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Takeaways from SABCS Session: Diversity in Clinical Trials with ANGEL Advocate Erin Perkins

Read more to learn about some insights, reflections, and opinions of patient advocates who attended SABCS. We’re sharing a little about each Tigerlily ANGEL Advocate, their story, and why they decided to participate in SABCS 2021. 

Erin Perkins was diagnosed January 28th, 2021, at age 34 with invasive ductal carcinoma Stage 2B while nursing her son. She was also triple-negative.  Triple Negative Breast Cancer (TNBC) is one of the most aggressive types of breast cancer, and is diagnosed often in younger Black women.  In spite of the diagnosis and the treatment she faced, while undergoing sixteen chemotherapy infusions and a bilateral mastectomy, Erin knew that she wanted to learn more about breast cancer and be a voice for other patients.

Advocacy is in Erin’s heart—through and through. And it has been, even prior to her breast cancer diagnosis. Erin’s advocacy is woven deep into the fiber of her being and she leverages her power and her privilege through her voice. Erin attended multiple sessions on the first day of SABCS, one of which was Trust in Science and Healthcare: Diversity In Clinical Trials. Here are some thoughts and notes that Erin shared with us from her first day at SABCS.

Tigerlily Foundation: What were your main takeaways from this session? 

Erin: Minority populations are sometimes not informed of clinical trials. Patients are not necessarily unwilling, but unable to participate. However, this time impacts our ability to engage in trials to contribute to treatments that work better for our bodies, and time is a disparity! We need to hold researchers accountable to change, and accountability is needed so that money is not prioritized over patient’s needs.

Tigerlily Foundation: What new information did you learn that you want to learn more about? 

Erin: I am very interested in learning more about the Diverse Clinical Trial Act by the American Cancer Society.

  

Tigerlily Foundation: What part of the continuum of care was addressed?

Erin: Practitioners must invest in cancer care programs that adequately receive the patient. The keyword is “receiving”. Patient perspective was important with a cross-sector partnership. Addressing research laziness, language gaps, and literacy issues i are important. One of the speakers brought up a common issue for patients of color contributing to worse outcomes. That is the belief, “I don’t want to be screened because I don’t have the resources to treat it if I have it [breast cancer].” There is a need here for comprehensive resources. 

Tigerlily Foundation: Were disparities discussed or addressed? How so?  

Erin: YES! This session was 100% about the disparities in healthcare and ideas for how to work towards filling in these gaps.  

  

Tigerlily Foundation: Was your perspective influenced in any way after the session?  If so, how?  

Erin: I just think of how the panelist brought up a reason some people in underserved populations (largely due to systemic racism) almost have no choice at better outcomes; thinking of how the panelist spoke about a person who would not get screened because they could not afford (because of a myriad of factors) to get it treated anyway, so they might as well not even know. What a motivator for us all to listen and learn and work together to create pathways for all to receive equal access to the care we all deserve.  

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This content is sponsored by our Partners at Seagen, Pfizer, and Puma Biotechnology.

The session was moderated by Tigerlily Foundation’s President, Maimah Karmo; and Dr. Charles Perou, May Goldman Shaw Distinguished Professor of Molecular Oncology Research, Professor of Genetics & Pathology at the Lineberger Comprehensive Cancer Center, University of North Carolina.

Speakers for this SABCS Special Series Included: Lori L. Wilson, MD, Associate Dean of Diversity and Faculty Development, Howard University College of Medicine, Deborah Stroman PhD, UNC Health Equity and Social Justice, Lisa C. Richardson, MD, Director, Division of Cancer Prevention and Control, CDC, Olufunmilayo I. Olopade, MD, FACP, Director, University of Chicago, Daniel Calac, MD, Chief Medical Officer, Indian Health Council, Inc, George Sledge, Jr., MD, Professor of Medicine (Oncology), Stanford Cancer Center, Melissa B. Davis, PhD, Associated Professor in Surgery, Weill Cornell Medicine, Darcy Burbage, DNP, RN, AOCN, Na’Diah Smith, Patient Advocate, Aliya Whipple, Patient Advocate, Lauren Candies Tarpley, AYA Breast Cancer advocate, Published Author, Erica Stringer-Reasor, MD, Associate Professor of Medicine, Director Breast Cancer Program, University of Alabama – Birmingham, Eric P. Winer, MD, Chief, Division of Breast Oncology Center, Dana-Farber Cancer Institute, Amelie G. Ramirez, Dr.P.H., M.P.H., Chair, Department of Population Health Sciences, UT Health San Antonio, Elena Martinez, PhD, Professor UC San Diego Moores Cancer Center, Sophia George, PhD, Research Associate Professor, University of Miami Cancer Center, Thelma Brown, Patient Advocate, Ysabel Duron, Patient Advocate, and Ashley Dedmon, Patient Advocate.

A Patients Guide to Health Equity, Partnership and Collaboration

Of the more than 200 different types of cancers, breast cancer remains the most common. It is important to note that breast cancer does not affect all men and women the same. Even living in North America, unfortunately still impacts their access to care. As researchers work to address disparities it remains critical to look at communities at the grassroots level. Tigerlily Foundation and American Association for Cancer Research (AACR) hosted a special session at the 2020 San Antonio Breast Cancer Symposium that addressed the importance of health, collaboration and partnership with Black, Indigenous and people of color (BIPOC). The numerous research studies shared during our special sessions suggest that the primary reasons for breast cancer-related health disparities are rooted in large part by socio-economic differences. However, even the most educated and economically advantaged Black, Indigenous and persons of color (BIPOC) have a higher prognosis of cancer compared to White women. Tigerlily Foundation is committed to working with medical researchers and professionals to address racial and socio-economic disparities in breast cancer care. Sharing these findings with you, as an advocate and ally, is part of our mission to end disparities – of age, stage and color, in our lifetime.

Where You Live Impacts Your Cancer Survival 

The University of Miami and Florida International University are the first to use a new measure, the Index of Concentration at the Extremes (ICE), to analyze the effects of economics and the neighborhood you live in (racial/ethnic residential segregation) on breast cancer survival in South Florida. The study looked at 6,145 breast cancer patients from South Florida. 

