Publications
Insight, Spring 2006
The spring 2006 issue of Insight provides tips on exercise and weight management, information about the medical and emotional impacts of lymphedema, updates on trastuzumab and the Oncotype DX test, and a profile of a woman living well with advanced breast cancer.
Table of Contents
Exercise and Weight Management for Health and Well-Being
Every year thousands of women resolve to exercise more and shed excess weight. But for women affected by breast cancer, regular exercise and weight reduction can have profound effects on quality of life and long-term health that go far beyond popular notions of ideal body shape or fitness regimens.
Studies examining the relationship among nutrition, weight and breast cancer have shown maintaining a healthy weight can reduce the risk for recurrence, according to reports in the Journal of Clinical Oncology (Vol 20, Issue 15, August 2002). Exercising before, during and after treatment has also been associated with quicker recovery. Just 30 minutes of moderate exercise can aid recovery, alleviate common side-effects and enhance your mood, according to a study by Amanda Daley, PhD, of the University of Birmingham.
Still, many women find it hard to start an exercise program or to maintain it throughout treatment. To create a successful exercise program, you should set realistic goals for yourself and consult a healthcare professional to select safe and effective activities tailored to your needs, lifestyle, exercise history and medical condition.
"Exercise is a medicine," says Andrea Cheville, MD, director of the cancer rehabilitation and lymphedema programs at the University of Pennsylvania Cancer Center. "You need to come up with the right dosage, intensity and frequency."
Richard DeMaria, PT, president of Dynamic Rehabilitation Services and an LBBC board member, stresses that "objective assessments and clearly outlined programs are necessary to ensure safety and optimal results and should include targeted heart rate performance as well as specific strength tests."
When to Start
It is never too late or too early to begin exercising, DeMaria emphasizes. "It is better to maintain strength than to regain it. We encourage all patients recovering from breast cancer to incorporate an intelligently prescribed program of exercises into their life." DeMaria also notes that an exercise program should incorporate any medical conditions and special concerns you may have and include goals of flexibility, endurance and strength, if appropriate.
Different forms of exercise offer special benefits and varying degrees of intensity. You can choose from a broad range of activities to select the best fit for your personality, lifestyle and exercise goals. Choose gentle yoga to relieve stress, swimming to increase your heart rate, walking with friends if company keeps you committed to an exercise plan, running a marathon if you are ambitious and enjoy tracking your improvements or joining a gym if you enjoy social environments.
If you feel you can’t fit exercise into your life, start by walking 10 minutes in the morning, 10 minutes at lunch and 10 minutes after dinner.
Sallie Campbell from Springfield, Kentucky, regularly ran and walked, but during breast cancer treatment she spent most days sitting on the couch in her sunroom. When she returned to her exercise routine, she found she had lost a lot of muscle mass. "I could have worn my jeans backwards," she explains.
Now Sallie visits a local gym for women, where she does interval and resistance training. Sallie, who lives on a farm, also goes on walks with her grandchild.
Setting Goals
Dr. Cheville offers one piece of advice to women who come to her. "People use exercise for all kinds of reasons, and I always ask them to try and develop some personal goals."
Depending on your goals, you can use exercise to enhance mood, control weight, stabilize posture and increase flexibility in the chest area after surgery, reduce the risk for recurrence, lessen insomnia and menopausal symptoms or control other symptoms of cancer treatment.
When Cindy Papale-Hammontree of Miami, Florida, was diagnosed with stage I invasive breast cancer at age 46, she used daily power walks to stay active, maintain weight and stay connected to her pre-breast cancer self. Walking also helped Cindy alleviate hot flashes she experienced as a side effect of tamoxifen.
Weight gain is one of the most common side effects reported by women in treatment for breast cancer. Speaking at an LBBC networking meeting, Dr. Cheville noted that the average increase in body weight is 25 pounds, and a weight gain of only 13 pounds can increase your risk for recurrence by 50 percent.
