Cancer is a great and terrible equalizer. It doesn’t care if you’re a Democrat, Republican, Independent, or if you support other political philosophies or are apolitical. Anyone can be diagnosed with cancer. For breast cancer, access to routine screening and diagnostic imaging is critical for early detection, accurate diagnosis, and receiving treatments in a timely fashion.
It can literally mean the difference between life and death.
When breast cancer metastasizes, or spreads to other parts of the body, time is precious, and people living with metastatic breast cancer need all the financial and medical support they can get.
How can you help? There are two pieces of legislation in need of support and a federal program in desperate need of reauthorization:
The first piece of legislation, the Access to Breast Cancer Diagnosis (ABCD) Act, will reduce out-of-pocket costs for diagnostic imaging for people with health insurance. While screening mammography is normally covered, additional imaging that’s needed when something suspicious or abnormal is spotted on a mammogram can become pricey. For each of my diagnoses (initial breast cancer diagnosis and diagnosis for residual disease), I required additional diagnostic mammography, diagnostic MRI, and diagnostic ultrasound. They were most DEFINITELY medically necessary to determine that the suspicious lesions on my mammography were indeed cancer – and for past follow-up diagnostic imaging, to determine that suspicious lesions were benign. This legislation will reduce the financial burden for diagnostic imaging that can be a barrier for early diagnosis.
The second piece of legislation, the Metastatic Breast Cancer Access to Care Act, would reduce wait times for receiving Social Security Disability Benefits and Medicare. Right now, the wait time for Medicare benefits for people living with metastatic breast cancer is 5 months, and the average wait for disability is 24 months. The five-year survival rate for stage 4 metastatic breast cancer (MBC) is 22 percent, and the median survival is three years (Reference). As one legislative staffer noted when I spoke with him about the issue and the wait times, “That’s cruel.” It is. People living with MBC need medical care coverage and financial support for themselves and their families. Legislation waiving wait times for ALS and end-stage kidney disease passed, setting a precedent for this important legislation supporting MBC.
Please contact your Senators and Congressional Representative and urge them to co-sponsor and/or support these three key pieces of legislation. Feel free to copy and paste information from this blog post or use it as a script in a phone call.
I hope everyone is off to a great start – avoiding Covid, staying healthy, and finding happiness and joy wherever you can!
I’m so excited to share news about my new job with the Susan G. Komen Foundation! It may come as a bit of a surprise to those who’ve been following my blog and slices of science and life as a scientist. Why leave research? Well, I actually haven’t left research. I’m just doing a different kind of research. More on that later, but first, why the change? As with any big life decision, there were a LOT of contributing factors. Some of the most important include:
Having an Immediate Impact on Patients and Survivors
I love research, value my time in the laboratory, and appreciate every project I had the opportunity to lead or contribute to in some way. I commend and support my colleagues, especially those who will continue my projects in the lab and build on them to make great strides. Since becoming a survivor, however, something was missing for me. I hope something I’ve done in the lab makes it to the clinic someday, but there’s no guarantee. As a survivor, it’s really important to me to make a difference now. At Komen, I’ll have that opportunity. And I’ll also have the opportunity to support Komen Scholars and grantees conducting research! Since I’ll be coding funded grants (click here for more on Common Scientific Outline [CSO] codes) to capture data, which involves reading applications, I’ll also be able to keep up with the latest advances in the field – advances that I can share with my followers and readers here!
100% Remote Work
This is so great in the age of Covid! I want to protect my health and the health of my loved ones, so being able to work from home minimizes my risk of exposure to the SARS-CoV-2 virus and all its variants. Since I no longer have a commute, I’m saving on gas (and cutting my carbon footprint), can hit the ground running by simply turning on my computer and starting my work day, and I can be more efficient and focused. My furry office mates are great company, and I can eat healthier from home and carve out more time for exercise. No excuses!
Also, with 100% remote work, the job can move with me! My husband and bought land in North Carolina for our dream home last year. We haven’t been able to break ground yet due to ongoing supply chain issues and high prices (Thanks, Covid), but it will happen soon. I didn’t want to be moving while looking for a new job at the same time. Don’t have to worry about that now!
