Publications
Insight, Winter 2009/10
In our winter issue, learn how journaling and other creative arts may improve your quality of life after diagnosis. Read how one woman gave back after her breast cancer treatment, and find out how you can help other women by participating in a clinical trial or research study. If you have stage IV breast cancer, get information on switching treatments.
Table of Contents
Writing Your Way Through Breast Cancer
Glynis Rhodes, 47, had always liked to write. During treatment for early-stage breast cancer, she decided to write a thank-you note to the people who had supported her. The note grew into a story, and the story into a gift she presented to her loved ones at a "feel better brunch." Soon Glynis found herself sending daily e-mails, composing poems, recording her feelings in a journal and even writing a brochure about people’s responses to her diagnosis.
"I did different kinds of writing," says Glynis, who works as a meeting planner in Philadelphia. "Some of it was therapeutic. Some was to exhale. And some was just things you could say so you don’t go crazy."
Laurie Kingston, 42, started her blog, "Not Just About Cancer," for a different reason—to control messages about her treatment. A communications professional in Ottawa, Canada, Laurie had never read blogs but thought they might allow her to "hold my feelings up and examine them, shape them, and keep them at a distance," she says in a book based on her blog, Not Done Yet: Living Through Breast Cancer. To her surprise, the blog had the opposite effect.
"Soon it became as much about the writing and the processing as it did about the message," Laurie says in an interview. "It also connected me to people who can relate, and that was tremendously important."
The creative arts offer a vast array of options for self-expression. Your interests will drive your choice of media, and your desire for connection will help you decide what, and how much, to share. Regardless of form, all arts have the potential to soothe the emotional aches of breast cancer and to help you process an experience that may never make sense to your heart.
"Cancer silences people," says Sharon Bray, EdD, author of A Healing Journey: Writing Together Through Breast Cancer. "It buries their stories. Creative arts help people reclaim their voices and honor what they feel and think. Part of healing is getting that out."
What the Research Shows
One option is writing, which is readily available, costs little and requires no special training.
Many people gain emotional, and sometimes physical, benefit from writing about their deepest feelings, studies show. These findings apply regardless of age, gender or financial situation.
Few studies focus on the breast cancer experience. One trial, published in the Journal of Clinical Oncology, found that women who finished treatment for early-stage disease and wrote down their deepest feelings about their diagnosis reported fewer physical symptoms and had fewer cancer-related doctor’s appointments than those who recorded only the facts of their treatment.
"What may be going on is that women who write about their emotions may have reduced physiological arousal such as lower heart rate, which may be connected with a lower level of physical symptoms," says Annette Stanton, PhD, a psychologist at the Jonsson Comprehensive Cancer Center and the lead trial investigator. "Also, women who express their feelings in writing may use medical visits more effectively because they have a place to express themselves emotionally."
Newer trials examine journaling for women undergoing treatment for early-stage and metastatic disease. Future research may look at writing workshops, blogging and social networking.
Telling Your Story
If you doubt your skills, remember that you probably write many times a day in the form of grocery lists, e-mails and directions.
"Everyone has the capacity to write things," says Dr. Bray, who had breast cancer nine years ago and runs writing groups for people with cancer. "It’s about having a story to tell."
Getting there can be challenging because writing "both distances you and connects you" to your breast cancer experience, says Barbara Abercrombie, who conducts workshops for The Wellness Community in Redondo Beach, California.
In the first chapter of her book Writing Out the Storm: Reading and Writing Your Way Through Serious Illness or Injury, Ms. Abercrombie tells the story of waiting in her doctor’s office for the news she had breast cancer. She took notes on the sights, sounds and smells around her: "If I keep writing," she says. "I won’t have to think about why I’m here."
On the other hand, "if you keep your pen moving so fast you can’t think, you’ll begin to move out of your own way and connect to a deeper part of yourself," she writes. In her workshops, Ms. Abercrombie asks attendees to write from prompts—themes from poems or memoir—but only for five minutes.
"That is key," Ms. Abercrombie says in an interview. "Otherwise, you agonize and want to write something wonderful. In five minutes, some amazing things can come up and you don’t know where they came from. I think writing is a way of tapping into your subconscious."
