thought, ‘Why me?’ because I know this happens to women across the board," Dorel said. "But I’ve often thought, ‘Why now?’ Couldn’t this have waited another 15 years until my kids were grown?"
A Long Diagnosis
The initial lumpectomy showed Dorel had breast cancer. But it would take three months for her to learn the extent of it.
After the initial surgery, Dorel phoned Marisa C. Weiss, MD, LBBC’s founder and breastcancer.org’s founder and president, who Dorel knew through her work with LBBC. Dr. Weiss encouraged Dorel to get an MRI of her breast, which revealed two more suspicious sites. As a result, Dorel had another lumpectomy and a sentinel node biopsy. Some cancer remained after the second surgery. Now Dorel had to choose between a re-excision (another lumpectomy) and a mastectomy.
Her surgeon explained that, in Dorel’s case, either choice was an option at this point. Dorel did research, but she wanted to talk to someone who had made the same decision. She called LBBC’s Survivors’ Helpline and spoke to several women, some whom she had trained just a few months before.
"One woman I’d never met or talked with before volunteered to show me her reconstruction before my own surgery," Dorel said. "That meeting was a turning point for me. I felt much calmer and more clear about my choices once I met with her."
No ‘Piece of Cake’
In late January Dorel had a mastectomy and TRAM flap reconstruction. She later had several months of chemotherapy and radiation treatments.
After the months of uncertainty about her diagnosis, Dorel thought she had experienced the most difficult part of her treatment. So the emotional side effects of radiation treatments caught her by surprise.
"I had heard radiation was a piece of cake after chemo," she said. "But I found it hard. Between chemo treatments I felt I could live my life again. With radiation, you can’t get away from it because you go every single day."
Another thing that zapped Dorel’s energy: dealing with managed care. Dorel and Stuart, both self-employed, paid large sums to be members of an HMO. Such plans require referrals from a patient’s regular doctor to see a specialist. Dorel frequently struggled to get these referrals in time for her appointments. Also, although she saw the doctors she wanted, Dorel could only have diagnostic tests at her local hospital. She often knew of other facilities with expertise and more sophisticated equipment.
When the paperwork of cancer frustrated and angered Dorel, Stuart took responsibility for managing the forms.
"I was simply lucky I had someone to turn to," she said. Later, Dorel chose a different insurance plan. "It gives me lots more flexibility with diagnostic tests and doesn’t require referrals."
Support for Self, Family
Dorel’s husband and immediate family provided invaluable support during her treatment. But friends, extended family and health care providers played a vital role as well.
Two of Dorel’s friends organized a formal support system. This group—which included friends, members of Dorel’s synagogue and parents from her children’s school—managed the small but important details of the family’s day-to-day life. They cooked meals, organized rides to doctor’s appointments and arranged play dates for the children. They visited Dorel so she could spend time with her children without being in charge.
Dorel also counted on her Rosh Hodesh group, a Jewish women’s group that celebrates the beginning of each month of the Jewish calendar, when the moon is new. Before Dorel’s final surgery the women planned and created a special ritual ceremony for her.
"Like many women, I’ve always been in the role of helping other people," Dorel said. "It was much harder to be in the role of being helped. I had to keep remembering how good it felt when I helped others. … It was humbling and so powerful to see how much we were held as a family during that time."
Moving Beyond
After completing treatment, Dorel immediately returned to a busy work schedule. When the pace slowed, she realized she felt tired.
"I thought, ‘It’s been seven weeks, why aren’t I feeling better?’" she said. "After everything I have been though, I know intellectually it’s ludicrous [to expect to be back to a normal routine]. Emotionally, it was hard accepting my limitations and a different pace."
To combat fatigue, Dorel used a number of complementary treatments under the care of her medical oncologist and an integrative medicine specialist. She took herbs and supplements, went to an acupuncturist and meditated. She worked to find a balance between "family, community and work."
Part of that work included LBBC. Last January Dorel trained 11 new Survivors’ Helpline volunteers. The training structure remained the same. But Dorel’s experience with the women changed.
"If there was any similarity between the trainings before and after diagnosis, it was that I learned an incredible amount from the women who participated about living fully, deeply and in the moment," Dorel said. "It’s been an amazing experience for me, and I’m honored to be able to continue to work with the Helpline and with LBBC."
The Helpline number is 888.753.5222.
