Breast Cancer Patient

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

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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*.

Photo credit Chronic Disease Coalition.

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!!!!

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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

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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.

Breast Cancer From Bench to My Own Bedside

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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.

Breast Cancer Care in the Era of Covid-19

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It’s been a while! I’ve taken time to recover from my mastectomy (will blog about that later) and, like many folks in self-isolation, I’ve been doing things like gardening, cooking/baking, home improvement, and family activities to fill the time. I waver between being grateful, bored, peaceful, restless, and generally anxious about the immediate and long-term future.

Photo Credit Deposit Photos

And, like many other people battling cancer in the midst of the pandemic, I’ve been dealing with uncertainty about my ongoing treatments on top of the “normal” concerns. I’ll get to my specific case in a bit, but first we’ll go over highlights from a recently published article.

How has cancer care changed in the era of Covid? A recent article from the New England Journal of Medicine provides insight into some of the challenges for breast cancer care. The article is part case study and part discussion of alternative approaches to cancer care designed to mitigate risks of cancer patient exposure to SARS-CoV-2 in healthcare settings. These include delays in surgical tumor removal in some cases where rapid growth/progression of the tumor isn’t a significant risk. One interesting approach is the use of neoadjuvant (a fancy term for treatment before surgery) endocrine therapy (a fancy term for use of estrogen hormone blocking agents like tamoxifen and aromatase inhibitors). As discussed in the article, the advantages of this approach for hormone receptor positive breast cancer include: 1) shrinking the tumor before surgery and improving chances of getting clear margins (no extra tumor left behind after surgery); 2) making breast conserving surgery a safer and more aesthetically pleasing option; 3) giving more time for genomic testing (e.g. OncoType DX – will blog about this later, too) results to come back; 4) determining sensitivity of the patient’s tumor to estrogen suppression, which can also help with the decision whether or not to add chemotherapy.

Photo credit Deposit Photos

The downside, of course, is that delayed surgery and neoadjuvant endocrine therapy require more monitoring (examination, imaging, biopsy, etc.), which takes place in healthcare settings and increases the risk of exposure to the virus. With chemotherapy, which targets rapidly dividing cancer cells (along with hair follicles, cells lining the gut, and immune cells), the risks for exposure to coronavirus is especially problematic as patients are rendered immunocompromised (unable to fight off infections with the body’s natural defenses) or immune fragile (less able to fight off infections). Approaches to mitigate these risks are discussed in the article for hormone receptor positive breast cancer as well as HER2+ and triple negative subtypes. It also discusses ways healthcare providers can and should effectively communicate with patients about treatment decisions and risk management.

Communication – this is an ongoing issue with my care. There are many factors, not the least of which is Covid-19, but we’ve had some…confusion about the schedule for reconstruction following my mastectomy (Note: the surgical team managing my case are PHENOMENAL at what they do, but in both cases, communication with me has not been on par with their skills). When we first scheduled the mastectomy, we also discussed which option might be best for reconstruction and settled on a TUG flap autologous reconstruction. This will involve using a flap of skin, fat, muscle (transverse upper gracilis), and blood vessels from the upper thigh is used to reconstruct the breast. It is a rather involved surgery, which includes microsurgery to reattaches the blood vessels of the TUG flap to the blood vessels in the chest. The nature of the grafting procedure means close monitoring to make certain the graft has sufficient blood flow to survive and thrive, and therefore requires a one night stay in the ICU.

An ICU stay in the era of Covid-19 is a risky and scary prospect!

Because of the risks, my plastic surgeon called and suggested we postpone reconstruction (could have theoretically been done immediately after mastectomy) to minimize the risks of exposure to the coronavirus. That made perfect sense and I agreed. During this conversation, he mentioned reconstruction 6-8 weeks following mastectomy (scheduled for May 11 – meaning reconstruction around June 22 – July 6).

Credit Deposit Photos

This did not happen. I *think* what happened was a change in timeline due to the need for an expander implant after surgery – this serves as a temporary, fillable implant that can stretch the skin in preparation for reconstruction. I had a skin/nipple sparing mastectomy (glad the nip made it – it was dicey for a week or so), and the expander sat underneath the skin. With an expander, weekly injections into the port with saline gradually increases tension on the skin and stretches it. When I first started expansion, there was talk from the doctor about reconstruction in August.

This did not happen. I *think* it’s because the doctor forgot to let me know that there’s a three month waiting period between the last expansion and reconstruction. Right now, as far as we know, I’m looking at reconstruction around the end of September/beginning of October.

I hope this happens. Again, healthcare providers and patients must be flexible during the pandemic. I trust that my team will make the safest decision about reconstruction.

I just kind of hope they keep me in the loop!

Update – AACR and Compusystems Makes it Right

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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)

/ D.B. Sieders / 4 Comments

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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