Publications
Insight, Summer 2006
In the summer 2006 issue of Insight, learn about getting a second opinion, using the creative arts to improve quality of life, new data from the STAR trial and how a woman without health insurance got the care she needed for breast cancer.
Table of Contents
Getting Second Opinions: Benefits, Concerns and Making Decisions for Your Health and Life
When Frances Dickerson, of Salem, New Jersey, was diagnosed with breast cancer six years ago, her surgeon recommended a mastectomy. But Frances, 44, wanted to preserve her breast.
Frances researched her options and talked to loved ones. With their support, she decided to learn more about her options.
"For me, getting other opinions had to do with a level of control," Frances says. "If I go and ask someone else, I feel like I’m not following blindly. When my three second opinions all said that mastectomy was the best option for me, it gave me a sense of OK, I can do this."
Second opinions can help you learn more about your cancer, the treatment options and communicating with your healthcare team. Yet, for a variety of reasons, many women do not request one. Several physicians and women spoke with LBBC to help you get the information you need.
Should I Get a Second Opinion?
In the first few weeks following a breast cancer diagnosis, most women experience a range of emotions. Unfortunately, it is also during this emotional time that most women are expected to select a treatment.
"Peace of mind is the major benefit of a second opinion," says medical oncologist Generosa Grana, MD, director of the Cancer Institute of New Jersey at Cooper. "You’ve covered all your bases, you’ve educated yourself, and you can go in wholeheartedly knowing what treatment you’re going to pursue."
More opinions also may help you better understand your medical options and communicate with your healthcare team.
"Getting a second opinion may not have anything to do with getting different information but getting the information in a different way," says Susan Troyan, MD, FACS, surgical director of the BreastCare Center at Beth Israel Deaconess Medical Center. "Sometimes when someone gives you the same information in a slightly different manner, or a very different manner, it can make more sense to you."
Everyone has the right to request a second opinion, but some breast cancers lend themselves to a larger variety of treatments, making a second opinion useful in determining treatment options. For example, with early-stage breast cancer, you may have several treatments available to you. Some doctors prefer a particular chemotherapy regimen or use newer tests that predict response to treatment; explore these issues with your doctor, Dr. Grana says.
Find out whether your surgeon recommends removal of the sentinel lymph node only or of the axillary lymph nodes, a more invasive surgery that puts you at higher risk for developing lymphedema. Consider a second opinion if your doctor recommends a mastectomy; several studies have shown lumpectomy followed by radiation therapy works as effectively as mastectomy in some situations. With locally advanced breast cancer, you may want a second surgical opinion about timing the removal of your tumor for either before or after chemotherapy, says Dr. Troyan.
If you are pre-menopausal, you may want a second opinion from a physician who works with young people and who can guide you toward resources about fertility and pregnancy, menopausal symptoms and long-term bone health. And if you have advanced cancer, you may want to see a doctor with access to information about the latest clinical trials and research.
Some women seek second opinions because of a gut feeling. Bonnie Davidson, 51, of Marion, Massachusetts, disagreed with her doctor’s recommendation of watchful waiting when she noticed drainage from her nipple. Bonnie, who had been treated for breast cancer 10 years earlier, argued she should pursue treatment because of her health history.
"I just felt there was something I could be doing," Bonnie says. "I went to [another hospital] for a second opinion. They agreed, so I went into a clinical trial."
Bonnie participated until side effects prompted her to leave the study. Soon after, she returned to her original doctor and the two decided she should have a double mastectomy. During the surgery, the doctor discovered two cancerous tumors in one breast and multiple areas of pre-cancer in the other.
"I trusted my original surgeon, but I think doctors are just as likely as other people to make mistakes," Bonnie says. "Technology is not perfect. People can read pathology reports wrong. Getting a second opinion is definitely worth peace of mind, and it could be worth your life."
Concerns and Fears
Many women do not get second opinions because they feel rushed to make treatment decisions. But in some cases, you can safely take between six and eight weeks to begin treatment.
