Advocating for Yourself

By Rose Holland

At the WBCC we often focus on advocating for others. This month I want to talk about how you can advocate for yourself after a cancer diagnosis. Here are some key things you need to know, including building your knowledge, talking to your medical team, creating your personal team, knowing when to ask for another opinion and advocating with insurance companies.

Building Your Knowledge. Receiving your diagnosis can be a huge shock. Often we don’t know where to turn. Our first thought might be to use Doctor Google or find a social media group, but that is not always the best and can lead down a dark path or provide inaccurate information. I recommend finding known organizations that can provide you with accurate information.

• Find reliable information. It is important that you build your knowledge on reliable information. On the internet this would include sites like the American Cancer Society, breastcancer.org, and National Breast Cancer Foundation. Medical sites such as Mayo Clinic and Johns Hopkins are another great source of accurate information and can provide an understanding of the type of cancer you have and possible treatment options.
• Take notes. Make notes of what you learn. Identify what applies to you based on the type of cancer you have. After my diagnosis I created a notebook because I needed to process all the information.
• Create a list of questions. Creating a list of questions is so important. Often we don’t know what to ask and this is where finding that reliable information can help us build the right questions. One resource that helped me was the American Cancer Society’s article “Questions to Ask Your Doctor About Breast Cancer.”

Talking to Your Medical Team. Building a rapport with your medical team is so important. You’ll need to advocate for yourself throughout your treatment. If you do not understand something, ask.

• Ask questions. As I mentioned, I created a notebook and kept an ongoing list of questions. I brought them up to the nurse at the beginning of my appointments and between appointments I would use the online portal for questions that I felt were urgent.
• Get clarification. If you do not fully understand something, get clarification. This can be by asking questions or saying something like “What I hear you saying is . . ., am I understanding that correctly?” You want to make sure you and your team are on the same page.
• Bring a second set of ears with you or record appointments. Having someone come with you to appointments can really help. If that isn’t possible, ask to record the meeting so you can replay the discussion later. Sometimes there is so much information it can be overwhelming. Having the ability to talk it out with someone who was there or listen to the recording can clarify information or help you to ask additional questions.
• Employ financial advocacy. Cancer can be expensive, not just for treatment and copays, but for lost time at work and additional expenses. Ask to talk to the financial department, a nurse navigator and/or a social worker at your treatment center to find out about local and national assistance that might be available. This can include rides to and from appointments, hotel stays and more. Do not be afraid to ask for help.

Creating Your Personal Team. Having a team is so helpful. Sometimes people want to help but they do not want to bother you or do not know what to offer.

• Ask for specific needs. One important thing you can do is specifically ask for what you need. Maybe it is rides to the doctor’s office or someone to sit in with you during appointments. It may mean someone to drive the kids to and from activities or to babysit or help clean. Maybe a meal train would help. Have a list of things that can help you and your family. You can also ask a relative or close friend to coordinate assistance.
• Stand up for your needs. You need to advocate for yourself with your friends and family. Sometimes people think you look fine and assume you can go on as normal. Maybe they want to continually talk about your cancer and you want a break. Do not be afraid to stand up for what you need during this time. If someone is being insensitive, it is ok to let them know. It is ok to let your family know you need them to step up or that you are having a hard day and need some support.
• No is a complete sentence. When I was going through treatment, I had people pushing me for information or others who felt I should just keep doing my normal routine. No, I cannot cook dinner. No, I am not up to going out. No, I do not want to talk about my treatment. No is a complete sentence.
• Communicate via social media. Social media can be a way to keep people informed and build a team. A friend created a group for her families and friends and had two other people who would update everyone as she went through treatment. It helped her communicate her needs and let those who wanted to help know what she did or did not need. Social media also offers opportunities to build connections with other cancer patients and survivors through groups. This can be a way to build your own team and learn about resources out there to provide support.
• Find others who have been in your shoes. Finding cancer survivors can help provide a different type of support, support from someone who understands and has been there. You may have a group available through your cancer center or you can find many groups through social media. ABCD: After Breast Cancer Diagnosis is an example of an organization that offers support services and mentorship to those impacted by a breast cancer diagnosis.

Asking for a Second (or Third) Opinion. Being confident in your team and your treatment plan is essential. Insurance companies will usually pay for a second opinion.

• Know when to ask. Are you unclear on your diagnosis, concerned about the treatment plan or uncomfortable with your team? These are all examples of when asking for a second opinion is not only appropriate, but also important. Some insurance companies require a second opinion before certain treatments.
• Know ways to ask. Let your doctor know you would like a second opinion. You can even ask them for recommendations. Your insurance company can also assist you with this process. You can ask friends who have undergone treatment or work in the healthcare field for recommendations.

Advocating With Insurance Companies. Insurance may deny some treatments. The doctor’s office can and should be contesting any such decisions. Be as polite, professional and as calm as possible.

• Research what your insurance covers. Each insurance company is unique. Most have a website that will outline what is and is not covered. If you are unsure, do not hesitate to call and ask.
• Ask for an advocate. Ask for a patient advocate or navigator from your medical team or insurance company. Some insurance companies have internal advocates or navigators to help patients with certain conditions manage their treatment.
• Work with your doctors. Ask what you should be doing if they are having issues. They may handle it all or they may ask you to make calls. Use the systems your medical center has in place to push if needed.
• Ask for answers. Ask why a treatment or test was denied. It may be an error in coding or perhaps the treatment or test is not considered standard. Ask for alternatives and what conditions need to be met for the treatment or test to be covered.

For some of us advocating for ourselves is not our normal behavior. It can be a difficult process when you are not used to doing it. Advocating for yourself makes sure you are confident in your treatment and helps you receive the support you need during this difficult time.

Rose Holland joined WBCC in 2024. She was born in Wisconsin and has a Doctorate of Education degree from University of Wisconsin–Stevens Point, a Master of Theology from St. Norbert College in De Pere, and a Bachelor of Business Administration from the University of Wisconsin–Milwaukee. Her career focused on advocating for military families and providing career development opportunities in the workplace. She was a military spouse for over 30 years and has lived in seven states and Italy, retiring in Wisconsin. She has a family history of breast cancer with her grandmother, aunt and cousin having had breast cancer. She was diagnosed in October 2022 and completed treatment in January 2023.