Publications
Just for Me: Supplement to Insight for Women Living with Advanced Breast Cancer, Winter 2009/10
Get information on the United States Senate and House resolutions declaring October 13 Metastatic Breast Cancer Awareness Day. Learn about new guidelines for managing metastatic breast cancer, get tips on coping with discomfort, and read how a daughter supported her mom during advanced breast cancer treatment.
Table of Contents
Coping with Anxiety
In our last issue of Just for Me and on Facebook, we asked you to respond to the question: How do you manage anxiety? Two Facebook fans shared their experiences:
My anxiety level has gone way down since I’ve reached a point where my disease is stable. I do get "scanxiety" as I go for full-body scans every six months. My antidepressant really helps with all of this.
Terri Dilts • Lake Forest Park, Washington
The anxiety never goes away. It just fades into the background most of the time. Then, when you cough, you think you have lung mets, and when you get a headache, you think you have brain mets. Those thoughts were never part of your thought process before. I am one year out from my stage IV diagnosis, and I am trying to enjoy whatever time I have with the people I love.
Katy Cox Johnson • Johns Creek, Georgia
LBBC Promotes MBC Awareness
Thanks to the efforts of the Metastatic Breast Cancer Network (MBCN), we are pleased to announce that the United States Senate and House have passed resolutions declaring October 13 National Metastatic Breast Cancer Awareness Day.
"We hope that every year on October 13, groups, women and hospitals will organize events for and about people living with metastatic breast cancer," says Susan Davis, advocacy education chair at MBCN. "We are hoping that it will be a huge help in gaining recognition of what we need to live longer and live better."
You made this day possible by responding to LBBC’s request to encourage your congressperson to support the resolution. We thank you for helping LBBC and MBCN call attention to the issues you face.
On Metastatic Breast Cancer Awareness Day, LBBC participated in The Many Faces of Breast Cancer: Living With Advanced Breast Cancer, an event hosted by AstraZeneca in partnership with the American Cancer Society and the Philadelphia affiliates of Susan G. Komen for the Cure and The Wellness Community. More than 40 women and caregivers attended the event, which focused on the needs and issues of women living with metastatic breast cancer.
A panel of medical experts provided insight into the medical and emotional impact of advanced breast cancer, including new available treatments, therapies in the pipeline and quality-of-life issues such as diet, nutrition and psychosocial coping. Our director of programs and partnerships, Elyse Spatz Caplan, MA, moderated discussion during the event.
"The fact that there is a day within Breast Cancer Awareness Month that focuses on metastatic breast cancer makes women living with that diagnosis feel validated," Elyse says.
LBBC is dedicated to making sure your unique needs and issues are recognized during Breast Cancer Awareness Month. In 2005 and again in 2008, LBBC conducted a needs assessment survey and learned that you want access to information and connections with women who share your diagnosis.
October Series Offers Info
If you missed our sixth annual teleconference series, Advanced Breast Cancer: Living Well Through Information and Support, MP3 recordings are now available at lbbc.org. This year, the series featured three teleconferences instead of two, each held at a special evening time from 7:00 p.m. to 8:15 p.m.
William J. Gradishar, MD, FACP, discussed the latest treatments and clinical trial updates on October 14. He explained how to manage symptoms and side effects in order to live well every day.
On October 21, Generosa Grana, MD, gave an overview on understanding clinical trials, including how to access research studies and the benefits and risks of participating. Dr. Grana also provided information on available trials and covered the latest research on breast cancer metastasis.
Dr. Grana, an LBBC Medical Advisory Board member, is the director of the Cooper Cancer Institute and head of the division of hematology/medical oncology of Cooper University Hospital in Camden, New Jersey. She focuses her clinical practice, community education efforts and research on breast cancer, cancer and genetics and cancer prevention.
On November 5, Lillie D. Shockney, RN, BS, MAS, discussed what it means to have the best quality of life while living with advanced breast cancer. She shared information on how to make good treatment decisions and communicate short- and long-term goals with loved ones.
Ms. Shockney is a member of our Medical Advisory Board, a university distinguished service assistant professor of breast cancer and assistant professor in the departments of surgery and gynecology at John Hopkins University School of Medicine. Her research interests include quality-of-life issues.
