Category Archives: Advocacy

Media May Overhype Some Unproved Cancer Meds

According to USA Today , a report published online in JAMA Oncology indicates that “the media often use” words or phrases like “breakthrough,” “game changer,” or “miracle drug” when discussing “new cancer drugs, even when the drugs are unproved.”

The Washington Post  “To Your Health” blog reports that near the end of June, “not long after the annual conference of the American Society of Clinical Oncology,” researchers did a Google News search for “the phrase ‘cancer drug,’ along with nearly a dozen superlatives, such as ‘revolutionary’ and ‘miracle.’” Their “inquiry turned up 94 articles from 66 separate news outlets, referencing 36 different drugs.” The researchers found that “despite the glowing adjectives, half the treatments had not yet been approved by the Food and Drug Administration; a handful of them had not yet even been tested in humans.”

Modern Healthcare  “Vital Signs” blog reports that “when the researchers examined who made the superlative comments about the drugs, they found that while physicians (27%), patients (8%) and industry experts (9%) made several of the comments, 55% had no attribution—in other words, the superlative assertions were being made by the journalists themselves.”

HealthDay (10/30, Thompson, 22K) reports that “cancer patients are most harmed by this hype, said Dr. Lidia Schapira, editor-in-chief of Cancer.Net and an oncologist at Massachusetts General Hospital in Boston.”


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.”

Protesting for Metastatic Breast Cancer Research

It is estimated that 150,000-250,000, Women & Men in the U.S. are living with Metastatic Breast Cancer.  1430 people die every single day from MBC. 24% of these people are alive 5 years from Diagnosis. AND, only 7% of $15-BILLION dollars from 2000-2013, by the major government and non-profit funders in the US and the UK was spent on Metastatic focused Research. This is unacceptable, and change needs to happen.

I met an amazing woman, Beth Caldwell, who is one of the leaders of this MetUp Protest. Beth, is a young mother, metastatic breast cancer thriver, and passionate advocate. Beth, explains life as a MBC patient, the lack of funding & awareness it receives, and what we intend to do to change it. Tomorrow is one step of this process. You can see her video here: and her Huffington Post article here:

METUP is a diverse, non-partisan group committed to direct action for a viable cure for breast cancer. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.

Legislative Goals

    1. We want the SEER database modified to begin tracking when someone with early stage disease metastasizes, so that every woman and man with metastatic disease is counted.
    2. We want additional research funding for all cancer types. The National Institute of Health (NIH) now only funds about 8% of the grant applications it receives. We want that number increased to at least 25%.
    3. We want at least 30% of federal breast cancer research dollars to be spent on metastatic disease, with a focus on translational research.

Today, I will be joining over 220 Women & Men, to advocate that more funding for breast cancer gets allocated for Metastatic Research. This protest, AKA “DIE-IN” will take place on the West Lawn of Capital Hill, in Washington, D.C. We will make our voices heard, our bodies seen, and our passion for this change to happen. We will also be meeting with legislators to ask for their support.

I am honored to be here today, representing the many lives of women and men who have passed way too soon. And, to be that voice — advocating for change.

More to come soon!

Family Grows Pink Pumpkins to Raise Money for Breast Cancer Research

Olson, 27, and her parents, Joel and Rhonda Olson, are selling pink pumpkins and are donating part of the proceeds to breast cancer research.

“We’ve had great-grandmothers with breast cancer. We’ve had really close friends of the family get breast cancer,” Jerica Olson said. “Everybody can relate, so we thought we’d do our part to help out.”

Their farm is one of more than a dozen growers in Minnesota that grows pumpkins for the Pink Pumpkin Patch Foundation, a nonprofit created in 2012 that sends money raised from pink pumpkin sales to breast cancer research organizations.

Nationwide, hundreds of growers produce pumpkins for the organization.

Olson said her father heard about the Pink Pumpkin Patch Foundation on the radio, and she was tasked with researching the opportunity.

The family decided to move forward with a grower’s contract and bought 1,000 pink pumpkin seeds.

The pumpkins come in a variety of sizes and start off as a light peach or salmon color. They seem to gain more vibrancy as they sit in the sun, and some also feature blue or green swirls, Olson said.

“They look like cotton candy,” she added.

Each pumpkin will sell for $5, with $1 of the price being donated to the Pink Pumpkin Patch Foundation — 75 cents more than the growing contract requires.

