August 2018 Newsletter - Zero Breast Cancer

Cancer in public or cancer in private?

From the ED's Desk

Dear Reader,

You receive a breast cancer diagnosis. Who do you tell? When? How? What details do you share or not share? I very much hope this remains a rhetorical exercise for most people reading this newsletter. I am also well aware that you may be one of our readers that has already had to navigate these questions for yourself. When you reflect back on that experience what comes up for you? Would you do anything differently with the benefit of 20:20 hindsight?

If you are female and you are getting older, then your two biggest risk factors for breast cancer are in play so whilst this is a difficult topic it might be one you want to reflect on - the median age for a breast cancer diagnosis is 62! Sadly we all know someone who has been diagnosed with breast cancer and our empathy matters!

When I was growing up – and even in to my early adult years in the 1980s - people rarely even spoke the words "breast cancer" at all. Sometimes I would be told in very hushed tones that so and so had ‘The big C’. It took a while to pluck up the courage to ask what that was.

A high school friend of mine lost her mother to liver cancer. I subsequently learned that my friend was never told what was making her Mom sick – even though she was extremely thin, very jaundiced and in tremendous pain. Years later my friend told me that her mother had never been told of her diagnosis either. Hard to imagine today! In 2018 here in the USA you will almost certainly be told your diagnosis if it is discovered that you have breast cancer (or any other kind of cancer for that matter).

I don’t think it’s a sweeping generalization to say receiving a cancer diagnosis is scary and disorientating for anyone. Why me? Did I do something wrong? Is it my fault? Am I going to die? If you talk about breast cancer everyday – as we do here at Zero Breast Cancer – then the conversations become factual and without emotion or judgement and we forget that it's just not necessarily like that for many of you. Even when you are somewhat informed about possible inherited breast cancer risk in your family and breast cancer incidence generally this is likely to be a loaded, not a neutral, topic.

If you are suddenly thrust – always unwillingly – into the middle of breast cancer disease you may learn a lot about yourself that you were not fully conscious of. And others around you learn new things about you they may not have known. It can be a very vulnerable time that comes with the potential for significant loss of your sense of control over your day to day life, family and community relations, professional standing and income earning potential not to mention your narrative and your independence.

Even though it’s been a few years since Joan Lunden went public with her diagnosis we thought reviewing her book would still be relevant. Indeed her story delves into what it means to be a public figure dealing with breast cancer – a story of teaching others and learning a lot about yourself. Please see Book Review #19 below.

Also in this edition of the ZBC monthly newsletter is a report from the National Latino Cancer Conference as promised, a reminder about the Dipsea Hike - just three weeks away now - and the penultimate in the series of Spotlight on the ZBC Board.

If you are interested in some additional reading you might like to check out these three reports;

The first was shared with ZBC by one of the study authors and a ZBC supporter, William H. Goodson III, CPMC Medical Center Research Institute. Dr. Goodson and his fellow researchers have been studying the potential compounding effects of chemicals known to be associated with breast cancer risk. Previous studies have isolated individual compounds. The researchers are concerned that this approach may lead to an underestimation of risk; in real life humans are exposed to a cocktail of chemicals - not just one at a time.

"As a continuous source of hormonal stimulation, environmentally ubiquitous estrogenic chemicals, ie, xenoestrogens (XEs), are a potential risk factor for breast carcinogenesis. Given their wide distribution in the environment and the fact that bisphenol-A (BPA), methylparaben (MP), and perfluorooctanoic acid (PFOA) are uniformly detected in unselected body fluid samples, it must be assumed that humans are simultaneously exposed to these chemicals almost daily" - quoted from the Abstract of the study A Ternary Mixture of Common Chemicals Perturbs Benign Human Breast Epithelial Cells More Than the Same Chemicals Do Individually published in Toxicology Sciences in May 2018. . You can read the full report here.

The second is a piece that Catherine Thomsen, Program Director at ZBC, came across that raises a potentially controversial topic; the implications for breast cancer patients who choose alternative therapies instead of conventional ones. The concern is that this topic could be fraught with misunderstandings and snap judgments about health care choices people make for themselves. Our position at ZBC is that there is a very useful place for complimentary therapies in supporting overall health and wellness for survivors in addition to evidence based, rigorously tested standard of care therapies - be they surgical, radiological or drug-based (chemotherapy, hormone therapy and so on).

The opinion piece Complementary medicine for cancer can decrease survival from YaleNews, July 2018, can be found here. You can read the actual research paper Complementary Medicine, Refusal of Conventional Cancer Therapy, and Survival Among Patients With Curable Cancers. published in JAMA in July 2018 here.

The third is an article about a research team led by Fergus Couch, Ph.D., a geneticist at Mayo Clinic, that has identified specific genes associated with an increased risk for developing triple-negative breast cancer. Their research was published in the Journal of the National Cancer Institute.

“Triple-negative breast cancer is an aggressive type of cancer that cannot be treated using targeted therapies,” says Dr. Couch. “It accounts for 15 percent of breast cancer in the Caucasian population and 35 percent in the African-American population. It is also associated with a high risk of recurrence and a poor five-year survival rate. Our findings provide the basis for better risk management.” You can read the Mayo Clinics full write up on these developments here.

Please let us know about any specific interests you have on the topic of breast cancer prevention and recurrence prevention by emailing ZBC here. We will do our best to find resources to share.