"With breast cancer, there’s almost never an emergency," Dr. Troyan says.
Women with ductal carcinoma in situ (DCIS) or lobular carcinoma in situ (LCIS) may take significantly longer, Dr. Grana says. Treatment should start sooner for those with larger tumors, advanced cancer or locally advanced or inflammatory breast cancer.
"Discuss the timing with your first doctor, discuss the logistics, and get advice on the process of getting a second opinion," Dr. Grana says.
Cindy DeMark, 44, of Olmsted Falls, Ohio, wishes she had gotten a second opinion when she was diagnosed several years ago.
"When I was first diagnosed, I was so nervous about everything," Cindy says. "I felt I was rushed into everything. I was scared."
Cindy went with her doctor’s recommendation of a mastectomy with immediate reconstruction, but she has been unhappy with the results. She recently learned she is at high risk for a recurrence, so she plans to have her other breast removed.
"Now that I’m having the second mastectomy, I’m opting to find a different doctor," Cindy says. "I’m also asking all my doctors and getting their opinions."
Some women worry that asking for another opinion may insult their doctors. Both doctors say that’s a red flag. "Any physician who is threatened or upset is not the right physician for you," Dr. Grana says.
Friends and family may also influence your choice to get a second opinion. Your loved ones may have a variety of concerns about your treatment—many having to do with you, and some having to do with their own feelings and fears about your illness.
Elizabeth (Betti) Bruderle, 59, of Berwyn, Pennsylvania, sought a second opinion from a medical oncologist several months after surgery for her breast cancer. Betti is a nursing instructor, and her colleagues supported her decision. But her husband feared Betti would not be happy with just one second opinion.
Betti knew her husband’s reluctance had to do with his own fears, so she continued to push for a second opinion. After much discussion, he began to understand her rationale and joined her for the appointment.
"He wanted me to move on, but moving on isn’t just moving away," Betti says. "It’s integrating everything and then moving on. I don’t think I would have been satisfied if I hadn’t gotten the second opinion."
Cost is another concern. Insurance companies cover the cost of a second opinion, and some cover third and fourth opinions. Call your insurance carrier as soon as possible after diagnosis to ask about coverage.
If you have insurance through the federal government, make sure you understand your coverage. Medicare covers second opinions, but in some cases makes you responsible for 20 percent of the bill. Medicaid puts some limits on second opinions; for example, you may need to go to a facility in your state or to one that accepts Medicaid. If you are uninsured but receive your diagnosis through a government screening program, you may be eligible for a paid second opinion. Your hospital can help you learn more.
Finding a Doctor
Your original doctor is your best resource. The doctor can help by referring you to other physicians, getting you an appointment at a busy practice and sharing insights about your diagnosis with the second doctor.
Look for someone who focuses only on or does a great deal of work in breast cancer, Dr. Troyan advises. Find out whether the doctor did an extra fellowship in medical or surgical breast oncology.
Look for large medical centers that have a breast center. If you live in a smaller or rural area, try to find the one or two practitioners who serve most of the people with breast cancer in your community. Ask your friends who work in medicine.
Also, you can call the National Cancer Institute’s Cancer Information Service toll-free at 800.4.CANCER for information in English and Spanish on hospitals designated by NCI as offering cutting-edge cancer treatments. Find breast specialists at the website of the American Board of Medical Specialties at http://www.abms.org or the American Society of Breast Disease at http://www.asbd.org.
Your Appointment
Preparation is key, says Dr. Grana. Look online and in books. Write down your questions, and consider bringing a friend, or a tape recorder, so you can focus on what your doctor is saying.
You and your original doctors will need to gather a variety of materials: your breast images (from mammograms, MRIs, sonograms and other scans) and the written reports that come with them; pathology slides and those written reports; operative notes; notes from prior doctor appointments; and copies of blood work. Some facilities ask that you send materials ahead of time; others ask that you bring them with you. Ask when you make the appointment.