With over 52% Hispanic, 26.3% Non-Hispanic Whites (NHW), and 17.2% Non-Hispanic Blacks (NHB) represented, the study revealed that women with breast cancer living in extreme poverty had a significantly greater chance of dying from the disease.  

In conclusion, The University of Miami and Florida International University found that breast cancer survival disparities are partly influenced by extreme racial/ethnic residential and economic segregation. When accounting for socio-demographics, tumor characteristics, the guideline for appropriate treatment from the National Comprehensive Cancer Network (NCCN), disparities remained. This suggests potential social and environmental factors that impact survival. Further supporting the need for effective interventions that account for the social and environmental contexts in which cancer patients live and are treated.

Tigerlily Foundation’s Points to Consider:

  • Are there any other studies like this happening anywhere else in the United States?
  • What will be the impact COVID-19 has on the already overwhelmed health care system in underserved communities that work with and serve individuals in extreme poverty?

Where you live matters: Impact of economic, racial/ethnic, and racialized economic residential segregation on breast cancer survival – Goel N, Kelly KN, Yadegarynia S, Choi S, Kesmodel SB, Westrick A. University of Miami, Miami, FL; Florida International University, Miami, FL.

Racial Disparities in Breast Cancer Screening 

In another study by Johns Hopkins University in Baltimore, Maryland they assessed 140,346 women between 2013-2020. Researchers tracked breast cancer screening methods, focusing on racial differences in utilization and effectiveness.  The use of Digital Breast Tomosynthesis (DBT), a more effective screening technique compared to traditional two-dimensional digital mammography (FFDM), rapidly increased over the study period, however, Black and Asian women were less likely to have had a screening with DBT compared to White women. 

Racial disparities persist despite with uptake of digital breast tomosynthesis (DBT) for breast cancer screening – Ambinder EB, Oluyemi E, Visvanathan K. Johns Hopkins, Baltimore, MD

Tigerlily Foundation’s Points to Consider: 

  • While screening rates between Black and White women are similar, the modalities of screening vary. Research data shows that healthcare is segregated, possibly driven by racial differences in sites of care.  
  • DBT is not offered widely.  The detection advantage of DBT vs. FFDM is most prominent for women with dense breasts. There is evidence that Black and Asian women have more dense breasts than White women, if age and body mass index (BMI) are adjusted in the study. 
  • We would like to understand if the patients were able to access 3D mammograms without a referral from their healthcare provider? Is access based on availability or non-referrals? 

Reducing Racial Disparities in Oncoplastic Surgery 

Here is a study from the National Surgical Quality Improvement Program (NSQIP) looking at 180,700 women who underwent Breast Conservation Surgery (BCS). They identified through the database between 2008-2018, racial differences in BCS utilization rates (partial mastectomy and oncoplastic/reconstructive surgery) that were examined to determine how the rates changed over the period of time. Of the 46% of women who underwent BCS, 92% underwent a partial mastectomy and 8% received oncoplastic procedures. 

The proportion of patients having oncoplastics increased from 3.5% in 2008 to 10% in 2018, leading to a declining proportion of partial mastectomies: 96.5% to 90.0%. Overall, oncoplastic utilization between 2008 and 2018 increased from 4% to 10% in Asian and White patients, and 1% to 10% in Black patients. 

The racial index of disparity for BCS patients decreased from 17.1% to 9.7%; while the index of disparity has remained relatively unchanged for partial mastectomies (1.2% to 0.2%), but significantly decreased in oncoplastics (35% to 1.6%) indicating an improvement in racial disparities for oncoplastic procedures. This study demonstrates promising progress within the field of breast conservation surgery with a decreasing index of disparity among races especially in oncoplastic surgery.

Examining a decade of racial disparity in partial mastectomy and oncoplastic surgery – Jean J, Jonczyk MM, Homsy C, Naber S, Chatterjee A. Tufts University School of Medicine, Boston, MA; Tufts Medical Center, Boston, MA.

Tigerlily Foundation’s Points to Consider:

  • What caused a significant decrease of racial disparities in oncoplastics but not partial mastectomies? 
  • Was information and options provided by the patients’ health care provider?
  • Were regional differences apparent for mastectomy and partial mastectomy rates? 

Triple-Negative Breast Cancer Rates Higher Among African-Ancestry Patients 

Research indicates that African-Ancestry (AA) patients experience a disproportionately higher rate of Triple-Negative Breast Cancer (TNBC) than European-Ancestry (EA) patients. 

The University of Chicago performed a study on genomic and transcriptomic sequencing of breast tumors comparing 221 AA and 341 EA patients at the molecular level. While the biological drivers behind this disparity remain unknown between ancestral populations, EA TNBC patients in comparison to AA TNBC patients exhibited higher mutation rates in certain tumors such as BRCA2, HR-/HER2+ and FGF3.

The study’s results concluded that there were significant differences in breast tumor heterogeneity and mutation spectrum in TNBC and HR+/HER2- breast cancers between AA and EA patients. Additionally, ancestral differences were also observed in the activity of relevant signaling pathways for TNBC. Overall, the results identify previously unexplored pathways and molecular phenotypes of aggressive disease, providing opportunities for development of more effective biomarker informed treatment of breast cancer in diverse populations.

More comprehensive research and case studies need to be implemented on African-Ancestry (AA) patients. Not having this understanding of how the disease impacts AA patients, it can become more aggressive and causes a higher mortality rate.

Comprehensive genomic and transcriptomic profiling of molecular subtypes reveal ancestral differences in the activity of signaling pathways between patients with African and European ancestry – Miyashita M, Bell JSK, Zheng Y, Yoshimatsu T, Rajagopal PD, Woodard A, Reynier JB, Sveen E, Khramtsova G, Liu F, Ibraheem A, Fleming G, Jaskowiak N, Nanda R, Leibowitz B, Beaubier N, White K, Huo D, Olopade OI. The University of Chicago, Chicago, IL; Tempus Inc, Chicago, IL.

