Cancer and Career: Stigma, Discrimination, and Other Challenges for Patients and Survivors

Photo credit Deposit Photos.

A cancer diagnosis affects all aspects of a person’s life, and that includes employment. Coupled with the astronomical cost of cancer healthcare, especially for the un- and underinsured, the short and long term impact of cancer on financial stability and employment can be disastrous. If you are female, a person of color, disabled, and/or LGBTQIA+, these negative impacts are very often compounded by sexism, racism, ableism, and homophobia.

The stigma is real*.

Sexism, racism, discrimination, and other biases make working, maintaining productivity, and feeling valued for your work much more challenging in the face of cancer. I’ll cover some of those challenges in this post, as well as protections in place within the United States to alleviate them (with the caveat that we need more), and additional policies and protections that we could implement to protect and support cancer patients and survivors in the workplace. I’ll focus on breast cancer, but many of these challenges and solutions apply to people diagnosed with other types of cancer.

What are some of the challenges cancer patients and survivors face when it comes to work and careers? According to a recent study published in the Journal of Clinical Oncology challenges like job loss, decreased earnings, and increased spending (the last two described as “financial toxicity”) are some of the greatest. It seems like a no-brainer: if you lose your job or part of your income plus healthcare coverage while the medical bills for treatments pile up, you’re not really surviving all that well financially, let alone thriving. But we like and trust peer-reviewed data here, so let’s look at data.

The Problems

Click here to link to source.
  1. Financial distress caused by job loss/lost wages not only makes you feel worse, it has also been linked to “increased symptom burden and emotional distress and to decreased quality of life and treatment adherence.” In other words, if you’re strapped for cash or you’re suffering from the mental health effects of a cancer diagnosis without resources, you’re not as likely to be treatment or medication compliant. That leads to poor outcomes. Worse, cancer patients are more than twice as likely to file for bankruptcy after diagnosis, and bankruptcy is associated with almost double the risk of death among survivors.

That’s the biggie, and adds insult to injury. You have to pay for your treatments in order to live, but you may have to go bankrupt to do it, which increases your risk of DYING!

2. The scope is significant. Around 45% of people diagnosed with cancer in the United States are working age (20-64). This affects a LOT of people, y’all!

3. Many, if not most, people diagnosed with cancer do not have the means, privilege, or opportunity to take leave, paid or unpaid, for treatments, even under the Family and Medical Leave Act (FMLA). In fact, only 21% of low wage workers have access to paid sick leave. And for many workers who do, there aren’t protections in place to make certain they can return to their jobs following treatment. The Americans with Disabilities Act (ADA) provides protections for cancer patients against workplace discrimination and requires employers to make reasonable accommodations to allow cancer patients to continue to work, but it only applies to employers who have 15 or more workers. And a significant percentage of low wage workers are employed by small businesses that are exempt from FMLA and ADA requirements.

These are the same essential workers we’ve failed as a nation to support during the global pandemic.

4. Aside from concrete challenges, the mental and emotional health costs of a cancer diagnosis can reduce social engagement and a patient’s sense of self worth. I work as a cancer researcher and a cancer center, have a TON of privilege, and even I’m not immune to these challenges*. If I’m not, imagine how awful it is for patients and survivors with fewer resources and protections.

5. I cover disparities related to cancer care, outcomes, and financial toxicity in my book, but suffice to say, if you are female, not white, not able bodied, and not straight, you are likely to disproportionately experience all of these challenges on a much more significant level thanks to racism, sexism, homophobia, and ableism.

Existing and Future Solutions

In addition to FMLA and ADA protections (for those who qualify), many non-profit organizations offer financial assistance to cancer patients. Funds are available from Susan G. Komen for the Cure, the American Cancer Society, Young Survival Coalition, and other organizations, many of which I cover in my book, that can be used to cover the costs of treatments, bill pay, home health care and childcare, and a variety of other expenses.

