Category Archives: Breast Cancer

Young Women With Breast Cancer Are Increasingly Being Tested For BRCA Mutations

percent_cancer_riskUS News & World Report (2/11, Esposito) reports that research published online in JAMA Oncology indicates “testing for BRCA1 and BRCA2 gene mutations, which significantly increase a woman’s risk of getting breast cancer and ovarian cancer, is on the rise among women ages 40 and under who’ve been diagnosed with breast cancer.”

HealthDay (2/11, Norton) reports that investigators “found that of nearly 900 women who developed breast cancer at age 40 or younger, most had undergone BRCA testing within a year of their diagnosis.” The data indicated that “the percentage went up over time: By 2013, 95 percent had been tested.”

The Cancer Network (2/11, Levitan) reports that the researchers “noted that the high frequency of testing in this cohort likely reflects the fact that most women were insured, educated and treated at major cancer centers.”

Put Advocates in Charge of the Breast Cancer Research Agenda

Courtesy of Fran Visco, President, National Breast Cancer Coalition – reposted from Huffington Post:

Across the country, people run, walk, dine out, buy “stuff” and write checks to support breast cancer research. All of this is great. But what exactly is “breast cancer research?” Where does the money go? Who decides which questions are asked? How do we measure success? All of these are incredibly important questions. If we really want to end breast cancer and save lives, it will take more than just raising and spending more money on research. We need a thoughtful, strategic approach to making certain that money is well spent. We need to know that the end result benefits women and men at risk of and with breast cancer, rather than just supporting institutions, individual scientists and drug companies.

At the National Breast Cancer Coalition (NBCC), we know that advocates trained in the science of breast cancer, women and men who are outside the system of science and research, should lead the way. That might sound strange–lay advocates setting a scientific research agenda? We have proven it works. Educated advocates like the ones at NBCC are the only ones with no agenda other than to end breast cancer. Not get published, or promoted or make a profit. Just save lives.

Try to look up how many institutions around the country are working on breast cancer research. Or how many thousands of scientists are doing that work. You can’t do it. Nor can we easily find out what they are doing in breast cancer. There is little transparency in breast cancer research, beyond piecing together federal funding and what information you can find on private grants and associations. The federal government appropriated more than $800 million last year for breast cancer research. It is estimated that private philanthropy exceeds hundreds of millions of dollars each year. There is no coordination of all of this. Now, I am not suggesting there should be coordination of science. Having all researchers work in lockstep would send us down one road and it may be the wrong one. There would be no room for innovation or really “wild ass” ideas. We need diversity of approaches, replication of findings, innovation and even some incrementalism. But we don’t need so much of it. We do need some segment of all of this working to answer questions that are important to people. And we must have transparency and accountability.

The current world of science rewards publication and grant funding begets more grant funding. So the propensity of researchers is to do what will get published and what will get funded–not necessarily what will save lives because, unfortunately, these are not always the same thing. An individual scientist, or her team, at one institution most often is not collaborating with teams at other institutions, who may have a different way of approaching the same problem. Now, scientists will tell you of course they collaborate. Maybe we define it differently. We define collaboration as an open exchange of ideas; sharing of tools, technology and knowledge; learning from one other and moving forward as partners to answer a big question. We haven’t seen much of that. How much of that research funding we have walked and raced to raise is spent on that type of collaboration?

Do we know what questions are being asked? Do we know if those questions are important? We can know. I recently read a posting from a breast cancer survivor who claimed that a patient cannot understand science and any attempt to read about it was akin to hearing “zebras clumping by all the time.” I immediately thought about the iconic Barbie doll that, when you pulled the string, you heard, “Math class is tough.”Back in 1992, people rightfully pointed out how offensive this was and demeaning to women. We can do math. We can understand scientific articles; we can help decide what is important. It is offensive to suggest otherwise.