Tigerlily Foundation’s Points to Consider:

  • How do we encourage the scientific community to create more clinical trials that address genomic and transcriptomic sequencing?
  • How do we support access and patient confidence in clinical trials, in particular ensuring that we have enough patients in African-Ancestry?

Racial Differences in Breast Cancer Immune Microenvironments 

The rate of mortality among Black women is 40% higher than among White women. Although, the cause of this staggering difference is still not completely understood, a growing body of evidence leads scientists to take a closer look at the immune microenvironment (the interaction between cancer cells and other cells within and around a tumor)  to find answers. 

The authors used the Carolina Breast Cancer Study (CBCS), a large population-based study, and a test they created to identify 48-genes from 13 immune cell types in 1,957 breast cancer patients, including 53% Black and 47% non-Black women. The study identified three breast cancer phenotypes defined by the level of activity of the immune microenvironment which correlated to risk of recurrence, intrinsic subtype, age and race.  Immune response differences may be targetable to improve treatment response, and therefore it is important to identify race- and subtype-specific differences in immune microenvironments as these are the two most notable differences in this study. 

Racial differences in breast cancer immune microenvironments – Hamilton AM, Olsson LT, Calhoun BC, Hoadley KA, Troester MA. University of North Carolina at Chapel Hill, Chapel Hill, NC.

Tigerlily Foundation’s Points to Consider:

  • How can we tailor cancer treatment specific to race sub-type and immune microenvironments?

Racial Disparities in long-term Survival after Chemotherapy 

Pathological complete response (pCR) is a strong predictor of long-term survival among breast cancer patients who receive chemotherapy before undergoing surgery. pCR occurs when the tissue no longer contains any cancer cells after treatment with chemotherapy then surgery. In a study by the University of Chicago, they looked at 595 stage I-III breast cancer patients. Researchers sought to determine whether racial disparity existed in the rate of pCR. The results of the study showed that significantly fewer Black patients achieved pCR than White patients. 

Even after adjusting for tumor subtype and clinical stage, Black patients still had a much lower chance of achieving pCR after neoadjuvant chemotherapy. While the delayed initiation of treatment might have partially contributed to the racial disparity, black women with hormone receptor negative, HER2 positive breast cancer had the largest disparity. 

Researchers concluded additional investigation is required as this study was quite small. 

Racial disparities in pathological complete response among breast cancer patients receiving neoadjuvant chemotherapy – Zhao F, Steiner M, Ibraheem A, Fleming G, Jaskowiak N, Nanda R, Olopade OI, Huo D. University of Chicago, Chicago, IL.

Tigerlily Foundation’s Point to Consider:

  • Clinical trial involvement should be encouraged within the Black community. On average, Black women do not have complete pathologic responses to neoadjuvant chemo, which reemphasizes the inherent biological differences Blacks have in response to available therapeutics. 

Did you know Gene Expression Differs Between West African and East African Breast Tumors?

Global frequency of triple-negative breast cancer (TNBC) reveals a unique pattern that suggests there may be genetic increased risk specific to TNBC. 

In a recent study, West African and African-American women were associated with higher rates of TNBC than East African women and White American women. Even within TNBC cases, outcomes differ between race groups, which may be due to differences in TNBC subtypes/biology, related to genetic ancestry. The study sought to determine the difference in genetic expression and TNBC tumor environments in two distinct ways (race vs. ancestry). The study looked at Ghanaian (West African) and Ethiopian (East African) by analyzing gene expressions. Scientists found hundreds of genes differentially expressed in TNBC tumors between the two groups.

This important ground-breaking study is first of its kind and demonstrates the need for deeper research in African ancestry.

Martini R, Gebregzabher E, Dorsaint P, Chu T, Arora K, Gibbs L, Manojlovic Z, Robine N, Sboner A, Elemento O, Carpten J, Newman L, Davis M. Weill Cornell Medical College, New York City, NY; New York Genome Center, New York City, NY; University of Southern California, Los Angeles, CA.

Tigerlily Foundation’s Points to Consider:

  • Tigerlily Foundation and its partners encourage and support further research and development in this area.
  • Does the data vary by group based for all stages of disease (early-stage vs metastatic)? Is there a survival difference based on race or ancestry and the associated genes?
  • The possible genetic variation between West and East African. 

The Impact of Medicaid Expansion on the Gap between American Indians and Whites on Breast Cancer Management and Prognosis 

Significant disparities in outcome exist between American Indian (Indigenous) and White populations. Between 1999 and 2009, breast cancer-related death rates did not decline significantly among American Indians (Indigenous) compared to Whites. 

While insurance coverage undoubtedly plays a vital role in ensuring access to preventative services and breast cancer care, it is uncertain how this may affect patient outcomes. When the Affordable Care Act of 2010 rolled out the Medicaid Expansion, a larger percentage of the population gained access to health insurance coverage. 

A group of researchers sought to determine how this expansion affected breast cancer management and prognosis for American Indians (Indigenous) compared to Whites. The study results were mixed. While early breast cancer diagnosis increased among American Indians (Indigenous), 3-year mortality rates did not change. 

Tigerlily Foundation’s Points to Consider:

  • Tigerlily Foundation and partners recognize the disparities in health care impacting the Indigenous population across the United States. It is not acceptable that the 3-year mortality rate did not change, even with greater access to Medicaid. 

Did Medicaid expansion under the Affordable Care Act narrow the gap between American Indians and Whites on breast cancer management and prognosis? – Gaba AG, Cao L, Renfrew R, Egland KA, Witte DL, Wernisch J, Crosby R. Sanford Roger Maris Cancer Center, Fargo ND; Sanford Research, Fargo, ND; Sanford Health, Fargo, ND; SAb Biotherapeutics, Sioux Falls, SD; Sanford Research, Sioux Falls, SD; Sanford Center for Biobehavioral Research, Fargo, ND.

