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How To Talk To Your Doctor About HER2-Positive Breast Cancer

Posted on March 31, 2022
Medically reviewed by
Richard LoCicero, M.D.
Article written by
Maureen McNulty

  • Having conversations about breast cancer and its treatments can be confusing and overwhelming.
  • Writing down some questions before a doctor’s appointment may help you feel more prepared.
  • It’s always OK to ask your doctor questions or let them know if there’s something you don’t understand.

Cancer and its treatments are incredibly complex. Understanding your condition and treatment options may help you feel more confident in navigating your care. It’s important to get information from your health care team and let them know about your concerns.

Know that it isn’t unusual or wrong to ask a lot of questions. In fact, it’s part of a process called shared decision-making. This approach involves you and your doctor working together to find solutions that fit your needs, values, and concerns. Shared decision-making can help you feel more satisfied with your care.

Below are some of the issues and questions you may want to consider bringing up to your doctor. Don’t feel like you need to thoroughly discuss everything listed here. Different people approach their breast cancer diagnosis in different ways, and it’s up to you to choose the topics that would be most helpful to you.

Keep in mind that there are no stupid questions when it comes to protecting your health. Try to get used to asking your health care team about anything you don’t understand.

Print this article and bring it to your next appointment so you can discuss these topics with your health care team.

Discussing Your HER2-Positive Breast Cancer

Some people feel more empowered to manage their condition when they understand a little more about the type of cancer they have. You can read on your own about HER2-positive breast cancer, ask your doctor to explain it to you, or use a combination of approaches.

Having breast cancer that is HER2-positive means your cancer cells contain certain changes that may cause them to grow faster. Knowing your HER2 status helps you predict how your cancer will act (HER2-positive cancers spread more quickly than HER2-negative breast cancers) and what treatments may be a good fit (certain drugs are more effective at killing HER2-positive breast cancer cells).

Questions you may want to ask your doctor include:

  • What does HER2-positive mean?
  • What is my cancer stage? Has my cancer spread to other parts of the body?
  • What symptoms should I expect?
  • Are there any serious symptoms I should watch out for?
  • What is my personal health outlook?
  • What is the risk that my cancer will relapse (return after being treated)?
  • What lifestyle changes should I expect?

Learn more about HER2-positive breast cancer.

Talking About Your Treatment Plan

If you’ve been diagnosed with HER2-positive breast cancer, you’ll likely receive several types of therapies over a long period of time. It may help to better understand the purposes of these medications and procedures and how you will receive these treatments. You can also discuss potential side effects and what long-term follow-up may be necessary.

Treatment Goals

Different breast cancer treatments may be used for different purposes. Making sure you and your doctor are on the same page when it comes to your treatment goals may help. For example, the goal of a treatment may be to eliminate all traces of cancer cells, to shrink a tumor, to prevent cancer from returning, or to ease symptoms.

Take some time to learn about different treatments — you may have more than one option to choose from. The best treatment plan for you depends on several factors, such as your tumor stage (how far your cancer has spread), type of breast cancer, gene mutations present in your cancer cells, and your age, overall health, and preferences.

If you’re interested in bringing up this topic with your doctor, you may want to ask questions like:

  • What are your goals for me and my cancer treatment?
  • What are my treatment options?
  • What results can I expect from each option?
  • What is the purpose of each type of treatment option (such as surgery, chemotherapy, a targeted therapy drug, or hormone therapy)?
  • What are the benefits and drawbacks of each potential treatment plan?
  • Do I need surgery? Do you recommend a mastectomy or a lumpectomy?
  • How much do these treatments cost? Are they covered by my health insurance?
  • Are my treatments the best choice for HER2-positive breast cancer?
  • Should I consider getting a second opinion? Could doing so delay my treatment?
  • Are there any clinical trials I should consider?

Read more about treatment options for HER2-positive cancer.

How Cancer Treatments Are Given

Cancer treatments may come in different forms. You may be given medication in the form of pills, injections, IVs, or some combination of these. Finding out how often you need to visit the clinic to receive treatments may help you decide which treatment plan will work best for your preferences.

For example, trastuzumab (Herceptin) and pertuzumab (Perjeta) are monoclonal antibody treatments given through an IV infusion. However, these drugs are also available together in an injection. This trastuzumab, pertuzumab, and hyaluronidase injection (called Phesgo) is quicker than an IV infusion, meaning you will need to spend less time in the clinic. Neratinib (Nerlynx) is an oral medication that may be prescribed for people who were treated with trastuzumab-based therapy in the past.

When it comes to oral medications that you take at home, make sure you know the names of all your treatments and what they look like. You should also understand when and how they should be taken and the proper dose.

If you don’t take your medications in the recommended way or if you miss doses, you may experience negative effects. The treatment may not work as well, you may have a worse outlook, or you may need to visit your doctor or a hospital more often. Using your treatments as intended can increase your chances of having good results.