Weight gain is associated with a lower quality of life, feelings of sadness and increased fatigue, which often lead to even more sedentary lifestyles. Exercising and eating well may help prevent weight gain and reduce some of these risks.
Diagnosed twice, first in 1991 and again in 1992, Sally Sullivan of Media, Pennsylvania, uses cardiovascular workouts and a well balanced diet to stay trim and healthy. She also benefits from the mood-enhancing properties of aerobic activity. "I like the high I get from exercise," she says.
Sally swam laps daily before her diagnosis, so she sought water as soon as her surgical drain was removed. She did not expect to be as fit as she had been before breast cancer and was amazed at how quickly she recovered.
"Water is so forgiving," Sally says. "I felt like a million bucks when I was able to extend my arm and move through the crawling motion."
Getting back to swimming also helped Sally find her way back to her former life. "It seemed like the rest of my life fell into place with the swimming. If I can exercise, I don’t feel sick."
Sally, who chose not to undergo reconstructive surgery, adds that she does not use a private locker to change into her swimsuit: "That’s not my style. I found a way to turn and face the locker when I change without revealing anything. I don’t want kids to stare, but I would not let my scar keep me from doing my thing."
Sally recently added weights to her weekly routine to help treat bone loss. Resistance training not only helps lessen osteoporosis, but it increases strength and adds muscle. According to Dr. Cheville, 1 pound of fat burns 2 calories per day, while 1 pound of muscle burns 34 calories per day. Therefore, turning fat to muscle also helps you burn calories and lose weight.
Moderate aerobic exercise can lessen a variety of the side effects associated with breast cancer treatment. In addition to weight control and mood enhancement, aerobic exercise can also help you cope with the anxiety brought on by scans and tests. It can also help reverse some of the cardiac risks associated with doxorubicin (brand name: Adriamycin), help with menopausal symptoms like hot flashes and reduce nausea associated with chemotherapy.
A Physical High
Mary Rose Knipp, who lives in Modoc, Indiana, a small town one hour from Indianapolis, uses biking to cope with the emotional stresses of living with advanced breast cancer.
Mary, 35, was first diagnosed in 1998 and cycles with a passion. She gets on her bike even if she needs a little help from friends. "When I was not well enough to bike on my own, and when my blood count was really low, I still wanted to participate [in a 7-day race], so I rode tandem."
Cycling helps her get through the stress of tests and scans, work through anxiety and sleep well at night, Mary adds. "Doctors are always amazed how quickly I bounce back after hospital stays."
Mary speaks with gripping optimism about herself and her journey. "I am determined to keep cycling," she says. "It helps my body stay in control of my cancer."
To stay strong, Mary also watches what she eats. She chooses dark, leafy greens and whole grains, limits her salt and sugar intake, eats plenty of vegetables and fruits to keep her immune system strong and chooses berries and nuts as snacks. She also makes sure she gets enough protein by eating fish and organic dairy products.
"Nutrition and exercise go hand in hand," Mary says. "I encourage everyone to make gradual changes. Small changes are much more achievable."
Jane Greensher of Long Island, New York, found she was gaining weight during her chemotherapy and radiation. She began walking toward the end of her treatments with paclitaxel (brand name: Taxol). She started slowly, walking short distances and increasing speed and distance little by little. To fit exercise into her life, she now walks during her lunch hour.
Dr. Cheville and DeMaria urge women to seek professional advice before embarking on an exercise plan. Most insurance plans include benefits that support physical therapy, reimburse you for gym memberships and offer other incentives to help you achieve your fitness goals.
Lack of instruction may cause you to use movements that overstress body parts and cause complications. In some circumstances, you may require specific exercises. For example, TRAM flap surgery can create a defect in the abdominal muscles that may force you to compensate for weakened stomach muscles.
You could also compromise your immune system by exercising too much or too rigorously. If you are living with bone metastasis, you must be especially diligent about working with a physical therapist.
With good instruction, however, you may be able to reverse or prevent many of the physical effects of breast cancer treatment and possibly prevent other illnesses like diabetes or heart disease.