Photo credit Deposit Photos.

But to truly and comprehensively tackle this issue, we need systemic changes. Some of the more so-called “progressive” solutions, like universal healthcare coverage, tend to be met with skepticism or outright hostility from free-market (*cough, cough – rich, white conservatives – cough, cough*) advocates who complain about lack of “personal responsibility,” think the current system works just fine, and/or think vouchers for purchase of private insurance and other non-government solutions work better (even though universal healthcare works very well in most other industrialized nations).

Aside from universal healthcare, there are other initiatives that have worked in other nations that might appeal to conservatives while making a significant impact on job retention and financial stability for cancer patients and survivors. For example, as noted in the Journal of Clinical Oncology Society study cited above, “A 2012 systematic review evaluated the effectiveness of government policies in place from 1990 to 2008 in Canada, Denmark, Norway, Sweden, and the United Kingdom to change employer behavior with regard to return to work. The most successful policies included financial incentives for employers to hire people with disabilities; flexibility and adaptations in the work environment, particularly with flexible schedules and giving employees more control over work demands; and programs that involved employers in return-to-work planning.” These incentives benefit everyone, including employers, patients/survivors, and society as a whole.

Patient-oriented interventions that tackle physical, psycho-educational, and/or vocational portions of cancer patients’ employment retention were associated with higher return-to-work rates compared to patients who received standard care. And patients who received this type of multidisciplinary intervention “experienced a significant increase in perceived importance of work, work ability, and self-efficacy with regard to returning to work, and return to work was 59%, 86%, and 83% at 6, 12, and 18 months, respectively.”

It’s going to take a lot of work in the form of political will, advocacy, legislation, and incentives to solve this problem. What can you do to help? Contact your elected officials and voice your support for programs that support cancer patient financial stability and access to reliable and affordable healthcare, job retention, and return to work with appropriate accommodations. It’s the right thing to do, and it’s good for the economy, society, and humanity.

If you’ve experienced workplace discrimination based on your status as a cancer patient/survivor, click here for information about your rights and what you can do to protect them.

*Story Time

You’d think being a cancer researcher who works at an academic institution dedicated to cancer care, research, and saving and improving the lives of those diagnosed with cancer, I’d be immune to the bullshit discussed above.

In many ways, I am. Thanks to a supportive Department Chair and Division Chief (both female), I was granted an extension on my tenure clock, additional discretionary funds, and professional/personal support from my (largely female) colleagues. To these individuals, I see you. I appreciate you. I love you.

Then there are the (largely male) colleagues who have made my experience working while undergoing cancer treatment and returning to work after the Covid-19 shutdown and a (very short) medical leave a lot shittier. My passion for breast cancer researcher didn’t diminish when I was diagnosed. I became MORE passionate! I worked through radiation treatments, horrible systemic therapies while trying to find one I could live with for 10 years, and after surgeries when I remained swollen, sore, fatigued, and mentally struggling with all of the emotional fallout associated with cancer.

And yet…a peer reviewer for a grant I submitted felt the need to make the following comment in his (I’m 99.999999% certain it’s a dude) review summary: “Dr. Brantley-Sieders is an Assistant Professor of Medicine…who completed her Postdoctoral fellowship in 2003. A concern is her lack of productivity, with only a single first or last author publication since 2017, and only 4 in total since 2012. That said, as noted in her letter of support by [DEPARTMENT CHAIR], she is a breast cancer survivor and there may be circumstances that underlie her less than optimal extent of productivity.”

First of all, it’s not true. I had and have more first/senior author publications since 2017 and 2012. In fact, I have published over 55 papers in high tier journals, which demonstrates my highly collaborative approach to science. Secondly, WHAT THE ACTUAL FUCK??? This reviewer thought it was okay to weaponize my own breast cancer diagnosis on a grant I submitted to a BREAST CANCER RESEARCH ORGANIZATION in the presence of other BREAST CANCER SURVIVORS serving as consumer reviewers. But, since my application wasn’t de-identified, and with my hyphenated last name (for which I’ve received inappropriate feedback about), this reviewer felt entitled to pose this outrageous and untrue criticism on an application by a female scientist.

