Just diagnosed with HER2-Positive Breast Cancer — what should I do first

First Steps After a HER2-Positive Breast Cancer Diagnosis

I'm sorry you're facing this diagnosis. Here's what you should focus on right now:

1. Understand Your Complete Diagnosis

Before making any treatment decisions, make sure you have clarity on:

• Stage (early-stage, locally advanced, or metastatic)
• Hormone receptor status (Is it HR+ or HR-? This matters for treatment)
• Pathology report details (tumor size, grade, lymph node involvement)

Ask your oncologist: "Can you explain my complete pathology report and what each finding means for my treatment options?"

2. Assemble Your Care Team

You'll want:

• Medical oncologist (chemotherapy/systemic therapy specialist)
• Surgeon (if surgery is planned)
• Radiation oncologist (if radiation is needed)
• Consider a second opinion from another oncologist—this is standard and encouraged

3. Know Your Treatment Framework

According to NCCN Guidelines for Invasive Breast Cancer, HER2-positive breast cancer is treated with HER2-targeted therapy. The specific approach depends on your stage and hormone receptor status:

If you have HR+ (hormone receptor-positive) AND HER2+:

• Treatment typically combines HER2-targeted therapy (like trastuzumab and/or pertuzumab) with chemotherapy, followed by endocrine therapy (hormone therapy)

If you have HR- (hormone receptor-negative) AND HER2+:

• Treatment focuses on HER2-targeted therapy, which usually includes chemotherapy

The NCCN Guidelines explain that common HER2-targeted therapies include:

• Trastuzumab (Herceptin)
• Pertuzumab (Perjeta)
• Other options depending on your specific situation

4. Key Questions to Ask Your Oncologist

• What is my exact stage and hormone receptor status?
• What is the recommended treatment plan, and why?
• Will I need chemotherapy, HER2-targeted therapy, surgery, and/or radiation?
• How long will treatment take?
• What are the expected side effects, and how are they managed?
• Are there clinical trials I should consider?
• What is the plan for monitoring after treatment?

5. **Gather Your [ID removed]

Request copies of:

• Pathology report
• Imaging studies (mammogram, ultrasound, MRI if done)
• Any genetic testing results (like BRCA status if tested)

Having these helps with second opinions and future care.

6. Don't Rush Major Decisions

You typically have time to make thoughtful decisions. While HER2-positive breast cancer is aggressive, taking 1-2 weeks to:

• Get a second opinion
• Understand your options
• Ask questions
• Prepare emotionally

...is reasonable and won't harm your outcome.

7. Connect with Support

• Ask about support groups (in-person or online)
• Consider a therapist or counselor
• Tell trusted friends/family—you'll need support
• The American Cancer Society (1-[phone removed]) has free resources and can connect you with local support

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What Happens Next (General Timeline)

According to NCCN Guidelines, your treatment path will depend on your stage:

• Early-stage disease: Often surgery first, followed by chemotherapy and HER2-targeted therapy
• Locally advanced disease: Often chemotherapy and HER2-targeted therapy first (to shrink the tumor), then surgery, then more therapy
• Metastatic disease: Systemic therapy (chemotherapy + HER2-targeted therapy) as the main treatment

Your oncologist will determine which applies to you.

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Important Reminder

This information is for educational purposes only. Your specific treatment plan depends on many factors your oncologist will evaluate—your exact stage, hormone receptor status, overall health, and personal preferences all matter.

The most important next step is having a detailed conversation with your oncologist about YOUR specific situation and what they recommend.

You've got this. Take it one step at a time.

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Sources:

• NCCN Guidelines for Patients: Invasive Breast Cancer (2024)
• NCCN Guidelines for Patients: Metastatic Breast Cancer
• American Cancer Society