Impact of Medicaid Expansion on Breast Reconstruction in Low-Income Breast Cancer Patients  

Researchers studied Ohio women (low income, 30–64-year-old, newly diagnosed) with local or regional spread of breast cancer in the post-Medicaid expansion between 2014-2016. This study was to determine whether the Time To initiation of Treatment (TTT) following a breast cancer diagnosis decreased. This research is important since significant delays in TTT can affect quality of life and increase mortality rates.

Using data from the Northeast Ohio Cancer Assessment and Surveillance Engine (NEO-CASE), researchers identified 30–64-year-old women with a new diagnosis of invasive, non-metastatic BC who were uninsured or on Medicaid when diagnosed, excluding women with incomes above 138% of Federal Poverty Level. Though no significant change in TTT was observed, the percentage of uninsured in the low-income group fell by more than half. The percent of women undergoing reconstructive surgery increased from the pre-to the post-Medicaid expansion period, a change not observed in the privately insured control group. Overall, TTT increased by 2 days post-expansion which is statistically insignificant. 

Despite the lack of improvements in TTT, the study notes the drop in the percentage of uninsured BC patient’s post-expansion. They also noticed a decrease in the percentage of women diagnosed with regional-stage disease. Lastly, they noticed an increase in BC patients undergoing reconstruction. Taken together, these trends show an overall positive impact of Medicaid expansion on BC process of care and outcome measures.

Medicaid expansion associated with earlier stage and improved reconstruction rates in low income breast cancer patients – Rose J, Dong W, Kim U, Obeng-Gyasi S, Koroukian S. Case Western Reserve University, Cleveland, OH; Ohio State University Medical Center, Columbus, OH.

Tigerlily Foundation’s Points to Consider:

  • Would the United States benefit from a healthcare system similar to Canada, Norway and Sweden?
  • What would this cost and how would you implement it?

Impact of Medicaid Expansion on Racial Disparities and Initiation of Chemotherapy Treatment 

When patients receive late adjuvant chemotherapy, the harder it is for the body to fight the disease even with medical intervention. There is a greater risk of the cancer spreading. Racial and ethnic minorities, uninsured populations, and low-income patients experience such delays far more often.

A provision in the Affordable Care Act called for expansion of Medicaid eligibility in order to cover more low-income Americans. This study evaluates the impact of Medicaid expansion on racial disparities in time to adjuvant chemotherapy administration. The study looked at 105,385 patients (aged 40-64) diagnosed with primary invasive BC (stage I-III) between 01/01/2007 and 12/31/2016 identified in the National Cancer Database. 

Of the total sample size 71.8% (75,663) were diagnosed in the pre-Medicaid expansion period and 28.2% (29,722) in the post- Medicaid expansion period. The racial breakdown includes 77.5% White, 11.7% Black and 4.9% Hispanic patients. In both study periods Blacks and Hispanics experienced chemotherapy initiation delays compared to Whites. The proportion of chemotherapy delays decreased for all races between the pre- and the post-expansion period. 

Researchers observed a statistically significant decrease in racial disparity in the chemotherapy initiation and demonstrated that Medicaid expansion reduced racial disparities. This in turn decreased the proportion of Blacks and Hispanics experiencing delays in adjuvant chemotherapy initiation and the gap that exists when compared to Whites. 

Impact of Medicaid expansion on racial disparities in time to adjuvant chemotherapy administration among breast cancer (BC) patients Chavez-MacGregor M, Lei X, Zhao H, Shih T, Giordano SH. The University of Texas MD Anderson Cancer Center, Houston, TX.

Tigerlily Foundation’s Points to Consider:

  • Many of the Southern states that have the largest Black populations chose not to expand Medicaid under the Affordable Care Act. 
  • 11 Million undocumented immigrants not covered by the Affordable Care Act.

How do Socioeconomic, Demographic, and Genomic Factors Affect Breast Cancer Mortality?

Studies have shown that health services, socio-demographic, clinical, and genomic factors all contribute to breast cancer disparities. The degree to which each factor contributes to health outcomes in cancer is uncertain. 

In a retrospective study (a study of past data) used Formalin-Fixed Paraffin-Embedded (FFPE) breast cancer (BC) tissue collected between 1992-2006 within the Iowa and Hawaii (SEER Residual Tissue Repositories). Researchers created the first-in-kind linkage of SEER-Medicare data to physical tumor samples to combine clinical, health services, and genomic data into a single group. This linkage allows genomic analyses with clinical and health services data. 

Researchers anticipate that this analysis method may offer new ways to explain links between biology, access, and disparities in breast cancer outcomes.  

Comprehensive analysis of health services, sociodemographic, clinical, and genomic factors driving locally advanced breast cancer mortality via a first-in-kind linkage of SEER-Medicare data with physical tumor samples Robinson TJ, Wilson L, Marcom PK, Troester M, Lynch CF, Hernandez B, Castellar EP, Brauer HA, Enewold L, Dinan M. H. Lee Moffitt Cancer Center, Tampa, FL; Duke University Medical Center, Durham, NC; University North Carolina Chapel Hill, Chapel Hill, NC; University of Iowa, Des Moines, IA; University of Hawaii Cancer Center, Honolulu, HI; Gates Foundation, Seattle, WA; NIH, Bethesda, MD.

Tigerlily Foundation’s Points to Consider:

  • How do encourage more industries and Key Opinion Leaders (KOL) to sign the #InclusionPledge and extending to our social and family networks to get involved.

This article was co-authored and peer reviewed by Erica Warner, ScD, MPH; Arnethea Sutton, Ph.D.; Onyinye D. Balogun, M.D., Melissa Davis, PhD; Ogori N. Kalu, MD, Maimah Karmo, Diana Porter Bodden, Shanda Cooper, MSc., Tania Koulakian and Jacqueline Seylmes. 

All poster abstracts referenced in this article can be located on the 2020 SABCS Virtual Symposium Website. 

What our ANGELs have to say

“I did enjoy the session. Although there is a long way to go to end disparities, it seems that studies and research are asking questions that will inform steps that can be taken to improve outcomes.” 