One of NBCC’s signature projects is to train advocates at Project LEAD® Institutes and Workshops in the science of breast cancer and on research methodology. They learn basic terminology, foundational concepts, and a way to think critically about science and gain the confidence to ask hard questions. LEAD graduates have gone on to analyze and influence the science itself. Working together with scientists, advocates have influenced how researchers view the significance of their scientific questions, how research designs might impact participants and why results need to be important endpoints and not just extend life for a week or two.

In 1992, NBCC successfully advocated for unprecedented federal funding for breast cancer research: hundreds of millions of dollars for the newly-created U.S. Department of Defense Peer Reviewed Breast Cancer Research Program. As part of this new program, I worked with scientists and program leaders to facilitate trained advocates having a seat at the peer review and programmatic tables. Many Project LEAD® graduates have since sat at those tables to review scientific research proposals and to set the research agenda.

As part of NBCC’s Breast Cancer Deadline 2020®, we launched the Artemis Project®, which is our research work on primary prevention, or stopping women and men from getting breast cancer in the first place, and prevention of metastasis, or preventing women and men from dying of it. We are making progress on these two fronts in large part because they are advocate-led.

Math class may be tough for many men and women. That does not mean it creates a barrier. Science can be accessible to all of us–it’s not just for scientists–and it certainly can sound clearer than zebras clumping. Advocates can understand the science of breast cancer and help determine what research questions should be answered. We’ve made progress in getting more trained advocates to the research table. Now we need to put more advocates–who answer to no one, no institution and no industry but to their desire to end this disease–in charge of setting the breast cancer research agenda.

Follow Fran Visco on Twitter @Deadline2020

 

Cancer Remains Costly Even After The Disease Has Been Treated

HealthDay (1/13, Dotinga) reports that research published in the Journal of the National Cancer Institute suggests that cancer “remains costly even after the disease has been treated.” Investigators found, for instance, that “non-elderly survivors of colon cancer had extra expenses of about $20,000 annually.” The “extra expenses included direct medical costs, as well as lost productivity.” Meanwhile, for breast cancer survivors “under 65, the economic burden totaled about $14,000, and for prostate cancer it was approximately $9,000.”

Long Distances To Treatment Centers May Be An Obstacle For Some Women Seeking Breast Reconstruction Following A Mastectomy

breast_cancer06142HealthDay (1/7, Dallas) reports that research indicates “long distances to treatment centers are a significant obstacle for some women seeking breast reconstruction after a mastectomy.” The study authors wrote, “While greater patient awareness and insurance coverage have contributed to greater breast reconstruction rates in the United States, geographic barriers to access this service remain, particularly to academic centers.” The research was published in Plastic and Reconstructive Surgery (abstract below).

Background: Inadequate access to breast reconstruction was a motivating factor underlying passage of the Women’s Health and Cancer Rights Act. It remains unclear whether all patients interested in breast reconstruction undergo this procedure. The aim of this study was to determine whether geographic disparities are present that limit the rate and method of postmastectomy reconstruction.

Methods: Travel distance in miles between the patient’s residence and the hospital reporting the case was used as a quantitative measure of geographic disparities. The American College of Surgeons National Cancer Database was queried for mastectomy with or without reconstruction performed from 1998 to 2011. Reconstructive procedures were categorized as implant or autologous techniques. Standard statistical tests including linear regression were performed.

Results: Patients who underwent breast reconstruction had to travel farther than those who had mastectomy alone (p < 0.01). A linear correlation was demonstrated between travel distance and reconstruction rates (p < 0.01). The mean distances traveled by patients who underwent reconstruction at community, comprehensive community, or academic programs were 10.3, 19.9, and 26.2 miles, respectively (p < 0.01). Reconstruction rates were significantly greater at academic programs. Patients traveled farther to undergo autologous compared with prosthetic reconstruction.

Conclusions: Although greater patient awareness and insurance coverage have contributed to increased breast reconstruction rates in the United States, the presence of geographic barriers suggests an unmet need. Academic programs have the greatest reconstruction rates, but are located farther from patients’ residences. Increasing the number of plastics surgeons, especially in community centers, would be one method of addressing this inequality.

