Breast Cancer Helpline 888.753.5222 Living Beyond Breast Cancer LBBC Homepage
LBBC Helpline
Living Beyond Breast Cancer - Nonprofit organization for woman

Publications

NewslettersBooksTranscriptsRecordings

Download PDF of entire issue

Insight, Fall 2007

This double issue of Insight features a 12-page report on the state breast cancer, plus a timeline of milestones and columns from more than 20 women and advocates reflecting on the impact of breast cancer on their lives. Other articles explore predictive and prognostic tests that could help you make treatment decisions, methods to better communicate with your loved ones and a profile of a woman who says LBBC's Cis B. Golder Grant helped to improve her quality of life.

Table of Contents

  Top of Page

Executive Director’s Letter

By Jean A. Sachs, MSS, MLSP

This fall, LBBC marks the conclusion of a year of programs honoring our 15th anniversary.

We approached this anniversary as both a reason for celebration and an opportunity for contemplation. In October 2006 we held our 15th anniversary gala. Celebrating 15 Years of Caring, our 2006 annual report, offers a timeline of our accomplishments and shows how we’ve grown from a small, grassroots organization to a $2 million-a-year national presence.

We’ve also explored where we’ve been, where we are and where we’re going. We collaborated with researcher Julie Becker, PhD, MPH, to assess the state of breast cancer. Dr. Becker interviewed 25 leading healthcare professionals and advocates, asking for comment on major research and treatment accomplishments and gaps in knowledge. She asked what lies ahead, and what challenges we face in improving survival rates and quality of life.

Through November LBBC will unveil Dr. Becker’s results in a 25-page report, in this double issue of Insight and at our first-ever State of Breast Cancer Town Hall Meeting on Saturday, November 17, in Philadelphia.

The report findings are fascinating: they show how far we’ve come in a just over a decade. However, the interviewees cited as grave challenges the structure of our healthcare system and gaps in insurance coverage. And despite all we have accomplished, they fear we could miss out on research breakthroughs because of lack of funding.

What can we do, and how can LBBC help? That’s where you come in. The goal of our Town Hall Meeting is to devise a five-point plan for future efforts. The plan will guide LBBC’s priorities and play a part in our strategic planning. We also will help you understand how to use the plan in your day-to-day life for yourself and for those who will face breast cancer down the road.

If you do not believe your contributions matter, read the report to see what your providers think. When asked for closing comments, Dr. Becker writes, several brought up the vital role of advocates in furthering research and medical practices. They believe our voices make a difference in what they do and how well they can do it.

At LBBC, we know advocacy takes different forms. That’s why this issue includes personal reflections from women across the country. And that’s why we’re providing several methods for you to share your thoughts on the state of breast cancer. I encourage you to attend our Town Hall Meeting, participate in a message board or write us a letter. We want to hear your voice—and ensure your voice is heard.

This project has personal importance for me. I began my career 14 years ago at the National Breast Cancer Coalition just a year after it was founded. I have seen first hand how a small group of determined people can increase federal funding for research, involve advocacy at all levels of the research process, build awareness and so much more. Today women with breast cancer have so many more treatment options and support resources. This is all because women like you stood up, told their story and made those in power pay attention.

I’m proud to have played a small part in this change and invite all of you to join LBBC in our efforts.

  Top of Page

New Tests Show Promise in Aiding Treatment Decisions

By Kristine Conner, for LBBC

Doctors traditionally have relied on certain characteristics of a breast cancer—such as tumor size, lymph node involvement, stage and grade—to predict the course and outcome of the disease (prognosis) and choose treatments. Over the past few years, they have added tests for hormone receptivity and the protein HER2/neu.

Now, several new tests are emerging that can help you and your doctors better judge whether the cancer is likely to recur or has traveled outside the breast (called prognostic tests), or to respond to a certain treatment (predictive tests). These tests are further individualizing decisions about how to approach your particular cancer.

Making Decisions about Chemotherapy

If you have early-stage, estrogen receptor-positive breast cancer not present in the lymph nodes, you may face difficult decisions about chemotherapy. Are anti-estrogen therapy and possibly radiation enough, or is chemotherapy warranted to reduce the risk of recurrence? Only a portion of these early-stage cancers is high-risk, but identifying which portion has proved challenging. As a result, many women undergo chemotherapy without needing it.

Recent research suggests that two new prognostic tests using molecular profiling technology—Oncotype DX and MammaPrint—can help better assess the risk of recurrence for this kind of cancer.

"Basically, they are seeking to do the same thing: assess risk based on a profile of genetic activity in the tumor," notes Julie Gralow, MD, a member of LBBC’s medical advisory board and a medical oncologist and breast cancer specialist with the Seattle Cancer Care Alliance.

Oncotype DX uses a tumor tissue sample to analyze patterns of activity in 21 genes, scoring the likelihood of recurrence within ten years on a scale of 0 to 100. A "Recurrence Score" of 17 or below is considered low-risk, which may give peace of mind to forego chemotherapy. A score of 31 or over indicates high risk and chemotherapy is recommended. Those in the intermediate risk group (18-30) must consult with doctors to weigh the advantages and disadvantages of chemotherapy.

Oncotype DX is also a predictive test in the sense that it indicates likely benefit from chemotherapy: low-risk women are less likely to benefit, high-risk women more likely.

"In the trials that validated the test, about 25 percent of women with low-risk tumors as classified by conventional factors—being lymph node negative and ER positive—actually had a 30 percent chance of a distant recurrence at ten years," says Dr. Gralow. "So I use it when I am trying to decide on just giving endocrine therapy versus chemotherapy. It really helps me feel confident in not giving the chemo, and in some cases it pushes me over to the other side."

MammaPrint, a prognostic test developed in the Netherlands, analyzes the activity of 70 genes in a sample of genetic material called RNA, extracted from tumor tissue. The test generates a genetic profile that classifies a five- and ten-year risk of recurrence as low, medium or high. Women in the United States are less likely to encounter this test than Oncotype DX.

"Oncotype is more practical because it can be done on the fixed tissue sample that has been prepared for the pathologist—either right away or even weeks later," says Dr. Gralow. "MammaPrint requires special processing of the tissue at the time of surgery. But we’re anxiously awaiting more information about the Europeans’ experience with using it."

Neither MammaPrint nor Oncotype DX is a perfect test—a low-risk result does not guarantee against recurrence, just as a high-risk one does not guarantee for it—but studies to date have validated their usefulness.

Each test costs about $3,000 and is not always covered by health insurance. Doctors often can work with insurance plans to increase the likelihood of coverage. The maker of the Oncotype DX test, Genomic Health, offers payment options if you do not have or cannot secure insurance coverage (call 866.662.6897).

For Diane Sandoval, 51, of Lake Tillery, North Carolina, a low score on the Oncotype DX test gave her the confidence to forego chemotherapy when she was diagnosed last year. A pilot, she feared that chemotherapy would jeopardize her ability to fly. She also wanted to avoid side effects.

"I am very thin, and besides that, I have long hair down past my knees that I didn’t want to lose," she says. "I was concerned about longer-term effects, too, like heart problems."

When her Oncotype DX Recurrence Score came back at 13, she breathed a huge sigh of relief.

"I felt I could just do the tamoxifen without always looking over my shoulder," Diane says. "If this had happened a few years ago, I would have had the chemotherapy."

Susan Bakken, 61, a Colorado art teacher, also had hoped to avoid chemotherapy—until she received her Oncotype DX results.

"Everything looked great for me—my lymph nodes were clean and I had the recommended radiation," she recalls. "But my Recurrence Score was 31, which just put me in the high-risk group. Right then there was no question in my mind that I would undergo chemotherapy."

Large clinical trials of Oncotype DX and MammaPrint are now underway. TAILORx (Trial Assigning Individualized Options for Treatment), a collaboration between Genomic Health and the National Cancer Institute, is enrolling over 10,000 women at 900 sites in the United States and Canada. The study is designed to find out if women with scores in the 11 to 25 range—low to intermediate risk—benefit from chemotherapy in addition to hormonal therapy.

"What we’re really looking for is whether there is more benefit or more harm from chemotherapy in this intermediate risk group," notes Dr. Gralow.

The researchers also hope to find out if a specific Recurrence Score can be used as a cutoff point to recommend for or against chemotherapy. Women recently diagnosed with hormone receptor-positive, HER2 negative breast cancer not present in the lymph nodes are eligible.

In Europe, the Belgium-based Breast International Group is running the MINDACT trial (Microarray for Node-Negative Disease May Avoid Chemotherapy), which will compare the value of MammaPrint to that of an existing Internet-based prognostic tool, ADJUVANT! Online, in selecting early-stage women for further treatment with chemotherapy. ADJUVANT! uses more traditional indicators such as tumor size, stage and grade to assess the level of recurrence risk. Results are expected in 2010.

Monitoring Metastatic Disease

If you are living with advanced breast cancer, you have multiple treatment options, but your doctors often have to wait months before knowing whether a selected treatment is working. CellSearch could change that.

The test uses a blood sample to count the number of circulating tumor cells (CTCs), which detach from some solid tumors and enter the bloodstream. If the cancer has CTCs, detecting the presence and number of these cells can help predict a treatment’s effectiveness while also providing information about prognosis, some studies suggest. For example, a blood sample that contains fewer than five CTCs may indicate a cancer that will be slower to progress; a blood sample with five or more CTCs may suggest a cancer more likely to progress quickly.

Based on CellSearch results, a doctor could potentially tell sooner whether a treatment is making a difference, instead of having to wait until symptoms appear during a physical exam or imaging test.

"The hope is that you would have this information well before you would normally do a CT scan or PET scan," Dr. Gralow says. "If the number of circulating cells goes down within a few weeks, this would be seen as an indication that the tumor would eventually respond. If not, then you might want to change therapy—but we don’t have the data yet that tells us whether changing sooner helps patients do better."

A new clinical trial sponsored by the National Cancer Institute is designed to answer this very question. The Southwest Oncology Group (SWOG) is now enrolling 500 women with advanced breast cancer in a trial that will evaluate whether those with elevated levels of CTCs after their first chemotherapy treatment can derive benefit from switching to a different chemotherapy regimen within just a couple of weeks, rather than waiting until the disease progresses.

