Advocating for yourself is essential when you have a health concern, but it's even more important when the diagnosis is human epidermal growth factor receptor 2 (HER2)-positive breast cancer.
On March 27, 2006, Janet Schomaker felt a lump in her chest. A few weeks later, she was diagnosed with invasive ductal carcinoma. She also learned that the cancer was HER2 positive for her. This means that it contains proteins that promote the growth of cancer cells, making them more aggressive than other forms of cancer.
At the time, Schomaker was 44 years old, a mother of two young children, and a co-founder of a national research company. During her first traumatic days, her best friend, a cancer survivor, encouraged her to „take her responsibility and be selfish.“ Over the next few months, she came to understand this term.
„I was someone who didn't need help because I could do most things myself,“ she says. “Being responsible and selfish meant taking control of my own treatment plan while relying on friends and family to take care of me and my family.”
Ms. Schomaker believes that being responsible and unselfish helped her receive the best medical care possible. Here, a cancer expert shares her five top ways to act and advocate for yourself when diagnosed with HER2-positive breast cancer.
Learn from trusted sources
Once you get over the initial shock of being diagnosed, you can learn as much as you can about your type of cancer and its treatments. Make sure you have access to reliable sources of information.
„Don't go down the rabbit hole by searching for HER2 positive online,“ said William J. Gradishar, MD, FASCO, FACP, of Northwestern's Robert H. Lurie Comprehensive Cancer Center. „The first line of information is doctors.“ University and NCCN Breast Cancer Guidelines Panel Chair. „Your medical team will be able to refer you to sources for further reading.“
If research is overwhelming, ask a family member or friend to help you organize the information for your next appointment.
Prepare and ask questions for each appointment
Susan Brown, MS, RN, is the Senior Director of Education and Patient Support at the Susan G. Komen Foundation. She advises newly diagnosed women to do their homework and create a list of questions for their doctor. Depending on where you are in the diagnosis or treatment process, questions may include:
- What is my exact diagnosis?
- What tests were done?
- Can I have a copy of my pathology report? (The answer is yes!)
- How can you share your medical information?
- What is the best way to contact you? Can I call you after hours?
- What are the treatment options depending on my type of cancer?
- Are there any clinical trials I can participate in?
- What are the risks and benefits of each treatment?
- Can cancer be surgically removed?
- Do I need treatment before surgery?
- How do you make decisions about cancer treatment before and after surgery?
- How long does each treatment take?
- What types of side effects may occur and how can I minimize them?
Harvest the second ear
Although you may feel ready to see a doctor if you have questions, don't go alone. “Find an advocate to help you with your questions,” says Brown. „This person will accompany you to your doctor's appointment, take notes, and ask you any questions you might forget. You can also ask your doctor if you can record the conversation.“
Brown suggests signing a HIPAA release or emergency contact form to include the name of one or more advocates in your medical record. This allows your health care team to talk to the people you list about your condition and treatment.
Please share your thoughts about treatment
It may be especially important to bring your second ear to your first appointment with your oncologist. With recent advances in HER2-positive treatment, there are many customized treatments to consider.
„In recent years, a variety of drugs have been developed specifically for patients diagnosed with metastatic (advanced) HER2-positive breast cancer,“ Gradishar says. „At this point, your question becomes, 'How do I decide which treatment is best for me?'“
Depending on whether your HER2-positive breast cancer is early or advanced, some treatments may be recommended to start before surgery. Your oncologist will discuss your options with you, but ultimately you must decide on your treatment.
„It's important to speak up and share your priorities with your doctor,“ says Brown. „Your values and lifestyle will influence the type and timing of treatment you receive.“
seek a second opinion
Your treatment team will guide you throughout your treatment for HER2-positive breast cancer, but you are always in charge. „You can hire and fire,“ Brown said. „You can get a second opinion to affirm your diagnosis or provide another perspective. Or you may decide to consult another doctor who is a better fit for you.“
For example, if you are a transgender woman, you may feel more comfortable with a doctor who is sensitive to your specific needs. The National LGBT Cancer Network provides a directory of cancer facilities that accept transgender patients.
If you need a second opinion, your insurance company may identify a recommended doctor in your area. You can also request a second opinion from another pathologist, and some facilities provide a virtual second opinion based on pathological interpretation.
For Shoemaker, doing research, having friends and family accompany her to appointments, and always asking the hard questions helped her find the best treatment for her HER2-positive breast cancer.
More than 16 years after being diagnosed with HER2-positive breast cancer, she continues to advocate for herself and others by sharing the advice that guided her. „Being diagnosed with HER2-positive breast cancer can be overwhelming and scary,“ says Schomaker. „Advocating yourself is empowering and can change the outcome of your treatment.“