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.

Fundraising for Tanisha

Tanisha Jones MBC & Renal Failure Fund

I’ve met and admired many survivor sisters over the years. After my diagnosis, they held me in their arms and lifted me up so I didn’t have to face breast cancer alone. Before I was diagnosed, I got to know a really cool woman named Tanisha Jones. We were represented by the same literary agency at the time, writing romance and urban fantasy* and trying to break into the fiction publishing world in a big way.

*Side note: If you’re a fan of Anne Rice and J.R. Ward, TREAT YOURSELF to Tanisha’s The Fallen Series. This exciting series is full of vampires, Fae, Weres, demons, and other supernatural beings hiding in plain sight in New Orleans. Throw in a hot homicide detective with some supernatural abilities of his own and you’ve got one helluva story!

Like me, Tanisha works in academics (one of her many jobs). She also has a daughter, just a little bit older than mine. She has hopes, dreams, highs, lows, a wicked sense of humor and a drive and work ethic to rival any I’ve seen in my almost 48 years on the planet.

Like me, she has breast cancer. Unlike me, she’s living with metastatic breast cancer (MBC). While there is no cure, she hasn’t allowed MBC to define her life or steal her dreams. She’s still writing – she published Unbound, Book 3 in The Fallen series, this month. She’s still raising her daughter. Due to health issues related to MBC, she isn’t working at the moment but she’s worked since her diagnosis in 2016.

Because America is still balking at the idea that healthcare is a human right rather than a privilege reserved only for the white and wealthy (and healthy), like many Americans, Tanisha is struggling financially due to the cost of her cancer care. I could write an entire rage post on the topics of American healthcare’s failures that include the real possibility of financial ruin, disparities in access and care, and the lack of healthcare equality and equity that is still VERY much a problem in 2020 in this country, and I will.

But right now, what matters is helping my friend who’s struggling with breast cancer.

Tanisha’s family also has a GoFundMe initiative (you know, the largest healthcare “plan” in the United States) to help her. Click here to donate what you can. It helps. It matters.

I have taken the extra book royalties I earned in November plus a small windfall that came to me at just the right time to support Tanisha. I can think of no better person in whom to invest.

We did it! Goal for ACS Fundraiser Met!

Hello, beautiful people! I’m so pleased to report that we’ve raised over $1,000 for American Cancer Society’s Making Strides Against Breast Cancer Initiative!

Amount Raised as of October 28, 2020.

There’s still time to make a difference! Support a local team. Send in a donation directly to the American Cancer Society. Support other organizations that fund breast cancer research and patient support: Susan G. Komen for the Cure, Breast Cancer Research Foundation, American Association for Cancer Research.

Strapped for cash? There’s still plenty you can do. If you know someone going through cancer treatments, reach out. Bring food or groceries, Zoom/Skype/FaceTime and chat to give that person a bit of company and sense of normalcy. In these times, believe me, it helps. Everything, even seemingly small things, help.

Thank you!

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

Breast Cancer From Bench to My Own Bedside

Tables Turned

From the Laboratory Bench to My Own Bedside

Originally Published in VICC Momentum September 23, 2020 | Dana Brantley-Sieders, PhD

Note: This is an essay I wrote last summer. Though my journey continues thanks to residual disease and a mastectomy after I submitted the essay, the spirit and information in the essay hold true. I have hope. And I’m still working hard to fight cancer inside the laboratory and out in the wider world.

I had been studying breast cancer for more than 20 years when I was diagnosed with invasive ductal carcinoma. My professional life was filled with hours of watching tumor cells grow and spread on plastic dishes, marveling as they branched and blebbed in three-dimensional matrices, monitoring the size of lumps from spontaneous or transplanted breast tumor tissue in experimental mouse models, and if I was lucky, watching their growth slow or even seeing them shrink when a new experimental therapeutic worked in pre-clinical testing.

Over the years, family and friends had come to me for information, reassurance and comfort in the face of their diagnoses. I’d lost a close cousin to the ravages of aggressive breast cancer. She was only 37 years old.

