info@tigerlilyfoundation.org

Menu

Living with MBC

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.” 

Metastatic Bone Disease (MBD) and Breast Cancer

What is Metastatic Bone Disease?

The bones are one of the most common sites for breast cancer to spread, and when the cancer spreads to the bones, it’s called Metastatic Bone Disease (MBD), or bone metastases.3 Although cancer has spread to the bones, it is not considered bone cancer since the cancer didn’t originate in the bones. Breast cancer can spread to any bone, but the most common sites are the ribs, spine, pelvis, and long bones in the arms and legs.4

MBD is considered a common, but very serious complication of breast cancer that puts patients at risk for skeletal complications called skeletal-related events (SREs). These events can reduce quality of life and increase medical costs and risk of death.

What are the Risk Factors for MBD? Researchers have discovered risk factors that contribute to MBD, including:

  • Gender: MBD occurs in both men and women but is particularly common in women with breast cancer.
  • Age: MBD does not typically occur until after the age of 40.
  • Cancer History: A person living with cancer, or with a family history of cancer, is at higher risk for developing MBD. However, MBD can be diagnosed in people without personal or familial history of cancer.

Symptoms of MBD

People who have MBD often experience pain as their first symptom, but there are other associated symptoms, including:

  • Fractures (pathological bone fractures): Weakened bones can cause fractures resulting from a fall or injury, but also from everyday activities. Pathological bone fractures, however, are caused by disease. Typically occurring in the long bones of the arms and legs, they can cause severe pain.
  • Constipation, nausea, loss of appetite: When calcium from the bones is released into the bloodstream, it can cause constipation, nausea, loss of appetite, confused or altered mental state and severe thirst.9 High blood calcium levels, also called hypercalcemia, can increase urine production, leading to dehydration, weakness and fatigue.6
  • Spinal cord compression: Increased growth of cancer in the spine can press against the spinal cord and cause compression of the nerves, leading to numbness and weakness in the lower area of the body, pain or stiffness in the neck, back or lower back, paralysis, trouble with urinating and a lack of bowel movements.

Diagnosing MBD

Depending on the location and severity of the pain, MBD can be diagnosed by:

  • X-Ray or Radiography
  • Bone scans
  • Bone biopsies
  • CT (computer tomography) scans
  • MRI (magnetic resonance imaging)
  • PET (positron emission tomography)
  • Blood tests measuring elevated levels of alkaline phosphatase (an enzyme that originates in the bone) and calcium levels to confirm hypercalcemia

Treatment Options for MBD6

If you are diagnosed with MBD, the primary goal of treatment is preventing SRE’s as they can significantly impact quality of life. Treatment options that are clinically proven include:

  • Bone therapies, which involve using a bone-targeting agent, a class of drugs that prevent the loss of bone density by reducing the turnover of bone. There are various types of agents or medications (e.g. pills, intravenously) that can reduce fractures and slow the spread of cancer, which is dependent on the individual disease.12
  • Anti-cancer therapies, such as chemotherapy, immunotherapy and hormone therapy, are systemic treatments that affect the whole body. While they are not specifically aimed at MBD, they may be used as a part of a treatment plan.
  • Local treatments can be targeted to one specific area of the body. These types of local treatments can include:
  • Radiation, a nonsurgical option which kills the cancer cells, helps to relieve pain, slow tumor growth and prevent bone breakage.
  • Surgery, which is performed to remove the tumor and fix the broken or weakened bone in place using instruments such as wires, plates, rods or bone cement, which is used to strengthen or stabilize the bone.


MBD Infographic – Click here to download

References:

  1. Coleman, Robert. Skeletal Complications of Malignancy. Suppl Cancer. American Cancer Society Journal. https://acsjournals.onlinelibrary.wiley.com/doi/pdf/10.1002/%28SICI%291097-0142%2819971015%2980%3A8%2B%3C1588%3A%3AAID-CNCR9%3E3.0.CO%3B2-G. Accessed October 19, 2020.
  2. National Institutes of Health. Osteoporosis and African American Women. https://www.bones.nih.gov/health-info/bone/osteoporosis/background/african-american-women. Accessed October 19, 2020.
  3. Susan G Komen. Bone Metastases and Metastatic Breast Cancer. https://ww5.komen.org/BreastCancer/BoneMetastasesAndMetastaticBC.html. Accessed October 19, 2020.
  4. BreastCancer.org. Bone Metastasis: Symptoms and Diagnosis. https://www.breastcancer.org/symptoms/types/recur_metast/metastic/bone. Accessed October 19, 2020.
  5. So, Alan et al. Management of skeletal-related events in patients with advanced prostate cancer and bone metastases: Incorporating new agents into clinical practice. Can Urol Assoc J. 2012 Dec; 6(6): 465–470. PMID: 23282666.
  6. American Academy of Orthapaedic Surgeons. OrthoInfo: Metastatic Bone Disease. https://orthoinfo.aaos.org/en/diseases–conditions/metastatic-bone-disease/ Accessed October 19, 2020.
  7. Wisanuyotin, T et al. Prognostic and risk factors in patients with metastatic bone disease of an upper extremity. Journal of Bone Oncology. 2018 Nov; (13): 71-75. https://doi.org/10.1016/j.jbo.2018.09.007.
  8. Janjan, Nora et al. Pathological Fracture. Science Direct. https://www.sciencedirect.com/topics/medicine-and-dentistry/pathologic-fracture. Accessed October 19, 2020.
  9. American Cancer Society. Bone Metastases. https://www.cancer.org/treatment/understanding-your-diagnosis/advanced-cancer/bone-metastases.html. Accessed October 6, 2020.
  10. John Hopkins Medicine. Conditions and Diseases: Spinal Cord Compression. https://www.hopkinsmedicine.org/health/conditions-and-diseases/spinal-cord-compression. Accessed October 6, 2020.
  11. Gralow, Julie et al. National Comprehensive Cancer Network. NCCN Task Force Report: Bone Health in Cancer Care. Journal of National Comprehensive Care Network. https://www.nccn.org/JNCCN/PDF/2009_Bone_Health_TF.pdf. Accessed October 6, 2020.
  12. Mayo Clinic. Osteoporosis treatment: Medications Can Help. https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869. Accessed October 6, 2020.

Putting the Power in Hands of the Underserved

To recruit Black women in clinical trials, we need to educate communities and say, okay, we know about the Tuskegee project and we can add a lot about the different projects. But there are things in place that hopefully prevent hospitals, oncologists, and researchers from having that same history. -Sheila Marie McGlown

Nunny Keyla Reece was diagnosed with ER/PR and HER2 metastatic breast cancer in 2017.

After finding a lump in her breast in 2015, and receiving a mammogram, the radiologist told Nunny it was benign fatty tissue and to return if she noticed any changes. She was 37 at the time, with no history of breast cancer in her family. In 2017, she started to have severe pain in her back and at the same time, she found a new lump under her arm. At 39, she was diagnosed with metastatic breast cancer (mbC). “All I could think about,” she says, “was my husband and children.”

Nunny began to attend conferences to educate herself. She also started sharing her own story to educate her community. When she was first diagnosed, she felt alone. This was because at first she did not encounter other Black women with mBC. But according to Nunny, the problem runs deeper than that. Black women do not see Black women included in commercials or magazines, at conferences or in brochures. For this reason, “they think mBC is only a white woman disease. This is unacceptable.” The lack of representation in media and in the medical community’s outward facing educational materials leads to disparities in prevention and treatment. And it reflects the lack of inclusion of Black women in research and the development of medical advancements. 

Many Black women also lack equal access to care and treatment that can improve quality of life and extend life. Nunny has experienced this firsthand in the system and in her relationships with medical professionals, starting with the radiologist’s incorrect diagnosis in 2015, and extending to relationships with her physicians. 

“You want to trust your physician,” Nunny Keyla Reece says, “whether you’re Black or white.” But racism exists everywhere: work, school, and the doctor’s office. And when living with mBC, it’s hard if you can’t get the care you need. In the past, she noticed that white friends received information about chemotherapy or clinical trials. When Nunny asked about these options, physicians would tell her, “You don’t have anything to worry about.” And they did not listen and respond to her concerns. When Nunny complained of having headaches for the first time, her physician said it was probably allergies. She had to argue for tests. “To completely shut someone down, especially when you are already in stage IV,” Nunny says, “Why would someone do that? It’s not putting my care first.” When she received MRI results showing a brain mass, Nunny was glad she spoke up and caught it in time. 

When Nunny heard other Black women speak about similar experiences, she realized it happened to them, too. “Sometimes the care level is just different,” she explains. She does not want a doctor who will not give it their all, who will “give up before I’m giving up.” So far she has shifted through four physicians, seeking what she needs: a physician who cares about her as a human being and will try to build a bridge to mutual understanding, someone who will open a space to learn about her and ask the right questions. She needs a physician who will explain what she should know and do; and answer her questions fully. Nunny will do whatever it takes and she expects the same from her physicians.

