Publications
Just for Me: Supplement to Insight for Women Living with Advanced Breast Cancer, Fall 2008
Try out this special section focusing on your unique experiences as a woman living with metastatic breast cancer. In our first issue, learn how you can advocate for awareness of advanced breast cancer, about a new LBBC publication focusing on treatment options and how Darlene Cooke defines the breast cancer that has been part of her life for nearly 27 years. Find out ten ways LBBC can help you.
Table of Contents
Letters to the Editor
Dear Friends:
Over the years, many of you have asked us for extra information in Insight focusing on your unique experiences, "just for you." Ask and you shall receive!
In the next few issues of the newsletter, we will test run a special section, Just for Me, focusing on living with advanced (metastatic) breast cancer. Just for Me will have letters to the editor, a first-person story from a reader, news you can use and information about LBBC programs.
Just for Me is all about you, so let us know what you want to read about and how we can make it better. To get the conversation rolling, we’ll ask you a question in each issue. This issue’s question: What’s the best piece of advice you ever received about living with advanced breast cancer? Write to me with your answers and your comments, questions or a story you want to share at .
Warmly,
Jean
Celebrate Metastatic Breast Cancer Awareness Day
We encourage you to join the efforts of our friends at the Metastatic Breast Cancer Network to declare Monday, October 13, Metastatic Breast Cancer Awareness Day.
We think it’s time women with advanced (metastatic) breast cancer got a slice of the National Breast Cancer Awareness Month pie. As MBCN writes on its Web site, women with stage IV breast cancer are "often feared, frequently viewed as the failures in the breast cancer community, left to feel isolated and completely ignored."
To change these messages year round, women like you should be visible in October, when the world focuses on breast cancer. Your experiences must stand alongside the parade of stories about women with early-stage disease.
For the past four years, MBCN has worked tirelessly with LBBC and others to raise awareness of advanced breast cancer. MBCN furthered the cause in 2007 when the governor of Maine and the mayors of Chicago, New York City, Philadelphia and other cities proclaimed October 13 the first Metastatic Breast Cancer Awareness Day, prompting extensive news coverage and public outreach. This year MBCN, LBBC and our partners want more communities to get involved.
How to Get Your Legislators to Help
To reach a critical mass, we need you! You can help by requesting a proclamation, which cities and states offer as a public service. MBCN recommends calling the office of your mayor or governor and asking for the person who handles proclamations (visit statelocalgov.net for contact information for your community). You may need to fill out a form, and we recommend you attach a personal letter, sharing your experiences and explaining why Metastatic Breast Cancer Awareness Day will further our cause.
While you wait for a response, call the office and check on the status, politely reaffirming your goals. If you can, meet with local officials and share statistics about stage IV breast cancer. Should you succeed, you will get a signed copy of the proclamation, which you can share with local news outlets, businesses and nonprofit groups. Ask to display the proclamation at your cancer center, local library, bank and other public places.
For more information on how you can help, visit the Web site of the Metastatic Breast Cancer Network or contact us at or MBCN at .
Teleconferences Put Spotlight on You!
For the fifth year, we are proud to offer our October teleconference series, Advanced Breast Cancer: Treatment and Quality-of-Life Update, featuring two free teleconferences that focus on your medical and emotional needs.
Hope S. Rugo, MD, will talk about the latest advances in the management of advanced breast cancer on Wednesday, October 8. She will give an overview of the latest medical treatments, including chemotherapy, surgery and hormonal and other targeted therapies. Dr. Rugo will share information about medicines under study to fight cancers and manage side effects.
A member of our Medical Advisory Board and a medical oncologist at the UCSF Comprehensive Cancer Center, Dr. Rugo has a strong interest in discovering new therapies for stage IV breast cancer.
On Wednesday, October 29, Virginia F. Borges, MD, will cover symptom and side-effect management for optimal well-being. Dr. Borges will go over the potential side effects of common treatments, including neuropathy (numbness or tingling in the hands and feet), fatigue, menopausal symptoms, fevers, nausea and skin and nail problems. She will help you learn to recognize the difference between a treatment side effect and a symptom of disease and introduce you to complementary therapies and lifestyle changes that could enhance your quality of life.
Dr. Borges is a medical oncologist at the University of Colorado Health Sciences Center and a member of our Medical Advisory Board. Her research interests include new targeted therapies, cancer vaccines and improving quality of life.
Many thanks to Novartis Oncology, which provided the unrestricted educational grant that makes these teleconferences possible.
These teleconferences will be held from 12:00 p.m. to 1:30 p.m. Eastern Daylight Time (EDT). After the speakers talk, you will have the opportunity to ask your own questions. Sign up for one teleconference or both today.
Should you miss these events, we invite you to listen to an MP3/podcast version. Transcripts will be posted several weeks after.
Hot Off the Presses
We recently published the first in a series of brochures on metastatic disease. Understanding Treatment Options for Advanced Breast Cancer, written by Anna Shaffer, covers the latest therapies and offers resources to help you cope. This guide will help you navigate the complex landscape of breast cancer therapy, whether you are recently diagnosed, switching medicines or in ongoing treatment.
The first section, "What You Need to Understand to Discuss Treatment Options," explains goals of treatment and how metastatic breast cancer behaves differently than early-stage disease. Section II demystifies clinical trials, showing you how they work, how you can take part and why trials may be valuable to you.
The bulk of the brochure explores your treatment choices. Sections III and IV review available treatments in surgery, chemotherapy, hormonal therapy, targeted (biological) therapy and radiation. Learn about your options as a young woman, questions to consider in selecting treatment and methods to pay for therapy. We also explain how to keep up to date on treatments under study in clinical trials.
