The Benefits of Community

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.

Photo credit Deposit Photos.

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:

Breast Cancer Straight Talk

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!

Finding Humor After Breast Cancer

Laughter is one of the best weapons we have when it comes to cancer, and you’ll get plenty of laughs from this group. Lots of boob humor. Check them out!

American Cancer Society

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.

Breast Cancer Atheist Support Group

Looking for a support community that welcomes patients and survivors outside of majority faith communities? This one is super helpful and supportive!

Not big on social media? Ask about support groups available through your medical center. Check out your local Gilda’s Club – just be sure to follow safety guidelines for Covid-19. Need a support community for African American breast cancer patients and survivors? Check out Sisters Network – they provide a space for African American breast cancer patients to meet, bond, and receive support during treatments. Similar organizations tailored to the unique needs and experiences of other communities of color include: The Latino Cancer Institute, The American Indian Cancer Foundation, and The Asian American Cancer Support Network. Support for LGBTQIA+ cancer patients, including a directory for LGBT-friendly cancer treatment facilities, can be found at The National LGBT Cancer Network.

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.

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

Photo credit Deposit Photos.

A cancer diagnosis affects all aspects of a person’s life, and that includes employment. Coupled with the astronomical cost of cancer healthcare, especially for the un- and underinsured, the short and long term impact of cancer on financial stability and employment can be disastrous. If you are female, a person of color, disabled, and/or LGBTQIA+, these negative impacts are very often compounded by sexism, racism, ableism, and homophobia.

The stigma is real*.

Sexism, racism, discrimination, and other biases make working, maintaining productivity, and feeling valued for your work much more challenging in the face of cancer. I’ll cover some of those challenges in this post, as well as protections in place within the United States to alleviate them (with the caveat that we need more), and additional policies and protections that we could implement to protect and support cancer patients and survivors in the workplace. I’ll focus on breast cancer, but many of these challenges and solutions apply to people diagnosed with other types of cancer.

What are some of the challenges cancer patients and survivors face when it comes to work and careers? According to a recent study published in the Journal of Clinical Oncology challenges like job loss, decreased earnings, and increased spending (the last two described as “financial toxicity”) are some of the greatest. It seems like a no-brainer: if you lose your job or part of your income plus healthcare coverage while the medical bills for treatments pile up, you’re not really surviving all that well financially, let alone thriving. But we like and trust peer-reviewed data here, so let’s look at data.

The Problems

Click here to link to source.
  1. Financial distress caused by job loss/lost wages not only makes you feel worse, it has also been linked to “increased symptom burden and emotional distress and to decreased quality of life and treatment adherence.” In other words, if you’re strapped for cash or you’re suffering from the mental health effects of a cancer diagnosis without resources, you’re not as likely to be treatment or medication compliant. That leads to poor outcomes. Worse, cancer patients are more than twice as likely to file for bankruptcy after diagnosis, and bankruptcy is associated with almost double the risk of death among survivors.

That’s the biggie, and adds insult to injury. You have to pay for your treatments in order to live, but you may have to go bankrupt to do it, which increases your risk of DYING!

2. The scope is significant. Around 45% of people diagnosed with cancer in the United States are working age (20-64). This affects a LOT of people, y’all!

3. Many, if not most, people diagnosed with cancer do not have the means, privilege, or opportunity to take leave, paid or unpaid, for treatments, even under the Family and Medical Leave Act (FMLA). In fact, only 21% of low wage workers have access to paid sick leave. And for many workers who do, there aren’t protections in place to make certain they can return to their jobs following treatment. The Americans with Disabilities Act (ADA) provides protections for cancer patients against workplace discrimination and requires employers to make reasonable accommodations to allow cancer patients to continue to work, but it only applies to employers who have 15 or more workers. And a significant percentage of low wage workers are employed by small businesses that are exempt from FMLA and ADA requirements.

These are the same essential workers we’ve failed as a nation to support during the global pandemic.

4. Aside from concrete challenges, the mental and emotional health costs of a cancer diagnosis can reduce social engagement and a patient’s sense of self worth. I work as a cancer researcher and a cancer center, have a TON of privilege, and even I’m not immune to these challenges*. If I’m not, imagine how awful it is for patients and survivors with fewer resources and protections.

5. I cover disparities related to cancer care, outcomes, and financial toxicity in my book, but suffice to say, if you are female, not white, not able bodied, and not straight, you are likely to disproportionately experience all of these challenges on a much more significant level thanks to racism, sexism, homophobia, and ableism.

Existing and Future Solutions

In addition to FMLA and ADA protections (for those who qualify), many non-profit organizations offer financial assistance to cancer patients. Funds are available from Susan G. Komen for the Cure, the American Cancer Society, Young Survival Coalition, and other organizations, many of which I cover in my book, that can be used to cover the costs of treatments, bill pay, home health care and childcare, and a variety of other expenses.

Photo credit Deposit Photos.