Many thanks to our presenting sponsor, Veridex, and benefactor sponsor, GlaxoSmithKline Oncology, for making this teleconference series possible.
A Daughter’s Hopeful Challenge
When the new year rings in at midnight on December 31, I always hope and pray that the year to come will be a good one. Soon after starting this new year, I was in the midst of planning my wedding and fixing up a new house my fiancé and I just bought. Things couldn’t get any better. But that’s when I found out my mom, an LBBC volunteer, was diagnosed with stage IV breast cancer. The hope for a good new year was shattered, and all plans came to a screeching halt.
After being hit with the news, I started asking more questions, doing research and trying to come to terms with the fact that it was going to be a long and overwhelming year. I decided to take off the day of my mom’s surgery, and my dad, my brother and I sat in the waiting room for hours waiting to hear from the doctor. We were relieved when she told us my mom could fight this, but we knew we would have to be on our toes 24/7 to help care for her while she went through treatment.
In the months to follow, my mom had an amazing support system that included our extended family and her friends. My dad, my brother and I were incredibly grateful to have their help, because we knew we couldn’t do it alone. They were available to take her back and forth to chemo, and many of her friends took part in making jewelry for a small fundraiser my mom organized to support LBBC.
My mom’s diagnosis changed her life and mine. It was extremely difficult to see her go through treatments, lose her hair and just feel completely helpless. I am her only daughter, and I felt like I needed to take charge in some way or another.
Besides helping to care for her physically and emotionally, I decided to do things to lift her spirits like starting a team for Race for the Cure. It was unbelievable to see how many people came out to support my mom, and it made me feel proud knowing I gathered them together for her. I also hosted a barbecue for my mom’s 52nd birthday at my new home. I knew my mom was enjoying herself because she wore a "Birthday Princess" hat all day.
Besides the barbecue, my mom received an amazing birthday gift in July. She found out she had no evidence of disease in her body. Our family was beyond thrilled. My mom’s faith, good spirits and positive outlook on the future got her to this point. For her family, it felt like a huge weight had been lifted off everyone’s shoulders. We’re not in my mom’s shoes, but we’ve all been standing right next to her.
It has been about five months since my mom got the good news. Her hair is growing back, she has started working again and she is immersing herself in the continuous planning of my wedding. I haven’t lost hope on this year. It wasn’t what I’d ever imagined it would be, but it’s turning out to be a year of perseverance, change and hope. I am confident it will have a happy ending.
Coping with Discomfort
Our brochure, Understanding Symptoms and Treatment Side Effects of Advanced Breast Cancer, can help you learn about dealing with pain, fatigue, emotional issues and more. Below we share an excerpt that focuses on what you can do to cope. Order your free copy of the full guide today at lbbc.org’s Marketplace or by calling us at (610) 645-4567.
Tips to Keep in Mind When You’re Dealing with Symptoms and Side Effects
Be prepared. Knowing about possible side effects ahead of time can help you prepare mentally as well as physically for what might happen with each treatment. Keep in mind that your team is required to tell you about all possible side effects, but just because side effects could happen does not mean that they will.
Know your options. Discuss and understand the different options you have for treatment and why your doctor chose or recommended a certain option. Ask in advance what signs and side effects you should monitor and what interventions are used to prevent and treat them.
Focus on your quality of life. With advanced breast cancer, the goal of treatment is to extend survival with the best possible quality of life, so getting help with symptoms and side effects is key.
Keep a log. Record any side effects you have along with medicines you take to treat them. Include how long and severe the side effects are and to what extent the recommended treatment impacts them. Jot down questions that may come up so you can remember and review them at your next office visit.
Speak up! Always tell healthcare providers what’s bothering you and ask for help if anything interferes with your daily life, regardless of whether you think you know what is causing the discomfort.
Speak to others. Many women find it very helpful to talk to others who are going through the same types of treatments and having similar symptoms/side effects. You may want to try the LBBC Helpline at (888) 753-LBBC (5222), with a personalized matching service that connects you to women in similar circumstances.
Find what works for YOU. Treatments, as well as the cancer, affect each woman differently. Listen to what others have to say, then take the time to see how your body responds to each treatment and find remedies for symptoms and side effects that work best for you.
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