Lymphedema: Understanding and Managing the Impact on Your Life
Lymphedema is among the most feared and misunderstood side effects of breast cancer treatment. Unlike many side effects, lymphedema is chronic and may occur right after surgery or weeks, months or years later.
By diagnosing lymphedema early, you can improve your chances of lessening its impacts. If you develop lymphedema, you can learn strategies to maintain a good quality of life.
What Is Lymphedema?
Lymphedema is swelling caused by a build-up of lymph fluid in body tissue. Lymph fluid travels through our bodies on a circulatory "highway" of lymph nodes and vessels. These fluids carry white blood cells, which help us fight infection. Sometimes breast cancer surgery or radiation treatment can throw roadblocks in the highway, preventing the lymph fluid from reaching its destination. The result is swelling in the arm, underarm, hand, breast area, shoulder or back.
No one knows why some women develop lymphedema while others do not. An estimated 5 percent to 40 percent of women affected by breast cancer develop lymphedema, but statistics vary because doctors use different criteria to diagnose it. Some research suggests you may be at higher risk if you are overweight, older, have radiation treatments, undergo aggressive lymph node dissection or had previous surgeries to your axilla (underarm area), chest wall or collarbone.
Candace Bridgewater, 60, of Orange Park, Florida, first noticed mild swelling between her knuckles after her third radiation treatment. Candace, who was treated eight years ago, had a lumpectomy and axillary lymph node dissection as well as radiation treatments to her entire breast and underarm. Although her lymphedema is mild, Candace has made changes to her routine.
"It’s a difficult protocol, and it changes your life," Candace says. "I had to teach my grandchildren to climb into my lap instead of my picking them up, and I learned it wasn’t a good idea to carry a gallon of milk in one hand. But the worst thing for many people is that it isn’t diagnosed."
Swelling Vs. Lymphedema
Some swelling after surgery is normal; this does not mean you have lymphedema. For a few weeks after surgery, elevate your arm for 45 minutes two to three times a day; simply place your arm on a soft pillow on your lap. Use your arm as you normally would a few days after surgery, taking care not to over-exert yourself. In the weeks, months and years after, look for the following symptoms, which could indicate lymphedema:
• Your arm feels heavy or your skin feels tight
• Your hand or wrist feels less flexible
• Your arm feels tighter in clothes, or rings, watches and bracelets no longer fit
• Persistent swelling, with or without pain, for one to two weeks
• A temperature over 100.5 degrees without cold or flu
• Signs of an infection, like swelling or redness, in the affected area
Should you experience symptoms, contact your doctor right away. "We know if we intervene early, we can for the most part prevent progression of lymphedema," says Andrea Cheville, MD, a cancer rehabilitation specialist at University of Pennsylvania Health System who serves on the medical advisory committee of the National Lymphedema Network at http://www.lymphnet.org. "If it’s ignored or the arm gets large, it can be hard or impossible to bring it back to normal size."
Alice Powell, 54, of Houston, developed lymphedema eight months after finishing chemotherapy. Her doctor immediately started physical therapy. The quick intervention helped Alice keep her lymphedema under control, "just something I have to be aware of when I get blood drawn or put on jewelry."
In rare cases, lymphedema may be caused by a recurrence or a blood clot. An ultrasound can rule out those causes. More common is a lymphedema-related infection, which requires antibiotics and can be very serious if left untreated.
Amy Brenner, 49, of Willow Grove, Pennsylvania, already knew she had lymphedema when she got a hangnail and did not treat it immediately with antibiotic cream. Several weeks later her arm suddenly became swollen and red. That night she woke up unable to breathe easily and with a rash on her breasts, arm and stomach. Her doctors told her she had cellulitis, a serious skin infection that may be life-threatening if left untreated. Most people with cellulitis end up hospitalized and treated with IV antibiotics; luckily, Amy responded well to strong oral antibiotics she took for about 75 days.
