The Power of Blue Sky

 

Those who have followed my cancer journey know that I have a strongly held belief the results of the 2016 presidential election – and my emotional reaction to it – was a contributing factor in my cancer diagnosis just some 30 days following.

And so, on this election day now four years later, as the anxiety and uneasiness builds, I remind myself of how much I’ve changed – not just the fact that I now live with having a cancer diagnosis - but because of it, I’m a stronger person, a more grateful person, and a more hopeful person. A person with a bigger mental toolbox, capable of withstanding life’s heartbreak and despair.

I meditate every morning, every day. I focus on being mindful and in the moment and not take the dark path into the unknown and scary. I remind myself constantly of the “blue sky” theory that tells me no matter how dark the clouds, or how shitty the weather seems, above all that is clear, blue sky. It’s always there. A constant, no matter what. So, focus on the blue sky. Breathe to the blue sky.

But yea, I’m anxious about the 2020 results. I understand the importance of electing leaders who you respect and trust, and who bring dignity to the office. And I realize the consequence of not doing so is devastating. I recognize the power of stress and bad juju on my physical and mental health. And so I’ve tried to consciously put myself in a “self-care bubble” for days leading up to this day. And I’ve pulled out every coping skill that having cancer has given me. May it be enough.

Focus on the blue sky, America. Breathe. Vote. 

 #KeepRooting4Me #Grateful #Hope

Race and Cancer (prt 3 FINALLY)

 

Five Thousand (5,000)+ years after the discovery of breast cancer, triple negative breast cancer (TNBC) was officially recognized as a distinct type of breast cancer in 2006.

That was just 11 years before my diagnosis.

That discovery was quickly followed by a massive amount of research funds for TNBC. The Komen Foundation, for example, invested more than $74 million in over 100 research grants focused on triple negative breast cancer. The Triple Negative Breast Cancer Foundation teamed up with the Komen Foundation in 2009, pledging a total of $6.4 million over five years to fund research to support the discovery of new TNBC treatments. That may sound like A LOT of money and for sure, it is.

Overall, breast cancer is one of the best research-funded diseases in this country. According to Cancer Health (www.cancerhealth.com), breast cancer research received over $460 million for research. That figure is twice as high as the next highest-research-funded cancer, leukemia at $201 million. I fully am aware that I have benefited from such research funding over the years. The past 20 years uncovered so much about breast cancer. Those discoveries are a direct effect of funding for research and clinical trials. I wanted to very much further that work and my participation in the TNBC clinical trial serves this purpose for me.

And the discovery of TNBC, the focus on the disease, the funds for research and trials, and the success of the research all seem to be paying off!

In 2011 – just 5 years after the discovery of TNBC - six different subtypes of TNBC were identified by a project, led by Komen Scholar Dr. Jennifer Pietenpol and funded by Komen and the Milburn Foundation. As of 2017, several clinical trials are now underway that will test new, targeted treatments for the TNBC subtypes.

Just FYI, I do not know my TNBC subtype. I was diagnosed on the crisp of the discovery of the TNBC subtypes and regular testing for the biomarkers was not available. I fell under – as still most TNBC’ers do – with the tried and true but brutal, chemotherapy treatment of an anthracycline such as Adriamycin – one of if not the most powerful chemo drug invented, affectionately known as the “red devil” (its red in color)  - and Cyclophosphamide (the twins otherwise known as “A/C”),  followed by a Taxane, such as Taxol or Taxotere. Eleven years after the discovery of TNBC, I was fortunate to be on the cutting edge – following a successful clinical trial - of introducing to the “chemo party” a fourth chemotherapy drug, Capecitabine, also known as Xeloda.  Xeloda is now part of the standard of care for TNBC patients with residue tumor post A/C, T.

Clearly, the pace of research, thus knowledge about the biological terms of TNBC, has picked up in just the last few years. But back to my original topic of this – now VERY long blog series: WHO tends to be diagnosed with TNBC?  And WHY is that? AND how does that relate to me?

So, it’s back to “Dr. Google”. From another trusted site, Triple Negative Breast Cancer Foundation (tnbcFoundation.org), “several studies suggest that being premenopausal or of African ancestry increases your risk of developing basal-like or triple-negative breast cancer. Among African American women who develop breast cancer, there is an estimated 20 to 40 percent chance of the breast cancer being triple-negative. Researchers do not yet understand why premenopausal women and women in some ethnic groups have higher rates of triple-negative breast cancer than other groups of women.”

Let that sink in a bit. Of all the Black and Brown women diagnosed with breast cancer, up to 40% of them have TNBC.