Assessing Lymph Nodes

The GeneSearch Breast Lymph Node Assay is emerging as a new possibility for detecting disease in the lymph nodes at the time of initial surgery—key information for deciding on treatment. It measures the presence and concentration of genes that are highly correlated with breast cancer and normally should not be present in the lymph nodes.

The conventional method involves making a frozen section of the first node (or nodes) closest to the cancer to look for evidence of disease, and then ordering a complete pathology and getting final results in a few days. The hope is that GeneSearch could return more definitive results within 45 minutes, helping some women avoid the need to come back for more surgery.

The U.S. Food and Drug Administration has approved the GeneSearch Assay based on clinical trials showing that the test accurately predicted cancer in the lymph nodes 88 percent of the time, and not in the lymph nodes 94 percent of the time. Another study involving 1,000 women is planned.

"I personally haven’t yet seen that it really offers tremendous benefit on top of what we are now doing, since you still need to do the final pathology and make decisions based on that," says Dr. Gralow. "But it is certainly intriguing and the research is worth following."

What This Means for You

Whether you have just been diagnosed or you already know you have early-stage or advanced disease, some of these tests may help you and your doctor make treatment decisions. Both TAILORx and CellSearch clinical trials are available at sites throughout the country, so you may be able to participate if you meet certain criteria. Talk to your doctor to see what is best for your situation.

  Top of Page

Communicating with Your Loved Ones about Breast Cancer

By Anna Shaffer, LBBC Staff

In July 2000, one week after her 46th birthday, Cindy Papale of Coral Gables, Florida, went in for a routine mammogram. Results were suspicious, so her doctor requested tests that confirmed her worst fears—she had breast cancer.

Cindy was overwhelmed. How would she tell her family and friends? She was anxious about telling her mother, who was recuperating from cervical cancer. Most of all, she worried about telling her husband of 12 years.

"Because every man reacts differently, I had no idea what to expect," she says. "I was unsure whether or not it would affect my marriage. It was very difficult for me to talk about it."

Talking about cancer with those close to you, especially your partner, immediate family members and close friends, can be one of the most challenging aspects of a breast cancer diagnosis. Communication—both talking and listening—is the basis of any intimate relationship, but you and your loved ones might not know how to talk about something this frightening. And what you may need may not match what they are able to give you.

"Many women are used to setting the emotional tone for their families and relationships and want to communicate in a way that doesn’t burden others," says Kate O’Connor, MSW, LSW, an oncology social worker at the Cancer Center of Paoli Hospital. "And talking openly about breast cancer can be scary."

Experts suggest several methods to help you, your partners, family and friends feel more comfortable talking about your experience.

Delivering the News

If you have just been diagnosed, you may feel many different emotions as you learn more and begin to consider treatment options. Talking about your diagnosis with the people who care about you can help you take in the reality of your situation and begin to problem-solve. But how do you decide whom to tell?

"It’s helpful to plan ahead and spend some time thinking about [this]," O’Connor says. "Some women want to tell everyone, and others are more selective."

Hester Hill Schnipper, LICSW, BCD, OSW-C, a member of LBBC’s medical advisory board and chief of oncology social work at Beth Israel Deaconess Medical Center, advises being open and honest with your closest loved ones soon after diagnosis. "Otherwise they will hear it from someone else. And those closest to you deserve to hear it directly from you," she says.

If you don’t feel comfortable, you may want to consider finding a support group or a counselor to help you.

You should also decide what you want to share. You might want to reveal the type of cancer you have, what treatments you will receive and what your prognosis is. Because talking about your diagnosis can be overwhelming, you may want to discuss the basics first.

"The people close to you deserve the truth so they can be loving, supportive and helpful, but most don’t need all the details. It’s perfectly okay to say, ‘I’d rather not get into that right now,’" Hill Schnipper says.

When Debra Strauss, 55, from Elkins Park, Pennsylvania, was diagnosed with advanced breast cancer 15 years ago, she initially relied on her husband to break the news. But after the shock wore off, she was forthcoming to anyone who asked.

"I knew I had to confront it," she says. "If you don’t tell people why you’re sad, they can’t help you. But I don’t know if there is a good or bad way of handling it. You are dealing with something horrendous, so you have to do what is right for you."

Talking During Treatment

As you begin treatment, one of the first questions a loved one may ask is, "What can I do to help?" Preparing a written list of needs enables you to be as specific as possible about the kind of help you’re looking for. Then, when people call or email, you can look at the list.

Setting up an informational message on your voicemail can help keep family and friends informed when you don’t feel up to answering the phone. You also can create a single email list for writing and sending updates. Because communicating with large numbers of people during treatment can be mentally and physically exhausting, seeking help from a trusted "point person" who can communicate for you may help ease the burden.

You can also get a free, personal, private website through online services such as Lotsa Helping Hands and CarePages to connect family and friends and share news, support and encouragement. You can ask for help with errands and give updates without having to talk for hours about what is going on. And when your loved ones ask how they can help, you or someone close to you can send them a link to your page.

Support When Treatment Ends

As you finish treatment and enter the recovery phase, family and friends may be impatient for you to "get over" your experience so things can return to "normal." But you may still be dealing with emotions put on hold during treatment, as well as a variety of physical side effects.

Although she finished treatment eight years ago, Fionda Williams, 31, of Towson, Maryland, still has lymphedema flare-ups that affect her day-to-day life.

"When I get irritated with [the lymphedema], I really want to be catered to—for example, I may need to rest, [or] not carry heavy stuff," she says. "But my family thinks that since I’m alive and finished with treatment, I’m okay. They feel frustrated because there is nothing they can do about it."

Hill Schnipper says the most important thing is to educate your loved ones, and to not let their expectations pressure you to ignore your feelings.

"You may have to say several times that it takes [time] to feel well, so you need to continue with a reduced schedule," she says. "You can always blame it on the doctor!"

Because you may not always get the support you need, preparing a backup plan that may include workshops, peer groups or religious support can be helpful. Try different things until you find what works for you.

"I journal and meditate," Fionda says. "I also have a best girlfriend who helps me out when I need it."

The Big Date

If you are single, dating may present some special challenges. When do you tell a potential partner about your breast cancer?

"I like to wait until the relationship is at a strong point, but because of the lymphedema, I can’t really cover it up. So I end up telling them about it when they ask what’s wrong," Fionda says.

Cindy, who is now single, brings it up immediately. As the author of a book about her breast cancer experience, The Empty Cup Runneth Over, and a lecturer in psychology at the University of Miami, it’s too much a part of her life not to.

"When you go out on your first date, usually you talk about your hobbies and the things you like to do. When I begin to talk about my book and my public speaking about breast cancer, it gives it away," she says.

Hill Schnipper says it’s up to you whether you want to let a dating partner know you had breast cancer on the first date. You should bring it up before you begin a sexual relationship; otherwise, you can wait until you are comfortable and feeling close to your partner.

"There are some guys who really don’t want to get involved with someone who had cancer," Cindy says. "But I truly feel that when two people meet and really like each other, it doesn’t matter whether someone had cancer or not."

Hill Schnipper agrees. "Usually, a person who is age-appropriate and worth having isn’t going to [care about] the fact that you have breast cancer," she says. "It’s a huge issue inside a woman’s head, but it’s usually less of an issue when it plays out in reality."

Talking about Ongoing Treatment

If you are living with advanced breast cancer, you may have unique challenges. Many people have a limited understanding of advanced disease and the concept of serial treatments. Since you may be dealing with permanent changes to your lifestyle, it may be harder to talk about it.

This is why, more than a woman with early-stage disease, you may need a few people who can help communicate your needs, Hill Schnipper says.

For Debra, those people were her parents. When she struggled, they were at her house all day, performing tasks that are normally part of her routine.

"My mother realized the most important thing was to see that the household wasn’t disrupted," Debra says. "Life was as normal is it could be, which was hugely important."

Because your needs may change as you deal with long-term treatments and side effects, O’Connor suggests scheduling a regular night out with friends or a periodic family talk to check in.

"In our normal life, so much is usually going on that we often don’t take the time to listen to each other," she says. "But when you’re dealing with a chronic disease, you can’t afford to communicate like that—you have to put energy into [it]."

It may also help if you have a good support group, oncology social worker or another place where you can talk with those who understand.

"Loved ones often can’t emotionally tolerate it," Hill Schnipper says. "Finding a support group can reduce your need to talk to your family and friends and make it easier for them to be loving and supportive."

Coping with Unwelcome Comments

At some point, those closest to you might not know what to say. They may say the wrong thing, or may say something misinformed or insensitive.

Cindy uses these comments to educate others about breast cancer and to invite them to one of her lectures.

"Speaking…truly inspired me to heal faster both emotionally and physically," she says. "I wanted to educate and empower women and men why self-exams are critical for early diagnosis."

Sometimes you may want to discuss things other than cancer. Because your loved ones might not know when you want to talk about cancer and when you don’t, Hill Schnipper suggests coming up with a few stock responses and interjecting them early in the conversation.

"The best approach is to gently change the subject," Hill Schnipper says. "It’s okay to be forthright and say you appreciate their concern, but you want to talk about something else. You have to be direct sometimes."

Your relationships help you get the support you need and maintain control over your life. It’s important to be open and honest about how you feel. It’s also important not to ignore a friend or relative who may need to open up and talk with you, or your own need to talk with someone.

"Illness is isolating," Debra says. "You don’t want to expand the isolation."

Hill Schnipper agrees. "It takes a lot of energy to hold secrets. When you communicate with those close to you about how you feel, both emotionally and physically, you are free to focus on your own needs. The people who you love can’t help out unless they know you need them."

  Top of Page

Golder Grant Helps Diane Connor Stay Strong

By Mary Alice Hartsock, LBBC Staff

Diane Connor, 40, of Sommerdale, New Jersey, was going 100 miles per hour when she was diagnosed with breast cancer last October.

Between supporting her husband, Magnus, and two children, Magnus Jr., 11, and Bria Ann, 3, a busy job as a research biologist and her volunteer work with Philadelphia children, Diane could feel that her immune system was depleted. She was not surprised when her doctor felt a lump in her breast during a routine gynecological exam. Diane had a mammogram and a biopsy, and soon found out that she had cancer.