So far, Olson said she has received a very positive response from the community, especially from cancer survivors. Some customers share their stories, including a woman who was buying a pumpkin for a 6-year-old girl diagnosed with breast cancer.

“When you hear about stuff like that, you feel like you have to do something,” Olson said.

Plans are already being made to plant more pink pumpkins at the Olson farm next year.

Computer-Aided Detection (CAD) Does Not Improve Accuracy of Digital Screening Mammography

Even more concerning, radiologists tended to miss more cancers when using CAD, lead author Constance D. Lehman, MD, PhD, codirector of the Avon Comprehensive Breast Evaluation Center at Massachusetts General Hospital, Boston, told Medscape Medical News.

Mammo2It is possible that radiologists reading with CAD are overly dependent on the computer and ignore suspicious lesions if they are not flagged by CAD, she said.

The study was published online September 28 in JAMA Internal Medicine. It joins two earlier studies that suggested that CAD had little, if any, impact on breast cancer detection. The studies raised concerns that CAD may increase recall and biopsy rates.

“The naysayers of these two studies had some valid criticisms,” Dr Lehman noted. One study included an older Medicare population, and the other paired CAD with outdated film mammography. “So I thought maybe we will find that there is some benefit, so it was a bit surprising that there was none at all,” Dr Lehman said.

The researchers compared the accuracy of digital screening mammography interpreted either with CAD (n = 495,818) or without CAD (n = 129,807) among 323,973 women. A total of 271 radiologists from 66 centers in the National Cancer Institute–funded Breast Cancer Surveillance Consortium interpreted the mammograms. On the basis of tumor registry data, a total of 3159 breast cancers were identified within 1 year of screening.

CAD failed to boost sensitivity or specificity of digital screening mammography, the researchers report.

4 Lessons I Learned From My Cancer Scare

home-advocateIn my original post, going back to June, I mentioned that I had received a positive PET scan.  I met with 4 of the top gynecologic oncologists in the Chicagoland area, and each one was consistent in telling me that I had metastatic breast cancer to my ovary that would require a full hysterectomy and bilateral oophorectomy. Divorce? Cancer-again? Surgery? Loose my uterus and ovaries? Was this really happening to me, right now?

With the best opinions in the area from top gyn oncs, I proceeded to surgery, prepared for the next chapter of my life, without estrogen and more surgery and potentially more chemotherapy if the surgery found additional sites of disease.

I was angry & fearful, and could not believe this was happening again.

On the day of surgery I had asked that if the growth was not cancerous to keep my uterus and other ovary. Despite support for that plan pre-operatively,  I was actually in the pre-op holding area and my surgeon was recommending the initial plan of full hysterectomy and to remove both tubes & ovaries. What was going on here? We prepare for weeks and on the morning of surgery we change the entire game plan?

Nonetheless, my wishes were followed and the involved ovary was sent for a frozen section which was read as a benign cyst. The surgeon removed both of my Fallopian tubes, and a small piece of my liver, which also turned out to be benign.

NO CANCER! NO EVIDENCE OF DISEASE! I felt like I was just given another chance at life, for the third time.

This specific experience taught me many very valuable lessons.

Multiple opinions are better than one. If I had stopped at the first or second consultation I may have had radical surgery for a benign disease. This is because PET scans can be very non-specific. Every “hot spot” is not the same, particularly in this disease and in the ovaries for pre-menopausal women, as in my case. While PETs can be “positive” or “negative” they can also be “in-between” and depending on the organ involved, may have differing sensitivities (probability disease is present if test is positive) and specificities (probability disease is absent if test is negative).

Secondly, physicians will advise you of what they think is best for you based on the evidence, literature and their experience with similar patients or “cases”. You have to remember your “case” may be different. In reality, my PET scan was “hot” but could have been “hotter” and because of the differences in how the test is performed, it may not have been as “hot” somewhere else.

Thirdly, no single test, as in PET scan, or anyone’s opinion may be that accurate and should not alone guide what YOU want to do. Physicians are trained to battle disease and as medicine has become more sub-specialized with physicians focused in narrower areas, it becomes harder for them to consider the person in as much as the disease or the psychologic impact their recommendations may have for the patient.

Lastly, be your own best advocate. Get multiple opinions, read up on what tests can and can’t tell physicians, search the literature to see the best approach to similar “cases” and finally, read first-person testimonials from other patients about their experiences, treatment and post-operative feelings.

