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.
For a brief, beautiful, shining moment, it was the #1 New Release in Breast Cancer and Oncology on Amazon, and I have the screenshots to commemorate it!
Want a sneak peek? Of course you do! Here’s an excerpt from Chapter 16 that deals with an exciting new development in cancer research and treatment – harnessing the patient’s own immune system to seek out and destroy cancer cells through immune checkpoint inhibitors.
I’ll also take comfort in the fact that we’re getting new weapons in the arsenal for fighting breast cancer. Antitumor immunity is the hottest thing to hit the field of cancer research since the 2001 approval of Gleevec (a game-changer drug used to treat chronic myelogenous leukemia that targets the oncoprotein product of the Philadelphia chromosome that drives the disease) and the 2006 approval of Gardasil (first vaccine targeting the human papilloma virus strains that cause most cervical cancers). Recently Frontiers in Immunology published the history of antitumor immunity efforts leading to the development of immune-checkpoint inhibitors available in the clinic today, the use of engineered T-cells taken from patients and altered to fight their cancer, and oncolytic viruses.2 I’ll go over the basics, including how antitumor immunity works and the challenges we still face in getting tumors to respond.
Before we get into how antitumor immunity works, we need to understand how the immune system works to fight infection. It’s a complex beast, but here are some basics. Your immune system functions to mount a rapid and robust defense when your body encounters a pathogen (e.g., a virus or bacteria that causes disease) in your daily life. The arm of the immune system that does this is called the adaptive immune system (figure 16.1). The other arm is the innate immune system, which includes natural barriers like skin, the tiny hairs and mucous in your nose, and stomach acid. The adaptive immune system is what antitumor immunity treatments harness. It is also altered by tumors to suppress tumor immune responses and exploited to work for the tumor. (More on that in a bit.)
The adaptive immune system works like this: Specialized cells identify a potential threat (e.g., an infection), and they carry information about that threat in the form of bits of protein called antigens to other immune cells. If the threat is credible, those immune cells get activated and fight the threat. First the specialized cells that identify a potential threat patrol your body, looking for something suspicious. Cells like macrophages and dendritic cells, which roam around various organs and tissues, find pathogens (a bacteria, virus, or other microbe that causes disease) or unhealthy cells infected by pathogens, and eat them (the fancy term is phagocytosis). Infected or damaged cells send out protein signals called cytokines as a distress call to attract these patrolling macrophages and dendritic cells. While “digesting” the bacteria or infected cell, macrophages and dendritic cells salvage proteins or pieces of proteins—antigens—that identify the bacteria or virus as “other,” and they present these to immune cells, usually in lymph nodes, which in turn mount an immune response. Macrophages and dendritic cells are known as professional antigen presenting cells (APCs).
When activated by APCs, immune cells called B-cells produce antibodies against the antigen, which can do a lot of things to fight an infection. Some antibodies neutralize the pathogen by binding it and stopping it from entering a cell. Other antibodies tag infected cells as a signal for other immune cells to come and kill them. Others coat pathogens or infected cells in a process called opsonization (meaning “the process of making tasty”), which signals other cells like macrophages to come and eat the coated pathogens or cells. Specialized B-cells called memory B-cells store the information about the antigen so your immune system can recognize the pathogen when it hits you again and mount a faster immune response.
Other immune cells called T-cells, which are particularly relevant to antitumor immunity, become activated by APCs and mount a different kind of immune response. Cytotoxic T-cells seek out and kill infected or damaged cells, and helper T-cells help activate B-cells so they make antibodies, activate cytotoxic T-cells, and activate macrophages to go eat nasty invaders and infected cells. Memory T-cells also store information about past infections to mount a rapid, strong response the next time your body sees it.
That’s a simplified but hopefully digestible explanation of immunity and the major players (there are other immune cells, but APCs, B-cells, and T-cells are the biggies).
Memory is key to protection, and memory is built by exposure to pathogens.
Put a pin in that concept for when we get to anticancer vaccines, and also remember what T-cells do for when we get to engineered CAR T-cells and oncolytic viruses.
