Take Action After Diagnosis with HER2-Positive Breast Cancer

Although advocating for yourself is essential with any health concern, when the diagnosis is human epidermal growth factor receptor 2 (HER2)-positive breast cancer, it’s even more important.

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 the cancer was HER2-positive, which meant it contained a protein that encourages the growth of cancer cells making it more aggressive than other forms of cancer.

At the time, Shomaker was 44 years old, mom of two young children, and co-founder of a national research company. In those first shell-shocked days, a good friend and cancer survivor encouraged her to be “responsibly selfish” – a term she would come to understand in the months that followed.

“I had the personality that I can do most things on my own and I don’t need help,” she says. “Being responsibly selfish meant taking control of my treatment plan while I allowed friends and family to care for me and my family.”

Shomaker believes that being responsibly selfish helped her get the best possible medical care. Here, cancer experts share five important ways to act and advocate for yourself when you’re diagnosed with HER2-positive breast cancer.

Learn from trusted sources

Once you get over the initial shock of diagnosis, it can be empowering to learn as much as you can about your type of cancer and its treatment. Just make sure you have access to credible sources.

“Rather than searching HER2-positive online and going down a rabbit hole, the first-line source for information is your physician,” says William J. Gradishar, MD, FASCO, FACP, at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and chair of the NCCN Guidelines Panel for Breast Cancer. “Your health care team can refer you to sources to do more reading.”

If the task of researching becomes overwhelming, ask a family member or friend to help sort 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 who are newly diagnosed to do their homework and then compile a list of questions for their doctors. Depending on where you are in your diagnostic or treatment journey, these questions might 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 is the best way to contact you? Can I call after hours?
  • What are the treatment options based on my type of cancer?
  • Are there clinical trials I can participate in?
  • What are the risks and benefits of each treatment?
  • Will the cancer be surgically removed?
  • Will I need treatment before surgery?
  • How will you decide about my cancer treatment before and after surgery?
  • How long will I have to undergo each treatment?
  • What type of side effects might I experience, and what can I do to minimize them?

Take a second set of ears

With questions in hand, you may feel ready for your doctor’s appointment, but don’t go alone. “Identify an advocate to help you ask questions,” Brown says. “This person should accompany you to doctor’s appointments, take notes, and ask questions you might forget. You can also ask your doctor if you can record your conversation.”

Brown suggests naming one or more advocates in your medical record by signing a HIPAA release or emergency contact form. This gives your health care team permission to talk about your condition and treatment with the people you’ve listed.

Share your thoughts about treatment
It may be especially important to bring along that second set of ears when you have your initial appointment with your oncologist. Recent advances in HER2-positive treatment mean there are numerous tailored therapies to consider.

“There are a variety of drugs that have been developed in the last few years, especially for those who have been diagnosed with metastatic (advanced) HER2-positive breast cancer,” Gradishar says. “At this point your question becomes: ‘How do we decide which treatment is best for me?’”

Some therapies are recommended to begin prior to surgery, depending on whether you have early-stage 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 contribute to the type of treatment you undertake and when.”

Seek a second opinion

Although your treatment team is there to guide you throughout your journey with HER2-positive breast cancer, you are always in charge. “You can hire and fire,” Brown says. “You can get a second opinion to affirm your diagnosis or provide a different point of view. Or you might decide to meet with another doctor who is a better fit for you.”

For example, if you are a transgender woman, you may be more comfortable with doctors who are sensitive to your specific needs. The National LGBT Cancer Network provides a directory of cancer facilities that welcome transgender patients.

If you want a second opinion, your insurance company may identify preferred doctors in your area. Also, you can ask for a second opinion from another pathologist, and some facilities even offer second opinions virtually by reading the pathology.

For Shomaker, researching, asking friends and family to accompany her to appointments, and always being willing to ask tough questions helped her find the best possible treatment for her HER2-positive breast cancer.

Now, more than 16 years after her diagnosis with HER2-positive breast cancer, she is still advocating for herself and others by sharing the advice that guided her. “Getting diagnosed with HER2-positive breast cancer can be overwhelming and scary,” Shomaker says. “Advocating for yourself is empowering and can change the outcome of your treatment.”

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