CaringBridge Staff | 06.08.22
No one ever wants to hear the words “breast cancer,” in relation to themselves, or any person they love. But as power and direction can come from words and actions following such a diagnosis, many who have used CaringBridge through treatment for breast cancer were happy to share these tips and suggestions on how to be a good advocate for yourself, or for someone dear to you.
1. Speak of Your Faith
It is important for your medical caregivers to understand your values and how you would like to approach your health journey. If spirituality is one of your values, consider sharing your beliefs with your provider.
A survey of women who started CaringBridge sites after a breast-cancer diagnosis found that 81 percent of patients did not discuss their spiritual beliefs with medical professionals with whom they were working, even when they described their faith as important. This research shows there is opportunity for patients to advocate for their spirituality, too, within a treatment plan.
“My faith has always gotten me through the lows and the highs of life, so when I found out I had breast cancer, I chose to believe God placed these doctors in my life. I put my trust in what they recommended, and also in God.”
Jennifer Ndegwa, mom, wife, daughter of Christian missionaries and teacher, diagnosed with aggressive breast cancer at age 39
2. Make Knowledge Your Power
Everyone approaches breast cancer differently, with some people diving into self-education on the disease and others focused more on emotional and spiritual aspects. Whatever approach helps surface the information you need to make decisions is the right approach for you and can help set the overall tone for your medical care.
“I wanted to make sure I was knowledgeable on the medical terms so I could be my own advocate and say, ‘This is what I want. This is the best thing for my body and for myself.’”
Cat Thisius, mom, wife, preschool teacher, diagnosed with breast cancer at age 47
3. Trust Your Own Process
Everyone has opinions, and often out of a desire to be helpful, even the most loving family members and friends can sometimes share too freely. CaringBridge users who have been on the receiving end of opinions ranging from confusing to adversarial—albeit well-intentioned—offer this reminder: There is no better advocate for you than YOU.
“One of the hardest things I had to deal with was when people offered me their opinions, when their process was different than mine. The best way to advocate for yourself is to walk through your own journey, because it’s your journey.”
Ashley Gleitz, daughter and musician, diagnosed at age 24 with stage two, grade three breast cancer
4. It’s OK to Ask Questions
Breast cancer treatment is not one-size-fits-all. It’s ok to ask a provider for more information about the treatment process so that you can understand your choices.
“When I found out I had breast cancer, I had to have surgery, but I wanted to wait until my husband had arrived from Kenya. My medical team supported my decision.”
5. Bring Your Own Scribe
CaringBridge users have jokingly said that upon hearing they have breast cancer, they have also temporarily lost their hearing. With emotions and logistics swirling in your head, it is hard to absorb details about things you need to know. So in advance of critical appointments, either in-person or online, consider appointing someone you trust and feel comfortable with to serve as your note-taker. Have a conversation with them ahead of time about how you would like them involved in your appointment and make sure they know your wishes when it comes to treatment.
“My sister came with me to my appointments, and she always took notes on her phone. That let me focus on whatever I was feeling, and also let me just ask questions. Whenever I would look at her notes later, I was always surprised to see something I had missed.”
Courtney Lamb, mom, daughter and RN, diagnosed with stage 3 breast cancer at age 37
6. Ask for Help
Having breast cancer can affect nearly every facet of life, from work and home to childcare and finances. But a wide range of resources is available for many patients and family caregivers. The hardest part, though, as confirmed by CaringBridge research, can simply be asking for help. In addition to reaching out to family and friends, consider reaching out to a breast cancer support network to speak to other people who are living with breast cancer.
“I looked for every single resource out there for myself and for my kids. I got in touch with the resource specialist at my hospital, who put me in touch with other resources. There are also navigators who can help you advocate.”
Don’t go through your health journey alone
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What Helped You Advocate Through Breast Cancer?
What tips or suggestions do you have on how to be a good advocate for yourself, or for someone dear to you, when going through breast cancer treatment? Feel free to comment your ideas below and share your stories with the CaringBridge community.