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

Race and Cancer (part 1 of 3)

 

I spent the summer of 2020 being reflective of my own racist behavior, thoughts, and actions. The killings this year of unarmed Black people like George Floyd, Breonna Taylor and so many others have woken my consciousness about my own views, actions, and behaviors. For me to be a better person, an anti-racist person, I have decided I need to look inside, speak out, and vow to make change.  And so, I confess for the first time to anyone my first thoughts when I realized my cancer was “Triple Negative”.  

From the jump, I knew my breast cancer was “Triple Negative” (TBNC).  It was the first time it really sunk in there were different types of breast cancer – each defined by the presence (or absence) and the combination of  three known “markers” of breast cancer: hormone receptors (estrogen and progesterone) and an expression (or not) of human epidermal growth factor receptor 2, otherwise known as HER2. “Triple” negative breast cancer is a type of cancer that has NONE of the known receptors.

Decades of research and clinical trials, much of it in the last 30 years, have shown that each “type” or combination of those three factors contribute to the treatment plan, the “survival rate”, who is likely to get it, etc.  And so, like most of us longing for more information these days, I immediately took to “Dr Google” to research what that meant for me. Was it treatable? What was the treatment? Was it going to kill me? How did I get it? Who else gets it?

For the sake of today’s blog, we will be focusing on “who else gets it?”

According to a site I trust, breastcancer.org: “Anyone can be diagnosed with triple negative breast cancer. Still, researchers have found that it is more common in:

• Younger people. Triple-negative breast cancer is more likely to be diagnosed in people younger than age 50. Other types of breast cancer are more commonly diagnosed in people age 60 or older.
• People with a BRCA1 mutation. About 70% of breast cancers diagnosed in people with an inherited BRCA mutation, particularly BRCA1, are triple-negative.
• Black and Hispanic women. Triple-negative breast cancer is more likely to be diagnosed in Black women and Hispanic women. Asian women and non-Hispanic white women are less likely to be diagnosed with this type of cancer.”

Ok so well, I fit NONE of those “most common” characteristics. Nonetheless, one of the characteristics did stick out to me immediately: “triple-negative breast cancer is more likely to be diagnosed in Black women and Hispanic women.”

So, two thoughts. Of all the thoughts one can have running through their mind when diagnosed with cancer – I honestly had two come immediately to mind:

1) 1) Ok, so even though I’m not Black, I have been diagnosed with a type of cancer that is more common among Black women. And…(and here it is for all to read……

2) If the disease is known as a predominantly a Black women’s cancer, how much attention and research has been done to find a cure? How has this affected the availability of effective treatments? And, of course, what does all this mean for MY survival?

Look, I was scared to be in this group. Not because I did not want to be categorized or grouped with

Black and Brown women. Not because I did not feel as if I fit in or could relate with this group of women. But knowing how this country has historically treated people of color in general and specifically the lack of attention, research, and funding paid to diseases that are more common in people of color, and even more so for WOMEN of color - there was a very good chance in my mind anyways, that little may be known about MY type of cancer. And that, frankly, fewer research dollars, focus and thus the treatments would not be available to me in my fight with cancer because of it.

Bottom line: It is terrifying to be diagnosed with cancer. No question. It is every person's worst nightmare. But to be diagnosed with a disease more commonly found in Black women brings home just how racism can also have a potential horrifyingly awful affect on everyone, regardless of skin color - even this white, 55-year-old, BRCA negative, female.

Join me for the next TWO additional blog posts as I explore the facts, factors, and feelings around “who else gets” TNBC.

Time With an Old Friend in the Midst of a Pandemic

Ok, so I know, I know, we are in the middle of a global pandemic. And I know the fore-mentioned PANDEMIC is creating, uncovering, accelerating, and exacerbating anxiety.  For everyone. And for someone who is living with the experience of cancer, that anxiety feels like an old friend – on steroids.

You see, a cancer diagnosis comes with a friend. That friend is anxiety. Manifested on the

spectrum of “Am I going to die?” to “I am dying.”, ol’ buddy anxiety is always present and accounted for. It goes without saying (but no one says it to you), to cope with a cancer diagnosis, you MUST cope with anxiety.

“Is THAT a new lump?” “Why does my shoulder hurt?” “Has chemo affected my heart?” “How do I know it hasn’t returned?”  Sure, you can - and should - take up a myriad of measures to manage your anxiety: mindfulness practices, search for medications that help you, be truthful to your daily medications, increase your medications, etc., but your pal, anxiety, well she's always lurking around.

With the news 24/7 blasting out the horrifically sad number of humans infected with Covid-19, the even more devastating number dead, and each figure GROWING exponentially every day, I have been feeling that something is coming to get me. Much like an army of very bad things it is on the move and it will soon reach my home, infecting everyone in my family.People aren’t taking this seriously!Beaches are crowded!Too many people in one place!The Government is clearly inadequately prepared to manage this!We will all end up on ventilators - wait, NO! there aren’t enough ventilators – so, instead, I’ll die laying in a busy hospital hallway – alone.

Yep, that’s it. In a fucking terrifying nutshell, isn’t it? 

Early on in this pandemic, I found myself falling back to my mental place post treatment. After being pushed gingerly – albeit cold turkey – out of the comfort of the chemotherapy stage (hovering nurses, consistently comforting and encouraging as I made my make way through the weeks, months of chemotherapy) and into a new normal life without a safety net. A new normal life that is accompanied by uncertainty and fear. And that’s where I met anxiety.

As my tool box of anxiety management skills develop, I have enjoyed a long-distance relationship this past year with anxiety. Unfortunately, and without invitation, she's now flopped on my couch in the day time and creeping under my bed at night. She’s been particularly annoying since late February and she’s shifted into 4^th gear-with-a-tail-wind, pain-in-the-ass house guest as of mid-March. My chest is tight, my breathing is swallow and quick, my heart rate has settled into a dizzying, quick-as-a-bunny rate. I feel as if I will going to pass out or have a heart attack. I sleep like shit. In short, I am a mess.

Look, I don’t have a magical cure for anxiety in the face of a global virus pandemic. There is no simple answers on how to manage the feelings and fears at a time like this. Most of us have never experienced anything like this in our lifetime. But I know, after going through a very grueling cancer treatment protocol - and now living with knowing the disease could return to kill me at any time - the ONLY thing I can count upon to manage my anxiety adequately is ME. 

So that army? How can I possibly stop that army of bad things from coming for me? Well, it turns out I have command of the best and the only defense needed – yep, me. I practice meditation every day. I never skip a day. I purposely focus and calm my mind. It feels comforting to be able to quell my thoughts when everything else around me seems bat-shit crazy. I make use of the medications afforded to me and I’ve increased their dosage and frequency when I need to. 

I have the ability to build and sustain a fortress of safety around me and my loved ones by washing my hands, physically distancing, wearing a mask, staying home. These are the things I’m told by medical professionals will keep the army of bad things away. So, I do them. My family does them. Doing them gives me some sense of control over a crazy, fucking time right now.

And I listen to my wife. She sings to her mother - now kept from family visits and hugs, she sits alone in a memory care facility in update New York - via FaceTime every Friday. And that – that gives me hope.

 #KeepRooting4Me #KeepRooting4AllofUs #StayHome