Thank you for your ongoing support for breast cancer risk reduction and recurrence prevention programs!

Yours in health,

Rose Barlow

Executive Director

PS. ZBC is growing its number of monthly donors significantly and you can become one too! If you read these monthly newsletter regularly then please consider a monthly gift of $25 or $50 (any amount helps) to help sustain the work of translating, disseminating and communicating evidence-based information about breast cancer risk reduction. Its quick and easy and you can now pay by PayPal too. Just click on this secure link and get started. Thank you!

Highlights from the 6th Bi-Annual
National Latino Cancer Summit

Zero Breast Cancer staff members had a very positive experience participating in the 2018 National Latino Cancer Summit at the UCSF Mission Bay Conference Center on July 30th and 31st. Many summit attendees (as well as passersby!) visited our booth. The team was able to answer questions and share information about ZBC's 13 Ways to Reduce Your Risk of Breast Cancer campaign.

The keynote speaker was Amelie G. Ramiraz, Dr.P.H., M.P.H from the UT Health Science Center at San Antonio. She presented data that put the entire conference in context. Did you know that collectively Latinos are now the majority minority demographic nationally in the USA today?

Latinos are 30% less likely to have breast cancer - but it remains the leading cause of cancer deaths for Latino women. Cervical cancer is a huge problem too that prevention and early detection could eliminate in this population. For these reasons - and in light of the facts below - Zero Breast Cancer is putting emphasis on creating and sharing breast cancer risk reduction educational materials for this population. We are systematically making good progress in translating our most up to date materials to Spanish.

You should also know;

There are 57.5 million Latinos in the US more than half are in California.
The next two largest Latino populations can be found in Texas and Florida.
35 Million Latinos are Mexican heritage
In 1970 Latinos made up 6% of the population of the USA.
By 2016 Latinos made up 18% of the USA population.
The median age of all Latinos in the USA is 28
The median age of foreign born Latinos is 42
The median age of US born Latinos is18

These numbers can easily mask that this is a heterogeneous group of people who differ by national origin, genetics and socio-economic status. On the other hand there are some common reasons why health disparities are so prevalent between Non-Hispanic populations and Hispanics ones. Cultural factors, socio-economic and employment status, education levels, life-style habits, limited access to insurance and/or quality of available health care all play a role.

Latinos identify by culture and ethnicity rather than ‘racial’ origin
US born and raised Latinos may be less healthy than immigrants due to acculturation - smoking, drinking and obesity are all increasing in this population.
33.9% of Latinos in the US have not completed high school
Only 15% of Latinos in the US have Bachelors degrees
The median household income for Latinos in the US is - $44,800
18% of Latinos in the US have no health insurance
Experts predict a142% increase in cancer in Latinos by 2030 as a result of population growth and aging
Cancer is the leading cause of death - in 2012 it moved ahead of heart disease - for Latinos

Aside from being an exhibitor ZBC also contributed to the Summit in the form of a Learning Lab on Survivorship Patient Navigation. Co-led by ZBC’s Catherine Thomsen and Zuckerberg San Francisco General Cancer Navigation Program’s Yadira Rodriguez, the session was bilingual, in English and Spanish, and was attended by 20 people. Catherine and Yadira described survivorship care plans and discussed the most common unmet needs for Latina cancer patients/survivors. (You can read more about the general topic of unmet needs of breast cancer survivors in a recent ZBC blog.)

Participants in the Learning Lab then broke into small groups for a brainstorming exercise, with two groups in Spanish (led by Yadira and Veronica Peinado of the Women’s Cancer Resource Center) and one in English (led by Lianna Hartmour of ZBC). All participants actively engaged in the discussion of differences between the needs of people with cancer still in treatment compared to those after active treatment. These small groups also talked about the skills and capacities that navigators and health care workers need to help people post-treatment. After this interactive session, 15 participants signed up to be included in a ZBC administered survivorship network!

If you would like to get involved in this survivorship network and provide input into the development of a new education campaign, email us at This email address is being protected from spambots. You need JavaScript enabled to view it. and include Survivorship in the Subject Line.

16TH ANNUAL DIPSEA HIKE - JOIN US!

Only three weeks to hike day!

Hiking too strenuous for you right now?
Try tai chi, fund-raising, volunteering or donating!

However you participate, you will help prevent breast cancer
in the next generation!

See you at Old Mill Park on Saturday September 22nd, 2018 at 8 a.m.
for registration and pre-hike activities.

SPOTLIGHT ON : Kevin Gay, numbers guy, non-profit professional, environmental conservationist and breast cancer risk reduction advocate.

Kevin Gay shares his enthusiasm for the mission of Zero Breast Cancer in this month’s Get to Know the Board interview. In his second year as a board member, Kevin’s financial management expertise and knowledge of nonprofit governance has been invaluable to advancing the ZBC mission. Read more of Kevin's story here.

NEW: Book Review #19

Famous for her years hosting Good Morning America, Joan Lunden was one of nearly 300,000 American women diagnosed with breast cancer in 2014. Opening up her heart, Had I Known - A Memoir of Survival, gives readers an intimate look into her journey navigating a breast cancer diagnosis and treatment, as well as personal family dynamics internal struggles, and the balancing of personal and public life. The issues she grapples with are evergreen so the book does not feel at all dated even though it was first published in 2015. You can read the full synopsis and review here.