SUMMER 2008 NEWLY DIAGNOSED Focusing on your unique experiences as a woman newly diagnosed with breast cancer NEWS FOR THE NEWLY DIAGNOSED Denosumab May Repair Bone Loss in Women Taking Aromatase Inhibitors By Mary Alice Hartsock omen with early-stage breast cancer taking aromatase inhibitors (AIs) increased their bone density by taking the new medicine denosumab. This Phase III study tested denosumab’s ability to rebuild bones in women who experienced bone loss while taking AIs. W by blocking the receptor of RANKL, preventing osteoclasts from attaching to it. This medication is under study and has not yet been approved for use in breast cancer by the U.S. Food and Drug Administration. Study Design About AIs and Denosumab AIs slow the growth of estrogen receptor-positive breast cancers, or cancers that require the female hormone estrogen to grow, by reducing body levels of estrogen. Because estrogen helps to strengthen bones, the estrogen-blocking capabilities of AIs can have a negative impact on bones. Studies have shown that women who take AIs experience more decreases in bone mineral density and fractures than those who take a placebo (sugar pill). Denosumab, a medication under study to treat osteoporosis, may repair or prevent bone loss by interfering with a molecule called RANKL, which directs the functions of osteoclasts. Osteoclasts, cells that remove the protective coating around the bone, are able to form, function and survive only when RANKL is present. Denosumab may improve bone density Women ages 18 and over who experienced bone loss while taking AIs were randomly assigned to take denosumab (127 women) or placebo (125 women) every six months for four doses. The doctors and the women did not know which medication the women received. The women were instructed to take calcium and vitamin D daily. Before the women started treatment, their doctors checked their bone mineral density to measure the impact of the medicine. out the body, including the hip joint and the wrist. At 12 months, 97 percent of the denosumab group did not have bone loss of the lumbar spine versus 36 percent in the placebo group. At 24 months, those numbers grew to 95 percent and 34 percent, respectively. Side effects were similar between the groups. The researchers concluded that women with early-stage breast cancer who have low bone density from AIs may benefit from twice yearly treatment with denosumab. What This Study Means for Me More research is needed to determine whether the results of this small trial can be sustained among larger numbers of women. If you have early-stage breast cancer and are taking an AI, your doctor may know of clinical trials testing denosumab to protect your bones. Your doctor also may recommend extra steps to improve bone health, including getting enough calcium and vitamin D. You may also be able to take one of the medicines already approved for maintaining or improving bone strength. Talk with your doctor to find out the best ways to protect your bones. Study Results After 12 months, x-rays indicated that the women taking denosumab experienced a 5.5 percent greater increase in bone density in the lower back than women in the placebo group. At 24 months, the increase was 7.6 percent greater than the placebo group. The women also experienced increases in bone mineral density at the hip and through- Read more breast cancer news at lbbc.org’s website community for women newly diagnosed with breast cancer. This section offers information on medical and quality-of-life issues specific to your needs. Access topics of interest to you, ranging from targeted treatments to anxiety and depression to side effects and pain management. Other features include updates on clinical trials, profiles of women recently diagnosed, answers to frequently asked questions, message boards and more. Log on today! Dear Friends: Welcome to Just for Me! Over the years, some 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 Insight, we will test run a special section focusing on the first two years after diagnosis. 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 please let us know whether you like it and what other stories you want to read. If you feel Just for Me doesn’t apply to you, I encourage you to pass it along to a friend. Please contact me anytime at firstname.lastname@example.org with your comments, questions or a story you want to share. Warmly, Jean A. Sachs, MSS, MLSP Introducing our... Guide to Understanding Your Emotions O ur just published Guide to Understanding Your Emotions will help you make sense of what you are feeling, whether you are recently diagnosed or months or years from treatment. The six sections of the brochure explain common (and not-so-common) emotions, signs of anxiety and depression, when to consult a healthcare professional, responding to your emotions, understanding your feelings after initial treatment ends and practical strategies for moving forward. The guide, by Mary Alice Hartsock, was reviewed by a team of healthcare professionals and women like you. Below we share several sections. Order your free copy of the full guide today at lbbc.org or by calling us at (610) 645-4567. Reminders of your breast cancer may seem like they are everywhere. Frequent news coverage and statistics about breast cancer can influence your feelings. Hair loss, weight gain or loss, scars, insomnia, fatigue, lymphedema and difficulties with intimacy can alter your body image and self-esteem. It is common to feel uncertain early on and over