Grateful & Blessed

Today, God has blessed me with reaching a milestone, turning 40 years old, that 4 years ago, I never thought I would live to see. I can remember as clear as day sitting with my kids telling them that my cancer had returned, and hearing my daughter scream and cry with such anger and despair, asking if I was going to die. At that moment, I had no idea how to even respond — only to teach her that our faith was our only hope, and that the man above had the final say. Some very wise words my oncologist, Dr. Vincent Valero told me when I asked him how to overcome the fear and anxiety this beast called cancer gives us. A very dear friend of mine also gave me some wise words of advice on how to spend the next decade of 40 – he said, “Invest in your life, surround yourself with positive people, and do what brings you purpose.” So, here I am today – healthy, happy, blessed, grateful, and alive. I have overcome cancer twice, experienced my own god-daughters battle with cancer, while supporting my best friend along the way, watch my son throw 60MPH fast balls with an amazing, supportive, baseball team that is like family to us, see my daughter attend her first high school dance, traveled to Hawaii with my daughter, sister, and cousins, and built a business that brings me so much purpose, that fuels my passion each day working alongside the most amazing colleagues near and far that have now become dear friends of mine, that I am so grateful and blessed to know. As I move into this next chapter of life, I will continue to embrace every day, creating many more memories, doing what I love – helping other patients and their families, while honoring and remembering the lives of others that were lost way to soon. My only request for anyone reading this is to “pay it forward” to someone today with a small act of kindness. Cheers to many more years to come, and the many blessings that continue to surround me.

Thank you Inspirata!

I am grateful to have the support of one of the many amazing corporate sponsors, Inspirata.

Inspirata specializes in workflow solutions that digitizes and automates the entire pathology case review process with their single sign-on Digital Pathology Cockpit. The work they do empowers physicians, to ensure the patients diagnosis and journey is much faster, transparent and informed.

Inspirata is extremely proud and honored to be sponsoring three-time cancer survivor Kimberly Jewett as she takes on yet another challenge in her life—this time, fortunately, the challenge is one of her choosing and in support of a great cause. Kimberly will be participating the three-day, 200-mile YSC Tour De Pink bike ride in California Oct. 14-16. As with everything she does, Kimberly is facing this contest with complete and total commitment and her usual optimistic spirit. Inspirata is happy to be a part of the support team helping her along the way! Kimberly is quick to confess that the closest she normally gets to riding a bike is exercising on her spinner at home, but that didn’t stop her from signing on for the Tour De Pink is to raise money and bring attention to young women with breast cancer. She has begun a rigorous training routine to get in shape to complete the 200-mile bike ride, which is being held half way across the country from her home in Chicago. Regardless of how fast or how far she goes, Inspirata believes Kimberly is a winner in her advocacy and fundraising on behalf of breast cancer patients everywhere. Her cause is our mission.

Thank you Inspirata, for your support, mission, and passion for patients like me.

You can read more about Inspirata here:

Inspirata Is Proud to be Part of the Team Cycling for Cancer Survivors

HPV Infections Markedly Reduced by Vaccinations

According to a recent story in The New York Times, “A vaccine introduced a decade ago to combat the sexually transmitted virus that causes cervical cancer has already reduced the virus’s prevalence in teenage girls by almost two-thirds, federal researchers said Monday.

Even for women in their early 20s, a group with lower vaccination rates, the most dangerous strains of human papillomavirus, or HPV, have still been reduced by more than a third.

‘We’re seeing the impact of the vaccine as it marches down the line for age groups, and that’s incredibly exciting,’ said Dr. Amy B. Middleman, the chief of adolescent medicine at the University of Oklahoma Health Sciences Center, who was not involved in the study. ‘A minority of females in this country have been immunized, but we’re seeing a public health impact that is quite expansive.'”

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.”

ASCO Names Immunotherapy The “Clinical Cancer Advance Of The Year”

Medscape (2/4, Chustecka) reports that “immunotherapy has been chosen as the ‘clinical cancer advance of the year’ by the American Society of Clinical Oncology (ASCO) in its Clinical Cancer Advances 2016 report.” In the introduction to the report, ASCO president Julie Vose, MD, writes, “No recent advance has been more transformative than the rise of immunotherapy, particularly over this past year.”

MedPage Today (2/4, Bankhead) reports, “Published online in the Journal of Clinical Oncology to coincide with World Cancer Day, the report calls on Congress to continue its ‘sustained robust federal funding for cancer research,’ characterized as pivotal to future progress in cancer.”

Healio (2/4, Kelsall) reports that “during a press conference held on Capitol Hill in Washington, D.C., on World Cancer Day,” Dr. Vose said, “In the era of precision medicine and molecular medicine, we can select treatment based on the genomic profiling of each patient and each tumor. Cancer immunotherapy uses the body’s own immune system to fight cancer, which is something that those of us in cancer research have been dreaming about for years, and which has finally come to fruition.”

Is There Sex After Cancer?

MedPage Today (1/26, Harrison) reports that while it is common “for women with cancer to have a number of unique concerns about sexual function following diagnosis and treatment…it is unlikely that there is a simple algorithm to address those concerns.” For instance, “the Scientific Network on Female Sexual Health and Cancer used a web-based survey to gather information about physical examination practices across a diversity of providers and received 34 responses, according to Stacy Tessler Lindau, MD…lead author of a study published in CA: A Cancer Journal for Clinicians.” The researchers wrote, “The routine gynecologic examination performed in the general gynecology or the gynecology oncology setting typically does not include all the elements needed to thoroughly assess a patient with sexual function concerns.”

Some Tumor Samples In MATCH Trial Found To Be Low-Quality

This article leads in with “Shoddy biopsies deny cancer patients a shot at personalized treatment”. Biopsy samples taken from patients with advanced cancer, were collected by doctors in hundreds of clinics nationwide. When researchers checked them, they found as many as 1 in 5 didn’t have enough malignant cells to analyze, in most cases because the biopsy had been poorly done. This glitch raises troubling questions about the new era of precision medicine. The article goes on to report “biopsies done in rural or community centers were more likely to be shoddy”. Those patients’ tumors couldn’t be analyzed and they couldn’t be matched with medicines targeted at their specific genetic mutations. And that suggests that access to the most advanced, customized cancer treatments might be highly unequal — and dependent on the quality of the local doctors performing biopsies. Perhaps “shoddy” is a strong word when trying to balance the need of being minimally invasive to arrive at a tissue diagnosis versus having enough tissue/tumor cells for additional molecular analysis.  Larger biopsies carry the risk of more potential complications while less invasive procedures that may be sufficient for accurate grading/staging may be insufficient for downstream analysis.

STAT reported that the MATCH trial, launched last year by the National Cancer Institute, “has run into an unexpected roadblock: Many of the tumor samples aren’t robust enough to be put through genetic analysis.” According to STAT, the issue “raises troubling questions about the new era of precision medicine.” The article pointed out that though interventional radiologists usually aim to take as small a biopsy as possible to avoid infection and other risks, “only larger and more invasive biopsies can provide the type of genetic information needed for personalizing therapy.” Dr. Michael Thompson, incoming chair of the Community Research Forum Council at the American Society of Clinical Oncology, said, “You have these competing issues of trying to minimize toxicity from the procedure and trying to get optimal tissue.”

“Personalized medicine” for years to come will be forced to deal with “diagnostically” suitable tissue samples versus “more tissue for molecular analysis”.

Read more here.

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.