"I didn’t have sufficient education," Amy says. "I needed to be more diligent with wound care. Now if there’s any hint of a breach, I get on top of it immediately."
Treatments
If you are diagnosed with lymphedema, a variety of healthcare practitioners can help you, including doctors and nurses and physical, occupational or massage therapists.
"The treatment of lymphedema requires an armament of treatment services," says Richard DeMaria, PT, president of Dynamic Rehabilitation Services and LBBC board member. "They’re all geared at patient education and at external compression that will help remove the fluid from the area where it is."
If possible, find a practitioner with certification from the Lymphology Association of North America at http://www.clt-lana.org. LANA requires 135 hours of special training, says Dr. Cheville.
Your treatment regimen will depend on your doctor’s recommendation and your lifestyle. Many women undergo Complex Decongestive Therapy, or CDT, a combination of skin care, exercise, bandaging, compression sleeves and light massage. Manual Lymphatic Drainage, or MLD, moves lymph fluid from the affected area to other parts of the body, so the fluid can be returned to the circulatory system and released through urination.
Soon after diagnosis, a lymphedema specialist may perform MLD on the affected area for several sessions, after which your practitioner will wrap your arm in short bandages until your return. Many women learn MLD themselves so they can do it at home. Insurance may also cover the costs of a mechanical pump to help move lymph fluid; speak with your healthcare provider first about safety measures.
Sleeves also may be used. They are specially fit to provide the proper amount of compression. "A poorly fit sleeve can do harm," Dr. Cheville says. Ask your lymphedema specialist or physical therapist to refer you to someone reliable.
Nicole (Nikki) McDougald, 34, of North Versailles, Pennsylvania, developed problems when she wore a sleeve that did not fit well. Her insurance later covered a new sleeve at a store her provider recommended.
Whatever route you choose, get educated about your treatment. "My personal treatment goal for someone with lymphedema is to help them manage it themselves," DeMaria says. "Work the treatment into your life. Do it when you want to do it and make it work."
Prevention and Care
You can decrease your risk of lymphedema and infection in a variety of ways:
Don’t have blood drawn or blood pressure taken from your surgical side. Always identify your affected side; even the best practitioners forget from time to time! If you have lymphedema on both sides, your blood may be taken from your leg.
"When I’ve had surgery I used a washable marker and wrote on my arm that it is not to be used for needles," says Amy. "The hospital staff thought it was a hoot, but it kept one nurse from using the arm one time, so it has been well worth it."
Work with your healthcare provider on an exercise program. Keeping your affected side in good shape can help you avoid muscle strains, which can trigger lymphedema. Use your arm as you normally would but avoid tiring yourself. Talk with a cancer rehabilitation specialist and your healthcare team before doing strenuous exercise.
"What more and more people recognize is that not using the arm at all de-conditions it," says Dr. Cheville. "Everybody eventually has to lift something—a small child, a gallon of milk. Keep your arm toned using gentle exercises."
Wear clothes and jewelry that fit. If your favorite bracelet feels too small for your arm, wear it on the other side. Make sure you have a qualified person measure your bra size so the straps don’t dig into your shoulder.
Practice good hygiene. Keep your arm and hand clean. Use lotion to keep your skin soft, and maintain your fingernails. If you get a manicure, have the cuticles pushed back and not cut. Apply an anti-bacterial cream as soon as possible if you get a paper cut, scratch or insect bite. Cover the affected area with a clean bandage.
"I keep antibiotic cream and bandages at work, in my handbag and even at my mother’s," says Amy. "If there’s any hint of a breach, I get on top of it immediately."
Wear gloves. You don’t have to give up gardening and cooking, but wear gloves to protect your hands from cuts, scrapes and burns. Use a thimble for sewing so you won’t prick yourself. Wash cuts immediately with soap and water, apply an antibiotic cream and monitor the area for infection.
Protect yourself from burns and insect bites. Heat can trigger lymphedema. Use a full spectrum sunscreen outdoors, wear insect repellent and use oven mitts in the kitchen. Avoid hot tubs and saunas.