Rather than hiding in a corner to lick my wounds, I reported this to the organization starting with leadership. Was it a risk? Of course! Backlash and retaliation are always a risk, especially for women who dare to speak out. But, if I stayed silent, I would have become part of the problem. I refuse to do that. I’ll be part of the solution.

I’m in the middle of another situation with a colleague I once trusted (my mistake) that centers around perceived shortcomings related to how I am balancing my work and ongoing treatments. What started as a communication issue is rapidly escalating into something more serious. At best, it’s a problematic situation. At worst, it may represent a serious violation of policy. I hope to resolve it in a way that is fair and satisfactory to both parties, but the damage is done in terms of trust and my perceived value to the project. Again, I could just sit quietly and accept it, but I’m not going to be part of the problem. I’m a fighter. I’m a damned good researcher who has made and will continue to make valuable contributions to science, and I’m worth it.

I HAVE A BOOK DEAL AND NEW HEADSHOTS!!!!

First off, HUGE news! My amazing literary agent, Barbara Collins Rosenberg, landed a publishing deal for me with Rowman & Littlefield!!! I’m honored, thrilled, and still squee-ing! So, stay tuned for Talking to My Tatas: A Breast Cancer Researcher’s Adventure With The Disease And What You Can Learn From It.

Here’s the Working Blurb – it will likely change based on guidance from my amazing editor, Suzanne Staszak-Silva, but it will give you a taste of what I intend to share (my story) and spread (scientifically sound information) with this book:

Can I talk to you about my personal relationship with my breasts?

I’ve spent twenty years working as a biomedical breast cancer researcher. Then, I was diagnosed with breast cancer. I thought I knew breast cancer before it whacked me upside my left boob and left me bleeding on the curb of uncertainty. Turns out, I had a lot to learn. The purpose of this book is to share my personal adventure with breast cancer, from the laboratory bench to my own bedside, and to provide accessible information about breast cancer biology for non-scientists. I say adventure, because I’d rather think of it as an action movie with some really cool side quests instead of another tragedy-to-triumph saga. I’m not big on sagas. I am big on kickass intellectual badassery, pathological nerdiness, and talking about my sweet, sweet rack.

Why do we need another cancer memoir? In a sea of inspirational stories, celebrity survivor stories, and physician memoirs that bring a clinical perspective, nothing I’ve found in the current market tackles breast cancer through the lens of a breast cancer researcher who became a survivor. We live in an age of fake news and pseudoscience, made worse by the pervasive anti-intellectual and anti-science political culture gripping the United States and much of the world. The Internet and social media are plagued by scammers selling “alternative medicine” and woo woo “cures” for cancer. Through Talking to My Tatas: A Breast Cancer Researcher’s Adventure With Breast Cancer And What You Can Learn From It, I offer accurate, evidence-based science that is accessible to laypersons, including the more than three hundred thousand individuals diagnosed with breast cancer every year*, their caregivers, and their loved ones. 

Knowledge is power, and lack of it can lead to overtreatment, unnecessary pain and suffering, and can even be deadly. By demystifying the process from mammograms, biopsies, pathology and diagnostics, surgical options, tumor genomic testing, and new treatment options, I aim to offer hope in a story intended to blend the humor and delivery style of  Jenny Lawson’sLet’s Pretend This Never Happened (A Mostly True Memoir) with the integrity and scientifically sound beauty of Siddhartha Mukherjee’s The Emperor of All Maladies: A Biography of Cancer.