When my mother was diagnosed with breast cancer, I emptied her surgical drains after her double mastectomy, caring for her with a toddler clinging to my leg and a baby balanced on my hip. I brought meals to a close friend who was diagnosed with stage 3 breast cancer, visiting with her as she endured chemotherapy, surgery, reconstruction, and finding her new normal while our pre-teen daughters hovered in the background, their infectious laughter a balm to the devastation wrought by the big “C.”

After all of this, I thought I knew breast cancer. Then it kicked me in my left breast and flung me, bleeding, on the curb of uncertainty. Turns out, I had a lot to learn.

When Brent Rexer, MD, my medical oncologist, walked in to my first appointment at the Vanderbilt Breast Center, he greeted me with kindness and a wry smile. “It’s good to see you again, though I wish it was under better circumstances.” I’d known Brent for years. He and his wife were classmates of mine in graduate school, and we’d crossed paths at research seminars in the Vanderbilt-Ingram Cancer Center. I’d crossed paths with many of the clinicians and providers who would become a part of my care team. I was lucky. I knew I was in great hands.

When I got cancer, I came home.

What did I learn from the laboratory bench to my own bedside? For starters, I learned that nothing, not even a career spent tackling this disease, can prepare you for your own diagnosis. I was as shocked, devastated, and numb as any woman who hears those three terrible words — you have cancer.

I learned that radiologists save lives. The radiologist who spotted the suspicious spot on a routine mammogram and later during an ultrasound examination has over 30 years of experience in the field. Because I’m a geek, I always ask to see what’s going on in any exam. I’m “that patient,” the one who’ll ask if I can look at the computer screen after a boob squeeze, à la mammography, and in the middle of having the goo-covered wand gliding over my exposed boob during an ultrasound. When I had the chance to look at my tumor and a previously detected benign lesion side by side, I realized that this radiologist’s years of training and sharp eyes (that could tell the difference between two grainy spots on an ultrasound that looked the same to me) caught one tumor before it could become immediately life threatening. We later learned that I had two tumors of the same subtype in the same breast, which is pretty rare. But we would not have caught the smaller one, which was actually growing faster, had my radiologist not spotted the larger mass.

I learned that I had the option of saving most of my breast tissue. Thanks to years of study following outcomes of patients who chose lumpectomy and those who chose mastectomy as surgical options, we know that choosing breast conserving surgery does not increase a woman’s risk for distant recurrence. There is an increased risk for local recurrence, but that can be mitigated with radiation therapy. I was fortunate enough to be a good candidate for partial mastectomy followed by oncoplastic reconstruction, which is essentially a breast reduction and lift. I’m not going to lie – it’s like being 18 again. I’m perky! Better still, it preserved sensation in my breast skin and nipples, and the recovery time was much shorter than with a mastectomy. Note: there are no wrong choices, only informed choices. The decision to keep or remove one or both breasts after a cancer diagnosis is a deeply personal one. Each individual patient must consider the options, the benefits and risks, and decide what is right for her. This was the best decision for me, and I’m glad I was a good candidate for this surgical option.

I learned that surgeons are brilliant, and by working together, they can give you back much of what you lost. My surgical team, including Ingrid Mezoely, MD, and Galen Perdikis, MD, worked together on a plan that allowed Dr. Mezoely to remove my tumors and Dr. Perdikis to perform oncoplastic reconstruction just after. A year and a half later, I am pleased with the result, like the way I look and feel, and while I’ll never be the same as B.C. (before cancer), my new normal is better than I ever imagined.

I learned that radiation therapists are some of the nicest, funniest people on the planet. My go-to coping mechanism is humor. When I came in for a dry run prior to my first radiation therapy, the technician placed several markers on my left breast in order to properly align the beam for more precise targeting of the area where the tumors were removed while minimizing potential damage to my heart and lungs. The shiny markers formed a cute little circular pattern, so I joked that we could make it into a pastie. All I need would be some glitter and a tassel. We both cracked up, and I was able to relax, hold my breath for the designated time, and get prepared for my treatment course. During those visits, I talked with the therapists and Bapsi Chakravarthy, MD, about topics big and small — kids, work, life, research, politics, favorite books and television shows, and all manner of topics that made the discomfort during the last weeks of treatment much more bearable.

