While standing up for yourself is essential to any health problem, it’s even more important when you’re diagnosed with human epidermal growth factor receptor 2 (HER2)-positive breast cancer.
On March 27, 2006, Janet Shomaker felt a lump in her breast. A few weeks later, she was diagnosed with invasive ductal carcinoma. She also learned that the cancer was HER2 positive, meaning it contained a protein that promotes cancer cell growth, making it more aggressive than other forms of cancer.
At the time, Shomaker was 44, a mother of two young children and a co-founder of a national research firm. During the initial shocking days, a close friend and cancer survivor encouraged her to be “responsibly selfish”—a term she grew to understand over the next few months.
“My personality is that I can do most things by myself, I don’t need help,” she said. “Responsible selfishness means taking control of my treatment plan while letting friends and family take care of me and my family.”
Shomaker believes that responsible selfishness has helped her get the best medical care possible. Here, cancer experts share five important ways to take action and advocate for yourself when you’ve been diagnosed with HER2-positive breast cancer.
Learn from trusted sources
Once you get over the initial shock of the diagnosis, learn as much as you can about your type of cancer and its treatments. Just make sure you have access to reliable sources.
“Instead of searching online for HER2 positive and going down the rabbit hole, the first source of information is your doctor,” says William J. Gradishar, MD, MD, FASCO, FACP, Robert H. Lurie Comprehensive Cancer Center, Northwestern University, and NCCN Chair of the Breast Cancer Guidelines Group. “Your medical team can refer you to resources for more reading.”
If research becomes overwhelming, ask family or friends to help you organize information for an upcoming appointment.
Prepare questions for every appointment — and ask them
Susan Brown, MS, RN, is the senior director of education and patient support for the Susan G. Komen Foundation. She advises newly diagnosed women to do their homework and then compile a list of questions for their doctor. Depending on where you are in the diagnosis or treatment process, these problems 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 will you share medical information with me?
- What’s the best way to get in touch with you? Can I call after hours?
- What are the treatment options based on my cancer type?
- Are there clinical trials I can participate in?
- What are the risks and benefits of each treatment?
- Can the cancer be removed with surgery?
- Do I need treatment before surgery?
- How will you decide about my cancer treatment before and after surgery?
- How long does each treatment take?
- What types of side effects I may experience and what can I do to minimize them?
Take the second set of ears
With these questions, you may be ready to go to the doctor, but don’t go alone. “Identify an advocate to help you raise issues,” Brown says. “This person should accompany you to your doctor’s appointments, take notes, and ask questions you might forget. You can also ask your doctor if they can tape your conversation.”
Brown recommends designating one or more advocates on your medical records by signing a HIPAA power of attorney or emergency contact form. This allows your medical team to talk about your condition and treatment with the people you have listed.
share your thoughts on treatment
It may be especially important to bring a second pair of ears when you make your first appointment with your oncologist. Recent advances in HER2-positive treatment mean there are many tailored therapies to consider.
“A number of drugs have been developed over the past few years, especially for those patients diagnosed with metastatic (advanced) HER2-positive breast cancer,” Gradishar said. “At this point your question becomes: ‘How do we decide which treatment is best for me?'”
Some treatments are recommended to start before surgery, depending on whether you have early or advanced HER2-positive breast cancer. Your oncologist will review 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,” Brown says. “Your values and lifestyle will affect the type of treatment you receive and when.”
seek a second opinion
Although your treatment team will guide you throughout your treatment for HER2-positive breast cancer, you are always in charge. “You can hire and fire,” Brown said. “You can get a second opinion to confirm your diagnosis or offer a different perspective. Or you may decide to meet with another doctor who is a better fit for you.”
For example, if you are a transgender woman, you may prefer to see a doctor who is sensitive to your specific needs. The National LGBT Cancer Network provides a directory of cancer facilities that welcome trans patients.
If you need a second opinion, your insurance company may identify a preferred doctor in your area. In addition, you can get a second opinion from another pathologist, and some facilities can even provide a second opinion virtually by reading a pathology.
For Shomaker, research, having friends and family with her to doctor appointments, and always being willing to ask tough questions helped her figure out the best treatment for her HER2-positive breast cancer.
Now, more than 16 years after she was diagnosed with HER2-positive breast cancer, she’s still making advocacy for herself and others by sharing the advice that guided her. “Being diagnosed with HER2-positive breast cancer can be overwhelming and scary,” Shomaker said. “Standing up for yourself is empowering and can change the outcome of your treatment.”