*American Cancer Society Facts & Figures 2020

I’ve got some work to do! In addition to writing and fleshing out chapters for my editor to review (and work her magic on), I’ve been busy working on figures and visuals for the book, cover art forms, marketing and promo plans, and getting a new headshot! The one I currently have on this page and all over the Internet is absolutely gorgeous, fun, and from 2012. A LOT has happened in 8 years, and I have aged. I’d like to think I’ve aged gracefully, but at any rate, it was time to update the image.

Lillian Boeskool is MAGIC! She made me look so good and captured the essence of my personality in a series of amazing headshots (If you’re in the greater Nashville area and need headshots or other photography, HIRE HER). I have two favorite images and I cannot decide which one to use for this page and the book. I invite y’all to enable my decision-making disorder vote for your favorite!

Photo Credit Lillian B Photography

This one on the left is super fun and catches me trying not to laugh at something funny Lillian said and/or did. It captures my mischief, my sense of humor, and really makes my face look nice.

And, unlike the previous headshot for which I straightened my hair, this one highlights my popping natural curls!

I’m almost 48 years old. Anything that makes my face look nice is gold.

Told you she was MAGIC!

Photo Credit Lillian B Photography

There’s just something about this next one on the right that speaks to me.

I think it captures my sass and tells my readers that I’m going to take them on a really funny adventure that will make them a smidge uncomfortable but will ultimately leave them laughing and glad they went along for the ride.

That’s me in a nutshell.

I can’t decide between the two!

And…just to throw a monkey wrench into this whole program…

Photo Credit Lillian B Photography

This one is my husband’s favorite.

It’s nice, too.

I’m glad he thinks I look good in all of these photographs and still thinks I’m beautiful in spite of time marching across my face and body and in spite of cancer leaving me with a janky left breast-in-progress*.

He’s pretty awesome!

I think I’ll keep him.

*Janky left breast-in-progress on display in the first two photos as the line of discoloration just above my shirt collar. Lillian asked if I wanted to Photoshop it out, but I said no. It’s where I am right now. It’s why I’m blogging, writing this book, and becoming a breast cancer patient/survivor advocate as well as a breast cancer researcher. It’s a badge of fucking honor and it stays!

Reconstruction Surgery and Resilience

With so much uncertainty in the world, it’s nice to be fairly certain about one thing: tomorrow, I will get a new left breast. It’s a mixed bag of emotions for me, but the strongest are relief and hope.

When I wake up tomorrow afternoon from anesthesia, Covid will still be ravaging the planet. We may or may not know who will be the next president of the United States. I have no idea whether or not my latest research grant will be funded, nor do I know what will happen to my quest for tenure in 2021. But, if all goes well, cancer’s reshaping of my body will end.

A wise friend once told me that the only certainty in life is uncertainty. I’ve found that to be true in my almost forty eight years of living. For someone who suffers from anxiety, it is a difficult truth to face. I’m the type of person who thrives on stability, on knowing what to expect, and on consistency. There has been precious little of those comforts for me since April 19, 2018, and especially since February 2020. Discovering that I still had residual disease in the form of a 6 mm tumor remaining in my left breast pulled the rug out from under me and stole my illusion of safety.

That’s one lesson I learned from cancer—there is no such thing as safety or certainty.

So how do I cope? How can we as survivors cope? Building Resilience.

Diagram of Resilience

For me, one strategy has been to let go of the illusion of control. Or, to really refine the concept, I’ve been working hard to catalog the things I can control, like staying as healthy as possible with diet, exercise, regular health screenings, medication, and yoga/meditation. These measures may or may not prevent a recurrence, but they will help me live a better, healthier life. There’s no downside.

Other things I can control include the effort I put into taking care of my family. I can love them, feed them, create special moments and memories that nothing can take away, not even cancer. I can take pleasure in the small, daily moments that I used to take for granted. For example, I spent about thirty minutes this morning watching birds at my feeders. We have so many birds, from tit mice (snort) to a red-bellied woodpeckers, and chickadees to sparrows! I’ve always found solace in nature. Other small moments like a cup of tea enjoyed sitting on my deck with a chill in the air and the sun caressing my face bring me joy. I’ve had the BEST time cooking with my kids. Potstickers with my daughter and meat and rice bowls with my son have sustained us physically and emotionally. Again, there’s no downside to savoring the small moments of joy in everyday life.