"Take care of your arm," Nikki says. "When they say keep it moisturized, do it. If you’re tired, if you feel it’s too heavy, don’t lift it. Don’t push yourself. This is for the long haul. Don’t try to be a superwoman. You don’t have to prove anything to anyone. You’ve already proven it by being here."
Lymphedema: Emotional Impacts
You thought you had been through it all--and then you learn you have lymphedema.
Like a surgical scar, lymphedema can be a constant reminder of your breast cancer diagnosis. A diagnosis of lymphedema can bring up feelings of shock, grief, guilt, anger, anxiety, loneliness and isolation.
"There’s a sense of unfairness," says Elizabeth McMahon, PhD, author of Overcoming the Emotional Challenges of Lymphedema, available at http://www.amazon.com. "’I went through cancer. I’m not supposed to get anything else!’ Lymphedema [is usually] caused by cancer treatment. It can feel so wrong emotionally that the treatment designed to help you has left you with a chronic condition."
Sometimes women blame themselves for their lymphedema, but doing so won’t help you, says Trudy Turvey, MS, PT, president of HealthLinks Clinic, who spoke recently about lymphedema at the 6th Annual Conference for Young Women Affected by Breast Cancer.
"Throw out the guilt," Ms. Turvey says. "[Getting lymphedema] is not closely related to what you’ve done. Some people just get it."
Anger is a natural reaction--at your healthcare team, at insensitive strangers who ask questions, at the breast cancer itself. Many women resent the changes lymphedema forces them to make in their lives, or how it changes their self-image.
"I had to learn to ask my husband for help," says Candace Bridgewater of Orange Park, Florida. "It made me mad that I had to ask for help for things I shouldn’t need to."
Says Amy Brenner of Willow Grove, Pennsylvania: "It’s impacted how I dress and how I let other people see me. I hate having lymphedema. I hate feeling disabled for the rest of my life."
Lymphedema can be isolating for anyone, but especially for young women. "You feel like you’re 90 years old, but you’re young," says Nicole (Nikki) McDougald, who is 34 and has three children. "As soon as you feel better, you want to get up and wash clothes or something, but you have to be careful you don’t do too much."
Anxiety is another normal response. It may take time to get a proper diagnosis, which may require tests to rule out a breast cancer recurrence. Once you learn you have lymphedema, you may question the safety of activities you once took for granted, or wonder whether your concerns about protecting the affected area are compulsive.
Lymphedema: Managing Your Feelings
All these responses are "reasonable and normal," says Dr. McMahon. "Our challenge is to take the tragedy and pain that life gives us and not add to it more emotional distress than we need. Take active steps to care for yourself, emotionally and physically." Among her suggestions:
• Accept that you have feelings. "Have a good cry. Have a temper tantrum," she says. "Don’t beat yourself up for having normal reactions."
• Release emotions through "write and destroy." With writing, "you can be irrational, selfish, obscene, profane: you just pour it all out and write until you’re done. Then you rip it up so nobody else reads it."
• Keep your lymphedema under control. Follow the guidelines to protect your health. Empower yourself with the knowledge you need to keep yourself safe.
• Learn what works for you. Talk to your healthcare team and use the Internet to get the facts from reliable websites. For select sites, visit http://www.lbbc.org/resources-links.asp.
• Find ways of working lymphedema treatment into your everyday life. Make your self-massage part of your regular schedule: "I brush my teeth, then I do my self-MLD. I love the feel of the dirt in my garden, so I wear a glove on the affected arm and touch the ground with my nonaffected hand."
• Reach out to others. Find other women with lymphedema in your community, on LBBC message boards or through websites. Ask what works well for them and use what works for yourself.
Candace started a support group to meet others coping with lymphedema. Her group grew so popular that it ran a two-day seminar including people who developed lymphedema from a variety of causes.
"I’ve quit being quite so furious," Candace says. "When people ask me ignorant questions, I tell them I’ve had breast cancer and I have swelling because of it, and it’s called lymphedema."