I learned the depths of compassion and generosity of my colleagues, both in the laboratory setting and in the clinic. Disclosing a cancer diagnosis to your employer and co-workers can be frightening. Will you be at risk for losing your job (a reality for too many Americans)? Will your colleagues see you and treat you differently? Will moving forward be awkward, with colleagues feeling uncomfortable and at a loss for words? I was lucky and found support and comfort, with offers to help keep the research in my laboratory going while I was out on medical leave, with encouragement, and with the honor of serving as a reminder of what all of us in cancer research work for — helping patients diagnosed with cancer survive and thrive.

I learned that, having been on both the research side and patient side of the breast cancer experience, I have a unique perspective and the opportunity to help people outside of the laboratory. Scientists are very good at communicating with one another within the research community, but I believe we need to expand our efforts to communicate with the public. After all, most of us are funded by the National Institutes of Health, which is in turn supported by tax dollars. I feel an obligation to be able to explain my work and why it’s important to anyone who asks, be it my 11-year-old son or a person sitting next to me at the airport. I have a new mission: to be an advocate for science and bring science to the public, particularly when it comes to breast cancer. Sadly, 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. Knowledge is power, and lack thereof can be deadly. I can lend my voice to fighting myths and scams for the public good through speaking, blogging and writing.

I learned that there will be good days and bad days, and that it’s OK to seek help. My prognosis is great, but my type of breast cancer can recur years or decades after surgery and treatments are complete. That thought often keeps me up and night and serves as a source of worry. Shortly after my diagnosis, I worked to the point of exhaustion in the lab, at home, and on my side gig, staying up late in the name of productivity and maximizing creativity, but I wasn’t fooling anyone. I was terrified. After a year and a half of ups and downs, I acknowledged that I was not fine, and that I needed help in the form of therapy. I’m glad I did. Tackling my fears and anxieties head on has helped me be my best self, accept my new normal as a cancer survivor and focus on living the life I have with joy and purpose. And when I go back into the well of despair, as many survivors do, I now have the tools to climb back out and get back on track, which is very empowering.

Finally, I learned that I’m still learning. I have the best job as a researcher in that I get to be a lifelong learner. So many strides have been made since I entered the field, when Herceptin was first developed for HER2-positive breast cancer. Now, we have so many new tools in diagnostics and prognostics (3D mammography and OncoType DX testing), treatments (aromatase inhibitors, CDK inhibitors, and immune therapy), and amazing new treatments on the horizon. We still have so much work to do, but we are making a difference, and I am privileged to be a part of that process.

Raising Money to Support Breast Cancer Research!

October is Breast Cancer Awareness Month! As a breast cancer researcher and breast cancer survivor, I’m all about giving back and supporting the cause. In that spirit, this year I’m raising money for The American Cancer Society Making Strides Against Breast Cancer Initiative.

A set of Breast Cancer Awareness cards.

Want to help? Donate to my fundraiser and I’ll feature your survival story (or a loved one’s story) on my blog. You can make the donation in honor of someone you love who’s battled breast cancer. My fundraiser is dedicated to my mom, a 10 year survivor, and my cousin, who I lost at the age of 37 to HER2+ breast cancer.

Want something more tangible? Well, my side hustle is writing fiction, including paranormal romance and urban fantasy, which you can read all about at D.B. Sieders. I’m donating all of my royalties from October and November to Making Strides. So you can buy some books, enjoy them, and know that your money is supporting a great cause.

Covid-19 and Cancer – Self-Isolation Isn’t Just About You

On this, my second “Cancerversary,” I want to urge my fellow citizens to take this pandemic seriously, shelter-in-place, flatten the curve, and listen to scientists and health experts rather than politicians and rabble-rousers who value the economy over health and safety.