"From the time my doctor found the lump, I mentally accepted the fact that I had cancer," she says. "I had been sick all the time and pushing myself because I had no choice, and my body needed a break."

Diane describes last October as a turning point in her life. She left her job, went on short-term disability and lessened her volunteer commitment to focus on getting better. At the end of the month, Diane had a mastectomy. She began her chemotherapy in December, and soon began to lose her hair and feel extremely nauseous and fatigued.

"I’m triple Type A, and not being able to move was hard," she explains. "I looked at my children, and I felt like I was fading away. I’m usually the rock of my family."

After chemotherapy, Diane quickly began radiation treatment. Even though she felt much better than she did during chemotherapy, she knew that she could not return to her busy working schedule and continue to devote time to treatment and recovery. Also, she was planning to have her ovaries removed after her treatment because she tested positive for the BRCA2 gene, which increases her risk of developing another breast or ovarian cancer. Removing her ovaries would substantially decrease her risk.

Diane knew that if she took time off work to go to doctor’s appointments, her job could be in jeopardy. Still, her short-term disability pay period expired before her application for long-term disability was approved.

Diane was unsure whether her husband’s business could bring in adequate money to support a family. Suddenly, she faced medical bills, a family to take care of and an empty bank account. She had used her savings and even borrowed money from her children for small expenses.

"I am the one in the family who brings in the money and the health insurance coverage," she says. "It was scary because I had no way of knowing how things were going to be taken care of."

Diane had been making enough money to pay her bills when receiving full pay, but with reduced pay she had accumulated overdue credit card bills. She knew she would have to make sacrifices on groceries and family needs to pay off these debts.

During this time, Diane attended Sister Will You Help Me, a support group at Cooper Hospital, in Willingboro, New Jersey. Former LBBC staff member Tai Parks, MPH, and volunteer Phyllis H. Allen, Esq., had been guest speakers at one of the group’s meetings. They used LBBC’s publication, Getting Connected: African-Americans Living Beyond Breast Cancer, to teach Diane and other attendees about living well beyond breast cancer. They also shared information about the Cis B. Golder Quality of Life Grant with Diane’s nurse, who was already familiar with Diane’s financial dilemma.

The program, administered by LBBC, provides small, one-time grants to women in the Philadelphia area with financial need to help them with quality-of-life and recovery expenses such as child care, wigs, prostheses and more. The family of Cis Golder, a dedicated volunteer for LBBC for more than a decade, established the grants in 2006 to honor Cis’ legacy. During her life, Cis had been diagnosed and treated for breast cancer three times, yet she remained positive and passionate about helping others.

Diane applied for the grant and was accepted. "I was just so grateful," she says. "I asked, ‘Someone is just going to give me something for nothing?’ To have something like this to help me—I felt blessed."

The timing of the grant could not have been better. It allowed Diane to satisfy the promises she had made to her creditors. Paying off her bills with grant money saved her the funds she needed to provide healthy food for her children.

Diane still is undergoing treatment, but her financial situation improved dramatically after she received the grant. She also has made some changes to her lifestyle that will sustain her through the time she goes back to work.

"If I could talk to the family that founded the grant, I would tell them ‘thank you,’" she says. "When creditors are calling you, just knowing that there is an organization looking out for people, and they know that breast cancer is about more than losing a breast, it makes such a difference."

LBBC offers Cis B. Golder Quality of Life grants for women with financial need who live in Pennsylvania’s Philadelphia, Bucks, Chester, Delaware or Montgomery counties; or in New Jersey’s Camden, Burlington and Gloucester counties. Over $100,000 has been distributed to more than 100 women. Get more information at lbbc.org, or call Kathleen at 610.645.4567.

  Top of Page

The State of Breast Cancer: 1992-2007

By Julie Becker, PhD, MPH

Over the last 15 years, many aspects of the breast cancer experience have changed. Almost daily, new information about breast cancer appears in the news media, from research and clinical care to advocacy and prevention. But are these changes perception or fact?

To address this question, Living Beyond Breast Cancer undertook an ambitious project to assess the state of breast cancer. As part of its 15th anniversary, the organization explored three key questions: What are the major changes in prevention and outcomes over the last 15 years? What challenges or gaps do people face in addressing outcomes? And, what should the future bring?

The experience of breast cancer often follows a similar pattern: screening and early detection, diagnosis, treatment and follow-up, with psychosocial components playing a part depending upon the type of treatment. But within this pattern, many differences exist, some distinct and others nuanced. Experiences can vary significantly depending upon the type of breast cancer, when a woman receives the diagnosis or where she lives. As part of this report, we will highlight some of these differences and why new information will be important.

How We Collected Information

LBBC has access to a "purposive sample," or a select group, of experts working on breast cancer issues. LBBC partnered with me, public health researcher Julie Becker, PhD, MPH, to interview 25 experts representing many specialties, including screening, diagnosis, treatment, support services and advocacy.

We taped and transcribed 24 of 25 phone interviews, with the permission of the participants. Of the 25 interviewees, 15 had medical degrees (MD), four had research degrees (PhD) and three had other heath degrees like nursing, social work or genetic counseling. Three were advocates who had experienced cancer and one of the health professionals had also had breast cancer.

To explore what these individuals said, we used thematic and content analysis, two techniques used in qualitative research. We reported back to the participants for validation. The interviewees were forthcoming and candid in our discussions. Therefore, to protect their anonymity, we chose not to attribute any of the quotes.

Biggest Changes in the Last 15 Years

We identified eight themes that answered the broad question about the biggest changes in the last 15 years affecting outcomes. A major "theme" was defined as when more than one-quarter of participants identified its relevance to breast cancer. Three of the eight themes reflect non-medical or non-healthcare related issues, suggesting that the participants viewed breast cancer and women affected by it in a broader context, especially how it can impact a woman’s life, health and ongoing survival. "Sub-themes" were based upon participants’ responses and were key points they raised but were not discussed by many. We categorized sub-themes under the larger thematic analysis.

Therapies

More than one-half of participants cited chemotherapy as the major change affecting breast cancer outcomes, meaning the types of medicine, their administration and dosage.

"What’s amazing to me about the story is that, for the most part, the treatments have gotten kinder and gentler, while being increasingly effective," one interviewee said.

This change also reflects a shift to using systemic intervention, or treating the whole body, instead of just focusing on local site control, or treating the cancer in a particular place.

Participants also identified individualized treatment with targeted/tailored therapy as key, including defining which treatments work most effectively for which breast cancers. Treatments are shifting from "one-size-fits-all" or "the higher the dose, the better" to a more tailored, nuanced approach, including assessing quality of life in determining therapy. Although targeted treatments are in their infancy, the participants suggested that the emphasis on improving quality of life will gain in importance, and targeted treatments will become the standard of care.

One participant said hormonal therapies have had the "biggest impact on overall mortality from breast cancer" because "they are better and less toxic." In particular, "Tamoxifen, and showing that tamoxifen works in [estrogen receptor]-positive (ER) patients, has to be one of the greatest achievements of modern oncology. Tamoxifen, for all its problems, is still one of the best drugs ever invented and used." Another said the development of hormonal therapies has made it possible for some women with both early-stage and advanced (metastatic) cancer to have years of good treatment.

Another major contribution mentioned were the aromatase inhibitors. Studies have shown aromatase inhibitors to be an incremental advance over or in addition to medicines like tamoxifen for ER positive cancers. But another participant pointed out that these "advances" do not come without side effects, such as fatigue and arthralgias, painful joints in the upper and lower extremities.

Trastuzumab (brand name: Herceptin) was viewed as a significant change for cancers with the HER2/neu (erbB2) receptor.

"Herceptin…reflect[s] sort of an integration of our basic science understanding," one person said. Interviewees viewed trastuzumab as a model for genetic receptors that could be used in the future development of therapies.

Increased Public Awareness

More than one-third of participants discussed an increase in awareness as "an attitudinal change…the coming out of the closet of the disease. It’s no longer a secret, hidden, shameful thing, but just a disease that like any other disease can be discussed openly."

Even 15 years ago, women did not talk about breast cancer; we just knew that women died of "some female disease, maybe even female cancer," one person recalled. Through better education and openness, women are now empowered with information and participate increasingly in decision making about treatment.

Increased advocacy has inspired this openness. Women with breast cancer are viewed as having not only a voice but also power. "…The voice, the very resonant and communal voice that has developed in the breast cancer survivorship community, is huge and has led to prioritization of breast cancer as a major research and funding item," especially on Capitol Hill, one person noted.

One-third of participants cited the importance of advocates in influencing research priorities and funding. As one person said, advocacy encouraged "…the funding for research and a general optimistic atmosphere that I think has driven everything else. And I would think that’s probably one of the most important things."

With increased awareness has come a proliferation of breast cancer groups involved in education, advocacy and access to care and support. One participant hinted that the days of large numbers of breast cancer groups are numbered due to market saturation and women’s changing needs.

Survival/Survivorship

Fifty percent of participants cited survival and survivorship as key results of improved outcomes. Because women are living longer after a diagnosis, our emphasis must shift from "cure, cure, cure" to worrying about the legacy these women face. For example, less toxic treatments should be considered if they can improve quality of life and be administered without compromising survival.

"We know that finishing treatment does not mean you’ve finished your cancer experience," one person said. "Much more attention now and awareness of the chronic nature of some of the problems [is being considered]: sexual dysfunction, fatigue, chemo brain, neuropathies, pain syndromes, economic impact."

Interviewees made a distinction between surviving breast cancer and "living after breast cancer."

"Surviving breast cancer is basically, medically you’re ‘cured.’ We did the lumpectomy, we did the mastectomy, whatever it is. You’ve gone through your chemo and radiation. Here you are. You’re better," one participant said. But "living is really going on with your day-to-day life, going and exercising and traveling and having time with family and feeling good about yourself and the way you look and the way you feel on a daily basis, having a relationship with your partner…"

Healthcare professionals and advocates mirrored these sentiments and pointed out the importance of this distinction, based upon personal experiences or with the women they care for.

