Publications
Insight, Spring 2005
The spring 2005 Insight contains medical updates on aromatase inhibitors, lapatinib and a gene-profiling test; an article on reclaiming your sexuality; and a profile of a young women who decided to take part in a clinical trial.
Table of Contents
- Oncotype DX Predicts Chemotherapy Response
- ASCO Adjusts Recommendation
- New ATAC Trial Data Reported
- Trials Show Superiority of Anastrozole over Tamoxifen
- Tissue Bank Established for Advanced Breast Cancer
- Taxol Available
- Lapatinib Shows Promise
- Karen Marker: Artist, Organizer Makes Her Mark as Clinical Trial 'Queen'
- Reclaiming Your Sexuality After Breast Cancer
Oncotype DX Predicts Chemotherapy Response
Several landmark studies were presented at the 27th Annual San Antonio Breast Cancer Symposium, held in Texas in December 2004. SABCS is the largest conference in the world for physicians and scientists involved in breast cancer research.
The National Surgical Adjuvant Breast and Bowel Project (NSABP) B-20 study reported that the Oncotype DX 21-gene panel test successfully predicts the likelihood of recurrence for women with early-stage, estrogen receptor-positive, node-negative breast cancer.
The study, which will be published later this year, involved 651 participants and showed that those identified as having a high risk of recurrence are most likely to benefit from the addition of chemotherapy to tamoxifen.
These results were corroborated by the Northern California Kaiser Permanente Study, a community-based, epidemiologic study of 790 cases at 14 hospitals, that also showed a strong association between the Oncotype DX "Recurrence Score" and 10-year breast cancer mortality rates.
The test, which is conducted on preserved tumor tissue, is the only multi-gene assay currently available to physicians and is only applicable to women with early-stage, estrogen receptor-positive breast cancer. The cost of the test is $3,460, but Genomic Health, the manufacturer, is working with women and their insurance companies to cover the expense through a patient access program. For additional information, visit genomichealth.com.
ASCO Adjusts Recommendation
Several landmark studies were presented at the 27th Annual San Antonio Breast Cancer Symposium, held in Texas in December 2004. SABCS is the largest conference in the world for physicians and scientists involved in breast cancer research.
At the symposium, the American Society of Clinical Oncology (ASCO) Technology Assessment Panel announced a fundamental change to its internationally recognized guidance regarding the use of aromatase inhibitors (AIs) in the treatment of postmenopausal women with early-stage, hormone receptor-positive breast cancer.
ASCO is the world’s leading professional organization representing physicians who treat people with cancer. Technology assessments serve as guidelines for healthcare practitioners and outline appropriate methods of treatment and care.
For the first time, the panel now recommends that adjuvant therapy include an AI such as anastrozole (brand name: Arimidex), either as initial therapy or following treatment with tamoxifen, to reduce the risk of recurrence for postmenopausal women with early-stage, hormone receptor-positive breast cancer.
AIs are a hormonal therapy that decrease the amount of estrogen made in the body after menopause. They can slow or stop the growth of cancer that needs estrogen to grow. The endorsement for anastrozole is based on the compelling evidence provided by the ATAC (Arimidex, Tamoxifen, Alone or in Combination) trial.
AIs are changing the way we treat estrogen and progesterone positive, early-stage breast cancer, but one concern is the risk to bone health. A common side effect is bone loss. Your doctor should monitor your bone health using periodic DEXA scans, as treatments are widely available to preserve bone health and treat bone loss.
E. Winer et al., J Clin Oncol. Jan 20 2005; 23(3): 619-629.
New ATAC Trial Data Reported
Several landmark studies were presented at the 27th Annual San Antonio Breast Cancer Symposium, held in Texas in December 2004. SABCS is the largest conference in the world for physicians and scientists involved in breast cancer research.
