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Navigating the Healthcare System As a Woman of Color with Breast Cancer

Marissa Thomas_Navigating the Healthcare System As a Woman of Color with Breast Cancer

Receiving a diagnosis of breast cancer is a life-changing experience. It can be overwhelming, scary, and confusing. Add to that the fact that you are a Woman of Color, and the challenges can be even greater. 

After receiving my diagnosis, I had a flurry of thoughts and concerns: will I have the best care, tailored for me? Who will help with my son? Will my care team listen to me thoroughly and fully? I was especially concerned because, as a Woman of Color, I know potential racial biases can affect my experience in the healthcare system.

As a Woman of Color with breast cancer, I found a number of things helped me to navigate the healthcare system and get the best possible care. Here are a few.

1. I found a healthcare professional who understands my needs

Fortunately, I absolutely loved my breast cancer surgeon: she took the time to lay out all of my options and she also had a calming demeanor, which was something I really needed as my anxiety was at an all-time high. She recommended an oncologist, and I trusted her, so I went to see him. When I met with him, though, I felt like he was rushing me to make decisions that I needed time to process.

I learned how important it is to take your time when making treatment decisions. It may feel like time is of the essence, but it was helpful to remember that the decisions I was making would be carried with me for a lifetime. I knew that if I started to feel uncomfortable, I should find out what’s not working, and adjust accordingly. 

Ultimately, I found another oncologist, and transferred my care to their care team. I loved that they reviewed my history before my visit and each individual member of the team met with me on the same day to explain how they would work with each other to facilitate my care. They also made sure to include my support system – my friends and family – into my care plan. That was huge for me. 

Additionally, it is important to find a healthcare professional who understands your cultural background and who is sensitive to your needs. This may take some time and effort, but it is worth it. Use resources and lean into your community, as word of mouth can be one of the best tools at your disposal. You can also search online for doctors who specialize in treating Women of Color with breast cancer. 

I came from an area where Black and Brown doctors are rare, so I knew it would be up to me to research and find someone who looked like me. I’m so glad I did, because the doctor I found was a great fit. And when it came time for me to choose a plastic surgeon for my breast reconstruction, I asked my breast surgeon for a referral to a Doctor of Color she trusted. I wanted to see someone who knew the ins and outs of working with melanated skin, who knew how to lessen the dark scars from surgery and how to manage keloids – a type of raised scar more common in Black people – since I have a history of keloids developing.

Finding someone who looked like me really made a difference in my overall care, and I knew I was in the right hands.

2. I advocate for myself

I have learned it is important to be an advocate for yourself when you are navigating the healthcare system. This means asking questions, understanding your options, and making decisions that are right for you. It is also crucial to be assertive and speak up for your needs. 

Recently on a routine mammogram, there was a spot that looked "suspicious." The radiologist said this was probably fatty tissue from a previous surgery and to follow-up in a year. I asked if she had reviewed my chart and seen that I have a history of breast cancer. She said yes but her recommendation still didn't change. 

Walking to my car, I emailed my oncologist and explained the situation. Although the recommendation from the radiologist was to follow up in a year, I wasn't comfortable with that and I wanted a repeat scan ordered, even if it just was for my peace of mind. My oncologist agreed and placed the order. It ended up being scar tissue from a previous surgery, but I’m glad I know. The lesson here is even if it may be nothing, speak up because to you it means something. People need to listen to all concerns and questions you have.

While most of us have been taught to believe everything the doctor has said and not question their advice, hear me when I say: question everything, especially if you need clarification or do not understand. Ask questions, express your opinions, and request the care you need. Ask your doctors: is this the same type of care you would give your family members or, is this the standard of care for someone with my diagnosis? 

I have realized in life that if you don't understand something and you don’t speak up, the person you are speaking with will think you don't have any questions and assume you fully understand what they are saying. When it comes to advocating for yourself, this is one of the things we should know. And while I understand it is hard to speak up, especially since those of us from Communities of Color tend to not want to "rock the boat," at the end of the day your doctor wants to make sure you understand and are comfortable with the process.

3. I found support groups and resources

Breast cancer can be an isolating experience, but you don't have to go through it alone. Seek out support from family, friends, or a support group. You can also consider working with a therapist or counselor who specializes in helping women with breast cancer. 

I have a personal history of anxiety and when I was diagnosed with breast cancer, this intensified even more. All of the worrying about my care, plus my son’s care, took a toll on me. I decided to seek help through a counselor to help me process my feelings and thoughts so I could calm my mind and focus on healing, mentally and physically. 

When looking for a therapist, be honest with them and yourself about the help you need. I told my therapist I was looking for someone who would be 100% real with me, like a grandmother would, but with love. Also, know that it is okay to "shop around" and look for a therapist until you find the one that works for you.

Additionally, if you need financial assistance, you can work with the hospital’s billing team to find a solution. With cancer treatment comes high medical bills. One day as I was checking in for my visit, the receptionist advised that if I didn't make a payment, they would have to cancel all future appointments. I reminded her that they could not refuse care to me due to the balance on my account and asked what options they had available to help so I would not lose care. She immediately referred me to the financial aid office who helped me complete the financial application to help with the cost of my bills. 

As a Black Woman who was diagnosed with breast cancer, I know firsthand how navigating the healthcare system can be overwhelming. But as someone who has been there, it is my responsibility to share my knowledge to help make the path easier for you. Just remember to advocate for yourself, seek out support, take care of yourself, and know your rights. You are not alone, and there is help available.

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Medical Reviewer: Meredith Goodwin, MD, FAAFP
Last Review Date: 2021 May 9
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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.