Bio:
Nunny Keyla Reece, a former certified medical assistant in pain management, is an Angel Advocate with the Tigerlily Foundation and works to reduce racial health disparities. She believes passionately that it is important for people with mBC to be able to express themselves freely in the support of a community, and advocate for what they need in the medical community, which includes both empathy and access to the best care. Nunny works to pay forward the support she has received, and to love life with her family and broader community.

Being Catapulted into a New Frontier: Moving from Challenge to Catalyst


This video has been brought to you by the #MyLifeIsMyLegacy Campaign

“My story with breast cancer can be seen as tragic. But instead, I want people to see it as hopeful and inspiring. I’m still a dynamic, loving 37 year-old woman. And at every moment since my diagnosis, I am still LIVING. Cancer is part of my life but it doesn’t define me.” -Julia Maues

Cancer is traumatic, painful, catastrophic, and life-altering. The trauma of breast cancer occurs not only from the cancer itself, but also from the treatment and from navigating the medical system. It can also be traumatic to witness suffering and experience the loss of others. Along the way, some experiences may heighten the trauma. Other experiences, like having community support, or a spiritual awakening, can strengthen us, give us a new perspective, and even motivate us to take action.

When you receive an initial diagnosis of cancer, you may experience a range of emotions, including shock, fear, grief, confusion, exhaustion, desperation, hopelessness, anger, rage, or doubt. When Nunny Keyla Reece first found out she has metastatic breast cancer (mBC), she woke up every morning wondering, “Am I going to die today . . . ?” She felt fear and often cried when she felt anything new happening with her body. She would think, “Is this it?” The unknown worsened her fear because she didn’t understand what was happening. She had anxiety attacks for the first time in her life. 

Similarly, Jamil Rivers describes her first moments of mBC as being “catapulted into a whole new frontier of everything.” She felt afraid that she would not be able to see her sons grow up or grow old with her husband. Yet no state is permanent. Over time, what became most traumatic for Jamil was the loss of those with whom she developed close relationships. Of those she lost, Jamil explains, “They were diagnosed before me and they’re just as passionate. They tried to push through and they ran out of time. Now I have to keep that work going. I’m looking at my time that I have left and trying to make the most of it.”

Your feelings might also shift, day to day and over time. Sheila Marie McGlown explains that when she was diagnosed with mBC at 43, she saw her life in “fast forward; I thought about when I was born to up to the age of 43.” She thought, “Where did it go?” She struggled to accept the cancer until one one morning when she woke up and noticed her hair on the bed. In that moment, she experienced a radical shift. “I have no control over this,” she thought, and that was when she accepted the it. After learning of estimated survival rates, Sheila made a bucket list so that she could make every moment count. Then after year 5, she thought, “hhmm. I’m not dead yet.” And after year 6, she thought, “hhmm.” And a decade later, she thinks, ”I’M STILL HERE.” 

Eventually, you might move from the initial shock to a place of acceptance where the unexpected can occur. Alongside the trauma of cancer, many develop what is called posttraumatic growth, which is personal development or “positive change” that results from “struggle with a major life crisis or a traumatic event.” This does not happen overnight; it’s gradual and happens in fits and starts. You may experience moments of this right now; it’s also okay to not feel this way at all. 

If and when you experience posttraumatic growth, you may develop a sense that the struggle gives you newfound purpose or opportunities. You might experience a newfound closeness with others or connection to people who suffer from cancer or other traumas. You may develop an awareness of your own strength and “appreciation for life in general.” You may also develop a deepening of spiritual life and a shift in priorities  (Posttraumatic Growth Research Group). As Nunny explains, “I didn’t want to live my life being scared, so I changed my whole life. I started deepening my spiritual relationship with God and without that,  it would have been so hard for me.”

Julia Maues was diagnosed with breast cancer in 2013, while pregnant. “To my surprise,” she says, “chemo during pregnancy is the standard of care. I delivered a healthy baby boy with a head full of hair while I had no hair at all.” After her son was born, Julia did tests she could not do while pregnant, and learned that the cancer had spread to her brain, liver, and bones. After trying different drugs and finding the right one, the cancer started to respond to the therapy. Julia continues to experience many setbacks. As she explains, “Most drugs don’t penetrate the brain, many drugs harm the heart, the side effects can be debilitating, and my illness has taken a huge emotional toll on me and my loved ones.” But she still expresses the most authentic parts of herself: “I’m still a dynamic, loving 375-year-old woman. And at every moment since my diagnosis, I am still LIVING. Cancer is part of my life but it doesn’t define me.”