New five-year data presented from the ATAC trial, the world’s largest early-stage breast cancer treatment trial, demonstrated that anastrozole reduced the risk of breast cancer recurrence by 17% over tamoxifen in hormone receptor-positive, postmenopausal women with early-stage breast cancer.
Anastrozole was shown to be more effective, whether given as a primary treatment for five years or when women were switched to it after two years of tamoxifen. Data are now available for 9,366 trial participants from 381 centers in 21 countries, at a median follow-up time of 68 months. Significant improvement was seen in disease-free survival, time of recurrence and occurrence of cancer in the other breast.
ATAC Trialists’ Group. Results of the ATAC trial after completion of 5 years’ adjuvant treatment for breast cancer. Lancet. 2004; Published online, December 8, 2004.
Trials Show Superiority of Anastrozole over Tamoxifen
Several landmark studies were presented at the 27th Annual San Antonio Breast Cancer Symposium, held in Texas in December 2004. SABCS is the largest conference in the world for physicians and scientists involved in breast cancer research.
Raimund Jakesz, MD, presented a combined analysis of the Austrian Breast and Colorectal Cancer Study Group (ABCSG) trial 8 and the Arimidex-Nolvadex (ARNO) trial 95.
The trials measured the advantage of switching to anastrozole after two years of adjuvant tamoxifen therapy, as opposed to continuing tamoxifen for the full five-year period, for postmenopausal women with hormone-sensitive, early-stage breast cancer.
In the study design, women who had already undergone two years of adjuvant tamoxifen therapy were randomized to receive either an additional three years of tamoxifen or three years of anastrozole. Of the 3,224 participants, 1,606 received tamoxifen and 1,618 received anastrozole.
The results showed that switching from tamoxifen to anastrozole after two years is superior to continuing tamoxifen for a full five years. At a median follow up of 28 months, the three-year, cancer-free survival rate favored switching to anastrozole at an advantage of 96% compared to 93%. Overall, women who took the AI instead of tamoxifen were less likely to have a recurrence, had a longer period of time before recurrence and were less likely to develop cancer in the other breast.
The findings are consistent with data from two previous trials—the Italian Arimidex (ITA) trial and the Intergroup Exemestane Study (IES)—and add to the accumulating evidence supporting the inclusion of an AI as part of adjuvant therapy for postmenopausal women with breast cancer.
You should speak with your healthcare provider to determine which treatment options make the most sense for you.
Jakesz R, et al. Program and Abstracts of the 27th Annual San Antonio Breast Cancer Symposium; Dec 8-11, 2004; San Antonio, Texas. Abstract 2.
Tissue Bank Established for Advanced Breast Cancer
With the University of Maryland Greenbaum Center, the University of Texas M.D. Anderson Cancer Center and Genzyme Biotechnologies, Johns Hopkins Kimmel Cancer Center is establishing a tissue-donation program that will populate a bank of metastatic breast cancer tissue available for gene analysis.
This tissue-donation program is the first of its kind to be developed in the world. It will allow researchers to study what molecular markers are connected to drug resistance and could lead to the development of targets to prevent metastasis.
A five-year, $10 million grant from the U.S. Department of Defense (DoD) will establish a Center of Excellence at Johns Hopkins, bringing together national breast cancer experts to pool their knowledge and resources. Women affected by breast cancer will participate in project development, oversight and disseminating information on program goals and research results.
Elyse S. Caplan, MA, education director at LBBC, serves as a consumer advocate for the Hopkins DoD Center of Excellence, and strongly encourages women to consider participating in this critically important program. Additional information is available at hopkinsmedicine.org.
Taxol Available
The states are distributing free doses of Taxol (chemical name: paclitaxel) to those who cannot otherwise afford the treatment.
They received 13,000 vials and have contracted with an administrator to accept applications from doctors on behalf of women who have been prescribed Taxol as part of their treatment and qualify financially for assistance. RxHope will take applications from doctors, hospitals and other cancer facilities online at rxhope.com or by calling 800.589.0834. Individuals cannot apply. If you feel you may qualify, please contact your doctor.
