Help others understand your HER2-positive breast cancer diagnosis

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By Marianne Sarcich, as told by Kara Mayer Robinson

For someone who has never had HER2-positive early breast cancer, it can be difficult to truly understand what it is like to have it.

There are many physical and emotional side effects associated with HER2-positive breast cancer. Your treatment may take longer than people think. The emotional strain can last for a long time.

Through my commitment and personal experience – I have stage I breast cancer – I have seen the importance of communicating with people close to you to help them understand what you are going through and what you need.

Help 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 therapies. You may need to explain that your targeted therapy may last up to 2 years. You can take medication for 5-10 years. Even after your chemotherapy is over, it’s normal for side effects to appear years later.

If you share what your treatment entails, others will better understand your experience.

Help others understand your feelings

You can feel many ups and downs during and after the treatment.

A breast cancer diagnosis can make you feel isolated. Suddenly there is this chasm 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 is happening and what you really need is if you tell them. It’s okay if it doesn’t come out perfect. Emotions can be messy. Sharing also means facing your feelings, and that’s good for you.

Be gentle with yourself. Meet where you are. Share what you can, when you can, how you can.

Asking for help

Remember that people often want to help. They might want to do something, but they just don’t know what to do. You may feel helpless. Giving them something to do is a step in the right direction.

Be precise. 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 calling and asking for help seems like too much, start with a simple text or email.

share updates

You are in control of who you tell, when you tell, and what you tell. There’s no wrong way to do this. Do what is comfortable for you.

Social media is a great way to keep 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 wish, your community. This allows you to post something once instead of sending individual messages to different people. This is especially helpful if you are recovering from surgery or chemotherapy.

It’s also good for one practical reason: to ask for help. “Can someone help me pick my daughter up from school?” Who can drive me to my appointment?”

Talk 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 do. Set the tone and lead them.

Tell them they don’t need to know what to say or do. Sometimes all you need is quiet company or someone you can count on.

Explain that sometimes you need a short break from breast cancer. Tell them if you want to hear about their kids or job instead of talking about cancer. Tell your friends and family when it’s okay to laugh.

Tell them it’s okay 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 don’t like them using things like warrior metaphors and combat language, tell them it’s not for you.

Talk to your spouse or partner

Keep the lines of communication with your partner open right from the start. Learn how to communicate most conveniently. Maybe it’s lying on the couch after dinner or in bed in the morning. Do a regular check-in when you feel most comfortable. share your feelings Admit to yourself it’s hard, but you’re in it together.

Talk to your child

What you should share will depend on your child’s age and ability to deal with information about breast cancer. Pick up your child where they are.

Tell your child that they can come to you with questions. Share answers tailored to them. It can be helpful to let them know what treatments are coming up so they know what to expect.

If your child is older, sit them down and share. It’s okay if you’re feeling emotional. Be aware that they can ask you anything and you will try to answer truthfully.

Conversations with colleagues and acquaintances

If you choose to tell people in the workplace, talk to your manager and Human Resources before treatment so they understand your needs. Share your choices. Would you like to complete a treatment or take a leave of absence? Would you like to share your diagnosis with everyone or a select few?

With colleagues and other acquaintances, choose your boundaries. Then communicate those boundaries and stick to them. It’s okay to say, “I would really appreciate your assistance and will let you know what I need” or “I need time to process this and I prefer it if you don’t write, call or right now send an email.”

declare survival

People may think that once the treatment is complete, all you need is a little time to recover physically and you’re good to go.

But survival can have many ups and downs. Suddenly everything may hit you at once. Maybe you’re worried about your cancer coming back. You learn your frustrations and your triumphs.

Share the experience with your network as you navigate your new normal. It helps them understand where you are and where you are going. Tell your stories and show them this isn’t over yet. It’s a new chapter.



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