Writing in a nurturing and positive group can lessen inhibitions, but you might prefer to keep a journal on your own. The advantage of keeping a journal is that "you can let your anxiety spill out on the page," Ms. Abercrombie says.
Laurie, the blogger, began her journal in 2008. Several years earlier she had learned that her breast cancer had metastasized to her liver. After further treatment, she received a scan with no evidence of cancer. That’s when she decided she needed a private space for contemplation.
"None of this was supposed to be happening, so I had to figure out what was next," Laurie says. "Journal writing is a good way to not worry if I’m boring people or putting too much out there. This kind of writing is just as important to me to understand why I’m feeling the way I do, or to change the direction of my day."
A World Without Rules
A blank screen or piece of paper inspires fear in writers and non-writers alike. Whether you write alone or in a group, these ten tips will help you get started:
Leave your expectations behind. Forget grammar, spelling and style. Just pick up your pen and start writing. "Don’t worry about if it’s good," Glynis says. "If you’re writing how you feel, it will carry you."
Find a safe space to write. The place you write should allow "the creative process to flourish…but also enable your writing to truly be healing," Dr. Bray writes. That locale could be your bedroom, the waiting room of your doctor’s office, a coffee shop or a park.
Establish a "no censor" zone. Your journal "is the one place you can be absolutely honest," Laurie says. "There, you don’t have to worry about causing anyone unnecessary worries or working through your anger or frustration."
Write in full sentences. Or don’t. Write in narrative (paragraph) form, or compose letters to yourself, your doctor, your loved ones or your god. Record your feelings as a poem or prayer, or make a list. "Sometimes I’ll just write down what things are good in my life," Laurie says.
Tell a story. "The creation of a story, a coherent, complex narrative with a beginning, middle and end, is something we do implicitly as humans," Dr. Bray says. Write as if you’re talking to a friend, or rewrite the "history" of your day with a different ending.
Time yourself. "Don’t give yourself all morning to write," says Ms. Abercrombie. "Tell yourself you’re just going to write for five minutes." Once you start, don’t stop. If you can’t think of anything to write, write that down and see where it leads.
Try using a prompt. A quote from literature, an object or even a word from the dictionary can stimulate thinking. Start with the phrase "Something happens," as Ms. Abercrombie does as an opening prompt in her book. If you’re stuck, she says, "look out the window and write down what you see."
Create rituals and routines. Taking simple actions every time you sit down to write can help you to "treat your time with reverence and gratitude," Dr. Bray says. Your ritual can be simple—writing every day at the same time, adding a date and time with your entries or closing your journal entry with an inspirational quote.
Love your notebook. Whether you use a designer journal, a spiral-bound notepad or your laptop, make sure you like the look and feel of your "notebook." Keep it out so you don’t have to hunt for it.
Explore your world. Cancer might prompt you to write, but it won’t always be your focus. "As the weeks progress, a lot more than cancer gets written about. The writing opens up other unresolved issues," Dr. Bray says. Just remember, Glynis says, "Writing doesn’t have to be dramatic. It isn’t earth-shattering. It’s a small thing that does a big job."
To Share or Not to Share
At its core, writing is a private activity. But you may wish to share your writing in order to connect with others coping with cancer. If you do, remember to stay focused on your goals.
"Don’t let anyone compare you or your writing to anyone else," Glynis says. "Never, ever discount how you feel. And don’t discount it yourself."
If you share your writing in a group, feedback should focus on your experience, not on the words themselves. These groups are confidential, and no one will force you to read what you write.
Just because you put something on paper does not mean you have to keep it. Ripping up or burning something you’ve written can be therapeutic. Or you could share your writings with your family, especially if you find it challenging to tell them what you need.
If You Don’t Want to Write…
Writing is just one way to be creative. If you prefer visual media, consider drawing, painting, photography or collage. Use your hands to sculpt, carve, build, sew, knit or quilt. Sing or play a musical instrument. Or try movement, exercise or dancing.
Donna E. Smith, 43, of Glastonbury, Connecticut, discovered a passion for Caribbean dance after completing treatment for triple-negative breast cancer. "Finishing treatment accelerated my anxiety," she says. "I had to do a lot to not focus on, What if I die? What if I have to lose a body part?"