Second opinions may be done in a single day or over two appointments. A good second opinion should include a re-examination of your pathology tests, to ensure the accuracy of your diagnosis; a review of your radiology and surgical reports; and a treatment recommendation. You may also have a physical exam, review your personal health and family history and re-do some tests, as requested by the doctor or pathologist.
Making Decisions
For some women, the second opinion will simply confirm the first. But for others, multiple opinions offer multiple good choices—and choosing among them can prove difficult.
"The key is to understand that there is not one perfect answer in many cases," Dr. Grana says. "The decision has to be individualized, and that individualization has to be done by the woman and her physician.
"You cannot become immobilized," Dr. Grana says. Make an appointment with your oncologist to review the opinions, discuss the differences among them and explore which route makes most sense for you.
Regardless of your cancer type or stage of disease, you should consider both your medical and quality-of-life needs. If you have several equally effective medical options, think about "which works better for [your] life and what level of risk you are willing to tolerate," says Dr. Troyan.
Ask the doctor for evidence to support the treatment recommendation: What studies show this treatment is effective for a cancer like mine? Are there clinical trials available that may benefit me?
Some women choose a different treatment than the original oncologist recommended but ask to be treated by the first doctor. "A physician should never feel forced to follow a second opinion, but there’s a lot of flexibility in oncology," says Dr. Grana. Most doctors are "very comfortable" providing an equally effective treatment.
After you make your decision, try not to second-guess yourself. "Nowadays, many think all the information is out there and they’re going to find the answer," Dr. Troyan says. "But the truth is, there probably isn’t one answer—you have to pick the one that fits into your life best."
Coping Creatively: How the Arts Promote Physical and Emotional Healing
When Pat McRee, from Memphis, Tennessee, was diagnosed with breast cancer for the second time in 2002, she vowed to set aside time to make art again. Between a busy career and raising a family, it had been 15 years since her last foray into the creative arts.
So when a group of friends invited Pat to a support group based on Julia Cameron’s book, The Artist’s Way, she jumped at the chance. The group held weekly workshops for women affected by breast cancer, where they learned to bead, paint, write and sculpt.
"The group was about inspiring each other to make art a priority. It was like a rebirth, because there is an energy that comes from doing it that carries over into everything else that you do," Pat says.
Many incredible things have happened as a result of this group. Pat published a book about her journey through breast cancer. She and two other women with cancer sold 48 pieces of their art in one month at a local gallery, and several other members formed a co-op to show at other galleries. One even started her own jewelry design business.
"None of us intended to do anything more than enjoy the process, but I believe that facing down death and getting beyond fear sent creative doors flying open. If we weren’t afraid of death, we sure weren’t afraid of any critics we might meet up with!" Pat says.
Lori Flagg, of Glendale, California, found a very different way to express her creativity after her diagnosis with inflammatory breast cancer in 2002.
"After all my treatments, I felt less and less like a woman. The range of motion in my left arm had become very limited due to mastectomy. I had no sex drive, poor body image, the works. I wanted to do something for myself, to make me feel feminine again," she says.
Since Lori always loved to dance, she looked into classes that would fit into her schedule. The only one available was an intermediate belly dance class.
"The instructor was kind enough to allow me to give the class a try, and I was hooked," she says. "With a subtle manipulation of muscle or turn of the head, you can create a story with your body. And the women accepted me, even though I couldn’t move like the rest of them."
Lori says belly dancing has helped her physically, mentally and emotionally. Not only has the range of motion in her arm increased, but remembering sets of choreography also helps to stimulate her memory, which was affected by chemotherapy.
"I feel more joyful. I look forward to class, seeing the ladies, expressing myself and learning there is something new I can do with my body that I couldn’t do before," she says.
An increasing number of women like Pat and Lori are turning to painting, drawing, sculpture, dance, music, poetry and other creative arts as an outlet to help them cope with the emotions they experience during and after a breast cancer diagnosis. Some do it on their own, while others take a class. Still others go a step further, working with a certified therapist.