I sincerely appreciate all the support, prayers, and kind words of encouragement. I am fully recovered, and ready to continue enjoying life, while doing the work that I have so much passion for.


ASCO Breast Cancer Symposium 2015 News Roundup

MRI improved breast cancer detection in average risk women

Oncology Practice reports that research suggests that “MRI-screening may improve the detection of biologically relevant breast cancer in women who are at average-risk, and reduce the interval-cancer rate down to 0%, at a low false-positive rate.” In the “cohort of heavily pre-screened women at average risk, the additional cancer yield achieved through MRI was high, at 15.8 cases per 1,000 women screened, and the added cancers diagnosed by MRI tended to be of high nuclear grade.” The findings were presented at the 2015 ASCO Breast Cancer Symposium.

Use Of Aromatase Inhibitors In The Adjuvant Setting May Delay Development Of Contralateral Breast Cancer

Oncology Practice reports that research suggests “the use of aromatase inhibitors (AIs) in the adjuvant setting appears to delay the development of contralateral breast cancer.” The “effect was particularly prevalent among breast cancer patients who were BRCA positive.” The research was presented at the 2015 ASCO Breast Cancer Symposium.

Age At Biopsy and Number Of Atypical Hyperplasia Foci May Be Good Predictors Of Risk For Subsequent Breast Cancer

Oncology Practice reports that research suggests that “a woman’s age at biopsy and the number of atypical hyperplasia foci appear to be good predictors of risk for subsequent breast cancer.” The “review of pathology records and medical history on more than 13,000 women with benign breast disease showed that a predictive model including age and atypia effectively identified those women with atypical hyperplasia at highest risk for developing breast cancer.” The findings were presented at the ASCO Breast Cancer Symposium.

Radiotherapy not needed for all women post mastectomy

Oncology Practice reports that research suggests that “postmastectomy radiotherapy should not be routinely recommended for breast cancer patients with microscopic nodal metastases (N1mic) and T1-2 tumors.” Investigators found that “in patients with T1-2, N1 disease who were treated with standard therapies, the study authors found that overall, there were low rates of locoregional failure.” The findings were presented at the 2015 ASCO Breast Cancer Symposium.

Many women with triple-negative breast cancer aren’t screened for BRCA

Oncology Practice reports that research indicates that “many younger women diagnosed with triple-negative breast cancers do not get tested for BRCA, despite guideline recommendations.” Researchers found that “among 173 women with triple-negative tumors – lacking the HER2, estrogen and progesterone receptors –17% of those who should have been tested for BRCA according to National Comprehensive Cancer Network (NCCN) guidelines, were not tested.” The findings were presented at the ASCO Breast Cancer Symposium.

Use Of MRI Scans Before Breast Cancer Surgery On The Rise

HealthDay reports that research published in JAMA Oncology indicates that “the use of MRI scans before breast cancer surgery has risen eightfold over the past decade, even though guidelines on their use in this setting are inconsistent.” The study found that “this increased use of MRI…is also linked to an increase in further testing, longer wait times to surgery, a higher likelihood of a mastectomy instead of breast-conserving surgery, and a higher likelihood of having the healthy, opposite breast removed.”

Medscape reports that “patient-related factors associated with higher” preoperative MRI “use on adjusted analyses included younger age, high socioeconomic status, and a higher Charlson comorbidity score.”

FDA to Establish Patient Advisory Committee on Medical Devices

The Minnesota StarTribune recently reported that an advisory group will provide input on clinical trial designs.

The U.S. Food and Drug Administration announced last Friday the establishment of its first-ever patient advisory committee on medical devices.

The new 11-member group will include nine voting members “knowledgeable in areas such as clinical research, primary care patient experience and health care needs of patient groups in the United States.” The committee will also have one nonvoting “consumer representative,” and one nonvoting “industry representative.”

The committee, according to the FDA, is designed to inject a patient perspective into the agency’s deliberations on device development, approval and monitoring. The FDA says the committee will help the government “meet its public health commitment to improve patient health and quality of life.”

Among other things, the committee will offer suggestions about FDA policies and rules and designs for clinical trials and device labels. It also will examine ways to determine patient preferences, how to best report patient experiences with medical devices and how to remedy unmet clinical needs.

The agency has asked for 60 days of public comments to prioritize those points of concern.