I originally submitted this as an Op-Ed to several news outlets, but in light of my upcoming surgery, the first of two thanks to Covid-19 dangers that have delayed my reconstruction following mastectomy, I decided to do a blog post. This is important. We’re all in this together, and those who choose to ignore expert advice are putting people like me in danger.

This isn’t the time to be selfish. Self-isolation isn’t just about you.

Like many Americans, I’ve been working remotely to comply with social-distancing and shelter-at-home measures. As a biomedical research scientist, I understand the particularly insidious way SARS-Cov-2, the coronavirus behind the deadly pandemic, can be transmitted exponentially through populations. Death tolls are rising. We’ve been told we need to flatten the curve, which means we need to slow the spread of the virus so we do not exceed the capacity of the healthcare system to treat severely affected patients. There are a limited number of ventilators available, a message that was driven home by Dr. Emily Porter, board-certified emergency physician and sister of U.S. Representative Katie Porter. Dr. Porter used her sister’s approach to educate the public on how exponential spread of the virus could overwhelm the U.S. Healthcare system, forcing doctors to ration resources and decide who gets a vent and who doesn’t. It’s a horrifying, ugly scenario with 1 patient in 50 getting a vent, and 49 patients left to die.

What will happen if we don’t flatten the curve and instead overwhelm the healthcare system.

Her words at sent chills down my spine. “Imagine if you had to say, ‘Oh, I’m sorry. You’ve had cancer before, so therefore you don’t have a perfectly clean bill of health, so you’re not worth saving.’” I am a person living with cancer. My surgery has already been postponed due to the pandemic. Luckily, my tumor is slow-growing, giving me the luxury of time. Many thousands of other Americans and cancer patients around the world do not have that luxury. Cancer treatments cannot be suspended during the pandemic. As I passed through the Vanderbilt-Ingram Cancer Center on my last day of work, I saw a room full of men, women, and children, some in masks, waiting for their chemotherapy treatments. On the floor below, others waited for radiation therapy, and in the hospital a block away, cancer patients were recovering from surgery. These people are not only at risk for exposure while at their appointments, they are also immune-compromised or immune-fragile due to their cancer treatments and are less capable of fighting off the virus. To put that in perspective, a portion of the roughly 650,000 cancer patients who receive chemotherapy annually, not counting those receiving radiation therapy or the host of other patients with co-morbidities, are already more vulnerable to covid-19 death. Without ventilators, an unfathomable number of these patients will likely die. If we ration ventilators based on co-morbidities like cancer, I wouldn’t get a vent if I became infected.

I don’t want to die. None of these cancer patients, or patients with co-morbidities like autoimmune diseases, obesity, diabetes, or others want to die. Can you imagine beating cancer only to succumb to a virus, knowing that your fellow humans didn’t care enough to follow measures to flatten the curve and that’s why you can’t get lifesaving ventilation? Imagine your mother, your grandmother, your child, a newborn baby, your best friend, your colleagues, and imagine life without them—knowing they are gone because the people in their communities didn’t care enough to follow the rules.

Until recently, Tennessee has had a subpar response to the pandemic. Nashville has fared better thanks to measures implemented by the mayor, but there are too many state and local communities that aren’t taking this seriously. I implore them and I implore each of you reading this: follow the rules. Social-distance, shelter-at-home, don’t go out unless absolutely necessary, and take precautions when you do. Wash your hands. Hunker down. We can and will get through this, but only if we all do our part. Please do your part so people like me don’t have to die.

Resources for Cancer Patients During Pandemic: American Cancer Society, Immuno-Oncology News, Breast Cancer News

Update – AACR and Compusystems Makes it Right

Update on previous post: Hubby replied to Dave’s email. He’s awesome, is (once again) Captain of Team D Beats C, and I hope he writes about his experiences as a caregiver and spouse of someone living with cancer someday. I also called AACR and spoke to Josh, a very nice and caring human being who agreed that the response I first received was not appropriate or kind. He asked that I forward my correspondence to him so that he could look into it.

He also expressed heartfelt wishes for me as I deal with another round of breast cancer.