I cannot control whether funding agencies select my research grants for support, but I can control the quality and integrity of my research. Funding is even more uncertain today than when I entered the field, but it is still an exciting and hopeful time to be a scientist! There are many exciting avenues of breast cancer research open for me to pursue, and if I have to leave the field (or, more likely, switch from tenure track to research track) in a few years, I’ll leave behind a body of work that I can take pride in, and I can and will continue to work in other avenues, like education and outreach. I can control how I adapt to career challenges.

The best I or any of us can do is to live every single day to the fullest. We can choose kindness, positivity, and follow our paths to making the world a better place, starting with ourselves and our community. Every day is a gift, and tomorrow’s gifts are yet unknown but so inviting. I look forward to being physically whole. I look forward to getting back to regularly scheduled life with a newly restored body, building strength and resilience.

I look forward to hope, which is something I can rely on.

Conversation With a Survivor Sister

I recently had the great pleasure of chatting with a dear friend and fellow breast cancer survivor, Ronei Harden-Moroney. She invited me on her livestream to talk about breast cancer—science, personal experiences, and sharing what it’s like to be in this exclusive club that neither of us signed up for but brought us closer all the same.

As you can see, Ronei is an amazing lady and one tough cookie. I hope hearing her story inspires you and gives you hope. You can find her on Facebook, Twitter, Instagram, LinkedIn, and Goodreads. If you’re looking for an editor or writing coach, seriously check her out!

From livestream on October 23, 2020

Nice Going, AACR (Salt on the Wound)

I didn’t plan on writing two blog posts in one day, but here we are. Because of my second diagnosis with breast cancer, I have to adjust my life and schedule to accommodate surgery, reconstruction, and other treatments. I had planned to attend the annual American Association for Cancer Research Annual Meeting in April so I could present my research on molecular regulation of breast cancer bone metastasis, network with colleagues, patients, survivors, and policy makers, and learn about the latest advances in the field.

Cancer has robbed me of that opportunity.

Since I’d already registered, I contacted AACR to let them know what was going on and to cancel my registration. Here’s what I wrote:

Short, sweet, to the point. I didn’t expect a reply until next week, but, to my surprise (and based on the tone of the reply, horror), I received a reply within a few hours:

So, after writing the American Association for CANCER Research to let them know that I cannot attend the meeting because I have CANCER, that’s the stone cold, insensitive, shitty reply I received. I could’ve let it slide, but, as I note in my response, I’m soooooooo done with bullshit at this point.

Here’s my reply (copied and pasted since it’s too long for a screenshot):

Dear David,


Wow. Just wow.


Two years ago, I would have just let this slide, been “nice” and “quiet” without causing trouble, like all women are taught to do. But two years ago, I was diagnosed with breast cancer. And, as of last week, my breast cancer is back. As such, I have neither the time nor the energy for bovine fecal material. That the current bovine fecal material is coming from the American Association for Cancer Research, an organization I’ve supported since my days as a graduate student (member 1998-present), just after a second diagnosis with breast cancer, makes it all the more horrible.


As I noted in my request, I have cancer. I will likely be undergoing surgery for the third time during the annual conference, which means cancer has cheated me of the opportunity to present my own research findings on breast cancer metastasis to my peers. Cancer will also steal time from my research, my family, my friends, and my life. 
So, in response to, “Please let us know if you still wish to cancel your registration,” um, yeah. Did you think I’d suddenly change my mind, or that my cancer would suddenly be all better so I can totally go to the meeting – my bad? What kind of stupid, insensitive question is that? Seriously, I have people who despise me who wouldn’t be that stone cold. Do you need proof of my diagnosis? I have CDs full of scans from my six biopsies and two lumpectomies. Do I need a doctor’s note? You can check out my blog where I’ve been documenting my story in an effort to let patients going through the same struggles that (a) they’re not alone, (b) knowledge is power so here are accessible data you can use to make informed healthcare decisions, and (c) to be a liaison between research and patients/survivors so the public understands how important our work is and so they’ll engage to help us better meet their needs. www.talkingtatas.com.