“Much new evidence and research was presented, as well as new hypotheses and explanations offered for disparities.” 

“The “voices” included were largely research studies or from clinicians. The information included was relevant and directly important to patients, but I didn’t feel like the patient voice was necessarily included.” 

“I am aware that breast cancer outcomes might be improving, but significant disparities exist in that improvement. I felt this presentation was a hopeful step in getting to the root causes in order to eliminate these disparities. Changes in screening, treatment, access and understanding of tumor biology were all proposed. The field of social stressors, allostatic load, and social epigenetics were raised, but leave room for further investigation and discussion.” 

Talking about mBC Saves Lives

Bridging the Gap Between Early-Stagers and Metastatic Breast Cancer

“Not everything that is faced can be changed, but nothing can be changed until it is faced.” -James Baldwin, “As Much Truth As One Can Bear,” The New York Times, January 14, 1962

Alongside other warriors, as a 14-year survivor, Maimah dedicates her life to advocating for improvements to education and treatments needed to make mBC a chronic disease, not a terminal one. To do this, it is crucial for every person to realize their value and importance in this mission, and that they are a hero in their own life as well as in the lives of others. When we commit to something greater than ourselves, we realize and experience what this truly means.

If more people talk about mBC, as a society, we can save more lives. And it’s important for those with mBC to participate in and lead those conversations. The more opportunities for others to hear from those with mBC, the more others will connect and find resonance. As Jamil explains, “I do think that connection does have to happen where it resonates. And I think that’s with everything in history. When you are living, breathing and, you know, fraternizing with people that are not like yourself, it expands your thoughts, opinions, and understanding.” Many people do not realize that people can die from breast cancer and that with access to appropriate care, people with mBC can live a high quality of life for a long time. Jamil explains that when people connect with her story, this motivates them to learn and advocate for solutions. If we keep the conversation going, this may lead to more investment in funding for research about mBC, which leads to advances that improve diagnosis and treatment for mBC as a chronic disease. As Jamil argues, “Let’s address mBC, so that we can disrupt the entire process and save lives.” 

Every person is touched by breast cancer, whether it is you or someone you know and love. Watch videos and read stories of the My Life is My Legacy campaign to witness how many people—early stagers, those with mBC, caregivers, doctors, and researchers—live their lives as legacies and work for a better future for those living with mBC. Learn how you can do the same. 

This article is a part of the #MyLifeIsMyLegacy Campaign. Learn more here.

Different Diagnoses, A Common Need for Information and Care

Bridging the Gap Between Early-Stagers and Metastatic Breast Cancer

All those diagnosed with any type or stage of breast cancer share similar goals; they want to live and have a great life. Some, such as those diagnosed with mBC, live with chronic disease; and most diagnosed with any type or stage live with some uncertainty about risk and recurrence as well as the need for some treatment and/or maintenance. As Jamil notes, “It’s not like you’re going to be done after you have your initial treatment. You’re in this for the long haul, no matter your stage.”

Based on the most recent CDC data, female breast cancer occurs at the highest rate of any cancer in the United States. In 2017, 250,520 new cases of female breast cancer were reported. Of these, 42,000 women died, giving female breast cancer the second highest rate of cancer deaths in the U.S.. Per 100,000 women, ~126 white women were diagnosed with breast cancer and ~19 died (15%); and ~121 Black women were diagnosed with breast cancer and ~27 died (22%). In the years 2013-2017, the death rate for white women with breast cancer was 19.8 per 100,000 and for Black women, 27.6 per 100,000 (National Cancer Institute).  

Research suggests that of those initially diagnosed with breast cancer, approximately 30% will develop mBC. Though the medical community makes necessary distinctions among type and stage, some within the breast cancer community argue that a stage does not necessarily represent health status. As Jamil notes of having mBC, “I don’t consider myself different from any other early stager” because those in early stages can have or develop mBC and right now, “I’m metastatic but I have no solid tumors. I’m focused on keeping it at bay.” And like some early stagers, Jamil considers herself a survivor. “I’m taking it day by day. If you’re an early stager, you’re also taking it day by day. You’re on your maintenance treatment, but you could have a recurrence or become metastatic. So I don’t believe that there’s any difference.”

All those touched by breast cancer, whatever the type or stage, can benefit from learning about mBC, and in several different ways. 

First, with more information about mBC, you are better able to take care of your health in the short and long term. Those diagnosed with breast cancer can take whatever steps necessary to receive the best possible care, improve quality of life, and extend life. If as an early stager, you learn about mBC, Jamil says, you can know that you can “get treated for that and you can survive.”

Second, with more knowledge about mBC, as well as all types and stages of breast cancer, you are better able to connect, include, and support others. When Nunny was first diagnosed and spoke with other women with mBC, she learned that it “was good to talk about it.” And when Sheila went to a symposium with “other people like me” who had different types and stages, she was comforted by a community who welcomed and included her. “They accepted me as a breast cancer survivor and that was so important to me.” They did not “alienate me because I was stage IV, and I encourage people not to alienate anyone from any stage because we’re all in this together.”

Third, the more you know, the better equipped you are to advocate for your own care as well as for others. Cancer centers and providers should offer all those diagnosed with breast cancer education as a standard part of the process in the beginning and end of every phase of treatment. This would include an explanation of contingencies, options, and instructions for  what to monitor and do over time; as well as how to address questions related to all aspects of health and living, such as what kind of bra to wear, how to approach dating, or how to communicate with family and friends. 

Cancer centers and providers should also offer those with any type or stage of breast cancer access to comprehensive, integrated care, such as nurse and resource navigators; but this does not occur consistently or equitably. With adequate information about options, people are best positioned to advocate for themselves and others. 

When Jamil was not initially provided with a resource navigator, she sought the support of advocacy organizations and “took advantage of every support that was out there.” She found support with nutrition, counseling, and more, which “made me knowledgeable about what to anticipate and how to sustain myself.” As a result, she was able to structure her life, take care of her children, and thrive at work while receiving treatment. As she notes, “This helped me have a better quality of life and better outcome.” And though she is grateful for the support of these organizations, this would not be necessary if providers offered comprehensive support equally to everyone. 