Creative arts therapy includes dance and movement, drama, poetry, photo therapy and music therapy, as well as the more traditional art methods. It is steadily gaining acceptance by the nation’s healthcare providers, and there is a growing trend to incorporate the creative arts into clinical treatment. In a survey of 2,500 hospitals revealed at the 15th annual Society for the Arts in Healthcare conference, 96 percent reported an investment in the arts to serve people in the hospital, 78 percent used the arts to create a healing environment and a majority employed arts coordinators.
Using creative arts in healing can be traced back centuries through religious practices. In recent years, society has looked for ways to make medicine more human again. And although many clinicians caution that creative arts are not a substitute for traditional medical treatment, new research reports health benefits ranging from pain relief and anxiety reduction to improving recovery times.
Mitchell Gaynor, MD, founder and president of Gaynor Integrative Oncology in New York City, uses music therapy during both the treatment and recovery phase for his clients. Music therapy combines psychotherapy and the use of music as a creative, healing process to achieve therapeutic goals.
"When a new patient comes into my office, it’s a very anxiety-provoking day. So in addition to the standard review of slides, cat scans, and treatment options, I give them a music therapy session," he says. "[After the session,] I’ve had patients tell me it’s the most relaxed they have been in their entire life."
Recent studies have shown that music therapy decreases stress hormones, heart rate and blood pressure, and induces positive emotions, which results in decreased anxiety, pain and sedation requirements, he says.
Lori Baur, MA, a music and creative arts therapist from New York, says participating in the creative arts, whether on its own or in the form of therapy, can provide comfort and relaxation and enhance emotional well-being by allowing an outlet for creative self-expression. "It can help to simplify and create what I call a sacred space for healing in a time that is very overwhelming for many women," she says.
For Kathleen King, of Sewell, New Jersey, that outlet was poetry. After undergoing radiation and chemotherapy, Kathleen began taking tamoxifen and felt a let-down because she felt she wasn’t actively fighting the cancer anymore. She first discovered Pink Ribbon Poetry, a group run by Virtua Health of New Jersey, while attending a survivor day at Virtua Hospital.
"One woman from the group got up and read her poem, and I was blown away," Kathleen recalls. "This woman was going through the same thing. I immediately went up and asked if I could join."
A trained poetry therapist actively engages Pink Ribbon Poetry participants to identify issues and express feelings, and empowers them to transform life issues through the use of the language arts. Three years later, Kathleen attends the group bi-weekly and finds relief and support through sharing her poetry.
"Hearing words from someone else that you may have thought but didn’t say is healing to me, and it gives you the courage to do things you never thought of doing before. It helps you reach out to others and appreciate every day," she says.
How to Get Started
No special artistic talent is needed to benefit from the creative arts, says Pat. Painting a masterpiece is not the goal. The process of making things is much more important.
"You don’t have to be a poet to join our group," Kathleen says. "We are given projects and topics as a starting point, then we write about it and can choose to share it with the group or not."
Kathleen also encourages women to try a couple of different types of creative art: "We’ve had members come and go because poetry wasn’t their thing, and that’s ok."
While taking part in a group provides support and inspiration, Pat says you can also benefit from creating art on your own. "All you have to do is sit down with crayons and paper. Or buy one of those inexpensive sets of acrylics, a pad, a canvas and one good brush. Just paint things you wouldn’t really care if you showed anybody. It gets you out of the mindset that you’re a sick person or a cancer victim," she says.
Practicing the creative arts is always beneficial, as long as you do it with the intention of healing, Dr. Gaynor says. But having your oncologist integrate it into your medical therapy adds value. "The more integrated your therapy is, the less you are getting thrown off your own inner harmony," he says.
Susan Cohen, MA, ADTR, CCLS, a dance/movement therapist at Tomorrows Children’s Institute at Hackensack University Medical Center in New Jersey, reported that collaboration with the medical team helps her understand a woman’s coping, adjustment and ability to handle the demands of treatment. It also helps her design regimens to support treatment goals.