What happens once a new treatment begins? We cover that issue in Section V, which focuses on monitoring the success of therapy, managing ongoing treatment and moving forward with your life. Don’t miss the list of questions to ask about quality of life and the helpful appendix with the names of common treatments and explanations of how they work.
We worked with a team of doctors, nurses and social workers to make sure you got the most current, accurate information. A special thanks to Clifford A. Hudis, MD, our lead medical editor, and to all our contributors for their special efforts!
Thank you also to GlaxoSmithKline Oncology, which provided LBBC with the unrestricted educational grant that made this brochure possible.
Because treatments change rapidly, we will reprint this brochure frequently. Order your free copy today by visiting the Marketplace at lbbc.org or by calling us at (610) 645-4567.
Learning About You!
A few months ago we set out to learn about the needs of those of you who do not use the Internet to get medical information. About 150 of you answered the call, letting us know how you like to get medical updates, support and practical resources. We are reviewing your answers and look forward to sharing the findings in early December here on lbbc.org and in 2009 in Insight.
This survey was a follow-up to our 2005 study, Silent Voices, which reported on the desires of more than 600 of you who answered our questions online. You told us that you seek information regularly but often do not know where to find it. Since then, LBBC has expanded our programs on advanced breast cancer, often in partnership with our colleagues in the breast cancer community. To learn more about the programs that impact you, read and print out the article "10 Ways to Get Help from Living Beyond Breast Cancer."
Breast Cancer: A Very Personal Definition
It has been 27 years, on November 6, since my initial diagnosis with breast cancer. How can it be that I have lived with something for so long and still do not have a way to define it?
It is an integral part of my life, but what is it and where is it? Is it inside me, is it something that follows me, has it been with me all these years? Did it go away and come back in 2003, as an "advanced" version of itself? It is in my body, my left lung. Is it in my soul? Is it in my mind? Is it everywhere? Why can’t I give it a name? Does giving it a name make it real?
But it is real without a name. It is certainly known as breast cancer to the world, but what is the name I give it? It is my own personal version, and I should be able to give it the name of my choice.
Is it my enemy? Do I dislike it? Is hate a better word? It used to make me angry. I am not angry anymore, and it is still with me. I do not consider it an evil force; it doesn’t consume my life in a negative way. Am I in denial? Do I need to dig deeper? I don’t think so. After all, it has been with me for nearly 27 years, and I know it intimately.
Can it possibly be a friend? Don’t friends stay with each other through thick and thin? I am probably a different person because of it. Has it had that much influence over me? There is no way to separate us. Since it came, I married, had a career, traveled, even ran a marathon. I have had a good life with it. That’s what friends do, right? They share life’s experiences.
Perhaps my approach is the problem. Maybe it shouldn’t have a name. Maybe I should call myself something as a result of it.
Should I call myself a victim? Don’t things just happen to victims? I know I didn’t cause the breast cancer, although there are those who say it can be caused. It just happened to me, so maybe I am a victim. But I don’t feel like one. I think of a victim as someone who has no control. I have had plenty to say. I did most of what I wanted to do with my life despite it.
Should I think of myself as a survivor? Many call me a survivor. Doesn’t survivor mean getting through it, having it behind you? Isn’t it better to use survivor when the ordeal is over? I think of a survivor as an individual who overcomes. That is not my story. It will always live with me.
Is fighter appropriate? I could think of myself as an Amazonian woman, a one-breasted warrior. Does fighting it make me a warrior? If so, how do I fight it? I don’t have weapons and, more important, I don’t believe in war. But maybe I am at war and my weapons are drugs. Do I try to strike it down with each dose of Femara, Aromasin, Faslodex, tamoxifen? Chemo may be around the corner for a second time. Is it a better weapon for a warrior? No, I am not a warrior because I cannot strike it down. It will be with me until the end.
What about patient? Patient is used all the time to describe those of us under a doctor’s care. It is a narrow word to me and, frankly, I don’t like it. It implies illness. I am not ill. I do not feel under the weather, I do not look pale, I am not too thin, and I have not yet lost my hair. Perhaps some day patient will apply, but I doubt it.
So what do I call it? Maybe there isn’t a word or phrase for it. Maybe, after all these years, it is part of what defines me as a whole person. Maybe it just can’t be defined separately. Maybe it is just who I am.
Want to share your story in our next issue? Write to us at or call Janine at (610) 645-4567.
10 Ways to Get Help from Living Beyond Breast Cancer
1. Call our toll-free Helpline at (888) 753-LBBC (5222) and ask to talk with a woman living with advanced breast cancer.
2. Order a free copy of Frankly Speaking About Advanced Breast Cancer, from LBBC and The Wellness Community, to help you manage a new diagnosis of stage IV breast cancer.
3. Visit the Advanced Breast Cancer area of our Web site and read medical news and profiles of women like you.
4. Sign up for our teleconferences on October 8 and 29 on new treatments and methods to improve your quality of life, or listen to a replay on our MP3/podcast library.
5. Give and accept support by joining our message board for women managing metastatic breast cancer.
6. Read our brochure Understanding Treatment Options for Advanced Breast Cancer and pass it on to a friend.
7. Apply for a travel scholarship so you can attend the workshop on advanced breast cancer in Philadelphia at our November 1 conference, News You Can Use: Breast Cancer Updates and Insights.
8. Download free transcripts on novel therapies, managing uncertainty and end-of-life concerns.
9. Get your doctor, nurse or social worker a free copy of our Silent Voices report to help them better understand your needs for information, support and practical resources.
10. Send your workshop topic ideas to for our 3rd Annual Conference for Women Living with Advanced Breast Cancer on April 18-19, 2009, in the Philadelphia area.