To cope, Donna signed up for a meditation class. She learned to visualize things she loves, like Caribbean culture. Although dancing had never been of interest, she found herself grooving to salsa, reggae and flamenco music. Dancing is "a wonderful outlet emotionally," she says.
Not every creative effort must lead to a significant life change. It needs only to have meaning for you.
"The most important thing is to find something that honors your unique way of self-expression," Dr. Bray says. "The most extraordinary things are created out of pain and anguish, and they don’t all have to be words."
Creative Coping: 10 Publications to Motivate You
There are thousands of books on the subject of writing for self-expression, and hundreds more that focus on the experiences of individual women affected by breast cancer. Below, we list a few publications recommended by or written by people we interviewed for Insight. Also, we encourage you to visit the Recommended Reading section on the Web links page of lbbc.org, which includes memoirs by women who have had early-stage or metastatic breast cancer. Most of these books are available at your local library or bookstore or may be purchased online. Send the names of your favorite books to , and we’ll add them to our Web site.
- Barbara Abercrombie, Writing Out the Storm: Reading and Writing Your Way Through Serious Illness or Injury. St. Martin’s Press, 2002, $16.99 Read the first chapter at the author’s Web site.
- Robin F. Bernstein and Cathy Moore, A Journal for Healing: Writing Through Pain and Illness. Main Street Books, 1996. This publication is out of print, but you can order copies online via Amazon.com and other online sites.
- Sharon Bray, EdD, A Healing Journey: Writing Together Through Breast Cancer. Amherst Writers & Artists Press, 2004, $14.95. Read the first few pages of and order Dr. Bray’s book at Amazon.com.
- Miriam Engelberg, Cancer Made Me a Shallower Person: A Memoir in Comics. Harper, 2007, $14.95. See a sample comic or order a copy of the book at Amazon.com.
- Heather Jose, Letters to Sydney: Every Day I Am Killing Cancer. Author House, 2005, $12.95. Purchase the book from the author at her Web site, and she will sign your copy.
- Laurie Kingston, Not Done Yet: Living Through Breast Cancer. Women’s Press, 2009, $23.95. Read more about and order Laurie’s book at the publisher’s Web site.
- Musa Mayer, Examining Myself: One Woman’s Story of Breast Cancer Treatment and Recovery. Faber & Faber, 1994, $10.95. Order a copy of Musa’s book at Amazon.com.
- James Pennebaker, PhD, Writing to Heal: A Guided Journal for Recovering from Trauma and Emotional Upheaval. New Harbinger Publications, 2004, $24.95. Read more about and order Dr. Pennebaker’s book at the publisher’s Web site.
- Ruth Peltason, ed. I Am Not My Breast Cancer: Women Talk Openly About Love and Sex, Hair Loss and Weight Gain, Mothers and Daughters, and Being a Woman with Breast Cancer. Bespoke Books/HarperCollins, 2008, $15.95. Read excerpts from and order copies of this book at the publisher’s Web site.
- Howard M. Rice, "Journaling: Healing with Words." Transcript from a Living Beyond Breast Cancer conference that offers practical tips for keeping a journal after a diagnosis of breast cancer. Visit our transcripts page.
Creative Coping: 7 Web Sites to Visit
Barbara Abercrombie’s Web site, Writing Time, contains reading lists, prompts to help you start writing and a community of people who use writing to cope with traumatic experiences.
The Web site of Sharon Bray, EdD, gives weekly writing prompts and tips on getting started.
At Breastcancerstories.org, blog about your experiences and search for stories by age and type of diagnosis, state of residence, ethnic/cultural background and more.
Listen to a podcast from the Everyday Health Network on Why Keeping a Journal Is Good Medicine.
Live Your Creative Vision, the Web site of Kay Marie Porterfield, offers advice on journaling, creating dolls and shrines, and overcoming fears of creative risk-taking.
Laurie Kingston’s blog, Not Just About Cancer, shares the story of her diagnosis with early-stage and metastatic disease, both at a young age.
A page on the Web site of James W. Pennebaker, PhD, a leading researcher on expressive writing, includes a list of books on writing and self-expression.