Perhaps most important: continue to live your life. Candace hasn’t given up boating, scuba diving, birding or planting trees. She has traveled to China to see her son. "I’m [still] very active," she says. "I can’t stand to sit and be idle."
Lymphedema: When to Get Help for Your Well-Being
If lymphedema or breast cancer in general has you in a rut, consider consulting a mental health professional. Dr. McMahon lists several possible warning signs:
• Your emotional reactions get worse over time.
• Your responses to your lymphedema or breast cancer are harming your quality of life. They keep you from working or doing things you enjoy. You wake up feeling as though your life is empty.
• You do not take care of your medical needs, like self-massage and bandaging.
• You isolate yourself from family and friends or lash out when they try to help you.
• You do things that can hurt you, like drinking or overusing medication.
To find a qualified mental health professional, contact your healthcare provider or trusted peers for a referral.
In most cases, with early diagnosis and intervention, severe cases of lymphedema can be prevented. Understanding the early signs and symptoms can help empower you to take charge of a potentially challenging and stressful situation. Notify your healthcare provider if you experience physical changes that cause you to be concerned so that an evaluation by a qualified professional can be done. Remember, early diagnosis is often the key to successful treatment.
Lymphedema and Air Travel
If you have existing lymphedema, flying could increase the volume of your arm, according to research studies. When you fly, you may benefit from using a compression garment.
To decrease chances of swelling in existing lymphedema, use your compression sleeve for several hours before your flight, during the entire flight and for several hours after. Candace uses her sleeve and wraps her arm; about halfway through the trip, she starts removing the wrappings until only the sleeve remains. She walks and stretches frequently to keep her body fluid moving. The National Lymphedema Network (http://www.lymphnet.org/riskReduction/travelTips.htm) also recommends:
• Before you leave, checking the condition of your compression garments. Bring an extra in case you lose your garment on your trip.
• Moving around or performing manual self-massage in your seat.
• Bringing antibiotics or a doctor’s prescription with you in case you suspect infection in the affected limb.
• "Being cognizant of what you’re doing with your arm," Dr. Cheville says. This advice is always a good rule of thumb, but when traveling you should use special care in packing and carrying your luggage. Use your unaffected arm to lift luggage off the carousel. Ask for help with heavy baggage—or, even better, pack light!
• Applying insect repellent and a full-spectrum sunscreen. Use anti-fungal powder on your feet to prevent transferring athlete’s foot from your feet to the moist areas under your arm or breast susceptible to lymphedema.
No good studies exist on the risks of air flight for those without prior evidence of lymphedema. Dr. Cheville says it could be the pressurized cabin but it also "may be [caused] by not eating, lugging things around or eating salty food."
Some lymphedema specialists believe people without symptoms do not need a compression sleeve for air travel. If you have concerns, talk to your healthcare provider about your specific situation.
"If you’ve never had lymphedema, we don’t recommend you wear a compression garment," says DeMaria. "But we do recommend taking a lot of flights, because after what you’ve been through, you deserve a vacation!"
Debbie Osborne: Profile of a Woman Living Well with Advanced Breast Cancer
As a registered nurse, Debbie Osborne of Glen Mills, Pennsylvania, helps people advocate for their health. So when Debbie was diagnosed with advanced breast cancer at age 42, she used her professional skills to help herself and other women living with breast cancer find the best treatment and support available.
In November 1997, doctors discovered a small tumor in Debbie’s breast during an annual mammogram. At the time, she was working as a nurse consultant in pediatric HIV and child abuse. Her husband, Stephen, had just started the job of his dreams, and her three sons were attending middle and high school.
Debbie was devastated when her biopsy tested positive for cancer.
"I remember everything falling through me," she says. "I feared death. Because I used to be an intensive care nurse, I knew how fragile life is."
Debbie underwent a lumpectomy and removal of her lymph nodes. After five weeks of radiation, she went back to work. By May 2001, Debbie was just beginning to feel secure with calling herself a "survivor" when she felt a small nodule in her breast. A needle biopsy revealed cancer. The doctors suspected a local recurrence, but further testing showed cancer in both lungs.