This article is a part of the #MyLifeIsMyLegacy Campaign. Learn more here.

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Join us as we LAUNCH our #KnowMoreDisparities & #PullUpASeat Mini-Symposia, in partnership with GRASP!

Tigerlily Foundation and Guiding Researchers & Advocates to Scientific Partnerships (GRASP) partner to host a bi-monthly mini-symposia to shine a light on the experiences of Black women with breast cancer through two conversations: #KnowMoreDisparities & #PullUpASeat

  • #KnowMoreDisparities: Conversations facilitated ‘for and by’ Black women will create a safe space for honest conversations with Black physicians, medical clinicians and patient experts to discuss their experiences of health inequality, implicit racial bias and lessons learned.
  •  #PullUpASeat: Two weeks after #KnowMoreDisparities we come back together for a #PullUpASeat discussion co-hosted by a Black Keynote physician / clinician and Black patient experts who will facilitate a conversation with non-black medical professionals to shine a light on the experience of black women with breast cancer.

Mission: To leave each participant with actionable next steps that will hold non-black medical professionals accountable and strengthen patient confidence in medical and research institutions. A one-page summary will be shared post-symposia that outline these actionable next steps.
 

Join our first conversations in September on “Addressing Biases in Clinical & Health Care Provider Practices”




For more information about GRASP visit: www.graspcancer.org

Disparities in Clinical Trials: Why you should participate

Less than 5% of all cancer patients are currently enrolled in a clinical trial. Further, even though cancer mortality is higher among minorities, less than 10% of racial and ethnical minorities are enrolled in clinical trials – with minorities being 60% as likely to enroll in a clinical trial compared to white women. The underrepresentation of minorities in clinical trials means that there are few studies that analyze and report safety and efficacy by race or ethnicity. Therefore, it is difficult to know if minority patients tend to have a specific type or subtype of cancer and if they process certain drugs differently.

As a minority, participating in a clinical trial allows the researchers to conduct a study that is more representative of the general population and to gather racial and ethnic data on the disease and treatments that they are studying. Participating in a clinical trial also allows you to have access to the newest treatments and care that are hopefully more effective than the current standard care. In some cases, you could earn money as a volunteer study participant.

Do you know where to find a clinical trial? Here are some resources:

  • Clinicaltrials.gov as almost 8,000 breast cancer clinical trials.
  • Breastcancertrials.org has over 600 breast cancer clinical trials. There are almost 90 trials for early state breast cancer and over 200 trials for advanced breast cancer.
  • CenterWatch has more than 1,000 breast cancer clinical trials. They are all currently recruiting study subjects.
  • AbbVie’s Clinical Trial Database lets you search for trials near you.

Find more information on clinical trials on our website at www.tigerlilyfoundation.org/breast-cancer-toolkit/clinical-trials/

“Why did I become an Advocate?” – Sheila McGlown, Tigerlily MBC ANGEL Advocate

Often times I’m asked, “Why did I become an advocate?”  And often times I ask myself the same question “WHY did I become an advocate?” Proverbs 31:8-9 says “Open your mouth for the mute, for the rights of all the unfortunate.  Open your mouth, judge righteously, and defend the rights of the afflicted and needy. 

            Initially, when I was diagnosed with metastatic breast cancer (MBC) in December of 2009, I had no clue about anything breast cancer.  Even though my mom died of metastatic breast cancer in 2004, I guess I just blocked it out of my mind.  Five years after my mom’s death I was diagnosed with MBC, and I was alone trying to navigate through an unknown world and I had no clue how I would make it.  For nine months I knew of no support groups, any other women, or black women for that matter that was living with MBC.  Those nine months got me thinking, as long as I’m alive NO woman/man should fight breast cancer alone. 

            I learned about racial disparities in the African American community from reading up on breast cancer and the effects it has on my community.  I didn’t know racial disparities existed at first, because I had never experienced it.  I’ve gotten the best quality of care and I have the most amazing medical team.  But the fact is that black women are dying at a faster rate than any other race, and when I found that out, I decided then to use this as my platform.  We have to work together to change this and the only way we can do this is by continuing to lift our voices not just in October but all year round. 

            Change is needed and we can’t enact change until we get to the root of the problem.  We need more African American women to speak up when they feel they haven’t been treated as equal.  Be your own advocate.  If something is wrong don’t stop until someone listens.  Often times African American women are dismissed by doctors and are not taken seriously about their symptoms.  Make doctors listen.  Make doctors hear you.  We are not faking. African American women are worth fighting for too.  We are worth the research and the clinical trials that go into having more efficient and effective medicines so that we can live longer.  Twenty-five percent of African American patients are even offered Herceptin.  Standards of care should be the same for every patient regardless of a person’s race.  This was mind boggling to me because it’s like are we still living in the dark ages where everyone’s lives don’t matter. 

Advocacy for me means lifting my voice and shouting from the mountain tops.  Being an integral part of the Tigerlily Foundation, and the Fireside Chat being held at the San Antonio Breast Cancer Symposium in December 2019 is very important to me because we are raising our voices against racial disparities.  There will be black women representing 22 cities in which there are the largest number of women of color being diagnosed with breast cancer.  Talk about representation!  A disparity is defined as a great difference.  It’s time we continue to recognize racial disparities exist and as a community we need to work together to end this great difference.  Tigerlily is doing just that – working together with organizations to bring awareness so that black women aren’t forgotten.  I want breast cancer organizations to establish a dialog with MBC patients to find out the needs of an underserved community.   I want African American women to know there are women who look like them out there advocating for them and lifting our voices.  I want African American women to know they are not alone.  We see the statistics and we hear your silent cries and we are working diligently to change those statistics.  By participating in the Fireside Chat, I am able to lift my voice and I able to make them hear me.  I want them to see my cries, to feel my soul and to feel my pain.  We can continue to talk about it, but are we really taking a stance against racial disparities.  Do we have both feet on the ground ready to run the race and see it through?  My legacy is to change the thoughts and minds of the breast cancer community.  I often said “Let me have a seat at the table”.  After years of having seats at tables where people are listening but aren’t hearing me, I decided I’ll build my own table and I’ll invite you to my table, and I do have extra folding chairs. 