Julia’s experience also opened her eyes to inequities in breast cancer research and treatment. “Did you know that the share of the money obtained in pink campaigns that goes to research on metastatic breast cancer is negligible compared to where the rest of the money goes? Or that breast cancer mortality is 40 percent higher for Black women? Metastatic breast cancer is the only breast cancer that kills and research is the only effort that truly helps patients do what we want to do – LIVE! That is not pink!”

Since developing this awareness, Julia has become involved in advocacy, which has been rewarding. She says that she enjoys connecting with researchers and “showing them the side of breast cancer they often can only imagine – the life of a patient.” After recently collaborating with a researcher, he told her, “‘Regardless of whether we meet again, I want you to know I have been moved by your profound fighting spirit and it is making me redouble my efforts within my research.’” During her lifetime, Julia’s goal, like that of so many advocates with mBC, is “to make an impact in the lives of others dealing with this disease.”

Jamil Rivers -Putting the Power in the Hands of Black Women

This video has been brought to you by the #MyLifeIsMyLegacy Campaign

Jamil Rivers was diagnosed with mBC in 2018 at the age of 39. As a mother of three, caregiver, and working professional, Jamil has a fierce determination to survive. She has learned a lot about life and herself through her struggles with mBC. For one thing, she knows that she’s strong and can make a positive difference. In her first year of chemotherapy, Jamil worked her first year of a new job. Worried about the possibility of losing her job (including income and benefits), she did not disclose her diagnosis at work. She shaved and tattooed her eyebrows, wore a wig, and went to work and chemotherapy every day. Fortunately for Jamil, her treatments were showing positive results and her tumors were shrinking. Now on an oral treatment, she is focused on living her best life and leading as an advocate for other Black women who may face inequalities and disparities in the medical system. Before her cancer diagnosis, she says, “I never questioned God’s path for me.” Yet when she received her diagnosis, it immediately followed her husband’s recent recovery from cancer. And so at first, she thought, “My kids already have one parent with cancer. Now you’re going to give them two parents with cancer?” But eventually, she realized, “Well, why not me. Cancer focuses your life. It clears out everything that’s not important. It educates you about who you are. I’m stronger than what I ever believed possible and I have accomplished more than I ever thought possible.” 

In response to mBC, Jamil became motivated to survive for her family and become an advocate for change. Jamil believes that the most violent aspect of cancer is the unequal medical system and unjust racial health disparities that prohibit treatment and worsen cancer outcomes for many Black women. This is the most violent aspect of cancer because of Black women’s vulnerability to “a system with unconscious bias and structural racism.” This bias can impact care with devastating effects. But if Jamil can make a difference in “penetrating people’s thoughts, emotions, and motivations in order for us to really get to the crux of the problem, then, okay.” 

In addition to her own work, Jamil has also seen growth in her children. She explains that they also express learning and becoming motivated from their parents’ experiences with cancer. “I see my kids growing into these empathetic, compassionate, intelligent, thoughtful, curious people,” she says, “and they’re amazing human beings.” Of cancer, Jamil says, “I never believed that cancer is a gift,” but it’s a crucial “part of my story.” Even though it is horrible and scary, Jamil accepts it. “I’m still here,” she says. “I’m still breathing. So I’m going to live my life and do what I can with this.”

Bio:

Jamil Rivers, who was raised in New Jersey and now lives in suburban Philly, is married to the love of her life and has three amazing boys. Jamil and her husband are both cancer survivors and have both been caregivers and patients at different times.  Jamil is close to her family, sisters, and girlfriends, loves crossword puzzles, and describes herself as a foodie. She also works full time as Chief Financial Officer of Education Works; is Board President of Metavivor Research and Support, Inc.; a Board member of Living Beyond Breast Cancer; and an Angel Advocate with the Tigerlily Foundation. Jamil also founded a breast cancer education and navigation organization called The Chrysalis Initiative. 

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.

Click here for next article in the series

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

Coping with MBC during the Covid-19 Pandemic

As I enter the second week of the corona virus/covid-19, the world around me is growing more isolated by the day. I am a 42 year old MBC patient in active treatment. When I started this life-saving treatment I knew all of the side-effects that came with chemotherapy. It seemed like the risks were worth it to remain alive. Most cancer patients have to learn to be ok with being at risk for all kinds things. Being immune compromised is the first thing we are told about and have to learn to manage all interactions with the outside world. Any germ or cold that is mild in the population can be severe or deadly to cancer patients.

