Act upon diagnosis with HER2-positive breast cancer

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January 3, 2023
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January 3, 2023

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While it’s important to stand up for yourself with any health concern, 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 types of cancer.

Shomaker was 44 at the time, a mother of two young children, and co-founder of a national research company. During those first shocking 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 don’t need help,” she says. “Being responsibly selfish meant taking control of my treatment plan while allowing friends and family to take care of me and my family.”

Shomaker believes her responsible selfishness helped her get the best medical care possible. Here, cancer experts share five important ways you can take action and speak up for yourself when you’re diagnosed with HER2-positive breast cancer.

Learn from trusted sources

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

“Rather than searching online for HER2 positive and going down a rabbit hole, the first source of information is your doctor,” says William J. Gradishar, MD, FASCO, FACP, at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and Chair of the NCCN Breast Cancer Guidance Panel. “Your health team can direct you to sources to read more.”

If the task of research becomes overwhelming, ask a family member or friend to help you sort through the information while 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 have been newly diagnosed to do their homework and then put together a questionnaire for their doctors. Depending on where you are in your diagnosis or treatment journey, these questions could include:

  • What is my exact diagnosis?
  • What tests were done?
  • Can I have a copy of my pathology report? (The answer is yes!”)
  • How do you share medical information with me?
  • How can I best contact you? Can I call outside of business 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?
  • Is the cancer surgically removed?
  • Do I need treatment before the operation?
  • Before and after surgery, how will you make decisions about my cancer treatment?
  • How long do I have to undergo each treatment?
  • What side effects can occur and what can I do to minimize them?

Take a second pair 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,” says Brown. “This person should accompany you to doctor appointments, take notes and ask questions you may forget. You can also ask your doctor if you can record your conversation.”

Brown suggests designating an advocate or advocates on your medical record by signing a HIPAA clearance or emergency contact form. This gives your healthcare team permission to speak to the people you have listed about your condition and treatment.

Share your thoughts on the treatment
It can be especially important to bring that second pair of ears with you when you have your first appointment with your oncologist. Recent advances in treating HER2-positive patients mean that numerous tailored therapies need to be considered.

“There are a variety of drugs that have been developed in recent years, particularly for those who have been diagnosed with metastatic (advanced) HER2-positive breast cancer,” says Gradishar. “At this point, your question is, ‘How do we decide what treatment is best for me?'”

It is recommended to start some therapies before surgery depending on whether you have early stage breast cancer or advanced HER2 positive breast cancer. Your oncologist will discuss your options with you, but ultimately you must make a decision about your treatment.

“It’s important to talk to your doctor and share your priorities,” Brown says. “Your values ​​and lifestyle will contribute to the type of treatment you undertake and when.”

Get a second opinion

Although your healthcare team is there to guide you on your journey with HER2-positive breast cancer, you always have the responsibility. “You can hire and fire,” Brown says. “You can get a second opinion to confirm your diagnosis or to have a different point of view. Or you may choose to meet with another doctor who is a better fit for you.”

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

If you would like a second opinion, your insurance company can identify preferred doctors in your area. You can also get a second opinion from another pathologist, and some facilities even offer a second opinion by reading the pathology virtually.

Shomaker helped her do her research, ask friends and family to accompany her to appointments, and always be ready to ask tough questions to find the best possible treatment for her HER2-positive breast cancer.

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

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Act upon diagnosis with HER2-positive breast cancer
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