Referred to as the "downstream effects of disease or the treatment itself," functional co-morbidities (more than one active disease) were mentioned by about one-fifth of the participants as a key issue. Some interviewees recommended establishing a study population of people who are five or ten years from diagnosis to monitor their increasing needs, identify other health impacts and reduce the risk of long-term side effects. Yet no one mentioned how specialists should work with primary care physicians to monitor and prevent co-morbidities.

Screening and Early Detection

Fifty percent of participants stated that screening and early detection have been vital in improving diagnosis and survival.

"You have to start with public awareness of mammography," one individual said. "You really have to say that women did a much better job of insisting on having a mammogram. I think the U.S. led most of the world in establishing age 40 as a smart place to start screening…That has proven to bear substantial and cumulative survival benefits."

Breast imaging has improved because of better techniques and equipment as well as doctors and advocates demanding higher quality. Additional techniques like ultrasound and MRI (for higher-risk individuals) are helping to improve efficacy.

Participants also mentioned patient navigation, which enables women to get appropriate care after screening has identified an abnormality. The use of community members as health resources within neighborhoods to ensure appropriate care has helped to reassure women about both availability of and access to care.

Breast Conservation

One-third of interviewees identified sentinel lymph node biopsy as a pivotal change in care. Since it requires less invasive surgery than axillary dissection to identify the presence of cancer in the lymphatic system, sentinel lymph node biopsy has improved the quality of life for newly diagnosed women.

"Not only has it significantly reduced the incidence and severity of lymphedema following breast cancer treatment, but it also emphasizes prioritization of survivorship concerns in primary breast cancer treatment," one person noted.

The controversy over mastectomy and lumpectomy continues. One participant observed that the acceptance of lumpectomy followed by radiation therapy over mastectomy has been as important to five-year survival rates as the rise of screening mammography. But another remarked on the resurgence of patients choosing mastectomy, "…who, in doing the homework and meeting with specialists, have elected, for a variety of reasons, to choose mastectomy. In a number of reports where people sort of teased this out, we learned that the number one driver for all of this was avoidance of recurrence…that becomes the driving force."

Reconstruction was viewed in the broader context of quality of life, with the emphasis on using the woman’s own tissues (fat and skin, without the muscle) when possible and better prosthetic devices.

One interviewee suggested we have gone as far as we can with breast conservation surgery, and any further conserving techniques might not be described as "surgery." No mention was made of the silicone breast implant moratorium or other implant controversies.

Improvements in partial breast radiation were noted, including modulating the intensity and uses of other imaging techniques to assist with the radiation. Again, participants focused upon improving this treatment to address quality-of-life issues and decrease unnecessary exposure to radiation, suggesting the importance of targeted therapies in aspects of local control while minimizing effects to the entire breast.

Quality-of-Life Issues

More than one-third of the participants felt that quality-of-life issues influence all aspects of breast cancer, from diagnosis and treatment to survivorship, and additional research is necessary if outcomes are to be improved.

An emerging area of interest was fertility. Fifteen years ago, few women were offered the opportunity to consider fertility options, in part because people assumed women who survived breast cancer should be thankful enough. Also, when women of child-bearing years had breast cancer, many of them were discouraged from having children because doctors feared the impact of hormonal changes or that the women would have a recurrence or die due to their more aggressive cancers.

Now women explore fertility options. But participants noted that these explorations should occur within the context of validated treatments, using the scientific method and institutional review boards to oversee ethical and moral issues.

Sexuality was acknowledged as a crucial area that receives little attention: "It’s really been too long neglected, and it gets little baby blips of attention here and there."

Another participant recommended that healthcare professionals get comfortable enough to begin talking about sexuality and believed that would happen on an individual basis. However, there was agreement that sexuality influenced quality-of-life issues and may influence mental health concerns.

Body image was identified as another aspect of quality of life. One interviewee noted, "Women often just don’t feel quite right and feel that they have been robbed of their youth, certainly of their confidence in their bodies and of just their overall sense of well-being… many women just don’t feel they ever regain their pre-cancer sense of well-being and sturdiness."

Several participants talked about lifestyle issues like diet and exercise. As one said, "…cancer is kind of the knock on the door. It’s a wake-up call to reevaluate your eating habits, your exercise, all of your lifestyle habits, because there is a good chance that some of these habits [in addition to others] placed you at risk in the first place."

Also discussed were the side effects and symptoms caused by treatments, like fatigue, lymphedema, and neuropathy. One participant said, "Now we’re getting arthralgias with the aromatase inhibitors, really painful joints, both the upper and the lower extremities, fatigue." Another said, "Some of the other drugs, Taxol, for instance, the terrible neuropathy that comes with that, the pain in the toes and the feet and sometimes in the fingers, [I am] taking care of patients with some of the...sometimes long-term complications and symptoms as a result of these treatments."

For lymphedema, the introduction of Complex or Complete Decongestive Therapy to the United States from Europe and Australia was most beneficial, one interviewee noted. Additionally, more research is assessing side effects like chemo-brain, challenging old beliefs about the consequences of treatments.

Unique issues facing younger women, women with metastatic disease and women with younger children were identified by one-quarter of participants. For example, because women with metastatic disease will not be cured, the focus of treatment switches to ensuring the best quality of life and ways to control disease spread. Women become partners in their care and may choose treatments that are less aggressive so that they experience fewer side effects while controlling symptoms in order to maintain or enhance quality of life.

Prevention

Several participants talked about chemoprevention trials, or studies using medicine to prevent cancer in a healthy person at high risk for developing the disease.

Two tamoxifen studies were cited as pivotal in developing chemoprevention trials, but interviewees said these trials had not been targeted enough for high-risk women. They suggested revising the research goals to include better identification of which women are at risk, so small studies specific to these women could garner results in a shorter period; better, more targeted compounds with fewer side effects; and better ways to measure the effectiveness of the compounds by using biomarkers (biologic indicators) or intermediate markers.

Another prevention strategy that was discussed was prophylactic oophorectomy. "…We can now identify a large number of women who are at risk genetically and maybe prevent them from developing ovarian cancer by doing risk-reducing oophorectomies after they’ve [received] genetic counseling and/or testing," one person said.

Genetics

Genetics was mentioned by more than one-half of participants. One-quarter talked about breast cancer as a family of diseases with multiple types. At least five different types have been identified to date, debunking the myth that breast cancer is a single disease.

"More and more therapies are being directed based on the biology of the tumor and the presence or absence of these drug targets as opposed to just non-specifically applying chemotherapeutics to everyone," one person said.

Genetic screening for BRCA1 and BRCA2, the two known hereditary gene mutations for breast cancer, was said to be crucial to assessing genetic risk. Interviewees said genetic testing was becoming more common, in part because doctors are recommending it and its value in identifying additional risk for other cancers like ovarian or uterine.

Biomarkers were cited as a way to develop additional tailored treatments, improving "the possibility of not treating women who don’t need systemic adjuvant treatment who have early disease."

A couple of participants identified genetic mapping and oncogenes as "remarkable advances." The future of treatments lies in understanding which genes contribute to what forms of breast cancer and finding ways to stimulate or turn off appropriate cell mechanisms. In addition, one participant said, "We actually are biologically altering cell structure as a way to treat and control the disease. That’s very innovative and certainly extremely new." An example is testing tumors for HER2, which encourages the use of trastuzumab as part of a treatment regimen that may lessen the risk of recurrence or even death.

Gaps in Treatment

We asked what challenges or gaps the community faces in addressing breast cancer issues. More than one-half of participants identified gaps related to socioeconomic status, race and geography. Participants spoke passionately about their concerns and ways to address these challenges.

Access to Care

Almost one-third of participants mentioned access to care as a challenge and gap in improving outcomes.

One participant fervently described the lack of access to care as "a disconnect between what we know and what we do" and noted the gross inequity between people who have insurance and "poor people and uninsured people, in particular, [who] have not received the benefit that the country has derived through its discovery system in the way that [they] should." We know what can be done to reduce mortality and increase survival, several said, but limited access to care often forces us to ignore this knowledge: "That to me is the biggest challenge."

Other participants said geography also plays a factor. Treatments and availability of specialists differ depending upon where people live, and not everyone is offered the most current or accepted standards of care.

Insurance

A few participants recognized the absence of insurance or limited coverage affected the type of care women receive, especially those at high risk for or with breast cancer who need screening to identify a recurrence.

One participant referred to this phenomenon as "two levels of coverage," one level for the insured and another for the 47 million uninsured and the 35 million underinsured. This participant estimated that over one-third of the U.S. population (100 million people) is underinsured, uninsured or poor. The magnitude of this situation presents a daunting challenge, the person said: "That’s not acceptable to me. It’s not civilized really."

A different participant cited HIPAA, the Health Insurance Portability and Accountability Act of 1996, and its importance for the insured in helping them get care, but noted HIPAA only helps those with continual coverage.

Treatment

Participants cited gaps in treatment in four areas: tailoring treatments to women who will most benefit from the therapy; treatment side effects; chemoprevention; and recognition of complementary and alternative medicine.

One interviewee said, "…we still treat everybody who comes in the door with a particular extent of breast cancer or stage of breast cancer…the same, and we use population-based, large, statistical [studies] that set the tone."

In chemoprevention, one interviewee observed that "drugs like tamoxifen, which cut at least estrogen receptor-positive breast cancer risk in half about…come with [their] own set of pretty serious side effects…I think that chemoprevention ought to be reserved for truly high-risk populations, unless we can come up with truly low-risk drugs. And so far we haven’t done a very good job of that."

Lastly, one participant talked about Chinese medicine and its use, describing it as something that cannot be seen but that works, especially with a skilled practitioner using both energy and synergistic aspects.

Training of Healthcare Professionals

A few participants mentioned the training of healthcare professionals as a significant challenge to improving outcomes. Specifically, they noted the need to develop more expertise in screening, diagnosis, treatment and psychosocial issues.

A lack of financial incentives hinders training: lower compensation, smaller insurance reimbursement or the ability to pay for therapies that are not yet considered "required" cancer treatment. Often not enough practitioners are sufficiently trained to practice at the subspecialty level.

One interviewee commented that some government programs involving regulation only look good on paper: "I can tell you when we have our annual inspection, for example, we are often evaluated by [someone] who carefully pours over our written records and looks at the equipment, but he does not look at the image quality…You can keep excellent records, but that doesn’t translate day-to-day [to] how you diagnose breast cancer and how you take care of patients."

