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.
Wow, I haven’t posted since January??!! Shame on me! But I’ve been busy writing, and I now have a completed draft of Talking to My Tatas: A Breast Cancer Researcher’s Adventure With The Disease and What You Can Learn From It.
It feels pretty freakin’ AWESOME! I learned so much through the research, especially about the clinical aspects and how my own experience fits with breast cancer care in the United States. I also learned more about emerging therapies, disparities, and mental health related to breast cancer.
When I started this process, I had been writing fiction for about 10 years and understood more or less how to construct a story in my genre, how to query agents and small presses, how to self-publish when a particular book or story doesn’t fit with traditional publishing, and how to write blurbs (it’s HARD), synopses (it’s TORTURE), and other things that go along with the fiction universe.
When it came to nonfiction, aside from my scientific manuscripts, I had no clue where or how to start. Fortunately, I had the amazing Alice Sullivan in my corner to coach me through the process. A long time ago in a pre-COVID galaxy far, far away, I became friends with Alice, and she sent me a guide to writing nonfiction proposals. That proved to be one of the BEST tools I had in hand when I started the process for Talking Tatas.
Unlike fiction, which requires a full, complete, polished manuscript (for the most part) prior to querying agents/publishers, nonfiction requires a proposal rather than a completed manuscript. Memoirs are sometimes the exception. What is a proposal? It’s basically a plan for your nonfiction project. It includes a working blurb, detailed outline of each chapter, what makes your book stand out from other comparable titles in the market, unique selling points, a marketing plan, your credentials (or reasons for writing the book, like personal experience), and sample chapters.
A tight, well-written, carefully crafted proposal is the key to getting an agent and a publisher if you’re going the traditional publishing route. Even if you’re not, it’s a great way to map out and organize your thoughts and to be thinking about defining your target market and how you’ll reach readers in that market. If you’re planning a nonfiction project, check out these sites for proposal essentials/how to, templates, and examples of successful proposals: Nonfiction Authors Association, Reedsy Blog, Scribe Media.
Once you write the proposal and craft a killer query letter, you start the long and arduous task of sending these items to literary agents (whom you’ve selected based on research and matching interests) and hope to get some interest. It’s not speed dating, but you’re definitely looking for a connection. Be prepared for LOTS of rejections with the understanding that it’s not personal. I repeat. IT’S NOT PERSONAL. If you take rejections personally, you’re going to have a tough time in the publishing biz. That being said, if you’re lucky enough to get feedback with a rejection, put it to good use by revising your proposal. For example, I received a lot of rejections based on the fact that my proposal was cross-genre (story of my writing life/same issue with my fiction). In Tatas, I’m blending elements of memoir with the personal story and prescriptive, which is the informational component.
Ultimately, I restructured my proposal to focus more on prescriptive and less on memoir (about 80/20), and that worked!
Once you get an agent, you’ll most likely tweak your proposal again for submission to editors, perhaps having a few drafts tailored for different editors. The submission process can also be a long, arduous process, and remember, rejections are NOT PERSONAL.
Trust me – you want an agent and editor who are super enthusiastic about your work. Someone who’s lukewarm won’t be as likely to champion you, and in this very competitive business, you need champions.
While you’re querying/submitting, you should be working to build or expand your platform. This blog is part of my platform. It gives readers information to supplement what I include in the book, to showcase my style and strengths, and to hopefully connect with readers who are likely to be interested in my book. It’s also great to network with other folks who have platforms with interests that match yours. I LOVE The Bloggess and have been lucky enough to connect with her by advertising on her blog and cultivating a relationship based on fangirling and promoting her stuff. It wasn’t so much strategic as it was OMG-I-LOVE-HER-AND-EVERYONE-NEEDS-TO-KNOW-ABOUT-HER! I also adore SciBabe, A Science Enthusiast, and Sana Goldberg, so I’ve been connecting with them.
Thanks to my day job, I’ve cultivated relationships with a lot of influential people and organizations in the cancer research field and I’m forging relationships in the patient/survivor advocacy community – of which I am now a part. All of this will help me spread the word about my book, get endorsements, and hopefully make the book a success.