Will She Sing For Me
Glynis H. Rhodes is a meetings associate for the American Association for Cancer Research. She was diagnosed with early-stage breast cancer in April 2007 and wrote frequently during and after treatment. In addition to poems, stories and letters, Glynis wrote a pamphlet, What Every Friend Should Know, to help caregivers know what to say—and what not to say—to a loved one going through breast cancer treatments. In the story below, inspired by the baseball expression "It ain’t over ‘til the fat lady sings," Glynis writes about the many things she thought would happen but turned out differently than expected. Glynis lives in Philadelphia.
In the beginning I couldn’t see the end. I heard about it, read about it, but did not believe it. The end that came to my mind was final … deep down inside I prayed to be better but feared the worst. I just wanted to hear her sing……
I thought I would go through my treatment, and by the end of the year things would be back to normal. I was wrong; I am still waiting for her song. For the first few months it wasn’t even real. It was just multiple appointments, surgery, treatments, sad looks, telephone calls and ghosts. I don’t know if I slept so well because I was mentally or physically exhausted. I do know that every day when I woke up, the first thing I did was say, "Jehovah, am I going to die?" The second thing I said was, "Jehovah, thank you for this day." Time went on and I listened for her song.
In the middle of what I thought was the end, I took a turn for the worse and didn’t realize it. Is it better not to let someone know how badly off they are, how different they look, that they are failing? I know now that many truths were hidden from me. I think I am glad, but after all the time that has passed, I am still not sure. I hear songs, but it wasn’t her singing.
The days that I sat in my chair because that’s all I could do, the weeks I stayed upstairs because I had to. I remember telling my mother, "I know I am supposed to feel bad, but this isn’t normal." I knew when I went for my next appointment they would keep me, and keep me they did. My mother slept in a chair next to my bed. I felt like a 5 year old, and was happy to have a mother mommying me. She slept, I wept, still no song.
When all the bags were gone, the needles tossed and the port went out to shore, I thought it was over. Wrong I was—there is so much more. Cancer never leaves you. I no longer think of myself as a survivor because I am not. I am person living with cancer and its effects. Cancer moves in and changes everything. I no longer look like myself, think like myself or speak like myself. I don’t even know how old I am, but every day I am allowed by God’s grace to get up and try it all over again. Song, no song, I’m gone!
You may think your treatment will be over once the chemotherapy and radiation are gone…Sorry, but no. The next move is dealing with all the side effects, and learning all over again who you are, who you have become, and it’s not always a good thing. Yet, you are just glad that you are here, whoever or whatever you are, and you listen for the song.
I often wonder where she is, or even if she knows that I am waiting to hear her, for this part of my life to end. For my life to pick up and move on from the day before my diagnosis, the day my life changed. The day Glynis, as I knew her, faded.
We all know it’s not over until the fat lady sings, and I long to see her. For the total treatment, the medicine, the weight gain, the forgetfulness, the mistreatment of those who don’t understand…I am waiting patiently, because she has to return to me, the Glynis that I used to be. But for now, I just want to hear her song. I can picture her in her dressing room, I see the stage set, and the band sits still. With her song, my broken heart she will heal. Sing for me, lady; sing for me, please, and bring back my life, the way it used to be. Let this burden be lifted from me and joy once more bring…I shall have peace then, if the fat lady sings.
© Glynis H. Rhodes, January 28, 2009. May not be reprinted or used in any media without permission of the author.
Change
Change
A leaf falling from a tree twists and turns
Upon reaching the ground it is no longer a leaf
but what God uses to carpet the earth
When water is so cold it freezes branches in the trees,
Encased in ice water the branches in the trees become art
Change
When I was diagnosed with cancer at that moment
I stopped being who I was,
now I look forward to who I will become
As my chemotherapy began, I lost many things,
my hair, my skin tone, my smile, my shape
As my chemotherapy ended, I gained many things,
a stronger bond with those that I love and those that love me.