Creative arts therapists are trained counselors familiar with the problems you cope with as a woman affected by breast cancer. They can work with you to select the most appropriate types of music, art, poetry or other creative art to ease your symptoms.
Although more scientific studies are needed to measure the value of the creative arts for women affected by breast cancer, the women and healthcare professionals we’ve spoken with reported a wide range of emotional and physical benefits. Whether alone or as part of an organized group, the creative arts can provide a means of expression, a release valve and a boost of confidence to help you cope with a breast cancer diagnosis, through treatment and beyond.
"Science is telling us how important it is to do these kinds of things," Dr. Gaynor says. You need to get in touch with your spiritual self, find out what nourishes you, and pursue it."
Creative Arts Resources
The creative arts encompass many fields, including belly dancing. Lori Flagg (photo, first row, l.) says joining a belly dancing troupe helped her regain range of motion and improve her memory. She also designed these costumes for her troupe.
Go to your local library, hospital, cancer treatment center or cancer support center to explore creative arts programs in your area. The following national organizations also provide more information on the creative arts and available resources:
Support centers with creative arts offerings:
- The Wellness Community: http://www.thewellnesscommunity.org
- Gilda’s Club: http://www.gildasclub.org
Creative arts therapy organizations:
- American Art Therapy Association http://www.arttherapy.org
- American Dance Therapy Association http://www.adta.org
- American Music Therapy Association http://www.musictherapy.org
- National Association for Drama Therapy http://www.nadt.org
- National Association for Poetry Therapy http://www.poetrytherapy.org
Other organizations related to creative arts therapy:
- Arts and Healing Network http://www.artheals.org
- Steps for Living – Creative Voice of Cancer Survivorship http://www.stepsforliving.org
Books/Videos/CDs
- The Artist’s Way (book by Julia Cameron), The Healing Power of Sound (book by Mitchell L. Gaynor, MD), Therapeutic Potential of Creative Writing (book by Gillie Bolton) http://www.amazon.com
- "The Healing Dance by Tahya" (video/DVD) http://www.tahya.com
- Music and imagery CDs by http://www.healthjourneys.com and http://www.meditationsoflife.com
- "Healing Cancer" guided imagery/music by Meditations for Life http://www.amazon.com
Suppliers of materials:
- Creative Memories (scrapbooking supplies) http://www.creativememories.com
- Dick Blick (general art supplies at discounted prices) http://www.dickblick.com
- Joann (crafts, fabrics, jewelry making, quilting, scrapbooking) http://www.joann.com
- Snapfish (online photo printing and sharing) http://www.snapfish.com
Miscellaneous
- Live Journal – free blog site with paid upgrades http://www.livejournal.com
- OncoLink Art – submit art to an online survivors gallery http://www.tinyurl.com/lj2d9
Cassandra Warthen: Finding Support from the Program that Saved her Life
It was just another "Manic Monday" in the Fells Point neighborhood in Baltimore, Maryland, and in keeping with tradition, WJZ-TV 13 "Eyewitness News" had selected a local group to deliver its own rendition of the popular Bangles’ song.
On this particular Monday, in October 2005, Cassandra Warthen was at home watching the newscast when staff members from the Baltimore City Cancer Center (BCCP) were the featured performers. Following their rendition of the song, the group extended an invitation for free mammograms at the University of Maryland Medical Systems. Cassandra ran for a pen to jot down the number, 410.328.HOPE. She had never had a mammogram, and the hard knot she found in her breast a few months earlier was becoming a concern.
An African-American woman who worked while raising three children on her own, Cassandra could not afford health insurance. But with her income, she also did not qualify for subsidized healthcare services. When she heard the word "free," she immediately scheduled a mammogram. Tests revealed Cassandra had Stage III breast cancer.
"I didn’t think I could get cancer," Cassandra explains. "I’m black, I’m thin, I’ve always been healthy, and there was no history of cancer in my family. I didn’t realize how prevalent breast cancer is."