Previous studies have reported that Black women in the US are twice as likely as white women to be diagnosed with TNBC. However, a 2019 ground-breaking study from the American Cancer Society (ACS) suggests that saying that all Black women have a higher risk of being diagnosed with TNBC may be too general of a statement. According to ACS, “the study reported the prevalence of TNBC in Black women varies significantly depending on where the women were born. More specifically, Black women born in the US and Western Africa were diagnosed more often with TNBC than women born in East Africa.”

The study continues, “compared with the prevalence of TNBC among Black women born in the US, Black women born in West Africa had similar rates to Black women born in the US; the Caribbean had a 13% lower prevalence; and those born in East Africa had a 47% lower prevalence rate.”

ACS continues, “Unfortunately, there wasn’t enough data to analyze the prevalence rates of Black women born in North, Central, or South Africa. The main limitation of the study was missing information about birthplace. The researchers say it’s important to take birthplace into consideration when studying different types of breast cancer in women of African descent in the US and other parts of the world. This could help cancer experts better understand the diversity of breast cancer among Black women. The authors say their study “calls for a concerted effort for more complete collection of birthplace information in cancer registries.””

So, I don’t know. Was the slowness surrounding the discovery and subsequent push for research of TNBC because the disease affected a smaller % of breast cancer patients on the whole than other types of breast cancer? Recall the power grid analogy, if you will.  Was it because a drug, Taxoifen, was already used in women for birth control and thus was an “easy” treatment win for some types of breast cancer but not for TNBC? IN other words, had that drug-relationship in women not already been made, would it have taken longer for the first breast cancer treatments to arrive? Did the pace of research and knowledge of TNBC have anything at all to do with WHO was more commonly affected with TNBC?

Maybe a combination of all factors.  Maybe. 

What I do know is, widely speaking, Black people die from disease in far larger numbers than white people who have the same disease.  And so, the remainder of this post will be about the education of these facts. To better myself, my anti-racist self, I will use my voice to speak truth on this. I hope you will continue to read on and join me on this journey.

According to WebMD.com, “Blacks are 3 times more likely to die of asthma than whites; Black Americans are 3 times more likely to suffer sarcoidosis than white Americans; Black American children are 3 times as likely as white American children to have sleep apnea; Black American men are 50% more likely to get lung cancer than white American men; and for goodness-sake: Black Americans are half as likely to get flu and pneumonia vaccinations as white Americans.”

Dr. Clyde W. Yancy, MD, associate dean of clinical affairs and medical director for heart failure/transplantation at the University of Texas Southwestern Medical Center, tells WebMD, “all humans have the same physiology, are vulnerable to the same illnesses, and respond to the same medicines. Naturally, diseases and responses to treatment do vary from person to person. But, he says, there are unique issues that affect Black Americans.  Genes definitely play a role. So does the environment in which people live, socioeconomic status -- and, yes, racism.”

Dr Yancy continues, “We must recognize there are some arbitrary issues that are present in the way we practice medicine and dole out health care. It forces us to think very carefully about the very volatile issue of race and what race means. At the end of the day, all of us acknowledge that race is a very poor physiological construct. Race is a placeholder for something else. That something is less likely to be genetic. It is more likely to have to do with socioeconomics and political issues of bias as well as physiologic and genetic issues that go into that same bucket. Some racial differences are more nuances. But there are issues of disparity and there are issues relative to racism that operate in a very broad context."

What I can do is use my voice, my blog, to talk about the diagnosis and outcome disparities between white women with TNBC and Black women with TNBC. Because they are stark. Even though as Dr. Yancy says, “all humans have the same physiology, are vulnerable to the same illnesses, and respond to the same medicines”.  Outside factors such as systematic racial inequalities to access and/or affordable preventative and general health care should be considered. And certainly the lack of medical research focusing on why these disparities exist and how to resolve them needs to be highlighted.

Just as the discovery of TNBC in 2006 spearheaded a massive amount of funding and knowledge about TNBC, so may the knowledge, acceptance, and actions to reverse the health effects of racial inequalities in this country provide an avenue and an opportunity to close the diagnosis and survival gaps. Everyone - everyone - living with Cancer has HOPE for a cure, HOPE for the speed and success of medical research, HOPE to live a long life.  

It seems I have more in common with Black and Brown women after all. Perhaps we ALL do.

 In solidarity. #BLM #KeepRooting4Me #BreastCancerAwarenessMonth

Race and Cancer (part 2 of 3)

So, let’s test my concern that perhaps race has had a negative factor in the knowledge of and treatment of Triple Negative Breast Cancer (TNBC) – and learn together along the way - shall we? So what do we know about triple negative breast cancer (TNBC)? Well, we know that approximately fifteen (15%) of all breast cancers are TNBC. It is known as an “aggressive” type of breast cancer – mainly because it has no known treatments other than chemotherapy. And twice as many Black and Brown women are diagnosed with TNBC than white women.