Working out how to harness your body’s own immune system to fight cancer isn’t a new idea. It’s been under investigation since the nineteenth century. In fact, in chapter 5 we covered the way trastuzumab (trade name Herceptin), a humanized anti-HER2 antibody, targets HER2-expressing breast cancer cells for death. Herceptin and other monoclonal antibodies mimic the natural activity of antibody- producing B-cells to deliver therapies and tag cancer antigen–expressing cells for immune-mediated destruction. But it was the discovery of checkpoint inhibitors—proteins that put T-cells in a state of exhaustion and inactivity in pathways that are exploited by many cancers— that led to the first molecularly targeted therapies designed to boost antitumor immunity. Doctors James Allison and Tasuku Honjo pioneered this Nobel Prize–winning work.3
What are immune-checkpoint inhibitors, and how do they work? T- cells, particularly cytotoxic T-cells that actively kill their targets, bind to antigens on tumor cells through their T-cell receptors. But tumor cells, being the adaptable beasts that they are, can produce proteins like PD-L1 (programmed death ligand 1), which bind to PD-1 (programmed cell death protein 1), proteins on T-cells. This interaction tells the T- cell to stand down by tricking it into thinking that the tumor cell is “self” and should be protected. Signaling networks like this normally promote self-tolerance so that your immune system doesn’t attack your own healthy cells (figure 16.2). In tumors, it works by telling tumor- infiltrating T-cells, if present, to go into a state of inactivity. Drugs that target PD-L1—like atezolizumab (trade name Tecentriq), durvalumab (trade name Imfinzi), and avelumab (trade name Bavencio)—and drugs that target PD-1—like nivolumab (trade name Opdivo) and pembrozolimuab (trade name Keytruda)—are FDA-approved mono- clonal-antibody therapies that block interactions between PD-1/PD-L1 to unleash an antitumor immune response.4
Other immune-checkpoint molecules exploited by cancers include cytotoxic T lymphocyte antigen 4 (CTLA-4), the target of the first FDA-approved immune-checkpoint inhibitor ipilimumab (trade name Yervoy). Approved in 2011 for advanced melanoma, this drug had remarkable results. In fact, over 20 percent of the patients enrolled in the initial ipilimumab clinical trials (before the 2011 approval) are still alive and show no evidence of disease (NED).
There’s some incredible potential in targeting checkpoint inhibitors.
CTLA-4 is part of a cellular-signaling pathway that normally fine- tunes immune responses. CTLA-4 and a similar receptor, CD28, are expressed on two different T-cell types: (1) CD4+ helper T-cells, which help activate other immune cells to mediate adaptive immune responses, and (2) CD8+ cytotoxic T-cells, those cells that kill infected cells, damaged cells, and, if properly activated, tumor cells. Antigen- presenting cells make a protein called B7, which can bind to either CD28 or CTLA-4 on T-cells, and the effects on T-cell function are very different depending on what B7 binds. If it binds to CD28, B7 activates T-cell responses as a part of a complex of proteins that includes the T-cell receptor. Binding of B7 to CTLA-4 shuts down T- cell functions. CTLA-4 probably serves as protection from self-antigen recognition by inducing immune suppression, since laboratory mouse models engineered to not express CTLA-4 die from autoimmunity. This is the aspect of CTLA-4 function that gets highjacked by tumor cells. Drugs like ipilimumab block the suppressive activity of CTLA-4, which can allow T-cells to attack tumor cells.5
Here’s the kicker: The tumor actually has to have infiltrating T-cells for this to work, and not all tumors do. Tumors with T-cells that can be activated to fight the tumor are called “hot,” whereas tumors without T-cells are “cold.” One of the most aggressively researched topics in tumor immunology right now is how to make a cold tumor hot and thus responsive to antitumor immune therapies.
This is especially important for breast cancer, since most subtypes produce cold tumors. Right now, immune-checkpoint therapies are only approved for advanced triple-negative breast cancers that make the PD-L1 protein. Not all triple-negative breast cancers make PD-L1. Ongoing research is looking to expand the use of immune therapy in inflammatory breast cancer and the HER2+ subtype.6 Hopefully, with more research, we’ll figure out how to make more tumors responsive to immune therapy by making them hot (full of T-cells) and by discover- ing other immune checkpoints that can be targeted.
3. Heidi Ledford, Holly Else, and Matthew Warren, “Cancer Immunologists Scoop Medicine Nobel Prize,” Nature, October 1, 2018, https://www.nature. com/articles/d41586-018-06751-0.
4. See American Cancer Society medical and editorial content team, “Immunotherapy for Breast Cancer,” Treating Breast Cancer, American Cancer Society, Cancer.org, last revised December 3, 2020, https://www.cancer.org/ cancer/breast-cancer/treatment/immunotherapy.html.
6. Devon Carter, “Does Immunotherapy Treat Breast Cancer?” MD Anderson Center (website), University of Texas, March 26, 2021, https://www .mdanderson.org/cancerwise/does-immunotherapy-treat-breast-cancer.h00 -159385101.html.
I can’t believe I have to write this post. I’m shaking my head and weeping for the future of humanity as I write it. Are people really stupid enough to believe that ivermectin – a drug we use in our laboratory mice to treat pinworms (butt worms) – can cure Covid?
Yes (sadly). Yes, they are.
Ivermectin is used to treat butt worms in animals. It can also be used to treat roundworms in people. It works by paralyzing worms, specifically by binding to proteins on motor neurons (nerves that tell muscles to move) and disrupting their activity. It also mucks around with the ability of nematode worms to reproduce.