Later, I received a call from Sheraine, Customer Service Team Lead from Compusystems. She offered an apology and heartfelt wishes for a speedy recovery. She assured me that there are scripted responses that are available and appropriate for cases of illness and they would make sure those responses are used in the future.

A little kindness goes a long way. I’m pleased with the outcome.

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.

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Advocacy 101 – What I Learned from Training

I learned so many new things today at Patient Advocacy Orientation! My best days are when I’m learning new things. It’s one of the things I love best about being a scientist, and it’s a great foundation upon which to build for my new work as a Patient Advocate.

What exactly are advocates and what do they do? In terms of Research Advocacy Programs, advocates are disease survivors (cancer survivors in my case), caregivers, and members of the community who provide the patient perspective to researchers to help shape the nature and direction of cancer research and patient care. Their role is critical, as they serve as a voice for patients, helping investigators tailor their research with patients concerns in mind – not just in terms of outcomes and sound science, but also in terms patient comfort, respect for patient rights and dignity, and beneficence. This means making sure the goals of research are focused on and aligned with serving patient needs and improving outcomes and quality of life.

This seems pretty intuitive, and I believe most investigators are truly committed and passionate about doing research that will make a difference, be it developing new treatments, better diagnostic tools, reducing side effects of existing treatments, and improving survival and quality of life for patients. I certainly was and am. But most investigators don’t experience what patients do – except in cases like mine where researchers become patients and survivors. My experience certainly changed my perspective, which is why I want to share what I’ve learned with both the research and survivor communities.

That mission became more urgent for me today in the face of some jarring statistics. Tennessee and the surrounding regions have some of the highest cancer death rates in the United States.

Link to source.

Comparing the map above to the map below that shows new cancer cases diagnosed by state, incidence, the frequency with which cancer occurs, doesn’t fully explain higher death rates.

Link to source.

My heart sank when I saw these data, and really drove home my privilege. I am well-educated, have a high socioeconomic status, have access to insurance coverage and some of the best health care available in the United States, and I have inside information based on my work as a breast cancer researcher.

I’m lucky. Far too many of my fellow Tennesseans and Southerners are not. My Institution and Affiliated Cancer Center serve this region. I want to be a part of better serving patients in this region, which will be a HUGE focus of my advocacy work.

What will this work involve? One of the ways I think I can be of use is by helping recruit patients for clinical trials. According to what I learned today, many promising new drugs do not make it through Phase III clinical trial testing* due to failure to accrue enough patients to sufficiently test their effectiveness. That’s such a shame and missed opportunity. Of course, there are many barriers for patient participation in clinical trials – fear/lack of understanding; lack of access due to barriers to travel/transportation, unmet childcare needs, inability to take time off work, etc.; disparities that make minority populations reluctant to participate**. While I am not in a position to combat access to trials, I am in a position to serve as a liaison between patients and clinical researchers accruing patients for trials. I can help educate potential trial participants in the process, assure them of their rights (including the ability to stop participating at any time), alleviate fears through helping patients understand the benefits and how they might be helping a great number of future cancer patients. I am also working with African American advocates and other advocates of color to understand and be sensitive to those communities, their histories, and their needs.

Those needs are great, particularly in terms of breast cancer outcomes. African American women diagnosed with breast cancer have lower overall survival rates compared to white women. Finding out why is crucial for closing the gap. Increasing African American participation in clinical trials is a key part of that process.

Link to source.

For more on cancer disparities across ethnic groups, click here.

Bottom line: I’ve got work to do, and I’m excited to work with my fellow survivors to help patients now and in the future. Interested in becoming an advocate? Here are some resources that can help! My Institution’s Advocacy Resources, How Patient Advocates Help Cancer Research: Expert Q&A, Why Patient Advocacy is Vital.

*I’ll cover clinical trials in more detail in a future post. Click here to learn more now. Phase III trials test drugs that have already been proven safe and promising in terms of effectiveness.

**African Americans remember the horrific abuses perpetrated by scientific investigators, including those in charge of Tuskegee Study of Syphilis – which resulted in hundreds of African Americans being denied treatment in order to study the long term effects of untreated syphilis