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Living With HER2-Positive Brain Metastases

Receiving this diagnosis can be scary, but there are ways to manage symptoms and reduce stress

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Your HER2-positive breast cancer has metastasized to your brain. Hearing the diagnosis and adjusting to your “new normal” can be an overwhelming experience that’s full of doubt, fear, anxiety, stress and sadness.

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And you’re sure to be full of questions about whether you can keep working, what kind of treatments or surgeries you’ll need and how you’re going to keep it all together.

While it can feel like you’re on an island alone, there is hope — and a whole host of ways you can live a full life with HER2-positive brain metastases.

Oncologist Shimoli Barot, MD, explains what modifications you may need to make to your daily life, how to be your own health advocate and more.

How common is brain metastases with HER2-positive breast cancer?

Dr. Barot says HER2-positive breast cancer metastasizes to your brain 30% to 50% of the time.

When it comes to HER2-positive brain metastases survival rates, Dr. Barot says it can depend on many factors such as your age, health and how aggressive your cancer is. In addition to traditional treatment options, there are newer avenues that your doctor may suggest.

“Most of the latest treatments for HER2-positive breast cancer can reach the brain and the fluid that surrounds the brain and spinal cord,” says Dr. Barot. “This allows us to use effective IV treatments or pills to try to treat the breast cancer that has spread to the brain apart from surgery or radiation therapy.”

What to expect when living with brain metastases

If your HER2-positive breast cancer has spread to your brain, it can affect how you go about your daily life and how you plan for the future. Dr. Barot offers some advice and tips after receiving the diagnosis.

Talk about a treatment plan

“The approach to treatment isn’t one-size-fits-all,” says Dr. Barot. “We try to customize and personalize your treatment specifically for you. And the goal of treatment is not only to take care of the breast cancer that has spread to the brain, but also to manage symptoms and to help you live longer and better.”

She adds that it’s common for you to meet with various healthcare professionals during this time, like a neurosurgeon and a radiation oncologist, who can discuss options such as stereotactic radiosurgery, a type of focused radiation to treat certain spots on your brain.

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And depending on what type of symptoms you’re experiencing, your doctor may recommend steroids to reduce swelling or antiseizure medication to reduce seizures.

Dr. Barot also stresses the importance of physical therapy and occupational therapy if you have tingling, numbness and weakness related to brain metastasis.

Rethink how you work

When it comes to your career and your job, there isn’t a clear-cut answer on what you should do. It all depends on how you feel, what you can handle and what you want to do.

Bottom line? It’s a personal decision that only you can make.

You may enjoy the sense of purpose and fulfillment you get from working — and appreciate the distraction that it offers. You may need to consider modifying how you work. For example, you may need to adjust your work schedule to accommodate doctor appointments and treatments.

But work may not be that important to you and you’d rather choose to spend your time with family and friends or doing other things you enjoy. You may want to consider short-term and long-term disability through your employer. Short-term disability can typically be up to 90 days, while long-term disability can be more than 90 days.

Another option to consider is the Family Medical Leave Act (FMLA), which allows for you to keep your job. But you’re able to take off a certain period of time or intermittently for treatments.

Embrace support from others

While you go through treatment and manage your symptoms, you’ll need help. You may need to lean on friends and family to help with daily tasks like grocery shopping, cooking and cleaning.

And Dr. Barot says joining or seeking out breast cancer support groups can have a positive impact as well.

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“Knowing someone else that has walked in your shoes and really understands what it’s like to live with this diagnosis can be a very big tool,” she continues. “Mental health disorders associated with this difficult diagnosis can also take a toll on your physical body. So, I believe it’s extremely important to use all the help and support to be able to successfully adjust to this new normal in your life.”

Manage your stress

Living with HER2-positive brain metastases can be scary and stressful and lead to depression and anxiety.

Focusing on your mental health is key, says Dr. Barot. Talking to a mental health professional can help you work through your fears and feelings.

Another thing you can do to help your mental health? Exercise.

Research shows that for individuals who are diagnosed and undergoing treatment for metastatic breast cancer, a structured exercise program can extend their lives and improve how they feel day-to-day,” outlines Dr. Barot. “And it can also help reduce cancer-associated fatigue and memory issues, often called chemo brain or chemo fog.”

Exercise is also very important to manage stress because that can keep your body physically healthy and able to continue to fight the cancer.

Mindfulness techniques are also great options. Consider trying yoga, tai chi and acupuncture.

“These supportive services and complementary therapies can make a big difference in changing the quality of life because it’s not just about how long you live with this diagnosis, but how well you live during that time, too,” she notes.

Eat a well-balanced diet

“When you’re undergoing treatments to fight the cancer, your body goes through a lot,” says Dr. Barot. “If you don’t provide good fuel to your body — because food is fuel — it’s going to start using your muscle for energy instead.”

What does she recommend? Eating more of the following:

  • Lean proteins such as chicken, fish and eggs.
  • Complex carbs like brown rice and whole grains.
  • Unsaturated fats such as nuts and seeds, olive oil and avocados.
  • Fruits and vegetables.

And try to cut down on the quantity of processed foods you eat.

Be your own health advocate

It can be overwhelming to adjust to your new normal: Countless doctor’s appointments, new medications to fill, names of doctors and what they do — as well as all the thoughts and questions swirling in your head.

But Dr. Barot says you shouldn’t be afraid to speak up and tell your doctor what you need or what you’re feeling.

“There are numerous small and nuanced things that we can do to help. If you explain the situation to your healthcare team and advocate for yourself, they can help you much more effectively,” she encourages.

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She also suggests bringing a friend or family member along with you, if possible. Having an extra set of eyes and ears can help you keep track of all the information that’s being given to you.

Consider bringing a notebook and taking notes at your appointments, too, and even using it at home as you go about your day when thoughts or questions come up. This can help lead to more focused conversations with your healthcare team and lead to a better experience where you feel comfortable discussing anything with them.

“Developing a strong relationship with your team, building mutual trust and helping them get to know who you are as a person beyond your diagnosis really helps us find the best treatment for you,” says Dr. Barot.

Give yourself a break

And at the end of the day, you need to give yourself grace. Maybe you weren’t feeling great and couldn’t accomplish everything on your to-do list. Maybe you’re feeling down about your situation — and spent the day feeling sorry for yourself.

That’s OK. Living with a cancer diagnosis isn’t easy and you can’t expect yourself to feel your best and have everything go according to plan all the time.

“My approach is to listen to your body. It’s OK to recognize that you might just need to take a nap this afternoon to make it through the rest of the day,” reassures Dr. Barot. “It’s absolutely OK to need more rest because your body is going through so much.”

Bottom line?

As you navigate your new normal and figure out what works best for you, it’s important to stay hopeful.

“There was a time when having breast cancer brain metastases automatically meant a poor prognosis. But the recent years have brought new treatments and there is ongoing research,” says Dr. Barot. “Exciting options are on the horizon for those who have been diagnosed with this condition.”

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