But to truly and comprehensively tackle this issue, we need systemic changes. Some of the more so-called “progressive” solutions, like universal healthcare coverage, tend to be met with skepticism or outright hostility from free-market (*cough, cough – rich, white conservatives – cough, cough*) advocates who complain about lack of “personal responsibility,” think the current system works just fine, and/or think vouchers for purchase of private insurance and other non-government solutions work better (even though universal healthcare works very well in most other industrialized nations).

Aside from universal healthcare, there are other initiatives that have worked in other nations that might appeal to conservatives while making a significant impact on job retention and financial stability for cancer patients and survivors. For example, as noted in the Journal of Clinical Oncology Society study cited above, “A 2012 systematic review evaluated the effectiveness of government policies in place from 1990 to 2008 in Canada, Denmark, Norway, Sweden, and the United Kingdom to change employer behavior with regard to return to work. The most successful policies included financial incentives for employers to hire people with disabilities; flexibility and adaptations in the work environment, particularly with flexible schedules and giving employees more control over work demands; and programs that involved employers in return-to-work planning.” These incentives benefit everyone, including employers, patients/survivors, and society as a whole.

Patient-oriented interventions that tackle physical, psycho-educational, and/or vocational portions of cancer patients’ employment retention were associated with higher return-to-work rates compared to patients who received standard care. And patients who received this type of multidisciplinary intervention “experienced a significant increase in perceived importance of work, work ability, and self-efficacy with regard to returning to work, and return to work was 59%, 86%, and 83% at 6, 12, and 18 months, respectively.”

It’s going to take a lot of work in the form of political will, advocacy, legislation, and incentives to solve this problem. What can you do to help? Contact your elected officials and voice your support for programs that support cancer patient financial stability and access to reliable and affordable healthcare, job retention, and return to work with appropriate accommodations. It’s the right thing to do, and it’s good for the economy, society, and humanity.

If you’ve experienced workplace discrimination based on your status as a cancer patient/survivor, click here for information about your rights and what you can do to protect them.

*Story Time

You’d think being a cancer researcher who works at an academic institution dedicated to cancer care, research, and saving and improving the lives of those diagnosed with cancer, I’d be immune to the bullshit discussed above.

In many ways, I am. Thanks to a supportive Department Chair and Division Chief (both female), I was granted an extension on my tenure clock, additional discretionary funds, and professional/personal support from my (largely female) colleagues. To these individuals, I see you. I appreciate you. I love you.

Then there are the (largely male) colleagues who have made my experience working while undergoing cancer treatment and returning to work after the Covid-19 shutdown and a (very short) medical leave a lot shittier. My passion for breast cancer researcher didn’t diminish when I was diagnosed. I became MORE passionate! I worked through radiation treatments, horrible systemic therapies while trying to find one I could live with for 10 years, and after surgeries when I remained swollen, sore, fatigued, and mentally struggling with all of the emotional fallout associated with cancer.

And yet…a peer reviewer for a grant I submitted felt the need to make the following comment in his (I’m 99.999999% certain it’s a dude) review summary: “Dr. Brantley-Sieders is an Assistant Professor of Medicine…who completed her Postdoctoral fellowship in 2003. A concern is her lack of productivity, with only a single first or last author publication since 2017, and only 4 in total since 2012. That said, as noted in her letter of support by [DEPARTMENT CHAIR], she is a breast cancer survivor and there may be circumstances that underlie her less than optimal extent of productivity.”

First of all, it’s not true. I had and have more first/senior author publications since 2017 and 2012. In fact, I have published over 55 papers in high tier journals, which demonstrates my highly collaborative approach to science. Secondly, WHAT THE ACTUAL FUCK??? This reviewer thought it was okay to weaponize my own breast cancer diagnosis on a grant I submitted to a BREAST CANCER RESEARCH ORGANIZATION in the presence of other BREAST CANCER SURVIVORS serving as consumer reviewers. But, since my application wasn’t de-identified, and with my hyphenated last name (for which I’ve received inappropriate feedback about), this reviewer felt entitled to pose this outrageous and untrue criticism on an application by a female scientist.

Rather than hiding in a corner to lick my wounds, I reported this to the organization starting with leadership. Was it a risk? Of course! Backlash and retaliation are always a risk, especially for women who dare to speak out. But, if I stayed silent, I would have become part of the problem. I refuse to do that. I’ll be part of the solution.

I’m in the middle of another situation with a colleague I once trusted (my mistake) that centers around perceived shortcomings related to how I am balancing my work and ongoing treatments. What started as a communication issue is rapidly escalating into something more serious. At best, it’s a problematic situation. At worst, it may represent a serious violation of policy. I hope to resolve it in a way that is fair and satisfactory to both parties, but the damage is done in terms of trust and my perceived value to the project. Again, I could just sit quietly and accept it, but I’m not going to be part of the problem. I’m a fighter. I’m a damned good researcher who has made and will continue to make valuable contributions to science, and I’m worth it.