After you’ve been diagnosed with breast cancer and made your first oncology appointment, you may be worrying and wondering, ‘now what?’. As a certified oncology nurse and certified navigator, I can help.
It’s a navigator’s job to help people understand their diagnosis and treatment plan, improve communication and care coordination amongst their healthcare team, address any barriers to care, and provide psychosocial resources and support throughout their cancer experience. Here are my top tips to help you get ready for—and get the most out of—your first appointment:
1. Gather your medical records
Prior to your first consultation, request to have your most recent medical records forwarded to your oncologist in advance of your appointment or bring copies with you. Your physician is trying to put together a puzzle to develop a personalized treatment plan to treat your cancer and imaging, biopsy, and prognostic results are all pieces to this puzzle and will help guide your treatment team in making treatment decisions. Ensuring you have all relevant information before your first appointment will prevent delays in your treatment planning. If the office has an Oncology Navigator, they can assist in this initial consultation in confirming all your documents have been received, understanding your diagnosis, next steps, and providing appropriate resources.
2. Ask for a financial counselor
Discussing financial expectations at the beginning can help you manage expenses that often go hand-in-hand with breast cancer care. At your first visits to each healthcare facility (surgeon, medical oncologist, radiologist, reconstructive surgeon, hospital, imaging facility, etc.) ask for a financial counselor, financial navigator, or insurance specialist to determine what your insurance covers, your financial expectations, and possible payment plans. A social worker or navigator can also assist you in finding financial resources in your community and ensure you can focus on getting the best care, not agonizing about bills. If you are not assigned a navigator at diagnosis, ask your care provider for one.
Read more about the financial toxicity of breast cancer, and 10 tips to manage financial toxicity.
3. Bring a buddy
When trying to understand a cancer diagnosis, it’s important to have someone with you at your first consultation to help you remember information and to comfort you. Support systems can look different for everyone and come in different forms (family, significant other, friend, neighbor, pastor, religious leader). As long as they are positive people who are there to help and comfort you in an encouraging way—bring them.
Need someone to talk to? Contact LBBCs Breast Cancer Helpline to speak to a trained volunteer who has been diagnosed with breast cancer for emotional support, guidance, and hope.
4. Search trusted online resources
After getting a breast cancer diagnosis many people start casting about the internet looking for answers and resources. It is important to remember that not everything on the internet is accurate, factual, or even relevant to your specific diagnosis. Look for health websites that are sponsored by federal government agencies, academic medical institutions, and healthcare organizations. Your health care provider can also recommend appropriate and reliable resources and online information, especially local community resources. If you are unsure of what to look up regarding your diagnosis, speak first with your health care provider and ask what terms to use when searching for resources.
5. Ask questions
This is your care, so come ready to ask questions to help you make decisions about your treatment. Bring a notebook with prepared questions and to write down answers and other pertinent information, such as diagnosis, stage, prognosis, treatment plan, next steps, and important contact information. A breast cancer diagnosis and its treatment can be very complex and often a new language for you and your caregivers. Asking questions and speaking transparently with your medical team is crucial for you to understand the process and feel confident in your treatment decisions. If you are alone or unsure of understanding your physician, ask for a navigator or nurse/medical assistant to sit in with you on your first appointment to assist you with understanding your diagnosis, and treatment plan. Make sure you understand your next steps before leaving the office.
Download LBBC’s Guide for the Newly Diagnosed to learn questions to ask and more.
6. Seek additional support
Supportive services and resources are available for people impacted by breast cancer and their caregivers. These resources and medical professionals can look like a social worker, chaplain, dietician, support groups, mental health counselor, financial assistance, oncology rehab, and lymphedema specialist to name a few. When choosing your medical team, ask about the supportive services and resources they have available. Your medical team should comprise of multi-disciplinary team members that can address the physical, emotional, spiritual, and psychological aspects of your care.
Learn about the different types of breast cancer support available.
7. Manage your expectations
Fear of the unknown can be common when you’ve been recently diagnosed with breast cancer. Allow your medical team to work with you and explain your diagnosis and treatment plan as treatments are constantly evolving and enhancing. Try not to compare your journey with someone else’s as they may have a different type of cancer and/or treatments entirely. Oncology care continues to evolve and become more personalized, which is why it is crucial to remember that your specific cancer experience and how you react to treatment may be different than other people experienced it even just five years ago.
To learn more about the role of a navigator in your care, download this FAQ sheet from the Academy of Oncology Nurse and Patient Navigators.