Questions you may want to ask include:

  • When will I start treatment?
  • Is there anything I need to do to get ready for treatment?
  • Can I take my medication at home? If not, where do I go to get an infusion or injection?
  • How often will I need to come into the clinic to receive my treatment?
  • How long will each treatment take?
  • Do I need to bring anything with me while getting an infusion?

Tell your doctor right away if you don’t understand their instructions or if you’re having trouble following their recommendations. Let them know if you have missed doses of a medication or if you haven’t been sticking to the treatment plan. Your doctor can help you get back on track or find a different treatment plan that works better for your needs.

Possible Treatment Side Effects

All cancer treatments have the potential to cause side effects that can decrease your quality of life. It may be scary to hear about these side effects, but knowing what to expect in advance may help you prepare. Keep in mind that side effects can vary from one person to the next.

If you want to learn more, try asking your doctor questions such as:

  • What common side effects can I expect with each treatment option?
  • How can these side effects be prevented or treated?
  • What should I do if I experience a side effect?
  • Are there any serious side effects I should tell you about right away?
  • How do I reach you during the day and during off hours?
  • Will experiencing side effects mean I have to switch to a different treatment?
  • Will I still be able to work or complete my usual daily activities while undergoing these treatments?

Using Cancer Treatments in the Long Term

Certain treatments work better for some people but are ineffective for others. Doctors may use multiple tests during follow-up appointments to see how well a treatment is working. If the cancer isn’t responding as well as expected, a different treatment plan may be considered.

Lifestyle changes may help keep you as healthy as possible during your cancer treatments. Healthy habits, like eating a nutritious diet and getting more physical activity, could give you a better chance at having a good outcome and help keep your cancer away after it’s treated.

Before you embark on a treatment plan, consider asking your health care team:

  • How long will I receive each medication?
  • How will you know if the treatment is working?
  • If the treatment doesn’t work, can I try a different treatment plan?
  • Should I consider any lifestyle changes, such as diet or exercise?
  • If the cancer is successfully treated, what type of follow-up care will I need?
  • What signs should I watch for that may indicate the cancer has returned?
Print this article and bring it to your next appointment so you can discuss these topics with your health care team.

Keeping Track of Discussions

It’s easy to forget some of the questions you meant to ask, and you may not remember everything your doctor has told you. Plan ahead for discussions by writing down your questions in advance and bringing them when you meet with your health care team.

As your doctor answers your questions, it may help to take notes so you can more easily remember information later. Try to keep all of the information in one place, such as a folder or binder. You could also ask your doctor if it’s OK to record your conversations so you can listen again later. There are several free smartphone apps that allow audio recording.

If you find it hard to write down information during a conversation with your doctor, you may want to bring a trusted friend or family member along. They can listen to the doctor’s instructions, take notes, and help you remember what was discussed.

Other Sources of Support

Your oncologist can help you understand your condition and its treatment, but many people with HER2-positive breast cancer need support that goes beyond that. Fortunately, other resources are available to help you manage different aspects of your cancer.

You may have access to several different people who can help you access various resources. Your health care team may include:

  • A social worker — Someone who can provide emotional support or practical help with navigating care and finding aid
  • A patient navigator — A person who can help coordinate your care team and address any challenges in accessing treatments
  • A dietitian — A professional who can help you meet your food needs while dealing with cancer treatments
  • A mental health professional — A person, such as a psychiatrist or therapist, who can help address issues like anxiety and depression

Additionally, many organizations provide financial or logistical support to people living with cancer.

It’s also good to talk to other people who are in your shoes. Online groups like MyBCTeam are full of people who have dealt with the same symptoms and lived through the treatments you’re using. Additionally, your cancer care team may be able to refer you to a support group that meets in your area.

To find some of these resources, you may want to ask:

  • Who is part of my health care team?
  • What can each member of my team help me with?
  • Is there someone who can help me find financial support? Who can help me handle concerns with my health insurance?
  • How can I contact each person in my health care team?
  • Are there any local support groups for people dealing with breast cancer?

Talk With Others Who Understand

MyBCTeam is the social network for people with breast cancer and their loved ones. On MyBCTeam, more than 55,000 members come together to ask questions, give advice, and share their stories with others who understand life with breast cancer.

Are you living with HER2-positive breast cancer? What helpful questions have you asked your doctor? Share your experiences in the comments below, or start a conversation by posting on your Activities page.

All updates must be accompanied by text or a picture.
Richard LoCicero, M.D. has a private practice specializing in hematology and medical oncology at the Longstreet Clinic Cancer Center, in Gainesville, Georgia. Review provided by VeriMed Healthcare Network. Learn more about him here.
Maureen McNulty studied molecular genetics and English at Ohio State University. Learn more about her here.

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