Research

Two aspects of research were identified as significant challenges: using unproven treatments and encouraging participation of diverse groups in clinical trials.

The most notable example of an unproven treatment gaining legitimacy was bone marrow transplants for breast cancer. In the early 1990s, based upon limited and preliminary information, bone marrow transplants were conducted among women with breast cancer. Women received chemotherapy so powerful that it "wiped out" their bone marrow and immune system. The women were "rescued" by transfusing their own stem cells, which had been previously frozen.

This controversial treatment was a triumph of advocacy over science but at a harrowing cost: the procedure cost more than $200,000 but did not improve disease-free survival or outcomes. Insurance companies were forced to pay for a treatment that had not been vetted through the scientific process, using clinical trials. The bone marrow transplants proved disastrous for the women, scientists and advocates.

The other gap concerned recruitment of diverse women to participate in research activities. A few participants, specifically the clinical researchers, mentioned the importance of recruiting individuals from diverse populations.

The Tuskegee study, a 30-plus year clinical government study about the unethical, non-treatment of African-American males, still weighs heavily upon people of color, frustrating recruitment to any scientific research study, let alone breast cancer research. The legacy of Tuskegee makes it difficult for many people to trust in research studies in which participants cannot choose their therapy or may not receive a desired treatment.

Controversies

Several of our questions produced no clear consensus. We asked interviewees about psychosocial factors influencing disease and whether the environment (both physical and social) impacts outcomes. The most controversial issue concerned the possibility of a cure for breast cancer and how that question should be discussed.

Psychosocial Factors

Regarding psychosocial factors, almost two-thirds of respondents commented on the importance of exercise in influencing development of disease and as a potential prevention strategy.

More than 50 percent of the participants thought diet and weight management were very important. Exercise was linked to improved well-being and positive attitude, decreases in "adverse body composition changes, so not only osteoporosis but then also loss of lean body mass" and potentially recurrences, one said.

Of some well-controlled metabolic studies of pre-menopausal women who went into premature menopause because of adjuvant chemotherapy, one individual found: "...when we talk about weight gain in women with breast cancer, they’re one of the groups that is at higher risk of gaining weight during the time they get treatment…those women, if you track how their body composition changes in the year following diagnosis, it’s comparable to ten years of normal aging. So it’s just hugely accelerated. What we find is that if we can start to do some resistance training exercise in that critical period, we can hinder that loss of lean body mass, which is really exciting."

Although they had significant congruence of opinion about the potential importance of diet, weight management and exercise, several participants disagreed with this focus, claiming it was "blaming the victim," or saying that if women do not eat right or exercise enough, they are responsible for causing their breast cancer. A few felt that the emphasis on weight control and exercise was inflated and had only a minor impact on outcomes.

Other psychosocial factors said to influence outcomes included social support, education and the need for more education, quality-of-life issues, having a positive attitude, fatigue, sexuality, neuropathy and stress. One person mentioned the importance of having a sense of purpose, meaning or spirituality as an important psychosocial concern.

One-sixth of participants stated the need for additional research on the psychosocial issues and said studies should be more rigorous (using true experimental designs to establish cause and effect) and better designed.

The Environment

Whether environment influences outcomes proved controversial. One-third of participants either answered "no" or failed to respond to the question. When pressed, interviewees often felt environmental influences were out of their realm of expertise.

Four participants thought that the environment, both physical and social, might play a role. They mentioned chemicals, pesticides and hormone-treated animals; one suggested the environment may "trigger the [oncogenes] to kind of wake up." Additionally, social environmental factors were mentioned—like having enough support (through family or friends), economics and stress—as contributing to conditions that may influence a biologic response.

Five participants said the environment "sort of" has an influence. One participant felt that the physical environment may be an important factor, but the scientific evidence to prove cause and effect may never result in a definitive answer.

Curing Breast Cancer

Participants were asked whether they could predict a cure for breast cancer. Again, most felt uncomfortable with the question and many responded equivocally. Breast cancer is now viewed as a family of diseases, or as a multifactoral disease, speakers said, and some breast cancers may be cured while others will be treated as a chronic disease, especially metastatic cancer. Some said breast cancer has always been around and that it will never be eradicated.

Clinical researchers and scientists were the most enthusiastic about cures, while health practitioners were less positive and more circumspect. An example of the enthusiasm came across from one clinical researcher, who said, "We already cure most breast cancers. Most people with breast cancer get cured and never have any more problems related to their breasts or breast cancer…But in terms of larger disease and metastatic disease, there’s no doubt in my mind that we are going to cure cancer, breast cancer and all cancers."

The approach to breast cancer as a chronic disease was mentioned by almost one-quarter of participants, but it was not without controversy. Since many women will never have breast cancer again and might be considered cured, the disease should not qualify as chronic, some said. But metastatic disease may be viewed differently.

The Future of Breast Cancer

In our final question to our experts, we asked about the future. We identified seven broad themes with sub-themes. Four of the seven themes also appeared among the biggest changes, and participants perceived them as having the greatest potential for helping to improve outcomes.

More Research

The majority of participants agreed on the need for more research in a variety of areas, including screening and diagnosis, all forms of treatment, psychosocial and quality-of-life issues (fertility, sexuality, and lymphedema), survivorship and prevention. The needs identified reflected the specialties of the interviewees or the particular role the interviewees play in issues related to breast cancer.

Many talked about the need for more funding for research across the board and not just in their specialty. These interviewees felt "…cancer research is so grossly under funded in the world and in this country."

Those who talked about funding clearly, passionately and forcefully articulated the effect of decreased financial support on their own research or that of their colleagues. One person described a "convergence of multiple forces," creating a real concern that breast cancer funding is declining. People commented that long-term, experienced researchers are having terrible difficulty getting funded, and new investigators are finding it impossible. Many were sanguine about the lack of funding on spurring the next generation of scientists.

Several felt that breakthroughs are very close, yet the decrease in funds will hamper these efforts. Participants attributed the decrease in funding to the Iraq war and to the government’s different priorities for funding outside of research and healthcare.

Additionally, interviewees spelled out the role of patient advocates. As one person said, "Patient advocates really are helpful in supporting research…They organize, and they say, this research is important to us. That has made all of the difference." But a couple of participants warned that advocates must not get complacent and should mobilize to ensure increased funding for research.

Two interviewees mentioned the slow pace of research and the lengthy time required to move a discovery from the bench to the bed. To expedite the process of ethical review through an Institutional Review Board (a group of health providers, researchers and advocates that reviews research studies for ethical issues) across multiple research institutions, there must be better coordination and reciprocal arrangements among academic and governmental institutions.

Training young professionals in research also was considered important. Researchers are seeing difficulties in encouraging the next generation of young scientists because it takes them so long to complete training, and they have few opportunities to obtain funding. Interviewees acknowledged the instability of academia for young researchers, since many are let go if they cannot get research funding, primarily from national government grants.

New technologies were posited as gateways for new treatments or new forms of prosthetics. Participants talked about vaccines for breast cancer and nanotechnologies. Another suggested the use of stem cells to grow new breasts.

One participant mentioned the importance of pushing new paradigms in research. One example concerned a researcher "…who last year presented data on a breast cancer virus that [is] found in over 30 percent of cancers…There are a lot of cancers, the cervix being the most prominent, that are caused by a virus. And it wouldn’t surprise me at all if breast cancer were caused by a virus. But you’re not going to get that funded."

One participant suggested that funding must change to capture new paradigms, or truly revolutionary ideas about breast cancer will go unexplored or under-explored. An example might be a "biopsychosocial model," which would support, "What you do with the mind, what you do with your behavior affects the physiologic system." This type of model integrates the mind, body and social components to explore its influences on disease outcomes.

Genetics

More than 50 percent of interviewees cited the importance of identifying oncogenes (modified genes) and using gene therapy as exciting parts of the future. If we assume all cancers arise as a result of genetic alteration, some said, then finding the causes for that alteration to either revert the cancer to normal tissue or prevent it from growing would become an essential part of gene therapy.

Another interviewee discussed the importance of molecular sub-typing, allowing for "figuring out who has a good prognosis with our current treatments and who needs something different."

Interviewees also identified genetic risk and genetic screening as an exciting area. Both were considered part of tailoring treatment and defining prevention strategies.

"We know about BRCA1 and BRCA2. It’s believed that there’s probably a BRCA3, BRCA4, BRCA5 out there, and that probably will come to fruition in the next five years," one person said. But with increased screening and risk identification, it will place "a burden on women who are genetically positive to have to make some hard decisions as well as decisions on behalf of the next generation. How can we genetically halt that gene from continuing to do harm to the next generation? I want it to be that a woman can have a baby without having to worry, ‘Have I passed this disease on to my little girl?’"

Treatment

Almost half the participants mentioned the need for more tailored or targeted therapies based upon "…sensitivity of different tumors to different agents, whether it’s radiation, hormonal therapies, which hormonal therapies, which chemotherapeutic drugs."

Although doctors already use these therapies, the level of sophistication and precision will increase. Said one individual, "As we understand more and more within these individual subtypes of breast cancer about the molecular abnormalities that lead to the development and growth of cancer, we’re going to develop better treatments."

The other part of developing tailored therapies is "an individual’s vulnerability to developing significant long-term sequelae, i.e., lymphedema, neuropathy, post-mastectomy pain, persistent arthralgias after aromatase inhibitor exposure, some of these things that can be absolutely devastating to quality of life." Linked to sparing women needless side effects was decreasing over-treatment by using genetic risk and screening results, "the right dose, at the right time, in the right sequence." Again, this treatment would be based upon individual levels of care. "My spiel for individualized medicine is we will not have 100 or 1,000 different individual treatment paradigms. We’ll end up with six or seven or eight, and most people will fit into those seven or eight categories."

Another aspect mentioned was refining existing therapies such as surgical and radiological treatments, including less invasive surgical procedures with fewer side effects as well as minimization of radiation exposure.

The goal of treatments should be, as one participant stated, "…preemptive, personalized, predictive and, I’m hoping, partnered care. I think there is going to be that potential to really make treatment unique to the individual."