Lapatinib Shows Promise
The results are in from a phase I clinical trial of a new oral medication called lapatinib (GW572016). It is a promising new treatment that has not yet been approved in any country and is available only through clinical trials to people with advanced cancers.
Lapatinib is a biologic therapy that targets two protein receptors, Erb1 and Erb2, that are present on some tumor cells. Tumors that over-express these proteins tend to be more aggressive. Researchers hope lapatinib will block cell growth or cause cell death resulting from the presence of these receptors.
This phase I study was designed to examine the safety of lapatinib at a particular dosage level when used in combination with letrozole in postmenopausal woman with hormone receptor-positive, metastatic breast, ovarian, endometrial or other cancers. Thirty-six participants at a median age of 55 received two different dose levels of lapatinib in combination with letrozole over a series of 123 four-week treatment periods.
This small study concluded that lapatinib may be administered safely in combination with letrozole at the known effective single-agent doses for each medication. Further studies will help determine how people metabolize lapatinib and letrozole when they are administered alone and together.
To find out more about ongoing clinical trials of lapatinib in breast cancer,
visit 4BreastCancerTrials.com or call 800.563.7137.
Karen Marker: Artist, Organizer Makes Her Mark as Clinical Trial 'Queen'
As an information architect, Karen Marker helps people organize data so they can better understand it. So when Karen was diagnosed with Stage III breast cancer at age 33, she used her professional skills to help manage her treatment decisions.
Karen discovered a lump on her breast one morning as she got out of the shower. At the time she and her husband, Tony, lived in Boston with their 2-year-old daughter. Tony had recently lost his job, and Karen suspected she would be laid off soon. Karen knew the whole family could be uprooted if Tony found a job elsewhere in the country.
To stay organized, Karen kept a diary of her treatment options, appointments, bills and emotional ups-and-downs. This journal helped her tap into her creative spirit, always an important part of her life but one that had sometimes been neglected.
Because Karen had a large tumor, her initial healthcare team recommended a mastectomy. Tests showed the cancer was estrogen-receptor negative and had spread to her lymph nodes. Her tumor also tested positive for the HER-2neu gene. The HER-2 protein, when altered or over-expressed, causes increased cell growth, resulting in more aggressive breast cancer cells.
Networking was key to Karen’s method of information gathering. She started with family members in the medical field, which led her to LBBC’s executive director, Jean Sachs, MSS, MLSP. She then reached education director Elyse Caplan, MA, a 14-year breast cancer survivor. Elyse helped Karen find clinical trials for which she might be eligible.
"It’s hard for me to overstate how important LBBC’s help was," Karen says. "Who has a whole team behind them to figure out which kind of treatment to do? Elyse didn’t advise me one way or another, but she was helpful in helping me think through which approach would be beneficial. Then I went to the doctor’s appointment and found out all the details of the trial."
From LBBC, Karen learned about an open-label, neoadjuvant (pre-surgical) chemotherapy trial involving trastuzumab (brand name: Herceptin) and vinorelbine (brand name: Navelbine). Armed with this information, Karen went for a second opinion with Eric Winer, MD, director of the breast oncology center at the Dana-Farber Cancer Institute.
Dr. Winer discussed all Karen’s options, including the trial. He showed her a "trial description," a document that explains the different phases of the trial. Karen discussed the "nitty-gritty" details with an oncology fellow and then with a surgeon, radiation oncologist and other specialists.
"What I liked was that the doctor said, ‘You’re here about considering different treatment options. Here is one option, here’s another, and here is this trial.’" Karen says. "I had trust in them because they wanted to give me the best treatment for me. It wasn’t about getting another candidate on their research roster."