time about how surgery, chemotherapy, radiation and hormonal therapy may impact you physically. You may be especially concerned about the ways your lifestyle and the lifestyles of your loved ones could change because of your treatment. You may worry that you How Treatment Impacts Your Emotions For some women, fear about survival or worries about recurrence and family can consume life during and after treatment. Making lifestyle changes and focusing on aspects of your life that help you feel better are useful ways to cope with your feelings. will not be able to maintain your job, insurance and income if you must take time off work for treatments or sickness. Plans in your life may have to be put off, or you may resent that you do not feel “normal” anymore. Finishing treatments such as chemotherapy and radiation can be a relief, foster a sense of accomplishment and be difficult, all at the same time. When treatment ends, you may feel you are losing frequent contact with the medical and personal support teams you count on. You are not alone; these, too, are feelings many women share. If your feelings become more intense and interfere with your daily life, consider talking to a member of your healthcare team to determine if you are experiencing an anxiety disorder or clinical depression. Healthcare professionals can help you to identify mental health resources that are available to you. On your own, you also may wish to seek out a mental health provider who has experience working with women affected by breast cancer. Looking for Help There are a variety of ways to respond to sadness, anxiety and depression. You may discover that talking to a mental health professional such as a psychologist, social worker or psychiatrist can help you work through and learn to cope with your emotions. Also, making lifestyle changes and focusing on aspects of your life that help you feel better are useful ways to cope with your feelings. Find a friend who is willing to talk when you need her. Seek out a support group to maintain connection with peers who are facing similar challenges. You may need to educate your family, friends and co-workers about your ongoing needs as you recover. Complementary methods such as relaxation techniques or physical activities such as walking, Tai Chi, yoga or other forms of exercise may reduce symptoms of anxiety and depression. Some symptoms that are especially responsive to these interventions include poor sleep, heart palpitations and agitation. These interventions also may help you to establish a sense of control over your life. Working with a healthcare professional, you may choose to use prescription medications during the most difficult emotional times. There is no single solution to addressing your feelings; you should choose the methods that make the most sense for you. es less often can leave you with unanswered questions when you notice changes in your body. It is okay and normal to feel this way, but if you begin to feel hopeless or your feelings gradually worsen, you may want to talk to a mental health professional. As you transition into your post-treatment life and start returning to your regular routine, your personal support team may seem less present. When your loved ones see that you are feeling better on the outside, they may not understand that cancer and cancer treatment are still affecting you on the inside. Still, you may feel angry or abandoned because of the change in the amount of support they are giving. Try talking to your family and friends to help them understand how you are feeling. Find a friend who is willing to talk when you need her. Seek out a support group to maintain connection with peers who are facing similar challenges. You may need to educate your family, friends and co-workers about your ongoing needs as you recover. 10 Ways to Get Help from Living Beyond Breast Cancer 1. Call our toll-free Survivors’ Helpline at (888) 753-LBBC (5222) and talk to a woman with a similar diagnosis. 2. Order a free copy of LBBC’s Guide for the Newly Diagnosed and learn about the biology of breast cancer, the choices you face and how to make informed decisions. 3. Visit the “Newly Diagnosed” area of our website at lbbc.org/newly-diagnosed.asp and read medical news and profiles of women like you. 4. Sign up for our teleconference on August 13 on menopausal symptoms or on September 17 on diet and nutrition, or listen to a replay for a month after the event. 5. Join our message board for newly diagnosed women at lbbc.org/forum/default.asp to give and accept support. 6. Read our book Getting Connected: African-Americans Living Beyond Breast Cancer, get information and comfort, and pass it on. 7. Visit youngsurvivorsconference.org to learn more about our 9th Annual Conference for Young Women Affected by Breast Cancer in Dallas in February 2009 or to listen to recordings from the 2008 conference. 8. Download free transcripts on early-stage breast cancer, your “new normal” and bone health at lbbc.org/transcripts.asp. 9. Share We Celebrate Tomorrow: Latinas Living Beyond Breast Cancer with a Spanish speaker by flipping it over and reading it in Spanish. 