Written By: Sheila McGlown, Tigerlily Foundation MBC ANGEL Advocate

Sheila McGlown is one of 11 MBC Angel Advocate attending Tigerlily Foundation’s Young Women’s Metastatic Breast Cancer Disparities Fireside Chat at the 2019 San Antonio Breast Cancer Symposium (SABCS) on the morning of December 10. The event is designed to foster transformational dialogue engaging young women in the African-American community from 22 cities identified as locations having a high rate of breast cancer diagnosis among women of color.

Clinical Trials and the African American Community: Why we need to participate?

Taking part in a clinical trial involves trust.  Unable to take comfort in substantiated data and results, the need to trust the medical team administrating the trial is critical.

That trust is what helped keep, Thomas Goode an African American, alive when he was diagnosed with multiple myeloma at age 34. Goode participated in clinical trials where he received access to experimental drug cocktails.  He said of the trials, which he feels were key to his recovery, “I never knew anything about clinical trials, but a lot of my trust and faith was in the doctor,” he said. “I trust you, doctor, whatever you say.’”

For many African Americans a lingering distrust of medical experimentation is based on a history of unscrupulous clinical trials. Angela Marshall, an internal medicine doctor and board member of Black Women’s Health Imperative, said she sees a “lack of excitement among minority communities for clinical trials, coming from a mistrust of the medical community.”

Many black patients often cite the infamous Tuskegee study, conducted from 1932 to 1972 by the U.S. Public Health Service, in which researchers knowingly withheld treatment from African American sharecroppers with syphilis in order to study the progression of the disease.  Other high-profile examples include Henrietta Lacks, a poor black tobacco farmer whose cells were taken without her knowledge in 1951. Henrietta’s cells became one of the most important tools in medicine and immortalized today are called the “HELA” cells.

Nearly every advance in cancer today was first evaluated in a clinic trial.  To understand how a smaller minority group responds to a drug, researchers might have to enrol more patients than what would be a nationally representative sample, but African Americans are massively under-represented in trials.  Statistically only 1%-3% of African American women participate in clinical trials even though their risk of getting cancer is the same or higher than other groups.  Clinical trials should reflect the population it will serve. 

My own journey as part of a clinical trial started after experiencing a burning sensation in my chest when I sneezed. I had no lump and no feeling that anything was wrong but after a mammogram and several other scans I was diagnosed with Stage IV Breast Cancer – which had already spread to my liver and ribs – at the age of 43.

Since my diagnosis I have received six different treatment plans and my doctor has offered me many different treatment options.  I have been lucky to benefit form a strong physician/patient relationship and as a result I learned about an ER+/HER2+ clinical trial that other patients were doing well with.

My life expectancy was 3-5 years when I was diagnosed with MBC.  Because I was given the opportunity to be included in the tireless research to find a cure, I am still here nine years after my initial diagnosis.  I want a cure.  I want to see increased financial resource being channelled into research and I don’t want my daughter to ever have to worry about this disease in her lifetime.

It is clear that some serious trust building initiatives need to happen so that there is a marked increase in the numbers of African Americans overcoming long-seated trust issues and making the decision to take part in clinic trials.  Even though there is a recognized research need for a more diverse ethnic sample in trials, opportunities to take part in life saving experimentation are withheld from desperately ill black patients.  African American patients are more likely than white people to have other conditions which could complicate research results and trials often preclude patients with other conditions, seeking participants with the least amount of complications.

I decided to join a clinical trial because I think it’s important for the African American community to see how vital clinical trials are to medical advancement. Without investment into improving trust issues, exclusion and other barriers to the inclusion of African Americans such as finances, cultural differences and transport there will continue to be a lack of diversity in clinic trials and a real risk of drugs coming onto the market before they have been properly tested with minority groups.

GENETICS, GENOMICS, & PERSONALIZED MEDICINE: A PRIMER (1 of 4)

     There is no question that genetics has become a hot topic in medicine. It seems that every week there is an article about a new genetic test, or another person throwing around the term “inherited risk”. These terms can seem scary at first, but with a bit of brushing up, you can use them to your advantage in managing your healthcare.

      To help along the way, Tigerlily is bringing the basics right to your laptop. We’ve partnered with Genomic Health to offer a 5-part blog explaining the ins and outs of breast cancer genetics and genomics. Read on for more information about inherited risk, the different types of tests offered and how they can help with treatment, and more.

PART I: GENETICS, GENOMICS, & PERSONALIZED MEDICINE: A PRIMER

The terms “genetics” and “genomics” often go together, but they are not the same.

Genetics looks at the inheritance of certain genes from one generation to the next—specific genes that serve specific functions. (One common example that relates to breast cancer is the BRCA gene, which normally functions to create a protein that fixes changes in the cells’ DNA. When a mutation occurs, this protein may not be produced correctly, affecting its ability to clean up your DNA properly.) The field of genetics focuses on how and whether or not a particular form of a gene has been passed down.

Genomics looks at the interplay between all of an individual’s genes, and studies how the interaction of those genes with each other, as well as with the person’s unique environment, can affect his or her health. While genetics can tell a person whether or not a BRCA mutation has been inherited, genomics can take into account other factors which would reveal a tumor’s predicted response to a particular treatment, or how likely it is to spread.

As a result of advances in both of these fields, the broader field of personalized (or precision) medicine has begun to take shape. Personalized medicine allows a healthcare team to focus on a patient’s own genomic makeup, lifestyle, and the specific genetic makeup of the patient’s tumor cells, in order to develop a treatment plan suited to that patient. Through this approach, they can ensure that the treatment is as targeted as possible. 

There are many applications of genetics and genomics in personalized medicine. For example, a doctor may recommend genetic testing. Genetic testing falls under the umbrella of “genetics”, and can reveal whether or not a person has inherited a specific mutation, for a specific gene—such as BRCA.