Fun fact: the naturally occurring analogs of ivermectin, avermectins, were discovered in bacteria from soil samples collected by Dr. Satoshi Ōmura from woods near a golf course in Kawana, on the south east coast of Honshu, Japan. The name “avermectin” reflects the activity of these compounds, making treated organisms “worm free.” Dr. Ōmura and Dr. William Campbell shared the 2015 Nobel Prize in Physiology or Medicine for this discovery. You can read more about that here. Ivermectin in pill form can be used in humans to treat parasitic worms, and topical (on the skin) formulations are also used to treat head lice and rosacea.
It does actually have other, non-butt worm related activities that include treatment of severe muscle spasticity in patients with spinal cord injuries and shows activity against leukemia in laboratory animal models. It may also target molecular pathways relevant to treatment of other cancers, including lung and colon cancer and glioma based on laboratory animal studies, and could block inflammatory T-cell activity in atopic dermatitis, relieving irritation. A recent review covers the research on these applications.
Okay, given these other potential applications, I guess I can kinda sorta see why some folks without a science background might be buying into the idea of using Ivermectin to treat Covid, but(t) still…
This apparently became trendy because of ongoing clinical trials designed to test the efficacy of Ivermectin for Covid-19 treatment and prevention, alone and in combination with other drugs.
Why? Because laboratory studies (in petri dishes in a lab, NOT in people) have shown that Ivermectin can inhibit viral replication, which means it can stop the virus from making copies of itself, which is how it spreads. In vitro. In vitro means “performed or taking place in a test tube, culture dish, or elsewhere outside a living organism.” Plenty of other previous studies showed that ivermectin blocks replication or interferes with the production and spread of other viruses, including HIV, Dengue virus, West Nile virus, and a few others. In vitro. You can review some of these studies here. In spite of these in vitro studies, there is no evidence that ivermectin has any anti-viral effect on the SARS-CoV-2 virus that causes Covid-19. For a link to clinical trial data, click here.
And misuse of ivermectin can be dangerous. According to theFDA,“Even the levels of ivermectin for approved human uses can interact with other medications, like blood-thinners. You can also overdose on ivermectin, which can cause nausea, vomiting, diarrhea, hypotension (low blood pressure), allergic reactions (itching and hives), dizziness, ataxia (problems with balance), seizures, coma and even death.”
The best way to limit the spread of SARS-CoV-2 is to get the vaccine. Period.
And Now for the PSA I never thought I’d have to make…
About the whole so-called “urine therapy” thing – something I never in a million years imagined I would blog about. It isn’t a thing. Apparently, some anti-vaxx conspiracy theory wingnut named Christopher Key has been encouraging his followers to drink their own urine to ward off the SARS-CoV-2 virus instead of getting vaccinated.
For the sake of being thorough and due diligence, I performed a PubMedsearch for “urine therapy covid” on January 16. The search produced 188 results, most dealing with the effects COVID-19 on kidney function, studies related to the potential spread of the virus through urine (risk reported to be negligible), urine-based COVID-19 testing and analysis of cytokines and other diagnostic markers, and testing for SARS-CoV-2 in waste water.
The funniest result was a paper with the title, “Influence of perceived threat of Covid-19 and HEXACO personality traits on toilet paper stockpiling” published inPLoS One.
This one was more sad than funny, but apparently some folks in India are using cow dung to treat COVID-19. People…rubbing animal shit and urine all over your body isn’t effective at treating ANYTHING and is likely to expose you to a whole lot of nasty zoonotic (spread by animals) diseases. Plus you’ll stink. Just…don’t.
You know what I didn’t find in my literature search? I didn’t find a single peer-reviewed study endorsing the use of drinking your own piss as a treatment for COVID-19. Zero, zip, zilch, nada – no evidence to back up this ridiculous claim.
Not that the crazies need silly things like evidence. This actually fits quite nicely with the all-natural woo woo trends. Can you picture it? All natural, locally sourced, sustainably harvested on tap pee pee for your health needs! You’ve heard of eating placenta (don’t do that, either), but why stop there? Drink your pee! When it’s fresh, it looks like a beer.
Sure doesn’t taste like beer. Stick to drinking nice, cold brewskies, and get your vaccine. Please.
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!
Sometimes, if you’re lucky, something comes into your life just when you need it the most. That was my introduction to The Bloggess (aka Jenny Lawson aka Amazing/Funny/Fabulous human being). I LOVED her first book, Let’s Pretend This Never Happened (A Mostly True Memoir), gifted to me by my BFF. If you haven’t read it, treat yourself. Her other books are just as poignant, engaging, and hilarious. They’re like Pokemon – gotta catch them all! Or maybe potato chips – betcha can’t read just one. Something like that.