I have new memories, great stories to tell about my mother,
my sister, my brother-in-law, my two aunts
Change
Is change always good, no, yet it comes
Change is sometimes like the cousin
that you really don’t like but can’t turn away
because they are family
Change will do one of two things,
break you or make you stronger
I choose the latter
I am because of change
Glynis H. Rhodes is a meetings associate for the American Association for Cancer Research. She was diagnosed with early-stage breast cancer in April 2007 and wrote frequently during and after treatment. In addition to poems, stories and letters, Glynis wrote a pamphlet, What Every Friend Should Know, to help caregivers know what to say—and what not to say—to a loved one going through breast cancer treatments. Glynis lives in Philadelphia.
© Glynis H. Rhodes, April 15, 2008. May not be reprinted or used in any media without permission of the author.
Switching Treatments with Metastatic Breast Cancer
Over the last few decades, many treatment advances have helped women with advanced disease live for years with a good quality of life. If you’ve been diagnosed with advanced, or metastatic, breast cancer, you probably know that there are many treatment options available and that when one treatment stops working, there’s usually another to try.
When a treatment for metastatic breast cancer stops working, it can be distressing, even terrifying. Does it mean the cancer is resistant to all treatments? What’s next? Is there an order of treatments that has been shown to work better than a different order? Are there "right" and "wrong" treatment choices?
You will address many issues when it’s time to switch treatments, including the range of available therapies and how they may affect your day-to-day life and functioning. Understanding the following factors can help you talk more effectively with your healthcare team:
Think about metastatic breast cancer as a chronic illness with many treatment options.
When Joan Eskin, 59, from Orlando, Florida, was diagnosed with hormone receptor-positive metastatic breast cancer in 2004, she took hormonal therapy and chemotherapy but neither controlled the cancer. "To find out that the bone metastases had progressed despite the chemo was devastating," she recalls. "I realized I had not only been made extremely sick by the treatment, but it didn’t even do anything!"
At first this experience made Joan feel like she’d reached a "dead end," and she was reluctant to try other treatments. She was extremely thankful when her doctor explained that she shouldn’t give up.
"My doctor encouraged me to view it as a chronic illness," Joan says, "which is very helpful. I can see people dealing with all kinds of chronic conditions and still having a full life."
Since then, Joan has been on six different treatment regimens, and she reports living with a generally good quality of life, switching treatments when they stop working or when side effects get too difficult.
"I know now that choosing a treatment for advanced breast cancer is not going to be a matter of finding something that will work forever. This is a hit-or-miss thing," Joan explains. "My doctor is looking at me as a person, and at my history and my type of cancer, and telling me what the treatment options are each time. But I know that this is really a guessing game of what will or won’t work for a particular person. So every time I switch treatments," she adds, "I ask lots of questions to make sure I know what I’m getting into."
Work with your healthcare team to make the right treatment choices for you.
What Joan discovered through her experiences is important to keep in mind when you’re working with your healthcare team: namely, that there is no magic formula or prescribed order or combination of treatments that works well for everyone. As LBBC Medical Advisory Board member Ruth Oratz, MD, clinical associate professor of oncology at New York University School of Medicine, says: "There’s no cookbook recipe. Doctors need to exercise clinical judgment and take many things into consideration about each individual patient before making treatment recommendations."
Because there is no standard treatment, it’s very important that you feel comfortable with your doctor’s recommendations and that you’re able to ask questions and discuss options with your doctor and other members of your healthcare team.
"Trust is a big issue," Joan notes. "Not just with the doctor, but the entire treatment team: the nurse practitioner, the other nurses—I need to feel that there’s a good flow of communication among them and with me. I also know my doctor is consulting with other doctors and that he doesn’t think he knows everything, which is very important to me," she adds.
Know that many factors are involved in your doctor’s treatment recommendations.
Trusting your doctor and healthcare team is critical. In addition, it can be very helpful to know how many complicated factors the doctor has to consider when making treatment recommendations.
Medical Advisory Board member Hope Rugo, MD, a breast cancer specialist at the University of California, San Francisco, Medical Center, lists these factors:
Biology of the cancer. Does the cancer have hormone receptors? Is it HER2 positive? Are there other aspects of the cancer’s biology that might be relevant to treatment? Your treatment will be tailored to meet your needs and to tackle the specific characteristics of the cancer.
Extent of disease. Where have metastases been found? Which organs are involved? How much the disease has spread can make a difference in which treatments are chosen.
