My Experience with Young Metastatic Breast Cancer: Systemic Disparities and Financial Challenges

Surviving Breast Cancer
3 minutes ago
9 min read

By Shantana Watkins

Greetings, my name is Shatana Watkins. I am from Indianapolis, Indiana. I am divorced with no children. I am a 46-year-old African American woman living with stage IV advanced-stage hormone receptor-positive (HR-positive), HER2-negative breast cancer. I did recognize some of the initial signs of my cancer in my breast years before I was able to address it. I made the discovery by self exam in 2010. I was eventually diagnosed in April 2021. Since then I have learned of the advancement of my cancer.

The cancer has metastasized to my right lung, rib cage area, as well as a small mass in the right side of my brain. The result of the one round of radiation to my brain has been necrosis found in that area. I have had ten rounds of radiation to my breasts, along with a mastectomy. I continue my chemotherapy treatments with various medications including everolimus, abemaciclib, tamoxifen, and letrozole. I also have a port for easier access for blood draws and chemotherapy treatments. At this time, I continue my routine health care plan as prescribed by my oncologist.

I have spent the majority of my time taking care of my mother, who struggled with her own health issues, which in turn caused me to neglect my own health. I was my mother’s primary care provider from August 2006 until she passed away in December 2020, during the Covid-19 pandemic. I lost my father in 2013; he was not aware of my condition.

I did not want to neglect the care of my mother as I am an only child. I did not share any of my health information with my mother; I never wanted her to worry about me and I continued to place all my focus on her wellbeing until she passed. I also did not share my diagnosis with my closest friends or the rest of my family, until I could no longer care for myself, and needed additional support. I did not want to place any worry or stress on them as they have their own lives to live.

In 2014 I obtained my Associate’s degree in business and in 2016 I obtained my Bachelor’s degree in management from Indiana Wesleyan University. My father instilled in me that education is very important, so I made certain to obtain my education and to continue to learn as often and as much information as I am able to.

Living with metastatic breast cancer has caused me great physical, mental and financial toxicity. The mental and physical stress of worrying about finances has taken its toll. I am struggling to make ends meet as the cost of living is steadily increasing. I have attempted to find various resources to help fill the gap in what I am lacking, but most do not assist with daily costs of living and other financial obligations that most adults have.

I have worked all of my adult life and I currently receive monthly disability payments. While I am thankful for the amount I receive, I can barely afford to meet my other financial obligations. When employed, I have been without health insurance through my employer for cancer treatments as it was unaffordable. I also had to toggle between missing work or neglecting my chemotherapy treatments so I would not miss any work days. For the weekdays that were missed, I made up for it on weekends.

Women with financial hardships can furthermore face challenges in completing comprehensive multidisciplinary breast cancer management, because the frequency of treatment visits will generate costs related to transportation, childcare, and time away from work. The level of care should also be a focus for those in assisted living facilities and should also be investigated more often than what I have seen in my recent experience. Those who reside in such places may not have a voice in their care or they may not have a family member to voice their concerns. In some cases, residents may be taken advantage of mentally, physically and financially.

In 2023, I had to move to another city in Indiana (Kokomo), as I was no longer able to live alone. I lived with a close friend for two years until she was no longer able to assist in care for me due to her full-time workload and parenting two children.

After a recent hospital stay, my friend decided it was in my best interest to seek a nursing facility in the area. I stayed at this facility from January 2025 to August 2025. I did not select this facility, this was decided by my friend. During this time, there were issues in coverage between Medicaid and Medicare. The coverage between the two can be difficult to understand. During my stay at this facility, I experienced many issues with communication, accommodations, care plan management, social services, nutrition, and more.

As I was trying to find a different assisted facility closer to my family, there were issues with locating a place that would accept me due to my age. I have learned that most assisted facilities are mainly geared to those who are 55+. I have also learned that the majority of assisted living coverage and acceptance is focused on that of 55 or older.

I wanted to share my experiences as I would like to find more information on funding for those of us who are under the age of 55, but also have major health issues. Medicare is not an option for me because of my age, but I do have a terminal health diagnosis that should qualify myself and others who may face the same struggles.

Many individuals fall into a gap where they cannot afford private health insurance, yet their income levels via disability payments are too high to qualify for government-supported insurance. No human being should have to decide on whether or not to seek medical care or to suffer in silence over the concern of unknown expectations, treatments, or just general care.

I have spent these past years trying to not only deal with my health, but being constantly hounded to pay for treatment “not covered” with funds I do not have. The last thing a patient wants to hear when seeking treatment or waiting for test results is “You have a current balance of…”

I understand that some costs will apply in some cases, but at the same time, how can a person who already has a limited income be expected to take care of their other needs on top of making countless doctor visits that will ultimately result in another financial obligation? It is a vicious, never-ending cycle.