You’d best believe I’ll be blogging about the AACR responding to the news that I have cancer and cannot attend the annual meeting with it’ll cost you $125. No “I’m so sorry for what you’re going through.” No, “What can the AACR do to support you during this difficult time.” Just, “We can understand your concern.”


You can understand my concern, you say. With all due respect, no, unless you’ve had cancer, you absolutely, positively cannot understand even a fraction of my concerns. Unless you’ve been hit by the sledgehammer of shock upon hearing those three horrible words, you have cancer, unless you’ve had to tell your spouse, your children, and your mother that you’ve been diagnosed with a deadly disease, unless you’ve endured the pain of surgery and recovery, the burns and fatigue induced by radiation, the indignity of estrogen suppression therapies that forever change you and your relationship to your body, unless you’ve endured sleepless nights wondering if you’ll live for another 5 years, 10 years, 15 years, and if/when cancer might come back and kill you, you have NO IDEA about my concerns. That’s completely insensitive, condescending, and wrong on so many levels.


But please, by all means, take the $125. You certainly need it more than I do. I don’t need to think about insurance deductibles, medication, bills to support myself and my family. 

And one last thing – you don’t get to call me “Dana” in a response like the one you offered. It’s Dr. Brantley-Sieders to you.

A little consideration, human decency, and kindness can go a long way. Coldness, disregard, and insensitivity can, too. Badly done, AACR. Badly done.

Photo credit

Introduction

I love you with all my boobs. I would say my heart, but my boobs are bigger

Dr. Dana Brantley-Sieders, Ph.D. (photo credit Lillian Boeskool)

I’ve spent twenty years working as a biomedical breast cancer researcher. Then, I was diagnosed with breast cancer. I thought I knew breast cancer before it whacked me upside my left boob and left me bleeding on the curb of uncertainty. I thought I knew cancer. I had a lot to learn. The purpose of this blog is to share my personal adventure with breast cancer, from the laboratory bench to my own bedside, and to provide accessible information about breast cancer biology for non-scientists. I say adventure, because I’d rather think of it as action movie with some really cool side quests instead of another tragedy-to-triumph saga. I’m not big on sagas. I am big on kickass intellectual badassery, pathological nerdiness, and talking about my sweet, sweet rack.

I’ll be posting about breast structure and function, how breast cancers arise from normal breast tissues. Notice I wrote “cancers” instead of “cancer.” Breast cancers are a actually a collection of diseases, and all breast cancers are different. To date, there are at least 5 subtypes, and subtypes within those subtypes.

It’s complicated, which is one reason why we haven’t cured these diseases. Another reason is how tricky and adaptable cancers are by their very nature. We’ll get into all of that in a few posts. In the meantime, let me get into the other purpose of this blog: fighting pseudoscience and scams with peer-reviewed, vetted science.

We live in an age of fake news and pseudoscience, made worse by the pervasive anti-intellectual and anti-science political culture gripping the United States and much of the world. The Internet and social media are plagued by scammers selling “alternative medicine” and woo woo “cures” for cancer. Through TALKING TATAS, I offer accurate, evidence-based science that is accessible to laypersons, including the more than three hundred thousand individuals diagnosed with breast cancer every year*, their caregivers, and their loved ones. Submit questions, ask for follow-up on any and all posts, be a part of the discussion. Knowledge is power, and it can save lives!

Welcome! I’m glad you’re here!