Organ function. How well are your lungs, kidneys and other vital organs functioning? It’s important to look at overall health, not just the cancer, when choosing treatments.
Symptoms. How much is the cancer affecting you in terms of causing unpleasant symptoms like pain or breathing problems? Reducing the symptoms can be a goal of treatment and can affect which ones you try.
Your desires and goals for treatment. You may base your treatment choices on the side effects and how much discomfort you’re willing to tolerate, taking into consideration how the cancer is responding to treatment. This is one of the major reasons why different treatments are right for different people.
Events and priorities in your life. After receiving several different treatments, your priorities can change and you may be more or less willing to accept certain side effects. Also, it may become more or less important to you to be able to enjoy events in your life without the effects of treatment. As Cheryl Mason, 44, from Toronto, Canada, notes: "At the beginning, if the doctor said, ‘Jump!’ I’d say, ‘How high?’ But now if something’s coming up like a trip or an event, I take time off [from treatment]. I don’t think the cancer will get worse because I took a week off."
Clinical trials and flexibility to travel. This, according to Dr. Rugo, can be one of your biggest considerations, especially if there’s a research study that may be appropriate for you. In general, both Dr. Rugo and Dr. Oratz emphasize the importance of talking with your doctor about clinical trials every time you’re thinking about switching treatments. "A clinical trial of a new agent or novel approach is always better than doing the next ‘standard’ thing," Dr. Rugo explains, "because it offers another option that isn’t approved yet but that may turn out to be effective."
Understand categories of treatment for advanced breast cancer.
Taking all of these factors into consideration, you and your doctor may look at three general categories of treatment: hormonal therapy, targeted therapy and chemotherapy. (Radiation therapy does not replace these three categories of treatment, but it may be used on a tumor if it’s causing symptoms.)
To help you and your doctor make the best decisions, it’s important that you get a biopsy of the cancer, even if you had one at an earlier time. In some cases—although not often, Dr. Oratz says—the cancer may have changed in a way that makes it more or less responsive to a particular treatment.
Hormonal therapy. If you have hormone receptor-positive metastatic breast cancer, hormonal therapies are often the first choice of treatment because they tend to have fewer side effects than chemotherapy. If you had hormonal treatment for early-stage breast cancer, you can still get it for metastatic disease—probably starting with a different one than you had before but sometimes even trying the same one again. As Dr. Rugo emphasizes, if the cancer is no longer responding to hormonal therapies, you may still be able to find a clinical trial that combines hormonal therapy with another agent that helps increase its effectiveness.
Targeted, or biologic, therapies. These treatments target particular characteristics of the cancer that control how it grows and behaves. A number of new targeted therapies for breast cancer are being studied. Trastuzumab (brand name: Herceptin) is the one that’s been around longest. You may have had it if you have HER2 positive cancer. Your doctor may recommend trying it again, or you may try lapatinib (brand name: Tykerb), a newer treatment that targets the same type of cancer.
Chemotherapy. Chemotherapy can be a very effective treatment for triple-negative breast cancer (cancer that is hormone receptor-negative and HER2 negative), and it is also used to treat hormone receptor-positive and HER2 positive cancers. Regardless of the type of cancer, you may have had chemotherapy before, and you may be scared to get it again.
When Cheryl was diagnosed with metastatic disease, she says, "I thought I would be on chemo for the rest of my life, and it was very difficult to start it [again], knowing how hard it would be." Yet the cancer responded well to the first round of treatment, "So after a few months, my doctor said I could take a break," she reports. "If I had been told at the beginning that [I might have had this experience], it would have helped. I wish I had had that hope."
If you had chemotherapy for early breast cancer, your experience may be very different for a stage IV diagnosis. Your doctor may not recommend the same aggressive treatment doses and schedules. You can now take some chemotherapies orally (by swallowing a pill) or through an injection, rather than intravenously (by IV).
Make treatment decisions that are right for you.
Living with metastatic breast cancer means a lot of treatment a lot of the time. But with new and emerging medical advances, it also means you may have a longer and better quality of life than women who had this disease in the past. Think about metastatic disease as an illness that you can manage, together with your healthcare team, in a way that best balances controlling the cancer and minimizing treatment side effects.