Cassandra believes her circumstances and lack of awareness are quite common among under- and uninsured African-American women: "When they told me I had cancer, I never thought I was going to die because I had cancer. I thought I was going to die because I did not have insurance and could not get treatment."
Cassandra’s diagnosis came two months before insurance at her new job would become effective. Then she learned that BCCP at the University of Maryland Marlene and Stewart Greenebaum Cancer Center also offers comprehensive treatment to uninsured, low-income Baltimore city residents. The program is in partnership with the state of Maryland Cigarette Restitution Fund Program through the Department of Health and Mental Hygiene.
"I was so relieved to discover that BCCP would cover the full cost of my treatment," Cassandra says. "Without the stress of worrying about how I was going to pay, I could just focus on fighting for my life."
Cassandra’s treatment began with a course of chemotherapy, followed by surgery and reconstruction this past April. She recently began radiation treatment, and is considering participation in clinical trials.
"The fact that I had cancer did not actually sink in until I began chemotherapy," she recalls. "I knew so little about breast cancer before my diagnosis. There are so many women like me who do not understand how common it is."
It was this realization that transformed Cassandra into an advocate for education and awareness. The typically introverted court reporter has become a highly visible presence in the Baltimore metropolitan community.
Cassandra has been featured numerous times in the local news, and has spoken twice on behalf of BCCP at legislative hearings in Annapolis to help make the case for continued annual funding for the state program. In her remarks, Cassandra urged: "Don’t look at the statistics, look at me. Look at us as your mother, your sister, not a number. See the humanity of this program, not a piece of paper. See that people are affected by this. Everyone is affected."
Cassandra explains that one of the greatest hurdles she’s faced is learning to let others help. Always the caretaker, she had to allow her children to bring her to and from chemotherapy treatments, and look to the social workers at BCCP to ease her fears and offer guidance.
"People want to do something to help you when they find out you have this illness. You need to let them," she says. "It’s a hard lesson to learn—I’m usually on the other end—but it’s a good lesson."
Cassandra says she found great strength in the support group she belongs to at BCCP: "More than anything, you need to do whatever you can to not feel isolated. You cannot go through breast cancer alone."
She also feels strongly about the importance of knowledge. Upon her diagnosis, Cassandra conducted extensive research to learn as much as possible about breast cancer. By accessing a multitude of information on her own, she was able to utilize her time with doctors to discuss her individual situation, rather than asking basic questions and speaking in generalities.
In addition, Cassandra acknowledges the significant role of her faith and spirituality. A Buddhist, Cassandra believes that everything happens for a reason, and that "the causes you make now determine your future life."
"I’m not ready to say cancer is the best thing that ever happened to me, but I’m getting to understand it," she says. "It’s inevitable that when you have this illness, you face new challenges, and you learn to deal with everything much differently. After all, what could be worse than the possibility of losing your life? I’m a lot stronger now, more resilient, more peaceful. I’m not as invested in the same things as I was before. I’m so proud to be in this club."
Cassandra does not wear a wig. She wears her baldness with great dignity. And she is recognized constantly.
"Everywhere I go, people hug me," she says. "It feels very good. I don’t really like to be in front of people, but I’m doing this because there are a lot of women like me who need to get a mammogram—who need to know how common cancer is. If you can’t afford a mammogram, there are programs that offer free screenings for breast and cervical cancer. No one should die from breast cancer because they couldn’t afford to be screened.
"I will do anything to help this cause. If one woman gets a mammogram, it’s all worthwhile. Get a mammogram. Please."
The 49-year-old grandmother of three says she’s grateful to be alive, and looks forward to seeing all of her grandchildren graduate from college: "I’ll be the loudest one there."
If you need a mammogram but have little or no health insurance, call the National Breast and Cervical Cancer Early Detection Program toll-free at 800.232.4636 or visit http://www.cdc.gov/cancer/nbccedp
For more information about Cassandra, visit these websites:
http://wjz.com/video (Under "search," type 16515, 15748 and 15906 to see three videos)