To receive this breakthrough treatment, Karen agreed to a staggering 16 months of therapy. After receiving trastuzumab and vinorelbine weekly for three months, she had a lumpectomy. To balance any uncertainties about the success of the trial, Karen then received the gold-standard treatment of doxorubicin (brand name: Adriamycin) and cyclophosphamide (brand name: Cytoxan) once every three weeks for three months, plus Taxol every two weeks for nearly three months. Chemotherapy was followed by nearly seven weeks of daily radiation treatments. The last step: Herceptin once every three weeks for six months.
Despite the grueling schedule required for the trial, Karen says participating "nourished me somehow to be able to make a contribution during such a difficult time." She dubbed herself the "trial queen" because she participated in about nine trials, including studies of her port, the clip inserted to keep track of the location of her tumor and even her blood.
"I liked knowing there was an upside," Karen says. "Not only was I getting a novel treatment, but I was simultaneously helping other people down the road with the same diagnosis."
Another upside was that the treatment allowed Karen to keep her breast. Entering the trial, Karen was prepared to accept a different outcome. As she wrote in her log, "I will enter my 36th year with all my body parts intact; when I first showed up at the hospital for treatment, a mastectomy of my right breast was all but certain." She feels fortunate.
That many months of treatment can take its toll. To manage the emotional side effects, Karen explored various artistic media, including painting, stained glass, drawing, writing and song.
"We were living in this big old house, and I’d go up to the third floor and I’d just sing and sing and sing and be as loud as I could," Karen says. "I was processing all that emotion. Later, I didn’t have to be as loud."
Karen also engaged in quieter pursuits—but not too quiet. When her husband found a job midway through her treatment, Karen and her family relocated to Pennsylvania. The move brought more upheaval: new doctors, new house, new neighbors. She responded by doing a color-pencil drawing at her treatments of one of her Carin terriers. "I’d be at the hospital with my pencils and my electric pencil sharpener. Everyone else was sitting quietly and I was roaring away."
With treatment complete, Karen is re-evaluating life. She is moving again, to Idaho, and now works as a freelance consultant so she can spend more time exploring her art. She advises women to ask their healthcare team about clinical trials before starting treatment.
"It’s not necessarily about going to the best hospitals or seeing the best doctors. But options change quickly, and you want to be working with someone who is part of ‘the conversation.’ Find a place where the doctors go to the big medical conferences and share information with each other about the clinical trials."
Reclaiming Your Sexuality After Breast Cancer
When confronted with a diagnosis of breast cancer, you probably did not have sex at the top of your agenda. But once you completed treatment—if not before—you were faced with "normal" life again. And things had changed.
"Women who have had breast cancer want a life that is meaningful, enjoyable and spontaneous again. These happen to be the main ingredients to reclaiming your sex life," says Marisa C. Weiss, MD, a radiation oncologist specializing in breast cancer.
Women of all ages and relationship status say they feel their sex life stops abruptly after a diagnosis, says Dr. Weiss, who is founder of Living Beyond Breast Cancer and founder and president of breastcancer.org. Single women often wonder whether they will ever have a sex life again.
"It takes a lot of resourcefulness, openness to new ideas, and throwing away your inhibitions to get your sex life back," says Dr. Weiss. "My advice: whatever way you have to jump start your life, just do it."
Communication Is Key
Your healthcare team may not discuss how various therapies can affect your sex life. They may not realize how important your sexuality is to you. If they do not initiate the conversation, you will have to begin it.
"Being able to talk about sex with your partner [also] is a crucial step in recovering a satisfying sex life after cancer treatment," says Leslie R. Schover, PhD, professor of behavioral science at the University of Texas M.D. Anderson Cancer Center and author of Sexuality and Fertility after Cancer. "Getting back to normal might mean talking more frankly about sex than you ever had in the past."
"Couples in our culture often don’t understand the value of sexual communication, nor do they feel competent," says Barbara Rabinowitz, PhD, MSW, RN, director of oncology services at Meridian Health System in New Jersey. "In a good physical relationship it’s important for partners to tell each other what they need and want sexually. It’s especially important after breast cancer."