To learn more about specific treatment options and other issues, read LBBC’s series of booklets for women with advanced breast cancer, available at lbbc.org’s Marketplace.
Healing Through Helping
Carmen Reiners was diligent about getting her annual mammogram. But that is not what saved her. It was August 2004, and Carmen’s mammogram appeared completely normal. It was her left shoulder that was giving her trouble. She was only 41 years old, but her bones were just aching. Especially that left shoulder.
Her primary care physician sent her for an MRI of the shoulder, which showed a tumor inside the bone. The image also captured half of her left breast, and indicated what the doctor thought might—or might not—be calcification.
Carmen’s doctor ordered biopsies of both the bone in her shoulder and the breast. The bone biopsy was benign. The results of the breast biopsy showed stage I cancer.
"I was shocked," remembers Carmen. "It was really tough to accept. Nobody in my family ever had breast cancer. None of my friends ever had breast cancer. I was the first."
She shared the news with her husband at that time. She told no one else. "I was raised in a culture where talking about cancer was taboo," she explains. "For Hispanic women like me, you don’t tell anyone you have cancer. I was quiet."
It wasn’t until a few days before her mastectomy that Carmen’s husband insisted she tell the couple’s two children and their extended family.
"My family was so upset that they didn’t know sooner," recalls Carmen. "But I was afraid; I was ashamed. Once I told them, they were so supportive. I learned something that day. I knew I had to find a way to talk about my cancer."
When she started chemotherapy, a still-naïve and quiet Carmen was unaware that treatment would compromise her immune system. She was around sick children, sick adults and people who smoked, and several weeks after starting chemotherapy, she was admitted to the hospital.
"I was so sick, I felt like I was going to die," she says. "I learned another important lesson that day. I had to stay away from potential dangers. I had to protect myself.
"For me, it was a long journey," says Carmen. "I did not look for the support I needed—spiritually, physically or mentally. I finally realized I had to educate myself. I had to get out of the shell that I was raised in. I needed to stop hiding, to seek help and support, to talk about it. It took a long time for me to tell people that I had a mastectomy, that I had reconstruction, to say out loud, ‘Yes, I am a cancer survivor.’"
These days, Carmen can talk to anyone about anything. And she is committed to doing everything in her power to encourage other Hispanic women to break through the cultural taboos and talk openly about breast cancer.
"If someone had helped me, my journey would have been different," says Carmen. "Women who are passing through cancer need to know that they are not alone. If you look for help, there are a lot of people out there who want to help—people like me."
Carmen finds great fulfillment sharing her knowledge and optimism with those who are beginning cancer treatment. "By helping others, I help myself," reflects Carmen. "It lifts me up. I know I make a difference."
Carmen also participates in countless activities to raise awareness of and funds for breast cancer. She has inspired her children and her extended family to become active in volunteerism as well. When Carmen was going through chemotherapy, her daughter and niece walked in the Susan G. Komen for the Cure Breast Cancer 3-Day in her honor.
This past July, Carmen made her first missionary trip, spending ten days in Nicaragua with a medical team.
"I’ll do it again," she reports. "It was a wonderful experience—one I’ll never forget. I would have never done a trip like this before I had breast cancer. Now, I’m more about giving than receiving."
Her tireless efforts are in addition to her full-time job with a nonprofit energy assistance organization where she helps people in need find assistance with their home heating bills.
Today, the 46-year-old grandmother of two takes better care of herself then ever. "I eat healthy, I exercise, I take vitamins," she reports. "I spend time with people who are positive. And every morning, I look in the mirror and say, ‘Carmen, you look wonderful today.’ I’m a new woman. I have a new body. You need to love yourself the way you are—scars or no scars. I’m more beautiful now than before.
"People are always telling me, ‘Carmen, you look happy.’ I am happy. Cancer has changed my life completely—for the good. I see life in a different way. Life is beautiful—I love every minute of it. And I’ll continue to do what I’m doing—to try to send a message to other women. I want to help others, so they never have to feel alone."
Research Studies: A Tool in Your Treatment Kit
In the weeks after a breast cancer diagnosis, you have so much to think about. And yet that’s the time your provider is most likely to ask whether you want to take part in a research study, also known as a clinical trial.