One of the primary missions of the committee will be to help figure out when and how patients should have input into the medical device life cycle.

Potential areas of focus could be methods of recruiting patients to and keeping them in research projects. But other potentially significant pieces will be improving ways the public can report their experiences with devices once they are implanted and with telling the public about risks of products that are already on the market.

Consumer advocates and health researchers offered a guarded response to the FDA announcement and not everyone is sold on the idea.

“Often so-called patient groups are sponsored heavily by the medical device industry,” said Dr. Michael Carome, health research director at the consumer group Public Citizen. “Patients can make the agency aware of unmet medical needs. But when [FDA] decides whether or not to approve a device, the decision should be made based on scientific research and not patient preference.”

There is a “big problem” with the lack of influence of patients and consumers in the device approval and monitoring processes, added Diana Zuckerman, president of the National Center for Health Research, a think tank focused on the safety and effectiveness of medical devices.

Patients and consumers have traditionally been treated as “an annoyance” by FDA committees, Zuckerman said. Still, she is not sold on the idea that “segregating them into their own panel will be helpful.”

Besides industry sponsorship of supposed patient representatives, Zuckerman said, “We seem to get the same three patient representatives on every panel. We are not getting true independent voices of people who have experience with drugs or devices.”

My Visit on Capitol Hill — Bipartisan Bill to Improve Cancer Care

kjdc2Today, I flew to Washington, DC., to attend the Press Conference and meet with Congressman Randall M. Hultgren, for the Planning Actively for Cancer Treatment (PACT) Act bill (H.R. 2846) which would significantly improve the quality of care for Medicare patients with cancer. This bill is the top policy priority for National Coalition for Cancer Survivorship, and has the potential to make a real difference in cancer care. Congresswoman Lois Capps (D-CA) and Congressman Charles Boustany, Jr., M.D., (R-LA) introduced the bill and are very passionate and hopeful that we can move it through. For more information on the PACT Act, please go to:

Experts say most cancer patients currently do not receive a written plan that explains their diagnosis, prognosis, treatments, and expected symptoms, leaving them to navigate the complexities of a cancer diagnosis without clear direction or knowing what to expect from their care. This can affect the physical and emotional well-being of patients, as well as increase costs due to fragmented care.

“This year, more than 1.6 million Americans will be diagnosed with cancer, beginning what is most often an extremely intimidating journey,” Congresswoman Capps said. “Although many of these cancer patients and survivors will receive the best care our health care system has to offer, gaps still exist. The PACT Act would fill in those gaps by bringing the care team and patient together to develop a roadmap for the individual’s cancer care, from diagnosis through survivorship.”

Congressman Boustany said, “As a physician who treated life-threatening diseases, I know just how frightening a diagnosis can be for patients. It takes teamwork between doctors and patients to ensure the patient receives the best possible care positioning them for a successful outcome. The PACT Act is a smart approach that ensures cancer patients receive a clear and thoughtful roadmap taking them from diagnosis to remission and beyond.”

Cancer has a major impact on Medicare beneficiaries. The majority of cancer diagnoses occur in individuals 65 years and older, and the majority of cancer survivors are senior citizens. The PACT Act would establish a new Medicare service for cancer care planning.  The planning service could be provided to patients at the time of cancer diagnosis, at the end of active treatment and beginning of long-term survivorship, and when there is a significant change in treatment.

“The PACT Act has the potential to make a real difference in cancer care in our lifetime,” said NCCS Chief Executive Officer Shelley Fuld Nasso. “Medical providers want to deliver the best care possible, but in order to do that, the patient’s wishes must be clearly understood. By encouraging deliberate discussion and planning before, during and after cancer treatment, we can help make cancer patients—and the health system that cares for them—better.”

See the full press release here

As a two-time breast cancer survivor myself, I can see the tremendous value a Cancer Care Plan can provide patients and their families. This type of care plan would support patients through their cancer care continuum, at the time of diagnosis, at transitions in active treatment, and at the transition from active treatment to long term survivorship. The process would allow a written plan of care — developed between a patient and their health care team, to support patients managing their care.

Currently there are a few care plan options available for use now. ASCO has this template available:, and NCCS has partnered with Journey Forward to offer a PDF version or a FREE mobile app. You can find out more about it here:

If you would like to advocate for this bill to be passed, please reach out to your local representative and ask them to support H.R. 2846.

Be your own best advocate.