Survivorship

With more than 85 percent of women surviving breast cancer, interviewees talked about the importance of continuity of care. They spoke of establishing a survivorship center that specializes in minimizing side effects and co-morbidities for long-term breast cancer survivors.

"… now we really have to think about it as a chronic illness, that whole infrastructure for dealing most effectively with patients has to have some catch-up, if you will, and I think we’ll have some catch-up just because it’s been championed by some really good people and institutions," one participant remarked.

Several pointed out that research into survivorship issues is critically needed and funding to support ongoing programs and research should be identified.

Quality-of-Life Issues

The variety of specialties represented by the doctors, researchers, health professionals and advocates elicited tremendous responses regarding quality-of-life issues. More than two-thirds talked about quality of life at some level, in the context of infertility; sexuality; psychosocial concerns like parenting; lymphedema; side effects from surgery, radiation and chemotherapy; lifestyle choices like diet, weight management and exercise; or living with metastatic disease.

The interviewees identified the need for expanding research, using the "gold-standard" approach of randomized, controlled, prospective trials to assess what works and what could be used as a possible prevention model. But many acknowledged that these types of clinical trials take time, lots of money and lots of participants and may not be feasible in a traditional medical model, where the majority of research focuses on biologic and genetic issues.

Several participants talked about the significance of focusing on quality of life for women with metastatic disease. The interviewees anticipate more treatment with fewer side effects that will enhance their quality of life and extend that quality longer. The participants felt that improving quality of life for all people with breast cancer was crucial to future efforts.

Prevention

Defined as the "Holy Grail" by one participant, prevention will be a key component of the future. Yet interviewees did not clearly define the types of prevention and how well they should work. Prevention as part of cost-saving efforts will become increasingly important, especially if an opportunity exists to reduce long-term side effects associated with curing breast cancer and, therefore, costs associated with additional diseases.

Health behaviors and lifestyle choices will be a major focus. In addition, a couple of participants mentioned better chemoprevention trials with medicines that cause fewer side effects and are more targeted for high-risk women. The feelings toward prevention can be summed up by one participant, who said, "We’d much rather prevent cancer than treat it."

Health Systems

Several participants cited fixing or reinventing the healthcare system. One suggested that, "We throw out this healthcare system and start again."

Others echoed that sentiment. The litany of problems that need to be resolved include ensuring equitable care through universal health care, the economics of reimbursement for treatment and education, decreasing the influence of health insurance on treatments and relationships between healthcare providers and the women they treat and lastly, decreasing turf issues among healthcare professionals, advocates and patients.

However, the key challenge to the healthcare system was equity. To sum up, a participant suggested it is a "moral issue of scientific advance where people who can pay the price will get the advantage of the advance, whereas the lower quintile of the population is not advancing at all… It’s kind of a structural issue in healthcare, because the system is broken and it won’t allow the people at the lower part to ever catch up unless we do something dramatic."

Thank you, Advocates

We gave participants a chance to comment freely about anything else on their minds. Many talked about the role of women advocating for changes in research, treatment and education and how advocates have significantly changed the type of research and medical practices. Several commented on the historic nature of breast cancer advocacy, and how it has radically changed the course of cancer research.

These participants wanted publicly to acknowledge the role of organizations like LBBC in these efforts and to thank them for their hard work. As one participant stated, "We’re winning the battle because of women, because of the advocacy voices."

Thank you to Judith Berlin and Lori Baur and her staff.

Visit our home page to download the full report and methodology.

Join our message board community and let us know how you feel about the State of Breast Cancer Report.

  Top of Page

My View on the State of Breast Cancer

By Julie Becker, PhD, MPH

When asked to explore the state of breast cancer over the last 15 years, I jumped at the opportunity to interact with leaders in the fields of research, medicine and advocacy. The task seemed a marvelous way to discover in a scholarly manner the advances of breast cancer and to peek into the future.

But my interest wasn’t just scholarly. I am a breast cancer survivor, and a woman. I know firsthand how significant those three little words are: "You have cancer" changes your life and alters your perception of health forever.

Seventeen years ago, when I was barely in my 30s, I heard those life-altering words. Since the breast cancer was aggressive, I elected to participate in a six-year clinical trial. The majority of the women who participated did not survive. But for some reason, I did.

As I was writing my personal reflections, I was asked to provide additional views of one of my breasts because of suspicious results from a digital mammogram. The irony was not lost on me. Because of the potential for a recurrence, I was abruptly reminded that cancer is never really "over" and vigilance is required, both by us and by our healthcare providers. The fear never really goes away for those of us who have had this insidious disease. Breast cancer is only a phone call away from a healthcare provider who tells you what you so don’t want to hear.

I had the good fortune to conduct interviews with 25 amazing professionals and advocates working in breast cancer. Their level of candor with ideas and opinions surprised me. I was heartened by their willingness to answer questions directly, with little self-censorship. Their honesty was incredibly refreshing and exciting. For me, it also was reassuring, since too often we hear so much about cynicism in healthcare. This group spoke openly about issues they obviously believed in.

Another aspect that amazed me was how often issues affecting quality of life marked the participants’ responses. While interviewees reflected a wide range of disciplines, they consistently expressed their opinions about the importance of quality of life in improving treatments, early detection and survival. The myth of the data-driven researcher or the doctor impassioned by science and not by people was debunked as time and again, participants shared anecdotes about what it meant to them to help women overcome various trials such as struggling with body image or sexuality throughout their breast cancer experience.

Another surprise was how similar the modalities are to the ones 17 years ago, when I was treated. We use better drugs or surgery, but in reality, we have few radically new methods for diagnosis or treatment, and there was little discussion of prevention, other than for high-risk women.

At times I was distressed by what was said. Some participants talked about the potential for heart disease for those who had been radiated on the left side of the body. Since that is exactly what happened to me, it just made it seem more real.

I learned quickly to fall back on my role as researcher to gain perspective. Creating distance between what participants said and what might be happening to me was helpful and necessary. Often I identified with the topics the interviewees discussed, so instead of a nameless, faceless person, I could, at times, see myself. And to be honest, that was sometimes very uncomfortable.

As I heard the healthcare professionals and researchers describe new techniques, treatments or milestones, I couldn’t help but be moved. As a woman who has had breast cancer, many of the issues touched upon me directly. I am now dealing with a number of side effects as a result of my treatments, as well as aging. I had to bifurcate myself in order to listen actively to the interviewees, and yet I needed a little downtime to process the implications of what their words meant to me.

I felt, on one hand, very lucky to have gotten through the treatments. On the other hand, we have learned that the high-dose chemotherapy I received is not necessarily the best course of treatment. I felt validated by the new awareness of "chemo brain," and I’m grateful it is being studied and wasn’t just all in my addled head at the age of 32 when I underwent treatment. While many experts talked about the potential for a cure, I also realized that breast cancer is a family of diseases that may never really be cured, especially for those of us who had more significant involvement. I also felt very hopeful that there are many possibilities to explore, including potential prevention strategies and improving survivorship and aging among women with breast cancer.

Breast cancer has changed how I hear time, with a sense of urgency that I previously did not recognize. I feel I live on borrowed time, and therefore I try to make the most of what I do. The state of breast cancer project allowed me to take a step back and get a vista I rarely allow myself: a chance to revel in the past, assess the present and marvel at the future. The project provided me an opportunity to combine different roles, that of a researcher, a long-term breast cancer survivor and a woman concerned about helping her friends and family prevent this disease as well as other cancers.

I appreciated working on this project as a way to say thank you to the breast cancer community. I give thanks to the staff of LBBC, especially Janine Guglielmino, Amy Grillo and Jean Sachs, and with special thanks to the incredible Elyse Caplan, for their assistance and for asking me to do this wonderful project. It has been both an honor and privilege to interview 25 of the most caring, top-notch professionals and advocates working in breast cancer. This project has been one of the highlights of my cancer experience, both as a professional researcher and, most importantly, as a long-term survivor.

Oh, about those additional views on the digital mammogram. To my relief, it turned out to be nothing significant, just advancements in technology and overall aging. I can live with both those things!

Photo by Don Tracy.

Join our message board community and let us know how you feel about the State of Breast Cancer Report.

  Top of Page

Publications in Journals for Breast Cancer Research: 1992-2007

By Julie Becker, PhD, MPH, and Abbie Santana

Goals

The goal of this project was to explore publications by topic area over the last 15 years. We examined several databases to compare similarities and differences between these sources and then to consider access to the resources about breast cancer research.

Methods

We reviewed four databases (two public access, Google Scholar and PubMed, and two limited access, Scopus and Ovid) for publications related to breast cancer and specific topics. Living Beyond Breast Cancer staff and experts from each specialty who participated in the interviews chose the topics.

Since the number of articles changes on almost a daily basis, we did our searches within a 48-hour period. After careful consideration, we chose to focus on PubMed and Scopus. Google Scholar counts the number of web pages, not peer-reviewed journal articles. Ovid allows the user to aggregate multiple databases in a search, producing higher numbers of articles than the other databases.

The PubMed search was emphasized because it is widely available to the public and contains peer-reviewed journal articles. PubMed is a service of the U.S. National Library of Medicine that contains more than 17 million citations from MEDLINE (a medical publication database) and other life science journals for biomedical articles dating back to the 1950s. It includes some links to full text articles and other related resources. We used the term "breast cancer" and [specialty topic] for each search, with an English-only language requirement. Virtually no difference was seen in PubMed when the search terms for specialty topics were enclosed with quotes or without quotes. Two of the databases contain information on citations but with different algorithms (Scopus and Google Scholar). We used Scopus to identify frequently cited peer-reviewed articles.

Results

The graph shows the number of peer-reviewed journal articles from PubMed by specialty, based upon the themes identified through the interviews over the last 15 years. Overall, the number of articles published is increasing, with the possible exception of 2007 (which we projected based on seven months of available data). Advocacy has the fewest number of articles published at a peer-reviewed level, probably because it is not studied from a scholarly perspective in medical or basic science disciplines. Breast conservation, quality-of-life issues, and prevention also had relatively few peer-reviewed journal articles. Interviewees mentioned quality-of-life issues and prevention as needing additional funding for research to increase publications in this area. Genetics had the majority of the publications, and the number of articles about survivorship is increasing each year. The themes of screening and early detection and treatment contain the next largest number of publications.