Academic Research is very rewarding and has a lot of pros: flexibility, freedom to pursue a myriad of research directions (so long as you can get funding), and being the first to make a new discovery or push the field forward, to name a few. But there are also challenges. The struggle to acquire funding and increasing competition as funding is limited creates a great deal of stress, not to mention long, long hours generating new preliminary data and preparing new grant applications. Before I left, I submitted three grant applications in the space of two months, and it took a toll on me physically and mentally. It also took me away from the things I love about research, like actually doing experiments, mentoring, networking and collaborating, and it took away so much personal time and time with my family. In academia, you’re never really “off.” You’re constantly bringing home papers to read, answering emails after hours, performing literature searches and working on manuscripts before and after dinner and family time, and often working into the wee hours of the morning. At this point in my life and career, I wanted and needed a better work/life balance – as a human being, as a parent, as a caregiver for aging parents – I needed to stop burning my candle at both ends. Komen is all about work/life balance.
Career Growth and Learning New Skills
As a Research Evaluation Manager, I’ll be tracking the impact of Komen funded research in many areas, including products like biomarkers and new drugs, clinical trials, new interventions, and career progression and trajectories for Komen-funded investigators using data collected by amazing colleagues since the early 1980s. The data are so rich and informative, a veritable history of progress in breast cancer research and milestones in treatments. I’m so excited to dig in! I’ll also be involved in adding to the data by coding newly funded grants, as well as evaluating the impact of research and programs sponsored by Komen. There are a wealth of opportunities, and I’m excited to be a part of it!
I’m also stoked about opportunities in communication and outreach! As a writer and communicator with a mission to bring accessible science to the public, this is my jam! I’m hoping to use the skills I honed from writing Talking To My Tatas to be a vocal and effective ambassador for science and liaison between researchers and stakeholders.
A Mission and Community I Believe In
The mission of Susan G. Komen is to save lives by meeting the most critical needs in our communities and investing in breakthrough research to prevent and cure breast cancer. Everyone working at Komen is 100% committed to this mission, which is patient and survivor focused. It’s not just lip service – many of the colleagues I’ve met in my first week are breast cancer survivors or have been directly impacted by breast cancer through friends, family, and loved ones diagnosed with breast cancer. I feel comfortable sharing my story and feel a deep sense of connection and common purpose when I hear the stories of my colleagues. It makes the work so meaningful. I believe in it, and I’m committed to giving it my all to be a part of the solution to the huge problem that is breast cancer.
Greetings, beautiful people! These past two years have been tough, haven’t they? Pandemic fears, economic woes, and uncertainty about the future have caused everything from low level anxiety to outright terror for so many people. I’ve experienced anxiety during each breast procedure I’ve endured over the past two years, from unilateral mastectomy of my left breast followed by physical therapy, expander fills, autologous DUG flap reconstruction surgery, and three revisions to match size and shape that included fat grafts on the left and and mastopexy plus scar revision on the right.
Of course I was anxious about anesthesia, outcome, what I was putting my body through – again – and when it might end. But I was also terrified of exposure to the Covid virus.
Then, I imagined how terrified patients undergoing chemo and radiation must feel, knowing they are at an even higher risk due to a compromised immune system. If you are one of those patients, check out these resources from the American Cancer Society.
That’s left me feeling pretty powerless, and I don’t like that feeling. What can I do? How can I help?
In addition to working in the lab, sharing my knowledge and experience, and giving to my organization, I’ve found giving to organizations dedicated to helping patients facing cancer empowering. These organizations do fantastic work. They not only fund research for tomorrow’s new treatments, they also fund initiative to help patients today. Right now.
For #GivingTuesday2021, I’ve chosen Susan G. Komen for the Cure. Like ACS, they support research, outreach and advocacy, and provide patient resources and support. And they are fully breast cancer focused, providing information and also financial assistance to patients in need – that’s SUPER important in these difficult times. SGK has supported my survivor sisters and their families, my colleagues in research, and they will continue to do so thanks to the generosity of donors.
You don’t have to break the bank to support them, either. Small donations really add up, especially with matching initiatives from partnering sponsors. In fact, donations made to SGK through December 1 have DOUBLE the impact thanks to matching. So this year, consider supporting SGK for Giving Tuesday.
Here are some other great breast cancer/cancer focused organizations you can support, many of which are highlighted in my book and many of which focus on healthcare equity and equality.
OrganizationsYou Can Support
METAvivor is an organization that supports patients with metastatic breast cancer and funds research that specifically seeks to improve outcomes for patients with metastatic disease, https://www.metavivor.org/
Sisters Network, Inc., brings awareness of the impact breast cancer has on the African American community and provides a space for African American breast cancer patients to meet, bond, and receive support while receiving cancer treatment, http://www.sistersnetworkinc.org/.
The African American Breast Cancer Alliance focuses on promoting awareness, early detection, and prevention while providing emotional and social support with culturally specific information and programs for women of color, https://www.aahafortwayne.org/.