10. Apply for a travel scholarship and meet us in Philadelphia for our November 1 conference, News You Can Use: Breast Cancer Updates and Insights. Fearing a Recurrence Breast cancer recurrence is one of the most common fears that can impair your quality of life. Your fears of recurrence may change over time, depending on how long you wait between doctor’s appointments and followup exams, your health status, how you cope generally and other things going on in your life, such as holidays, family milestones or anniversaries of your diagnosis. You may hear about a friend or a famous person diagnosed with breast cancer, and the news could trigger memories or emotions around your experience. Milestones can trigger emotions—you may experience more intense joy at happy occasions or mixed, bittersweet emotions on a variety of occasions. After you finish treatment, you might be ready to move on with life and want to stop thinking about cancer. You might become sad about having to go to follow-up visits or experience anxiety during regular testing. It is important to continue going to follow-up appointments, even if you do not want to think about cancer. To lower your anxiety around follow-up appointments, consider doing yoga or meditation, finding a supportive friend who can accompany you to medical appointments or talking to a mental health professional. Your Emotions After Initial Treatment Completing initial cancer treatment can stimulate a variety of feelings and reactions. During treatment, you may not have had time to think about all that has happened. After, you may experience a period where you feel vulnerable because you are no longer “proactively” fighting the cancer. You might become more nervous about aches and pains or other symptoms. Seeing doctors and nurs- When you are ready, we encourage you to call our Survivors’ Helpline at (888) 753-LBBC (5222) for guidance, information and peer support. Our trained volunteers are here to listen and help you. See additional resources on the reverse side. Bald Chicks Rock or I Was Diagnosed with Breast Cancer, and All I Got Was a Bald Head By Terri Welch S ome people cry after their breast cancer diagnosis. I bought pink ribbon jewelry. I woke up in the recovery room, and my surgeon said, “Well, it was cancerous.” I immediately thought, “Well, I had breast cancer, but now I don’t. Whew! Glad that’s over! Let’s buy some jewelry to celebrate!” It never even occurred to me that I’d have to go through chemo and radiation and all that hoohah. It wasn’t until I went to see the oncologist that reality struck. Oh. Chemo. I’m going to lose my hair. And feel really yucky. Wow. Though I had my moments of depression afterward, and a few bouts of crying, I quickly decided that since laughter helps the immune system, I would choose to go through my months of treatment looking for the funny stuff. The first time I went to the oncologist, I passed the entrance that said, “PET SCAN,” and—I swear I am not making this up—I thought, “Oh, that must be where you take your pets to see if they have cancer.” My daughter and I went to get her hair cut last summer. We walked in, she with her shoulder-length blond hair and me with my bald head in a hot pink do-rag, and the receptionist looked up and said, “Who’s getting her hair cut today?” I finished chemo in July, and my hair started growing back about a month later. I went by my daughter’s kindergarten class in the fall. While chatting with some of her classmates, I told them I used to have long hair like their teacher. They looked at me disbelievingly. I lifted up my ball cap to show my quarter-inch-long hair. “It’s growing back, though, see?” I said. One little boy looked at me consideringly, and said, “You look better with the hat.” My husband and I went shopping in October. By that time, my hair was long enough to look like I was one of those fabulous ladies who choose to cut her hair in an extremely short crew cut. One old guy walked by, looked at me and said, “I’d kill my wife if she did that.” His friend replied, “What? Get breast cancer?” I bought a t-shirt from CafePress.com that says “Bald Chicks Rock” and a hat that says, “Coiffure by Chemo.” For Halloween, my costume consisted of jeans and a t-shirt that said, “Sinead O’Connor” in black Sharpie. To help you keep your spirits up during your treatment, I compiled a Top Ten List of Cool Things I Enjoyed During Treatment: 10. No more plucking! Besides the hair on your head, those pesky chin hairs and stray eyebrow hairs go away as well. 9. Lose weight without going on a diet. If you take your anti-emetics, you will probably not throw up after chemo, but you may not feel like eating much. 8. Save money. No more spending money on shampoo, conditioner, perms, hair coloring or, ahem, Brazilian waxes. 7. Save on the water bill. You will take the shortest showers of your life. You will have very little to shampoo, condition or shave. 6. Shorter showers save the environment. 5. Smooth legs with no hassle. 4. If it gets hot, you can take your hair off. 3. Free food. Your friends and neighbors will more than likely start providing you with food once you start treatment. My family ate the best meals of their lives during my treatment. 2. Free makeup. The American Cancer Society has this free seminar called Look Good, Feel Better, where they show you how to tie scarves and do your makeup. You get a bag of free makeup and a free wig or scarf! 1. Guilt-free laziness. For the first time since you were a teenager, you can lay around all day and watch TV and nobody will say , anything. So, get a funny t-shirt like the one that says “Does This Shirt Make My Head Look Bald?”, have a head shaving party and rent some funny movies for when you don’t feel well. And remember, Bald Chicks Rock. Want to share your story in our next issue? Write to us at email@example.com or call Janine at (610) 645-4567.