Breaking that information down a bit, we now on the whole it’s a small % of breast cancers, its aggressive – due to lack of treatment options, and there is an awful high chance (twice as high) that if you are a women of color and are diagnosed with breast cancer, it’s gonna be TNBC.

Perhaps it’s less political, or less controversial – or simply more beneficial – to focus research on the biological characteristics of a disease than it is to dive into the genetics, heritage, environmental, etc. characteristics of a disease. Regardless, this seems to have been the path for TNBC.  

According to the National institutes of Health’s National Library of Medicine (ww.ncbi.nlm.nih.gov), humans have known about breast cancer for a very, very long time. Medical texts from as far back as 3,000–2,500 B.C.E. mention the disease. In ancient Greece, Hippocrates described the stages of breast cancer in the early 400s B.C.E.

The first mastectomy was performed in 1882 and in 1898 thanks to the research of Marie and Pierre Currie, radium was added to treatments. Oh, and it took 50+ some years for medicine to develop a “less disfiguring” way to surgically treat breast cancer in 1932.  See what I mean? I’d lay money on if this disease affected men and the treatment was disfiguring (particularly in the you-know-where-area), it would NOT have taken 50+ years for men (mostly) to develop better procedures. And this. This is my fear about MY disease. If my disease is more commonly found in people of color, how long will it take for research and treatments to catch up when said research and treatments are being conducted and funded (mostly) by white people?

Then, for an amazing twenty years from 1978 to 1998 - beginning with the FDA approval of the drug Tamoxifen in 1978 for use in breast cancer treatment - research and development of treatments and specific knowledge about the many forms and types of breast cancer really took off.  As it turns out, Tamoxifen was originally developed for birth control because it suppresses the development of the hormone, estrogen. As it turns out, approximately 60-70% of all breast cancers are hormone receptor “positive” and so shutting down the production of estrogen, helped to “starve” the disease.  This was an amazing advance forward in treating the majority of women diagnosed with breast cancer.

It took another six years for the discovery of a new gene called HER2 in 1984. Approximately 20% of all breast cancers overly express the HER2 gene. This gene was linked with more aggressive breast cancer because it was not responsive to the hormone receptor treatments like Tamoxifen. The BRCA 1 and BRCA 2 gene mutations were discovered in 1995. These gene mutations can help predict the increase chance of breast and ovarian cancers – particularly aggressive types (but then again, I am BRCA negative, so it is not always the case).

Preventative therapies for breast cancer didn’t emerge until 1996 when it was discovered Tamoxifen also decreases the risk of developing breast cancer in at-risk women.  Whoa. Wait a sec. So it's only been 24 since the development of a PREVENTIVE treatment for a disease that 1 in every 8 women get diagnosed. Additionally, a drug used to target cancer cells over-producing HER2, Trastuzumab, was approved for preventative therapy in 1998.

No mention there – in those 20 years or at any time in history - about triple negative breast cancer.  Remember, “triple negative” means no hormone receptors are expressed – so the known drugs that suppress those hormones are ineffective. And the disease does not express the only other known indicator the HER2 gene, so any therapies used to suppress that indicator are also ineffective. Therefore, TNBC remains a very aggressive cancer, accounting for a disproportionate number of metastatic cases and breast cancer deaths.

The optimistic part of me thinks well, perhaps medicine – much like power companies - choose to focus “fixing” the big power grids first in their efforts to positively affect the largest number of people at once. I can understand that, unless of course you are diagnosed with the type of breast cancer that affects the smallest % grid of all breast cancers.

The “glass half empty”, perhaps more woke me thinks that perhaps part of the reason little is known about TNBC – it didn’t even have a name until a decade ago, no such discovery of its “receptor” to date, or the development of advanced therapies to keep it at bay, and certainly no known information on how to prevent its occurrence (if you recall that basis on the clinical trial I’ve been enrolled in for the last 2 ½ years is about preventing recurrence) -  might possibly have a bit to do with who is diagnosed with the disease…remember, ”more commonly found in Black and Brown women”.

Woke. Not woke, I can tell you that honestly my first thought did not go to the power company analogy!

So what gives? How does race affect medical research? Has it affected the speed and funding of research about my type of cancer? Hang with me for Part Three coming soon!

Rest in Power, Justice Ginsberg. May your Memory be a Revolution. #RGB