Cancer, Divorce & The Holidays

BadLast year, I had finally gathered enough strength and courage to file for divorce. A decision that was extremely difficult to make after the devastation our family had faced with two cancer diagnoses within 3 years of each other. I often wondered why the woman my husband made such a poor decision to have an affair with did not question his actions, or would question hurting his wife after cancer, or the impact this affair would have on the children. I also had the fear of finding love again after having had cancer, dating, and living my life on a ticking time clock between scans.

The real truth was, it was not about me, or the kids, or this woman. It was about “him.” A selfish decision he made without remorse, guilt, or shame. Today, he still has taken no accountability for his poor decisions or actions. It has been almost a year and a half since I filed for divorce, and the pain, the anger, and the hurt never goes away completely. My psychologist described all the emotions of divorce relating to a “tossed salad”. You have all these ingredients that are tied to each emotion, and they come to surface during different times and triggers. He was absolutely right with this analogy. And, it helped me understand how I was teetering between each one, and not in any specific order.

Cancer causes you to loose control. It teaches you that there is no certainty, and that fear can debilitate you if you allow it to happen.

Divorce, has the same emotions, combined with the other stages of grief, such as denial, anger, bargaining, guilt, depression, and finally acceptance.

The common stages of all of these emotions is that you can overcome them. The grief surely can be overwhelming, and at times it can make you question your strength and ability to rise above the adversity.

This year, I am choosing to embrace every moment that God has given me to celebrate MY life, I chose so hard to fight for. Not once, but twice. Not to mention, my two greatest blessings, my children.

You can take a diagnosis like cancer, or a devastation like divorce and allow it define you – OR – you can let it inspire, empower, and strengthen you to overcome the worst moments of your life. When I have moments of sadness or anger, I like to take a moment to reflect on the many blessings around me, and focus on what I am most grateful for. You see, I have lost a lot of friends to this horrific disease, and I choose to remember them, and honor their memory each and every day with the work that I do. The lives that were lost are always way too soon.

Should I spend my life, allowing cancer, or divorce to define me?

Not this holiday season.

Kimberly Jewett Consulting, Inc. Hires Veteran Advocate

Beth Fairchild Brings Years of Experience to Patient Advocacy

SAN ANTONIO, TX – December 8, 2015 – Kimberly Jewett Consulting, Inc., a leader in patient advocacy for life sciences markets, is pleased to announce the addition of Virginia “Beth” Fairchild to their team during the 2015 San Antonio Breast Cancer Symposium.

Beth, a seasoned professional, will hit the ground running as she brings several years worth of hands-on client and management expertise, backed by her personal experience as a metastatic breast cancer survivor and passionate patient advocate. Her qualifications include a successful track record in healthcare marketing and sales, and her extensive experience in specifically, metastatic breast cancer with a comprehensive understanding of this sophisticated arena.

As an associate, Beth will be contributing to the growth of the organization by concentrating on enrichment of client satisfaction. In her new role, Beth will act as a conduit to clients when she designs and implements new strategies, and as a liaison to new opportunity development – translating client needs into viable product enhancements and solutions.

When asked about her new role with KJC, Beth replied, “I joined Kimberly Jewett, Inc. because I wanted to be part of a team actively involved in driving patient needs and public understanding of this disease. One hundred and twenty-three women and men will die today from METAstatic Breast Cancer, and one day I will be one of those 123. I look forward to working Kim and moving forward with the pharmaceutical industry to build pharma/patient relationships and to create support and advocacy programming.”

CEO and Founder, Kimberly Jewett adds, “We are excited, honored, and grateful to have Beth join our team, supporting the needs of our clients. Our passion, combined with our purpose and professional skillset, will truly impact the lives of cancer patients and their families, and we are both blessed to have the opportunity to be that voice. While honoring the patients who are fighting, surviving, and thriving every day of their fight, and remembering the ones who lost their lives way too soon. Together, WE CAN make a difference in the lives of cancer patients and their families. People just like US.”