If the thought of research scares you, you’re not alone. In the United States, only 3 percent of women with breast cancer enroll in clinical trials. The reasons vary but include worries about control over treatment options and fears of becoming a "guinea pig."
The results of these concerns are clear. Today, researchers have less than half the 43,500 enrollees they need for high-priority trials. White women sign up more often than women of color, even though breast cancer affects people of all ethnic backgrounds. Not having enough participants delays studies that could advance treatment for everyone.
Adding to Your Choices
Research studies are not for everyone, but many more women could take part than do so today. They are another option in your treatment toolkit, a chance to possibly access a new therapy or approach that could be more effective and safe or cause fewer side effects than the standard.
The term "clinical trial" sounds scary, but it’s really just an opportunity to take part in a tightly controlled test that measures the effects of a medicine, surgery or treatment. Sometimes trials study new combinations of medicines or therapies, or they examine the order in which you take medicines, the amount you take or how you take them (as a pill or injection).
Regardless of what they study, clinical trials (with the exception of phase I studies) offer you at least the current recommended treatment for your specific type of breast cancer. Added to the recommended treatment will be either the medicine/therapy under study or a placebo (inactive substance). Your healthcare team will monitor you closely, and you may leave the study at any time for any reason.
Getting Started
You can search for studies on your own at Web sites like cancer.gov/clinicaltrials or cancertrialshelp.org. But your best first step is to talk with your healthcare team. Learn what questions to ask in our free Guide to Understanding Breast Cancer Treatment Research Studies, available at the lbbc.org Marketplace. This brochure covers the basics of clinical trials, potential benefits and risks, the process of informed consent and laws that protect you.
As of mid-October, clinicaltrials.gov listed more than 1,400 open studies in breast cancer. Among them:
CALGB 40601. Researchers seek 400 volunteers with HER2 positive, stage II or III breast cancer for this study that compares a standard regimen to two study treatments. Participants will be randomly assigned to receive one of three treatments before surgery: paclitaxel (brand name: Taxol) plus trastuzumab (brand name: Herceptin); paclitaxel plus lapatinib (brand name: Tykerb); or paclitaxel plus trastuzumab and lapatinib. A targeted therapy similar to trastuzumab, lapatinib is approved only for use in HER2 positive breast cancers. By enrolling in this study, you could gain access to lapatinib, which researchers believe may work as effectively as trastuzumab for early-stage breast cancer but cause fewer side effects.
NSABP B-43. This trial compares whole breast radiation therapy plus trastuzumab to radiation therapy alone in 2,000 women with HER2 positive ductal carcinoma in situ (DCIS). To measure the impact of adding trastuzumab to standard radiation treatment, the researchers will compare the participant groups to see which one goes longer without developing invasive cancer or a return of the DCIS. Participants randomly assigned to the study group may get extra benefit from the inclusion of trastuzumab in their therapy.
CALGB 40503. In this study of 502 women with estrogen or progesterone receptor-positive breast cancer, researchers will compare hormonal therapy alone to hormonal therapy plus bevacizumab (brand name: Avastin) in stage IIIB or IV disease. Enrollees may be any age, but if you still get your period you must take medicine to temporarily stop it. Participants will be randomly assigned to take a standard treatment of either tamoxifen or letrozole (brand name: Femara) or the study treatment of tamoxifen or letrozole plus bevacizumab. Those in the study group may benefit from adding bevacizumab to the standard therapy.
BRE 01-08. All 60 volunteers in this phase II study for women with triple-negative breast cancer will receive two regimens before surgery: nab-paclitaxel (brand name: Abraxane), carboplatin (brand name: Paraplatin) and bevacizumab, followed by doxorubicin (brand name: Adriamycin), cyclophosphamide (brand name: Cytoxan) and bevacizumab. This trial, which is open to those without metastatic disease, will examine whether adding bevacizumab to chemotherapy effectively shrinks breast tumors. To take part, you must agree to undergo two extra biopsies so researchers can study how the cancer responds to the therapy. The neoadjuvant (pre-surgical) treatment may allow some participants to avoid mastectomy and instead get breast conservation surgery.
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