"It was the biggest shock of my life," Debbie remembers. "Advanced breast cancer is your worst fear come true. My diagnosis was a double whammy. It was a nightmare."
Debbie’s determination to fight the disease was immediate: "I was emotional, but I thought, ‘OK, I can’t be immobilized. I need to stay together for my children and myself. I rebounded better [than the first time I was diagnosed]. I landed on my feet."
Debbie began chemotherapy within two weeks of her diagnosis. She insisted on finding an oncologist who not only was a good doctor, but also had compassion and communication skills. She chose Lynn Schuchter, MD, an LBBC board member and physician at the Hospital of the University of Pennsylvania.
Debbie remembers the day she asked Dr. Schuchter how long she had to live.
"She said she didn’t know," Debbie says. "Then she told me I had many options and many treatment plans. She pulled out a list and said, ‘by the time we get through this list, we’ll have a whole other list.’ At that point, I knew Lynn wouldn’t give up because she was a go-getter."
Debbie was a go-getter as well. Because of her experience as a healthcare professional, Debbie knew the "tricks of the trade," which enabled her to be a strong advocate for herself.
"Some people are afraid to ask and assume that what they need to know, they’ll be told," Debbie says. "I was more assertive because I knew the system and I had the medical knowledge. I asked questions and lined up second opinions."
Debbie became an advocate for others with breast cancer. After deciding that her mission was to stay as well as she could and spend time with family, she resigned from her job as a nurse and began volunteering for breast cancer causes and community nonprofits. She is on the phone constantly, providing support to other women diagnosed with breast cancer. Most are women Debbie didn’t previously know who hear about her through word of mouth. She often refers them to LBBC and other cancer organizations.
"Sometimes people need to hear a voice from someone who has been there," Debbie says. "People know I’m a healthcare provider and a strong advocate for myself, so they feel comfortable talking to me. I feel that God chose not to take me [right away], but left me here to help, inspire and bless others so they can go on their journey with less pain and more hope."
But conversations can also be challenging for Debbie. "I sometimes think, ‘I’m their living nightmare [because I was diagnosed with advanced breast cancer]’ but then I can flip that and say, ‘Look at me. I’m living with cancer, and I’ve passed my life expectancy. It’s not a death sentence.’"
Debbie spends many hours on the Internet researching clinical trials and other available treatments.
"I think it’s partially because of my history as a nurse, and partially because it’s a part of my personality," she explains about her insatiable drive for the latest and best information. "I try to seep up as much information as I can so I can ask educated questions and be the best advocate."
Debbie has been in constant treatment for the past four years. She has participated in numerous clinical trials and is now on her ninth line of treatment with Abraxane, a form of paclitaxel that may be given less often and without pre-medications like steroids. But Debbie and her family have decided they won’t let cancer control their lives.
"I can’t get to all my son’s sporting events and I might not be able to cook all the time, but we try to maintain as much normalcy as possible," Debbie says. "My friends and family rally to keep me strong. I wouldn’t be where I am today without their support and love." Incorporating things she can control, such as spirituality, good nutrition and exercise, also gives her strength to balance the treatment and make her feel better.
Because metastatic breast cancer is incurable, Debbie calls herself a "warrior" rather than a survivor. She emphasizes to other women that it is possible to live well with advanced breast cancer, even while undergoing treatment.
"It’s not an easy road, but it’s a manageable road. You have to be able to take the dips, turns and ruts. There’s a lot of hope and a lot of drugs in the pipeline, but you can do it," Debbie says. "When you are thrust into the arena of advanced breast cancer, do not concede to statistics, prognosis, or life expectancy. Instead march forward with hope, courage and determination."
We are deeply saddened to hear of Debbie's passing. She touched many lives through her positive attitude and served as an example of how to live well with advanced disease. She will be greatly missed. 10/26/06