Limitations

The list of topics was not comprehensive in any way but mirrored the interests of LBBC staff and experts. We purposively sampled selected databases, and this was not an exhaustive list of databases that contain peer-reviewed journal articles. We chose English-only publications, and that limited the scope of our searches.

Conclusions

As a general rule, publications follow research, which results from funding. Topics that may potentially address a "cause" of breast cancer or can affect therapies (early detection or treatment) appear to have received the most funding and, therefore, have the most publications. Areas that are considered "hard science" such as genetics, therapies, and screening/early detection have more publications in the medical and basic science literature than the "softer sciences" that address quality-of-life, psychosocial issues like advocacy or prevention as well as survivorship. While more research needs to be done in psychosocial areas, funding to support these activities must occur prior to releasing more publications. Also, research with humans often requires much longer time to observe effects than with laboratory subjects. This lag time impacts the number of studies that can be done and when the results get published. However, if researchers do not start asking questions now about prevention, quality of life, or advocacy, patients will never experience the results.

©2007 Living Beyond Breast Cancer. This image and accompanying text may not be reproduced without permission of LBBC or the author except for academic purposes, and should be cited appropriately.

Join our message board community and let us know how you feel about this graph and the State of Breast Cancer Report.

  Top of Page

Reflections: Susan Leigh, RN, on Long-Term Cancer Survivorship

Cancer Survivorship Consultant

Founding Member, National Coalition for Cancer Survivorship

I begin this column with a confession. I’m not crazy about pink. You won’t find me wearing pink hats, pink ribbons, or pink T-shirts. I won’t buy a pink vacuum cleaner, food mixer or any other household product. I do buy breast cancer stamps, though.

Yes, I have had breast cancer (1990-91), but I am not a pedigree breast cancer survivor. My original trauma associated with a cancer diagnosis started with Hodgkin’s disease (lymphoma) way back in 1972 at the ripe old age of 24. It was that experience that propelled me into the realm of advocacy after attending the founding meeting of the National Coalition for Cancer Survivorship in 1986, and I have been a generalist (as opposed to disease-specific) cancer advocate since then.

At the initial NCCS gathering, we created the term "survivorship" to encompass the many textures and multiple dimensions of life after a cancer diagnosis. The quality of our lives—no matter what the outcome!—was important to us, and we eagerly embraced the seasons or stages of survival as introduced by Dr. Fitzhugh Mullen. We also replaced the term "cancer victim" with "cancer survivor" in order to reflect empowerment and choice. To us, surviving meant living beyond expectations.

We have come a long way since that meeting in Albuquerque. Now, many of us aspire to not only survive but also to thrive after cancer. It took 20 years of hard work from all corners of the advocacy arena to finally get survivorship the attention it deserves. There is definitely strength in numbers and power in perseverance.

By the way, I did not stop at Hodgkin’s disease and breast cancer. I was also treated for early-stage bladder cancer. Many of us are now living long enough to develop other cancers or health-related problems from treatments. So we can’t let our guard down. And more and more of us will need multi-colored ribbons and pins and t-shirts to reflect the realities of life beyond cancer.

Do you have a personal reflection you would like to share? Join our message board community and let us know how you feel about the State of Breast Cancer.

  Top of Page

Reflections: Karen Eubanks Jackson on Gaps in Knowledge and Socioeconomic Issues

CEO/Founder, Sisters Network Inc.

As a 14-year breast cancer survivor and the founder of the only national African-American breast cancer survivorship organization, I’m keenly aware of the advances in breast cancer screening, treatment and research.

Overall there has been progress in the last 15 years. However, breast cancer has a disproportionately severe impact on African-American women and the economically disadvantaged.

An important breast cancer basal-like tumor study, recently published, shows that 50 percent of African-American women diagnosed with breast cancer will have this fatal tumor. A study published over a decade ago in the Journal of the National Cancer Institute (Vol. 86. No.9. May 4, 1994) confirms that this information has been available for years but very little progress has been made in saving lives.

The gaps in access, awareness, healthcare services and racial inequity remain prevalent. Women are still denied treatment and testing, are told not to worry, "your lump is nothing, you are too young for breast cancer." Given that our tumors are more aggressive and harder to treat or cure, my experiences make me conclude that society has failed the African-American woman, devaluing the importance of her health and survival.

A change in the paradigm and any new strategies incorporated must involve the African-American perspective at all levels. A new urgency must prevail. While I believe it’s important to acknowledge the problems, it is more critical to seek solutions to ensure the lives of all women who are diagnosed with breast cancer are treated fairly, despite race and socio-economic status.

Do you have a personal reflection you would like to share? Join our message board community and let us know how you feel about the State of Breast Cancer.

  Top of Page

Reflections: Karen Marker on Moving on After Treatment Ends

Information Architect

Most of the time, I blend with the crowd. Even though my breast cancer could recur, I feel that heart disease from my high cholesterol—or being hit by a bus—could just as likely demonstrate that death will eventually meet me.

Fortunately, when diagnosed with breast cancer nearly five years ago when I was 35, I lived in the United States in 2002. As I came to learn, breast cancer detection and treatment here is so effective that we have one of the lowest mortality rates in the world from the disease, even among developed nations. So when I found my tumor before doctors would have recommended a baseline mammogram, I was still lucky to live where I could get an appointment the very next day.

My HMO medical insurance offered good financial support for top-notch hospitals and services. Broad options included everything from nationally known oncologists to a counselor who visited me right at my chemo chair. Since I had an unusually aggressive HER2-positive breast cancer, I opted for a clinical trial. Doctors took no chances and fired all rockets: the standard treatment plus a new, targeted therapy. Fortunately, both have proved themselves extremely effective against recurrence, so I feel well fortified.

The first few months after treatment were bumpy—until my systems reset, my nose was always running, and I got depressed and tired around my period. But the upside of being treated young is that the body bounces back well. Treatment presented risks, but my heart responded favorably to the more toxic chemicals, and positive research results assuage concerns about my long-term health.

I recently shifted from seeing my oncologist every three months to twice a year for a physical and blood test. I get screening mammograms annually and an MRI every few years. Fortunately, I need not take any ongoing medication. Thanks to a research summary on digital mammography at the Living Beyond Breast Cancer website, I requested and now use the digital mammograms that have shown themselves valuable tools for my profile. Knowing that others are reading and keeping up with the latest medical updates helps me monitor my health with vigilance, but without my getting overly neurotic by laboring over and trying to distinguish the relative value of primary sources myself.

Except when I speak with recently diagnosed breast cancer patients, respond quickly to any odd bumps or see the doctor, I don’t think about breast cancer. I am busy striving to be the person I want to be and delighting in the time I spend with my husband and daughter. The cancer could come back, but now I feel like everyone else, with the same risks and a likely long lifeline.

Photo by Susan Beard Photography.

Do you have a personal reflection you would like to share? Join our message board community and let us know how you feel about the State of Breast Cancer.

  Top of Page

Reflections: Susan Papada on Surviving Versus Living after Breast Cancer

Not Cured but Thriving

If the initial diagnosis of breast cancer is a wake-up call, metastasis is a bomb in one’s lap.

Diagnosed in November 1994 at age 46 with primary breast cancer and again two short years later with metastasis to my spine, I feared I would likely not be a long-term survivor.

During the week my metastasis was found, I had a serious car accident. My choice of a new car was based on what I thought my daughters would enjoy driving, since I likely would not be using it for long. Two years later I realized I was still driving a car I didn’t want. I recently purchased my third car since then!

Although I have always been an optimist, metastasis challenges optimism mightily. Still, I did what I could do. I committed to living beyond breast cancer, not merely surviving it. I shied away from statistics and odds, and I reminded myself that long term survival was possible. I began a qi gong practice to nurture and enhance my flow of qi, and I continued to work, because my job gave me personal gratification and a sense of normalcy. I retired when it was right for me, not allowing my illness to thrust it upon me. I turned to LBBC for information and support, and I was given both, plus a gratifying opportunity to use my experiences to help others.

For the past six years I have actively participated on a breast cancer survivors’ dragon boat team that has physically challenged me, provided me with the thrill of athletic competition and given me an extraordinary built-in support group. It allows the child in me to come out and play!

My story is unique because it is mine, but living with metastatic cancer is not nearly as unique as it once was. Physicians caring for cancer patients today often refer to the situation as "chronic" rather than "incurable"—a simple word substitution, but with profound repercussions.

I may never be deemed "cured" by the medical community, but that doesn’t mean that I cannot possibly live—uncured—for many more years. How helpful it would be if the community at large could view cancer survival through that lens.

Do you have a personal reflection you would like to share? Join our message board community and let us know how you feel about the State of Breast Cancer.

  Top of Page

Reflections: Robert G. Somers, MD, on the Shift to Local Control

Breast Surgeon, Albert Einstein Medical Center

There is no question that lumpectomy has made a major impact in changing surgical management of breast cancer. It was in June 1980 that I first offered a young woman, a personal friend who had just been diagnosed with breast cancer, the option of saving her breast. We agreed that it was somewhat of a gamble, and she was willing to take the risk. Today, she is happy that she made the choice and remains free of recurrence.

When I began my surgical practice in 1966, the standard treatment for breast cancer was the radical mastectomy. The surgical deformity was "the price you paid to stay alive." This was the rationalization. The emotional trauma was not discussed, or it was considered acceptable.

Breast conservation therapy, or lumpectomy, has opened up new doors formerly closed to discussion or consideration. Rather than merely cure rates or survival rates, quality of life, appearance and emotional well-being, sexuality and the sense of feeling whole for a woman must be and now can be featured in measuring the success of our treatments.

Several things have changed, all of which have contributed to the way I now try to help patients. As a result of the NSABP study B-06, we now realize that breast conservation, in the proper setting, is no longer a gamble and provides equal cure rates to mastectomy. Women are not afraid to talk about breast cancer, knowing that deforming surgery is not necessary. They are more inclined to have screening mammograms and regular examinations.

Women are much more involved in making decisions concerning their health and body image. The emphasis on body image also has generated the use of skin-sparing mastectomy with reconstruction at the time of surgery. This involvement gives the woman the power to make choices based on knowledge. They have a better sense of control.