Most younger adults have financial obligations such as car and car insurance payments, credit card payments, cell phone payments etc. I am also having issues in locating housing and financially setting myself up to transition to a different location outside of an assisted facility situation because of the lack of my own “income” I am allowed to have.

I find myself feeling stuck in an assisted living place for the remainder of my days. This has taken a mental and social toll on my overall well-being, in addition to living with my breast cancer diagnosis. I am currently in a position in which I have completed physical therapy expectations and am hoping to be discharged from the healthcare facility I am currently in.

The biggest issue I have faced in trying to transfer to another assisted living facility is the denial from many facilities due to my age. There is a need for a healthcare program for those younger than 55. There is a desperate need for facilities that can and will accept and assist those who might not be ready to the normal standard of assisted living, but need the additional support with whatever severe illness they are facing.

Another concern I have faced is challenges in attempting to regain full financial independence due to my entire disability income being already directed to a healthcare facility. An ongoing issue I am facing is the ability to leave the healthcare facility, as I am unable to financially do so. It is important to add that I am fully able to care for myself at this time, and have only received assistance with meals and medication distributions, which are things I can handle and control myself. I do not require assistance with bathing, dressing, or taking care of my room with cleaning and upkeep.

The current facility does not provide transportation as often as I need it, which has resulted in me dealing directly with my patient navigator in setting up transportation for future appointments. While trying to depend on the help for the healthcare facility I am currently in, I have been asked to reschedule my chemotherapy appointments as there was a lack of communication between the chemotherapy office and the healthcare facility. In turn, I have had to mediate and correct the lack of communication to insure I would not miss any appointments going forward.

Breast cancer, as well as other cancers impacting both men and women, can occur at any age, regardless of race. Being under the age of 55 does not mean those individuals cannot face any major health concerns such as cancer. How can the gap of coverage between Medicaid and Medicare meet to where the recipient can keep more of their monthly benefit that they have spent most of their life working for? How can more assistance be offered through grants regardless of race or gender? Where can those who are under the age of 55 find residency for support and care?

I have found there are a lot of disparities in the care received between African American women and those of other races. I have researched grants specifically for African Americans in general and did not receive many results.

The American Cancer Society states that breast cancer is the leading cause of cancer death in the U.S. for African American women. They are more likely than white women to have inadequate health insurance or access to health care facilities, which may affect screening, follow-up care, and completion of therapy. Compared to other racial/ethnic groups, Black women are more likely to be diagnosed with breast cancer at a young age (under 45) and at later stages of the disease, when it is more difficult to treat. Black women continue to die of breast cancer at an alarming rate of more than 40% as compared to white women.

Unemployment rates are higher in the African American community compared with the White American community; this disparity persists during times of economic strength and is magnified in the setting of financial stresses. Socioeconomic disparities undoubtedly contribute to the 40% higher breast cancer mortality rates seen in African American women by causing delays in diagnosis and more advanced-stage distribution compared with White American women.

Increased access to free or low-cost mammograms can help close the gap and ensure more Black women get timely breast cancer screening.

I want to be very candid with my care, as had it not been for the care of my patient navigator, nurses and aides at St. Vincent Hospitals as well as Dr. Deng Zhang with the Hematology Oncology of Indiana over the years, this journey would have a completely different ending.

While I have had many good experiences with these providers, I still feel there is a lack of empathy from some. We are seen as only patients and not as human beings. There is a need for a reminder to those who serve to be kind, we all have a battle that others know nothing about.

I want to share positivity and a small token of hope. I have continued to survive with this illness due to their care and my faith in God. As I am today, at first glance, someone who does not know me personally, would have no idea what I have experienced and what I continue to face on a daily basis while still surviving this disease.

I still remain as active as I can by spending time with family and friends. I also enjoy bowling as I have done so for over ten years. I would like to return to a sense of normalcy, in spite of my breast cancer. I would like to live outside of an assisted living facility as I am primarily a resident to participate in physical therapy. With the exception of receiving my medication, I am fully able to perform self-care needs.

I have seen the success stories of those facing a health crisis and receiving so much support and an excellent level of care, but what type of resources are there for those who don’t know what is available? While I am happy to see the stories of those who are in remission, and those who have beat cancer altogether; where are the stories of those who still face their battles on a daily basis? What about those who don’t meet a certain demographic to even receive such support? Should it matter what stage of illness or what type of illness one is facing?

I would like to be the voice for those who may face a similar situation in which they may be afraid to seek medical care or unable to due to other obligations. A person facing any serious medical condition should not have to face it alone. They should not be uninformed, nor turned away from care due to insurance paperwork.

My experiences over the years since my diagnosis have been more stressful financially, physically and mentally than dealing with my terminal illness. I am certain there are individuals my age (or a range of ages 18-55) that have been or are going through a similar situation. There has to be a better solution for those who really need more support than what is provided so those with any sort of illness can focus on the importance of their care and have a better quality of life.

This is not just about policies on paper; this is about human lives.

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