A doctor may also use genetic results to determine gene-drug interaction–how a particular patient’s genes will influence his or her response to a given medication.

Finally, a doctor may use tumor sequencing. Tumor sequencing looks at all of the genes within the tumor itself, helping to determine whether a particular course of treatment will work on that tumor. There may be changes in the tumor DNA that will render a particular treatment ineffective; tumor sequencing can help a doctor to know if such changes have taken place and an alternative treatment should be used instead.   

WHAT ARE SOME FACTORS CONSIDERED IN PERSONALIZED MEDICINE?

When taking a personalized medicine approach, a doctor may look at the characteristics of the patient’s particular tumor in order to treat it in the most accurate way possible. Some of these characteristics include the size of the tumor, the type of tumor (either non-invasive, meaning it is contained, or invasive), and the grade of the tumor (which refers to how abnormal the cancer cells appear, as well as how quickly they grow). They can also look at more specific characteristics of the tumor, such as hormone receptor status (which tells the doctor whether or not the hormones estrogen or progesterone are stimulating the tumor to grow), and HER-2 receptor status (which tells the doctor whether or not a protein called human epidermal receptor factor is stimulating the tumor to grow). Most likely, they will also take into account any genetic mutations (discussed in our next post), as well as the patient’s lifestyle, which may be exacerbating the risk for breast cancer.

Join us in our next post to find out more about breast cancer screening and genetic testing.

New advances in breast cancer research and treatment

Tigerlily is excited to share new advances in breast cancer research and treatment that can benefit our patient community. We hope these updates will help keep you on top of the latest developments, inform your conversations with your doctor, and empower you in your healthcare decisions.

**NOTE: These posts are intended for informational purposes only. ALWAYS discuss with your physician before making any treatment decisions.

In this post, we discuss a new study1 that suggests a potential option for preventing further metastasis of breast cancer that has spread to the bone.

The study, published in Breast Cancer Research on Nov. 20, focused on circulating tumor cells, or CTCs. Circulating tumor cells are cancerous cells that detach from tumors and move into the blood. (In some cases, they can lead to the development of metastasized tumors in new locations in the body.2) Fewer than 50% of breast cancer patients display circulating tumor cells, but for those who do, CTCs are generally considered dangerous, and scientists have been at a loss as to how to predict whether or when a patient may produce them.

Based on this particular study, however, it appears that there is one particular factor which may help prevent CTCs from the bone. When the researchers looked at patients whose cancer had already metastasized to the bone, they found that those who had received the drug denosumab were less likely to have circulating tumor cells (CTCs) in their blood. This finding suggests that denosumab may help prevent the cancer from further metastasizing beyond the bone.

In patients with breast cancer, denosumab is normally used to counteract bone loss from cancer therapy, or to protect against bone damage when the cancer has moved into the bone.3 The scientists behind the recent study hypothesized that, since denosumab helps prevent the bone from breaking down, it also prevents the opportunity for cancer cells located in the bone to break off and move into the blood. Another theory is that the denosumab may have an effect on the tumor cells themselves. Importantly, the researchers noted that the same anti-CTC benefit is not seen with the drug bisphosphonate.

Although further research is needed to determine the effectiveness of denosumab in this new capacity, it may prove to be a useful preventative option in keeping metastasized breast cancer from spreading beyond the bones.

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Sources:

[1] Nicola Aceto, Catharina Balmelli, Francesc Castro-Giner, Cinzia Donato, Sofia Gkountela, Viola Heinzelmann-Schwarz, Ilona Krol, Christian Kurzeder, Julia Landin, Alexandra Malinovska, Christoph Rochlitz, Ramona Scherrer, Barbara Maria Szczerba, Marcus Vetter, Walter Paul Weber, and Alfred Zippelius. “Denosumab Treatment is Associated with the Absence of Circulating Tumor Cells in Patients with Breast Cancer”, Breast Cancer Research 20:141 (November 2018), https://doi.org/10.1186/s13058-018-1067-y

[2] Seungpyo Hong, Daniel P. Lindsay, Dominic H. Moon, and Andrew Z. Wang, “Clinical Indications for, and the Future of, Circulating Tumor Cells”, Advanced Drug Delivery Reviews 125 (February 2018), 143-144, https://doi.org/10.1016/j.addr.2018.04.002

[3] “Denosumab (Subcutaneous Route)”, Mayo Clinic, accessed November 24, 2018, https://www.mayoclinic.org/drugs-supplements/denosumab-subcutaneous-route/description/drg-20074315

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In this post, we share an article1 on an up-and-coming option for breast reconstruction surgery that could significantly reduce negative aftereffects for patients.

Traditionally, breast reconstruction surgery has been performed by cutting into the chest’s pectoralis muscle and inserting implants into a space made beneath it. Because the muscle is being damaged and overextended, patients often experience pain after having this type of breast reconstruction surgery, and do not have the same amount of strength in the muscle that they had had before. Additionally, with this method, the implants may become displaced whenever the muscle moves, since they are located right below it.

Now, however, an alternative technique is offering patients an improved experience. Prepectoral reconstruction is a different method of breast reconstruction surgery, wherein the implants are inserted right beneath the skin instead of beneath the muscle. A material known as a biologic mesh is also placed around the implant, below the skin, to prevent infection or scar tissue. In a prepectoral reconstruction, the pectoralis muscle never has to be cut, so patients can avoid the resulting pain and unwanted implant movement that go along with the traditional method.

While the new prepectoral reconstruction method is not offered everywhere, it offers patients the possibility of a much more comfortable outcome than traditional breast reconstruction surgery, and may be a worthwhile option for some women to explore.

Source:

[1] Kathleen Masterson, “New Method of Breast Reconstruction May Reduce Pain for Some Cancer Survivors”, UCSF News Center, November 20, 2018, https://www.ucsf.edu/news/2018/11/412376/new-method-breast-reconstruction-may-reduce-pain-some-cancer-survivors

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