Sisters by Choice seeks to eliminate access barriers to screenings and quality care for breast cancer, including a mobile clinic to bring care to uninsured and underserved communities in Georgia, https://www.sistersbychoice.org/.
Black Women’s Health Imperative focuses on improving overall health and wellness of African American women and girls, provides outreach and curates black women’s health data through its #WeRefuse initiative for breast cancer, https://bwhi.org/.
Latinas Contra Cancer is dedicated to creating an inclusive healthcare system for cancer care in the underserved Hispanic/Latina population, http://latinascontracancer.org/.
The Latino Cancer Institute is devoted to promoting education, services, research, and policies that impact Hispanics/Latinos in the United States when it comes to cancer, https://latinocancerinstitute.org/.
The American Indian Cancer Foundation seeks to eliminate cancer burdens of Indigenous people by improving access to prevention, early detection, treatment, and support for survivors, https://www.americanindiancancer.org/.
Asian American Cancer Support Network is dedicated to providing education, support and a diverse network of resources for Asian Americans affected by cancer, http://aacsn.org/.
Maina Foundation is dedicated to raising awareness and support for breast cancer early detection among South Asian Indian women, https://mainafoundation.org/.
The American Association of People with Disabilities is dedicated to increasing political and economic power for people with disabilities, supports access to quality comprehensive and affordable healthcare for people with disabilities as part of their mission, https://www.aapd.com/.
American Association on Intellectual and Developmental Disabilities works to protect the universal human rights of people with intellectual and developmental disabilities, supports access to quality healthcare, https://www.aaidd.org/.
National LGBT Cancer Network, an organization that provides education, support, and advocacy for LGBT cancer patients and survivors, and also maintains a directory of LGBT-friendly cancer treatment facilities, https://cancer-network.org/.
National LGBT Cancer Project, an organization providing support and advocacy for LGBT cancer survivors and supporting equal and appropriate access to cancer care for the LGBT community, https://www.lgbtcancer.org/.
Got any other organizations to add to my list? Send them my way! Please!
It’s been a while. This is my first post for Breast Cancer Awareness Month 2021, but I promise I’ve been busy in the laboratory. In the past two months, I’ve submitted grant applications to Breast Cancer Alliance, METAvivor, and Department of Defense CDMRP Breast Cancer Research Program. The first two are foundations that fund novel research projects, supporting scientists like me so we can take a chance on new projects that are higher risk/high reward and generate preliminary data for larger funding proposals. DOD supports larger research projects at both early (Breakthrough Level 1) and later (Breakthrough Level 2) stages. Fingers and toes crossed for grant funding! If you’re looking for organizations to support, I highly recommend Breast Cancer Alliance and METAvivor.
For this post, I’d like to highlight some survivor communities that have helped me and continue to help me, and to encourage patients and survivors to reach out for support. Cancer made me feel powerless. Sure, I was taking care of myself and following instructions from my surgeons, oncologist, and other providers, but they were doing things to me and for me – cutting out the cancer, managing my followup therapies, monitoring me to make sure the cancer wasn’t back, but I felt like I wasn’t (or couldn’t) do anything. That’s part of the reason I wrote Talking To My Tatas and why I started this blog. I needed to DO something.
I also needed to know I wasn’t alone. Enter other breast cancer patients and survivors. These people are some of the most generous human beings, providing support, practical advice, sharing their stories, and giving lots and lots of love to people who join this club we never wanted to be a part of but is filled with survivors in every sense of the word.
Where can you find support? Plenty of places! The Internet can be a terrible and wonderful place, and in the case of support for cancer patients and survivors, it can be a lifeline. Here are some survivor communities who’ve helped see me through on Facebook:
This is a large FB group dedicated to shared experiences and full of practical advice! I went to them when I was preparing for my mastectomy and I got a TON of tips for what to expect, what to stock up on (soft cotton camis and cardigans with pockets for surgical drains, pillows, etc.). Need advice from folks who’ve been there? Need to vent? Looking for hope? A safe place to express yourself? This is a great one!
Want to know about the latest research? Looking to connect with survivors and get involved in advocacy, or do you need information on resources from financial to physical and mental health? This group is a great place to start.
No matter your background, culture, or identity, you don’t have to go it alone when it comes to breast cancer. I encourage you to find your support network and lean on them. And, when you’re ready, be a part of that community and give your support to someone in need.
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 Oncologychallenges 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.
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!
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.
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.
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’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.
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.
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!
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.
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.