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Doctor Discussion Guide: What Happens After Treatment for HER2-Positive Breast Cancer?

Medically reviewed by Christina Chun, MPH on February 5, 2018Written by Jacquelyn Cafasso on February 5, 2018
doctor discussion guide

As you might expect, the end of your chemo or radiation for HER2-positive breast cancer doesn’t mean that your breast cancer journey has come to an end.

You probably have a ton of questions about what comes next: Do you still have to see your doctor as often? Will you have to undergo more tests? How do you prevent recurrence?

These are all matters you’ll discuss with your doctor in the coming weeks. Being prepared to discuss these issues and concerns will ensure you leave your doctor’s office with more answers than questions.

What can be done about lingering side effects?

Breast cancer treatments can cause several side effects. Most will go away now that your treatment has ended, but a few may linger. It’s even possible for new complications to arise later on.

Ask your doctor for a list of possible late- or long-term side effects from your treatment. Find out what to look out for, how to treat them, and when you should be in with your doctor.

Depending on the complication you’re experiencing and its severity, your doctor may prescribe medication to treat it. Keeping a detailed journal of symptoms, your mood, and your overall health can help your doctor determine if treatment will help.

When do I need to come in for more tests?

At first, follow-up visits with your doctor will be scheduled every few months. Then they’ll gradually decrease. The longer you’ve been cancer-free, the less often you’ll need to come in for appointments.

Have your calendar ready so you can mark which days you need to come in or when you should be calling to schedule a new appointment.

Also, ask your doctor what tests will be done at each appointment and if any preparation is necessary. You’ll likely need a variety of different tests and exams, but it depends on your particular case.

Here are a few examples of follow-up tests that you may receive:

Mammograms

You’ll need a mammogram test once or twice a year if you had surgery to conserve your breasts. Even if you had a mastectomy, you’ll still need to have a mammogram at least once a year.

Pelvic exams

Certain hormone drugs can potentially increase your risk of uterine cancer, also known as endometrial cancer, especially if you’ve already gone through menopause. A pelvic examination can help detect endometrial cancer early.

You should tell your doctor if you’ve had any abnormal vaginal bleeding or spotting. This doesn’t necessarily mean you have cancer, but it could sometimes be the first sign of endometrial cancer, so it’s better to play it safe.

Bone density tests

Medications known as aromatase inhibitors are used to treat early stage breast cancer. One side effect is a decrease in bone density. If you took these medications, your doctor will want to monitor your bone health as this could eventually lead to osteoporosis.

Other tests

Other blood tests and imaging tests (like X-rays and imaging scans) may be done during breast cancer follow-up, depending on your disease state and if your doctor suspects the cancer has come back. They may also be done to see if you have other conditions, like iron deficiency anemia.

Where can I get support?

Now that your breast cancer treatment is complete, you’re likely experiencing a wide range of emotions. Before returning to your normal daily routine, it’s important to address these feelings.

Having a support group is important even after treatment. A support group can be a local group of people who meet in person or an online forum. Ask your doctor to refer you to one.

When can I return to normal activities?

After the whirlwind of breast cancer treatment that you just went through, you may be eager to get back to normal life. This most likely won’t be easy. You may have lingering fatigue and other symptoms to deal with before you can get back to your career and family life.

You’re probably also wondering what type of diet you should follow, and what type of exercise is best for staying as healthy as possible.

At your next appointment, ask your doctor the following:

  • when you can return to exercise, and which types of exercise are best
  • what diet you should be eating
  • how much sleep you should be getting
  • what’s considered a healthy weight for you
  • if they have any other tips for a healthy lifestyle
  • when and if you can get pregnant (if you’re thinking about having children)
  • where to get help with sexual problems
  • how to deal with lingering pain or fatigue

This information can be overwhelming, but there’s no need to take it on all at once. Take it one step at a time.

Can I get records of my treatment?

Keeping a record of your breast cancer treatment can help doctors who may care for you later on have a better understanding of your medical history, especially if you move or change insurance.

Ask your doctor for copies and records of the following:

  • details of your diagnosis
  • all of the treatments you received
  • names of the doctors and facilities that cared for you
  • results of all follow-up tests

What’s my risk of recurrence?

While most people treated for early stage HER2-positive breast cancer don’t relapse after their treatment, breast cancer can return in some cases. Recurrence can happen anytime, but it most often occurs within five years of treatment.

Ask your doctor about your specific risk of recurrence and what signs to look out for.

How can I stay “breast aware”?

Being breast aware means knowing how to perform a breast exam to look for changes in your breast tissue. Breast cancer can come back, but the earlier it’s caught, the better the outlook. Following your initial treatment for breast cancer, you should learn how to be breast aware.

This can be difficult because your treatment can leave you with a scar that may change as it heals. But your doctor can give you tips and instructions on how to get the most out of your home breast exam. You should aim to do one every month.

Life after breast cancer

Though your breast cancer journey may never truly be over, you can now join the millions of men and women who have reached the end of active breast cancer treatment. It’s now time to process, recover, and get back to doing things you enjoy.

Due to treatment advances, HER2-positive breast cancer is less likely to recur now than in the past. While there will be many more tests, medications, and some lingering side effects to deal with, your doctors, friends, family, and support groups are there to help you with your transition to life after cancer.

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