By Marianne Sarcich, as told to Kara Mayer Robinson
It may be hard for someone who's never had early-stage HER2-positive breast cancer to truly understand what it's like to have it.
With HER2-positive breast cancer, you may have a lot of physical and emotional side effects. Your treatment may go on longer than people think. The emotional burden may last a long time.
Through my advocacy and my personal experience -- I have stage I breast cancer -- I’ve seen how important it is to communicate with those close to you to help them understand what you’re going through and what you need.
Helping Others Understand Your Treatment
You may need to explain your treatment to close friends and family.
Most people are familiar with breast surgery, radiation, and chemotherapy. But they may not know about targeted therapy. You may have to explain that your targeted therapy may go on for as long as 2 years. You may take drugs for 5-10 years. Even if your chemotherapy is over, it’s normal for side effects to show up years later.
When you share what your treatment involves, others will better understand your experience.
Helping Others Understand Your Emotions
You may feel many ups and downs during and after treatment.
A breast cancer diagnosis can make you feel isolated. Suddenly there's this gap between you and the rest of your world. The time from diagnosis to treatment and beyond can be a whirlwind.
The only way for others to understand what’s happening and what you truly need is for you to tell them. It’s OK if it doesn’t come out perfectly. Emotions can be messy. Sharing also means you’re facing what you’re feeling, and that is good for you.
Be gentle with yourself. Meet yourself where you are. Share what you can, when you can, how you can.
Asking for Help
Remember that people often want to help. They may want to do something, but they just don't know what to do. They may feel helpless. Giving them something to do is a step in the right direction.
Be specific. Tell others exactly what you need, whether it’s help with dinner, a ride to a doctor’s appointment, or a shoulder to lean on.
If it feels like too much to call and ask for help, start with a simple text or email.
You’re in control of who you tell, when you tell, and what you tell. There’s no wrong way to do this. Do what’s comfortable for you.
Social media is a great way to stay in touch with friends and loved ones. Consider starting a private Facebook group where you share your breast cancer story with friends and, if you like, your community. This way, you can post something once instead sending individual messages to different people. This is especially helpful when you’re recovering from surgery or chemotherapy.
It’s also good for a practical reason: asking for help. “Can someone help me pick up my daughter from school? Who can give me a ride to my appointment?”
Talking to Your Close Friends and Family
Your friends and family can be an incredible source of support. But they may not know what to say or know what to do. Set the tone and guide them.
Tell them they don't have to know what to say or do. Sometimes you just need quiet company or someone you know you can count on.
Explain that sometimes you need a mini-vacation from breast cancer. Tell them when you’d like to hear about their children or job instead of talking about cancer. Tell your friends and family when it's OK to laugh.
Tell them it's OK if they don't know what to do. You may not know either.
But if there are things you don’t like, tell them. For example, if you dislike it when they use things like warrior metaphors and battle language, tell them it's not for you.
Talking to Your Spouse or Partner
Keep the lines of communication open with your partner from the start. Learn how you communicate most comfortably. Maybe it’s on the couch after dinner or in bed in the morning. Do a regular check-in when you’re most comfortable. Share your feelings. Admit to yourselves that that it’s hard, but you’re in this together.
Talking to Your Child
What to share depends on your child’s age and ability to handle information about breast cancer. Meet your child where they are.
Tell your child they can come to you with questions. Share answers tailored for them. It may help to share which treatments lay ahead so they know what to expect.
If your child is older, sit them down and share. It’s OK if you feel emotional. Be clear that they can ask you anything and you’ll try to answer truthfully.
Talking to Co-Workers and Acquaintances
If you choose to tell people at work, talk with your manager and HR department before treatment so they understand your needs. Share your choices. Do you want to work through treatment or take a leave of absence? Do you want to announce your diagnosis to everyone or a select few?
With co-workers and other acquaintances, choose your boundaries. Then communicate those boundaries and keep them. It’s OK to say, “I’d love your support and I’ll let you know what I need,” or “I need time to process this and I prefer if you don’t text, call, or email right now.”
People may think that once you complete treatment, you just need a little time to physically recover and you're good to go.
But survivorship may have many ups and downs. Suddenly, it may all hit you at once. You may be worried about your cancer coming back. You're learning your frustrations and your triumphs.
As you navigate your new normal, share the experience with your network. It helps them to understand where you are and where you are headed. Share your stories and show them that this isn't over. It’s a new chapter.
Photo Credit: Kevin Dodge / Getty Images
Marianne Sarcich, Wilmington, DE.
UpToDate: “Patient education: Treatment of early HER2-positive breast cancer (Beyond the Basics).”
American Cancer Society: “Targeted Drug Therapy for Breast Cancer.”
Breast Cancer Foundation New Zealand: “Coping with long-term side effects of treatment.”