To get the conversation started, Dr. Rabinowitz suggests reading a book together. One of her favorites is No Less a Woman: Femininity, Sexuality and Breast Cancer, by Deborah Hobler Kahane. Read each chapter and share your reactions. This exercise will help "improve intimate communication—and a bonus is your improved ability to communicate in a non-judgmental fashion in many other aspects of your life together."
Lisa Niedrowski, a mother of two young children, was diagnosed two years ago at age 29. She underwent a bilateral mastectomy, chemotherapy treatment, radiation therapy and reconstructive surgery. Afterward, she and her husband’s sex life "basically fell off the face of the earth," Lisa says.
"My husband and I had always communicated well, but now I was looking in the mirror and wishing the image I saw wasn’t me. I didn’t fully mourn my breast until all the treatment was completed. Then the full impact of what I had lost hit me."
Lisa sometimes felt guilty that she did not feel well enough to have sex. When her husband touched her breasts, it reminded her of her cancer.
"Since I’d lost sensation in my breasts from the surgeries and my breasts had been a big part of our foreplay, I felt yet another loss," Lisa says. "We had no idea how to satisfy each other and avoided the whole thing. Really candid conversations with my husband were the key to getting us back on track."
Below we share some common problems and solutions:
Decreased Sexual Desire
Treatments and medications to manage side effects can produce fatigue, pain, nausea and weakness. Those physical problems, added to the emotional stress of cancer itself, can produce a potent recipe for a low libido.
It usually takes about a year to get back to a "new normal," Dr. Weiss says. After surgery, women experience pain and numbness, physical disfigurement and, for those who have mastectomies, the loss of an erogenous zone. Women who undergo chemotherapy treatment may become profoundly tired, lose their hair and gain weight.
Younger women may experience more drastic effects because of early menopause resulting from chemotherapy, surgical removal of their ovaries or ovarian suppression. Most will experience a reversal of these effects if their periods return. But peri-menopausal women, and those who go into permanent or sudden menopause, will not.
"To stimulate desire, begin gradually," Dr. Schover says. "Find out what will put you in the right mood before sex, be it going out together to the movies, a romantic dinner or just cuddling. Deliberately schedule time to go out and do those things."
She also suggests laying out ground rules. "Start by agreeing there will be no intercourse. Decide in advance whether clothes will be on or off; whether the lights are out; whether areas of surgery will be touched. Make out like teenagers; exchange foot rubs. Do whatever makes you feel safe and comfortable."
Karen Teitelbaum, an LBBC board member diagnosed five years ago at age 47, says breast cancer had a profound impact on her sex life.
"You’re suddenly experiencing all the menopausal symptoms brought on by chemo. You don’t feel like having sex because you’re physically exhausted and emotionally overwhelmed with fear, loss and sadness. Sex is the last thing on your mind," Karen says. "But it's not good to stay in that condition. The longer you go without sex, the harder is to get started again. LBBC and breastcancer.org were instrumental in helping me realize that there were many other women who were dealing with the same thing I was. With the support of these two organizations, and of my friends and colleagues, I was able to gain a perspective again, and get myself back to a new sense of normal. That was so important in my recovery process."
Lisa says, "Breast cancer causes a metamorphosis of your body, your emotions, your relationships. I wanted our sex life back and I got it back. But like everything else, breast cancer changed our sex life, too. I had to overcome my shyness and guilt and move beyond the hesitancy to introduce sexual aids and toys into our intimate relationship."
Some strategies to help you get in the mood and enhance your desire include:
Explore and share your sexual fantasies
—Read erotic literature together or on your own
—Watch erotic films together or alone
—Visit stores and websites specializing in sex toys, aids and games and find those you’d like to incorporate into your sex life
—Buy sexy lingerie
—Give and receive massages
Work out at whatever level you can. Desire is stronger when you’re physically fit. Do whatever makes you feel attractive and sexy.