It’s been one hell of an adventure! Stay tuned for more. In the meantime, I’m working on a new Screw the Woo Woo post on a “spell caster” who was recommended to me on Facebook. That one’s going to be wacky and fun. Mwahahahahahaha!
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.
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.
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.
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.
So I’m 5 months out from my mastectomy, waiting for reconstruction of my left breast, and I feel fugly. Not just ugly, but the kind of grotesque that can only come from looking in the mirror and STILL being shocked to see one nipple hanging significantly higher than the other. When I’m clothed it’s slightly better. I can shove my fake boob into my bra and sort of look balanced.
I say “sort of” because the damned insert moves around and is slightly bigger than my intact right boob, so I have to stuff the other freakin’ side with inserts from sports bras, which also move around, and I swear I can tell that I’m lopsided when I look at recent photos.
My family assures me that no one else notices, and maybe they’re right, but I notice, and it makes me self-conscious. It sucks. I also feel old. I’m coming up on my 48th birthday, which technically means I’m still middle-aged. But between the breast cancer diagnosis three years ago, two surgeries, radiation, and three years in medically-induced menopause plus estrogen suppression, I swear I’ve aged ten years.
Am I grateful to be alive? You bet! Do I feel lucky that my prognosis is great? Of course! Is every day a gift? Abso-fucking-lutely! But there are days when cancer and all that comes with it crashes down on me and I get sad, tired, and pissed off about what the big C has done to me.
I’m not alone. If you’re out there feeling the same way, you aren’t alone. We are strong. We are survivors. But we are also human and we will have bad days. And that’s okay. We can’t avoid them, and we have to endure them, but we don’t have to get sucked into the pit of despair. Here are some coping strategies I’ve found helpful. Maybe they’ll help you.
Put on some cute clothes
Fall is here, and that means it’s time to pull out those fuzzy sweaters, leggings, boots, and cute scarves. I’m self conscious about my neck and my cleavage, so scarves have REALLY helped. I’m not going out as much thanks to Covid, but I’ve made it a point, at least once a week, to put on real clothes (instead of the athleisure wear I’ve been rocking since work-from-home became a thing). I choose colors that make me feel bright and shiny, and select from outfits that I’ve been complimented on before. It helps! Those are the days when I can focus more on what I like about my body and face rather than what I don’t like. Have fun, wear what makes YOU feel beautiful, and don’t worry about the folks who say women of a certain age/weight/body type shouldn’t wear certain clothing. The only thing a woman should NEVER wear is the weight of other people’s expectations.
Have Fun with Makeup
I’ve always been pretty basic when it comes to makeup. Foundation, blush, concealer on the blemishes, and boom – done! Fortunately, I have a teen who is super creative, into cosplay, and LOVES makeup. Thanks to her, I’ve upped my makeup game and it has helped me feel pretty. A lovely sales associate at Sephora taught me how to contour, another fantastic salesperson at Ulta recommended primer and an eyeshadow pallet that I LOVE – dramatic eyes really work in the era of masks – and my teen routinely helps me out with the eye makeup game. The old barn does look better with some fresh paint!
Simple Self Care
Anything from drugstore face masks to bathbombs to nice-smelling lotion can be cheap ways to pamper yourself when you’re feeling like a wart on the ass end of a troll. Have a soak, wash your hair (especially if it’s been daaaaaaaaays), brush your teeth, put on some perfume, and treat yourself like the absolute fucking QUEEN you are. You are worth it.
Take a Freakin’ Selfie and Send it To Your Friends
I stole this one from “Everything is Awful and I’m Not Okay,” which I totally recommend you print out and post to your bedroom door. Take a selfie, send it to your friends and/or put it on social media – Facebook, Instagram, Snapchat, hell, make a TikTok video. Speaking of TikTok, get on there and find yourself some support from Your Fairy Godmother @starr_mcqeen_, Your Non Binary Uncle @thaddeusshafer, and the aggressively supportive @angryreactions. They don’t think you are pretty, precious, loved, and worthy, and awesome, they KNOW it and they’ll tell you. Your friends and social contacts will tell you you’re pretty, and you’ll believe them and feel better.
Send ME a selfie and I’ll tell you how pretty you are!
Got any other tips? Let me know. I can use all the help I can get, and I’ll share the love!
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):
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.