When facing any health issue, it is essential to advocate for yourself, but it becomes even more crucial when the diagnosis is HER2-positive breast cancer (Human Epidermal Growth Factor Receptor 2).
On March 27, 2006, Janet Shomaker discovered 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 the growth of cancer cells, making it more aggressive than other types of cancer.
At the time, Shomaker was 44 years old, a mother of two young children, and a co-founder of a national research company. In those initial days filled with shock, she was encouraged by a close friend and cancer survivor to be „responsibly selfish“ – a concept she would come to understand in the following months.
„I had the personality of being able to handle most things alone and not needing help,“ she says. „Responsible selfishness meant taking control of my treatment plan while allowing friends and family to care for me and my family.“
Shomaker believes that her responsible selfishness helped her receive the best possible medical care. Here, cancer experts reveal five crucial ways you can take action and advocate for yourself when diagnosed with HER2-positive breast cancer.
Learn from trusted sources
Once you have overcome the initial shock of the diagnosis, it can be helpful to learn as much as possible about your specific cancer and its treatment. Just be sure to access credible sources.
„Instead of Googling HER2-positive and getting into a rabbit hole, your first source of information should be your doctor,“ says William J. Gradishar, MD, FASCO, FACP, at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and chairman of the NCCN Guidelines Panel for Breast Cancer. „Your healthcare team can direct you to further reading sources.“
If the research becomes overwhelming, ask a family member or friend to help go through the information as you prepare for upcoming appointments.
Prepare questions for each appointment – and ask them
Susan Brown, MS, RN, is Senior Director, Education & Patient Support, Susan G. Komen Foundation. She advises women newly diagnosed to do their homework and then compile a list of questions for their doctors. Depending on where you are in your diagnosis or treatment journey, these questions may include:
- What is my specific diagnosis?
- What tests have been performed?
//… List of questions continued
Bring a second set of ears
If you have questions, you may feel prepared for your doctor’s appointment, but don’t go alone. „Seek an advocate to help you ask questions,“ says Brown. „This person should accompany you to doctor’s appointments, take notes, and ask questions you may forget. You can also ask your doctor if you can record your conversation.“
Brown suggests designating one or more advocates in your medical record by signing a HIPAA release or emergency contact form. This allows your healthcare team permission to speak with individuals listed about your condition and treatment.
Share your treatment preferences
It can be particularly important to bring a second set of ears when you have your first appointment with your oncologist. Due to recent advances in HER2-positive treatment, there are numerous tailored therapies to consider.
It is recommended to start some therapies before surgery, depending on whether you suffer from early-stage or advanced HER2-positive breast cancer. Your oncologist will discuss your options with you, but ultimately, you have to advocate for your treatment preferences.
Seek a second opinion
Although your treatment team will guide you along your journey with HER2-positive breast cancer, you always have the responsibility. „You can hire and fire,“ says Brown. „You can seek a second opinion to confirm your diagnosis or present an alternative viewpoint. Or you can opt for a meeting with a different doctor who is a better fit for you.“
For example, if you’re a transgender woman, you may feel more comfortable with doctors who cater to your specific needs. The National LGBT Cancer Network offers a directory of cancer facilities that welcome transgender patients.
If you want to seek a second opinion, your insurance can provide you with preferred doctors in your area. You can also obtain a second opinion from another pathologist, and some facilities even offer virtual second opinions by reading the pathology.
For Shomaker, research, the request of friends and family to accompany her to appointments, and a constant willingness to ask tough questions helped her find the best possible treatment for her HER2-positive breast cancer.
Now, over 16 years after her HER2-positive breast cancer diagnosis, she continues to advocate for herself and others by sharing the advice that guided her. „The diagnosis of HER2-positive breast cancer can be overwhelming and frightening,“ says Shomaker. „Advocating for yourself gives strength and can change the outcome of your treatment.“