Better yet, grab the Audiobook! Jenny narrates it, and the humor and heartache and hope just flows from her voice directly to your brain cells, releasing serotonin and making you feel better no matter what you’re going through. Which brings me back to my first point – the something-that-comes-into-your-life-just-when-you-need-it-the-most point:
The day I endured two breast biopsies was a bad day. It would have been worse without Jenny, who allowed me to escape into her world and kept me company while I was waiting to go on the slab. And guess what?
SHE FOLLOWED ME BACK ON TWITTER!!!!
This was the highlight of my year, people! It also kept me going and inspired me while writing Talking to My Tatas. Jenny’s story touched and inspired millions, and she’s saved lives, y’all! I wanted to do the same. Whenever I got frustrated, stuck, or wanted to just give up on the writing, querying, and rejections, I remembered Jenny.
Fast-forward to the present, and guess what? Jenny Lawson endorsed my book!
“I don’t know much about cancer, but I know good writing and humor, and Dana Brantley-Sieders has those in spades.” — Jenny Lawson, #1 New York Times-bestselling author of “Let’s Pretend This Never Happened”
I’m delighted, grateful, and I’m totally going to stalk visit her at The Nowhere Bookshop someday soon. Thanks, Babe!
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.
I am so fortunate to have the support I do for this project, from fellow survivor sisters to a leading expert in the fight against cancer. Shout out to the incomparable Dr. Alice Randall, the amazing Cynthia D’Alba (a.k.a. Dr. Cynthia D. Morgan, EdD), and Dr. Lynn Matrisian for taking the time to read the uncorrected proof of Talking to My Tatas and providing such outstanding endorsements!
“Reading Talking to My Tatas is a little like discovering you have a wise and funny friend who is an expert on breasts and breast cancer and is willing to talk through your worries anytime of the night or day. This is the book I wish existed when I was diagnosed with breast cancer. Don’t send a casserole. Send Talking to My Tatas.”
—Alice Randall, professor and writer-in-residence, Department of African-American and Diaspora Studies, Vanderbilt University
“Talking to My TaTas contains the factual information that all newly diagnosed breast cancer patients need, but presented in an easily understood, and sometimes humorous, style that will appeal to non-medical as well as medical breast cancer patients. Talking to My Tatas is a deep dive into the personal world and experiences of a breast cancer researcher and survivor who isn’t afraid to pull back the curtain on breast cancer reality. The author does a credible job debunking myths, falsehoods, and junk cancer therapies, leaving the authenticity only a person steeped in cancer research and cancer treatment can. As a two-time breast cancer survivor, I can recommend this book unreservedly.”
—Cynthia D’Alba, New York Times and USA Today bestselling author, breast cancer survivor, 2016 and 2021
“Informative, witty, and engaging, Dr. Brantley-Sieders effectively combines her scientific training and her personal experience to tell it like it is.”
—Lynn M. Matrisian, PhD, MBA, Chief Science Officer, Pancreatic Cancer Action Network
These women represent my two worlds: survivor/advocate and scientist. Both of these worlds have shaped me and made me who I am, as have these incredible human beings who’ve their support to my work. I am forever grateful!
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.
Talking to My Tatas: A Breast Cancer Researcher’s Adventure With The Disease And What You Can Learn From It is scheduled to be published February 8, 2022!
On. My. 49th. Birthday.
I’m not one for signs, but this is the second serendipitous date associated with this book baby so far. The first was getting the offer for publication from Rowman & Littlefield on November 5 of last year, the same day I was in surgery for the first step in my left breast reconstruction. This is the second. I am filled with joy and delight!
What’s next in the process? Now that I’ve turned in finalized chapters and other components of the book with edits in response to super helpful comments and notes from editor Suzanne Staszak-Silva (shout out to my amazing literary agent Barbara Collins-Rosenberg for giving me edits and notes prior to sending them to Suzanne), the manuscript enters the production phase. I’ll be receiving notes from the Production Editor, completing any revisions, going through proofs, reaching out for endorsements – shout out to the folks who already said, “Yes, send it to me for an endorsement!” – and planning for the release and promotion.
I cannot WAIT to see the cover!
I also cannot wait until this book is available to the public, including the hundreds of thousands of newly diagnosed breast cancer patients, current patients, survivors, and caregivers. If I can help even one of those people – my survivor sisters and brothers – by informing them, inspiring them, helping them cope, or giving them a much needed laugh, then I will have accomplished something really special.
This book will also help me develop a guide for newly diagnosed breast cancer patients at my institution, another labor of love.
I send love and gratitude to all of the mentors and colleagues who’ve made me into the scientist I am today, my healthcare team for saving my life and helping me thrive, and my family for being my strength and limitless supply of love.