So here I am in the midst of balancing my desire to be normal with the additional constraints COVID-19 has placed on my life and trying not to go crazy inside my house. The spring and summer are my peak times to be outside; I get so much joy in the sun and any activity that gets me out the house. Being inside my house 22 hours a day is getting old already. My normal has been to workout a minimum of three times a week. I love the gym; I can lose myself in pushing my body to its physical limits. I can’t control my diagnosis but I sure can control the weights or cardio equipment.

As more information was given about the transmission of COVID-19 and the at risk populations were identified, I had to heed common sense, medical professionals and the advice of friends. I decided to practice social distancing which majorly disrupted my gym routine. I started working out every other day as was my routine but as each day passed I was getting more anxious and restless. I tried to watch TV or read but I just couldn’t focus. Working out usually brings me so much joy that I thought “hmm… workout more”. Every other day workouts became daily workouts sometime twice a day workouts. Finally, I started to feel better.

Studies do show that being physically active helps to mitigate some of the side effects of treatment and I have found this to be true for me both during my early stage diagnosis and now as an MBC patient. Every person is different so please check with your physician before starting any workout plan. Another benefit of working out is that it also releases endorphins in the body. Endorphins are hormones that relieve stress and pain. I don’t know about you but I will take all the natural happiness I can get.

While it’s still early in the Covid-19 pandemic, making sure I incorporate some type of physical activity every day is the best coping mechanism for me. Be safe and WASH YOUR HANDS!!!

Written by Chawnte’ Randall, Tigerlily MBC Disparities ANGEL Advocate

#StayHome with Shonte Drakeford, MBC ANGEL Advocate

During this time of uncertainty with the current COVID-19 outbreak, we want to remind you that we at Tigerlily Foundation care about you and your families physical, emotional, mental and spiritual health. Our goal is to offer you information, virtually, that will help you better understand breast cancer, to know rights as a patient and to learn how to get more involved in using you time and voices to make an impact.

As a breast cancer patient, you are among those who are at high risk of serious illness from COVID-19 because your immune system may have been weakened by cancer and its treatments such as immunotherapy and chemotherapy. Further, as a metastatic breast cancer patient whose cancer has spread to the lungs, you can experience significant complications with COVID-19, as this will be an additional stress for your already vulnerable lung.

Another way the COVID-19 pandemic may impact you is that some hospitals and healthcare facilities are delaying or cancelling procedures that are not urgent, emergencies or life-threatening. As such, your cancer screening, surgery or treatment may be rescheduled or delayed. If this is happening to you, know that you are not alone. Speak with your healthcare team about the best way to proceed with your care in this challenging situation.

We are proud of our ANGEL Advocates who are leading through example as we mobilize nationally and globally to #StayHome. MBC ANGEL Advocate Shonte Drakeford took the time to share how she is moving through this COVID.

Here is what she is up to:

Doing virtual workouts with my trainer, cleaning the house, playing with my dogs, tackling tasks I need to complete, chatting with all my friends on Marco Polo app. Gardening about to build my grow beds, spending time with my chickens, eating!!! Walking outside because it’s getting warmer now, playing video games, binging TV shows, listening to music!! Maybe this weekend I’ll clean my car. Oh so many things.

I am a Nurse Practitioner so I am working but since I’m high risk I’m doing telemedicine, I have treatment in two weeks so we shall see how that goes.

All besides freaking out, I’m informed and sane. Can’t worry about things I cannot control…just like the Cancer I have. Still enjoying my life, just another modification to which how’s it done.

-MBC ANGEL Advocate Shonte Drakeford

We encourage our breast cancer community to #StayHome and to only go out for essentials, or if available have a caregiver help with buying groceries, picking up medicine and other essential goods.

Currently, there are no specific precautions to prevent the spread of COVID-19 among people with cancer or their caregivers. However, to avoid being exposed to the coronavirus, it is recommended that everyone:

· Avoid close contact with people who are sick.

· Avoid touching your eyes, nose, and mouth.

· Stay home and practice social distancing.

· Cover your cough or sneeze with a tissue, then throw the tissue in the trash.

· Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.

· Wash your hands often with soap and water for at least 20 seconds.

The Center for Disease Control (CDC) has the latest information on the coronavirus on their website.

Load More