Painful Sex
Damage to your ovaries from chemotherapy or ovarian removal or suppression can bring on premature or sudden menopause and cause vaginal dryness and tightness that results in painful intercourse.
Dr. Weiss advises using a water-based gel lubricant like Astroglide or Slippery Stuff that does not contain oil, petroleum jelly or scent. Some websites give free samples and describe what they are good for and how to use them.
If lubricants don’t help, Dr. Schover recommends the product Replens. "It’s non-hormonal and meant to be used consistently three times a week before bedtime. It helps the vaginal lining retain moisture." If you have severe vaginal dryness, try Replens regularly and supplement it with a gel lubricant during lovemaking.
You and your doctor also can discuss localized estrogen therapy, which releases estrogen just to the vaginal area. One product, Estring, is a silicone ring you place at the top of your vagina like a diaphragm. Another is Vagifem, a suppository tablet that melts inside the vagina. Consult with your medical oncologist before beginning any new treatments.
Lubrication is important, but it also may help you to learn to control and relax the muscles surrounding the vaginal entrance using Kegel exercises. You also can experiment with different positions during intercourse.
Breast Sensitivity
Radiation therapy can cause your breast to become red and sore. With mastectomy and some lumpectomies, women lose the nerve that causes sensation in the nipple, making all feeling in the breast less erotic.
Reconstructive surgery helps some women feel more sexy and attractive. However, some women experience distracting thoughts about cancer or feel distressed because caressing of their breast no longer feels good.
"If both the breasts and the nipples were important to arousal, a couple needs to recreate the entire pathway of sexual arousal together," says Dr. Rabinowitz. "Fantasies may no longer be around the breast, and the clitoris becomes more important. A woman with breast reconstruction can’t experience sexual arousal there, but she might feel sexier because of both her own and her partner’s perceptions."
Whatever your experience, remember that sexual desire and pleasure varies from person to person. "I advise my patients to explore what sexuality and intimacy meant in their lives before breast cancer, then address their current reality," Dr. Rabinowitz says. "Don’t worry about what you read and hear. Take the time to think through your own personal reactions."
Body Image
The breast is an important symbol of sexuality for many people. After breast surgery, couples may feel the need to prove everything is the same as before. Unspoken fears and inhibitions can build and make it more difficult to resume a fulfilling sexual relationship.
After reconstructive surgery, Lisa feared her husband would look at her differently. She had no nipples, and she wanted to feel sexy again. Lisa’s husband decided to buy her sexy lingerie.
"I loved it because the lace and design hid my scars, and that made me feel more comfortable about being seen," Lisa says. "My body had changed so much, we needed to approach my breasts and sexual foreplay in a whole different way. My husband’s simple gift did a lot to help."
There is no one-size-fits-all solution for regaining or, in some cases, creating for the first time a positive body image.
"My advice is to keep the lines of communication with your partner open, honest and non-judgmental," Lisa says. "Don’t be afraid of trying new things and explore your sexuality together. The feeling of being touched on your breasts and remembering the cancer will pass with time."
Your Partner’s Feelings
People have varied reactions to their partner’s breast cancer. Some feel deprived. Others feel over-protective: they see themselves as caretakers and their partners as de-sexualized. Some even feel jealous of the attention lavished on their partner.
For some women, their partner’s sensitive reaction to their breast cancer enhances intimacy. For a very small number, breast cancer is the ‘straw that breaks the camel’s back.’ The bottom line, says Dr. Rabinowitz, is "if a woman has a strong partnership before cancer, she’ll likely have a strong one after cancer."
If you and your partner are struggling with your changed sexual relationship, you may want to speak with a healthcare professional or sex therapist.
"Find someone to talk to, do what it takes to find answers to your questions, and network with other survivors," Lisa says. "I’m having the best sex I ever had. Breast cancer forces you to proactively enhance your sex life."