All of this requires much more honest communication between the breast surgeon and the patient. Informed patients seek out surgeons and other physicians who are willing to talk to them, provide information and compassion, and to support a woman’s choice.

This has all been an evolution, which I have been fortunate to experience. I consider my patients to be my partners and my friends. I have been graced to live in this era and believe that no one can feel more gratification than I do in seeing a healthy, secure woman return for her annual follow-up visits free of cancer.

Do you have a personal reflection you would like to share? Join our message board community and let us know how you feel about the State of Breast Cancer.

  Top of Page

Reflections: Elyse S. Caplan, MA, on Living with a History of Breast Cancer at a Young Age

Education Director, Living Beyond Breast Cancer

16-year breast cancer survivor

My experience with breast cancer started in May 1991, when at age 33 I felt a lump in my breast while taking a shower. Eventually, I was diagnosed with Stage 2b multifocal, infiltrating ductal breast carcinoma with three positive axillary lymph nodes. My treatment included a modified radical mastectomy and immediate reconstruction, followed by four cycles of AC chemotherapy. Eight months following my diagnosis, I had a prophylactic simple mastectomy on the opposite breast to reduce my risk of developing a second breast cancer.

But in truth, my experience with breast cancer started much earlier in life because my mother had been diagnosed in 1963. I mention this because survivorship was not a term in 1963, nor was it a recognized term in 1991. Survivorship was not on the radar screen the way it is today. Attention was not paid to health concerns that may impact a woman’s life five, ten, 20 years down the road. The goal of treatment was to do whatever necessary to get rid of the cancer.

What life would be like after I completed cancer treatment was not on my mind. I worried that the body-altering surgery and chemotherapy might not be enough of an "insurance policy" to ensure the disease would be gone forever. I wanted to get through treatment as smoothly as possible so my husband’s and children’s lives would not be disrupted any more than they already had been. My goal was to be healthy and present at each child’s milestone events—kindergarten, Bar Mitzvahs, graduations and, yes, even weddings and grandchildren.

"Quality of life" was a new buzz term at the time. I was told after my treatment ended that I should have a "good quality of life." I was confused. I had received a potentially life-threatening diagnosis right after my 34th birthday, had three sons ages two, five and eight, was bald from chemotherapy, disfigured from surgery and worried the treatment would not be enough to keep me alive to watch my children grow up.

No one explained what a "good quality of life" meant or—even better—what I could do to ensure it.

Knowing that my cancer was aggressive and that breast cancer, in my opinion, is predictably unpredictable, I will always be concerned that my disease could recur. But today my biggest health concerns are my bones and heart, the impact of menopause and my risk for other chronic diseases, like diabetes.

When I was diagnosed, I was unaware that I could be at risk for early onset osteoporosis. I had a baseline DEXA scan six years after my treatment and learned that my bones were not in the typical shape for most 40-year-old, premenopausal women. Clearly, treatment has impacted my long-term health.

At age 46, I had some middle-age gynecologic problems. My doctor recommended I have my uterus removed, but because of my health history I decided to have my ovaries removed too, putting me into surgically induced menopause. I probably would not have made this decision had breast cancer not been part of my life.

Researchers still need to learn how breast cancer impacts long-term health. We need to better understand its effects on premenopausal women who could live for decades. We need information about our ongoing health needs, methods to prevent other health problems and, of course, our psychosocial concerns.

This year, I attended my oldest son’s college graduation. It was overwhelming to be there—surreal. Next year, I expect to share similar joy at my middle son’s college graduation and my youngest son’s high school graduation.

Setting meaningful goals has helped me move forward. Accomplishing them is incredible because they felt so far away when I imagined them.

I am happy to boast that this summer I turned 50. I am dealing with osteopenia, uneven blood sugar and cholesterol and menopause—just like every other woman who is fortunate to live years beyond a diagnosis of breast cancer. But it is good to grow old, even though it means giving special attention and thoughtful management to the health issues associated with the aging process.

Photo by Lori Petersen.

Do you have a personal reflection you would like to share? Join our message board community and let us know how you feel about the State of Breast Cancer.

  Top of Page

Reflections: Joyce Johnson on the Power of Mammograms

Volunteer, Living Beyond Breast Cancer

My personal experience with breast cancer began in 1994 at age 44. While performing my monthly self-exam, I detected a lump in my breast.

I immediately contacted my gynecologist. A mammogram was performed, but it did not detect the lump. However, my gynecologist referred me to a breast surgeon for further evaluation. A lumpectomy was performed, and I was diagnosed with stage 2 infiltrating ductal cancer. My treatment consisted of radiation and chemotherapy. It was during that time that I received a flyer about an LBBC conference. I attended and immediately connected with the goals of the organization. I became a volunteer and have continued my involvement ever since.

I was disappointed that the mammogram did not detect the lump. However, the doctor explained that one-third of breast cancers are found by mammography, one-third by self-exam and one-third by clinical breast exam. I was advised to continue to be diligent in my approach to my health.

This year during my annual mammogram, 13 years from my original breast cancer diagnosis, a questionable mass was detected in my other breast. The radiologist suggested that I have an ultrasound and see my surgeon. My surgeon performed a biopsy that confirmed that I had a new cancer. This cancer was stage 1 infiltrating ductal.

The amazing thing to me was that I did not detect this new cancer through self-exam. Had I not had my mammogram, I would not have detected this cancer at an early stage. I realized then that mammography is still the best technology available for early detection of breast cancer.

Today there is increased awareness about the importance of mammograms, but I think many women are still afraid of what they will find. They subscribe to the old adage, "what you don’t know can’t hurt you." However, the more informed you are about your health, the better positioned you are for a healthy life.

One of the most powerful things that can be done to encourage women to have mammograms is for women like me to share our stories. We need to stress the role mammograms play in our survival.

Do you have a personal reflection you would like to share? Join our message board community and let us know how you feel about the State of Breast Cancer.

  Top of Page

Reflections: Selma R. Schimmel on Public Awareness of Young Women with Breast Cancer

Founder and CEO, Vital Options International

Host, The Group Room cancer talk radio show

It was 1982 when I was 27 and found a lump in the lower inner quadrant of my left breast.

My mother had just recently died of ovarian cancer and I always thought there was some connection, but this was long before we discovered the BRCA mutation. I had to work very hard to get a diagnosis, to even be taken seriously as a young adult who could have breast cancer. My mammogram looked just fine, as they often do in younger dense breasts, and I was quickly dismissed and told by one radiologist—who apathetically stared at my films against the light box and said, "Go home and forget about it"—that I was being "neurotic."

Maybe that helped to light the fire in me, because I knew something was very wrong and unless I became my own advocate, I might not live to tell my story. It took four more months before I could find a surgeon who reluctantly agreed to biopsy me. At 28, I was finally diagnosed with breast cancer with two lymph nodes involved.

I was among the early generation of women treated with lumpectomy and radiation, and I received adjuvant CMF chemotherapy two years before it was the standard of care. One of the great highlights of my work was to meet and spend time with the renowned physician behind that research, Professor Gianni Bonadonna.

I have now lived a quarter of my life as a breast cancer survivor and am in awe of the advances that represent the coming era of personalized medicine. I have also learned there is a difference between being healed and being cured.

Do you have a personal reflection you would like to share? Join our message board community and let us know how you feel about the State of Breast Cancer.

  Top of Page

Reflections: Susan Chialastri on What Changes—and Stays the Same—After Treatment Ends

Associate Professor, Temple University School of Dentistry

March 26, 1999, was the date of my mastectomy. That date triggered a rush of events that included weekly doctor appointments for blood tests, chemotherapy, check ups and follow ups. It was a whirlwind of activity at Abington Hospital, not fashionable like a whirlwind trip to Paris, but a constant focus on cancer and getting better.

I was surrounded by family and dear friends who rallied behind me, pushed me forward, encouraged me by saying sweet things like "you look terrific" (even if I knew they

were lying to make me feel better). The only truthful person was my then four-year-old nephew, Eric, who came very close to me, stared at my head and boldly said, "Aunt Susan…that wig is disgusting!" and ran off giggling.

I did not need a support group. I was on a mission to get through the treatments while trying to maintain a new periodontal dental practice. We had moved into a new office space on January 20, and I was told I had breast cancer February 26, after a routine yearly mammogram. I worried about paying the bills for my new equipment loans, keeping my staff busy, convincing patients and referring doctors that I was okay so that I could maintain my practice. After finding the perfect pictures for the office and the lovely waiting room chairs, I couldn’t give up on it.

The truth is that focusing on work kept me from feeling sorry for myself. I didn’t have time. My secretary, Joyce, and my dental hygienist, Michele, were awesome. They helped me keep things going smoothly so that we managed financially. I was on autopilot and got through it.

I went without my wig for the first time on Christmas Eve. My new look was well received by family and friends. Life was good.

That was until the post-holiday season and the long dreary days of winter set in. I found myself very depressed. It’s difficult to talk to friends who say, "Thank God, you’re alive." I was very grateful to be alive, but my life was different because of the experiences. I didn’t look like my old self and I was so tired…I ran out of gas!

I suppose I was at my lowest when I received a flyer for Living Beyond Breast Cancer’s fall conference. I attended that first meeting and became very active. I liked helping the other women recently diagnosed. I liked raising money for LBBC.

There was a purpose for my cancer…and my survival.

But after a time I didn’t like to be around the women going through chemo. It made me think that cancer could come back, as I heard so many tell their tales of recurrence. I withdrew from the "cancer clan" and decided that I could return to my old life.

Complaining to my wise oncologist Dr. Pickens about how I had promised myself that I wouldn’t work so hard after I got cancer and how I slowly found myself back in my crazy work schedule and obsessive-compulsive behavior, he responded, "Cancer doesn’t change your personality type. You will always be a Type A personality, Susan, cancer or not."

He’s right.

I would advise women to continue working but to take it easy. Take a day off when you’re tired. I should have given myself and my body a break. Take time to fully recover. I felt I had to prove that I could have chemotherapy and be a perfect patient and see a full load of patients at my practice.

Doctors should be more realistic when telling patients about the post-operative effects of mastectomy and lymph node dissection, especially concerning lymphedema and neuralgias. Those effects can be far-reaching, long-term concerns. Newer, less invasive techniques have helped