Report Says PSA Tests Reduced Metastatic Prostate Cancer Rate, But Mammography Did Not Lead To Lower Rates Of Metastatic Breast Cancer

According to the AP (10/29), “A new report” published in the New England Journal of Medicine “raises fresh questions about the value of mammograms.” Researchers found that “the rate of cancers that have already spread far beyond the breast when they are discovered has stayed stable for decades, suggesting that screening and early detection are not preventing the most dangerous forms of the disease.” The report, however, showed a different trend for prostate cancer, as “the rate of advanced cases of that disease has been cut in half since screening with PSA blood tests came into wide use around 1988, and the average age at which men are diagnosed has fallen – from 72 to 70, the authors write.”

The Los Angeles Times (10/29, Kaplan) points out that the “data from the National Cancer Institute show that the rate of new cases” of metastatic breast cancer “has held steady at just under 20 per 100,000 women, despite the fact that widespread breast cancer screening programs were introduced in the 1980s.”

Modern Healthcare (10/29, Evans) reports that the authors “argue that current breast cancer screening may be ineffective because not all cancers metastasize identically, according to theories of how tumors spread.”

DCIS More Likely To Be Aggressive When Discovered In Older Women

HealthDay  reports that “while experts know the chances of finding” ductal carcinoma in situ (DCIS) “increase with age,” research published in Radiology “shows these cancers are more likely to be aggressive when discovered in older women.”

HealthImaging reports that the researchers wrote, “The discussion about upper age limits and minimal intervals in mammography screening should be focused on effectiveness of detection of invasive cancers.”

A RSNA press release noted the results are likely to provide fodder for further debate over the pros and cons of screening older women for breast cancer.

High-Dose Radiation Therapy Compared with Conventional Radiation Therapy

HealthDay recently reported that research suggests that “high-dose radiation therapy over a short period of time treats early stage breast cancer as well as longer, conventional radiation therapy does.” Investigators found that “eight years after treatment, there were no significant differences in survival among hundreds of patients who received intense radiation therapy over four weeks or standard radiation therapy over six to seven weeks.” The findings were presented at the American Society for Radiation Oncology annual meeting.

Radiation therapy significantly reduces the risk of local cancer recurrence and improves the chances of survival, but many breast cancer patients don’t get standard radiation therapy because it takes a long time and has higher costs, the researchers said.

Intense radiation therapy shortens treatment by weeks and is far less expensive for patients, the study authors explained.

ACS breast cancer screening guidelines unlikely to impact insurance coverage

Kaiser Health News (10/24, Andrews) reported that “the American Cancer Society’s new breast cancer screening guidelines, recommend[ing] that women start screening later and get fewer mammograms…is unlikely to affect insurance coverage anytime soon.” These “guidelines on their own likely won’t change insurer and employer decisions regarding coverage of screening for breast cancer, experts agree.”

USA Today (10/26) editorial criticizes the new American Cancer Society (ACS) mammogram guidelines. USA Today writes that the panel responsible for the guidelines “opted for recommendations that invite devastating consequences for some women.”

In an “Opposing View” in USA Today (10/26), Ruth Etzioni, a biostatistician, and Kevin Oeffinger, a physician, both members of the ACS panel that wrote the guidelines, write, “The recommendation that by age 45 women should undergo regular screening is designed to limit the numbers adversely impacted while benefitting as many as possible.”

The New York Times (10/26, Subscription Publication) also editorializes on the new guidelines, saying they present “another wrinkle for women who are trying to make informed decisions about their health care.” The Times argues that “when there is still such a dizzying array of expert opinion, it would be wiser to require insurers to continue covering all women starting at 40.”

The Washington Post (10/24, Lerner), Barron H. Lerner, a professor in the division of medical ethics at New York University’s Langone Medical Center, wrote that “the ACS is to be applauded,” as “its new guidelines are based on the actual scientific value of early detection, not the organization’s needs and prior beliefs.”