Living With HER2-Positive Breast Cancer
Resources, expertise, and survivor support to help you after a diagnosis

To help you along the way in the weeks and months after a HER2-positive breast cancer diagnosis, SurvivorNet has developed this guide called Living With HER2-positive Breast Cancer.

The guide is designed to help you navigate some of the challenges that may pop up as you plan for and undergo treatment for this specific type of breast cancer.

HER2-Positive Defined

Understanding your diagnosis — What is 'HER2-positive' breast cancer?

The human epidermal growth factor receptor 2 (HER2) is a receptor on the surface of almost all the cells in our body, and it is one of the many receptors responsible for the communication between the cells to promote their growth, division, repair, and survival.

In other words, HER2 is one of the many receptors that help cells grow and divide when the timing is right.

All breast cells are examined for an abundance of this protein (HER2). HER2 proteins act as receptors that regulate the growth and division of cells. If there is an excess of HER2 receptors in breast tissue (known as overexpression), it can lead to rapid multiplication of breast cells. This uncontrolled growth may result in the formation of a tumor.

Breast cancer classified as HER2-positive tends to exhibit faster growth, increased likelihood of spreading (metastasis), and a higher chance of recurrence. Despite its aggressive nature, HER2-positive cancer responds well to treatments that specifically target HER2 proteins.

There are no distinct symptoms or specific risk factors associated with HER2-positive breast cancer, although research indicates that this type of cancer may be more prevalent among younger women.

Handling Your Diagnosis

I have breast cancer — now what? Handling a new diagnosis

Take notes, talk to family: Tips from an oncologist

At this point, you may have already received treatment for your breast cancer. If you’re using this guide — your doctor has likely told you your breast cancer can be classified as HER2-Positive … but what does this mean for you?

You’ll get a lot of information in these initial meetings, so you may be feeling confused, frustrated, or any number of other emotions.

We understand this is a hard time. In this section of Living With HER2-Positive Breast Cancer, we’ll go over how to keep track of all the new information you’re getting — and offer some guidance on how to cope with emotions that can feel overwhelming.

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There are a few basic things you can do to help manage the process when you first learn of your cancer diagnosis. Dr. Heather Yeo, a colorectal surgeon at Weill Cornell and an advisor to SurvivorNet, has these tips for patients:

  • Have someone come with you to the doctor

It is important to bring a close friend or family member not only to support you, but also to help you understand and digest all the information.

  • Take notes

Writing down what you hear can help you focus and create a record of the information so you can refer to it later on.

  • Don’t be afraid to get a second opinion

Your doctor won’t be offended if you get a second opinion. It is extremely important to go through the process with a doctor you trust — and make sure you’re getting the best care possible with a doctor you feel comfortable with.

After a diagnosis: Be kind to yourself

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“How am I going to get through this?” It is often one of the first questions a person will ask after a cancer diagnosis.

“My advice is to take one day at a time,” says Dr. Susan Parsons, Director of Survivorship Care at Tufts University, “and be kind to yourself.”

Survivors also tells us it’s key to ask for the support you need — both mentally and physically. There is life after cancer so the goal is to keep hopeful and strong, and cut yourself some slack.

Preparing for Treatment

Assembling your treatment team

It can be challenging to find a doctor and decide where to get treatment. When you’re stressed, it’s easy to overlook some options.

We’ve consulted several experts in the field to get advice about planning during this early stage of the treatment process and to learn why it’s incredibly important to establish a trusted doctor-patient relationship.

Should I consider a multidisciplinary center?

Seeking out second opinions (you can — and you should!)

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“What would you do if someone in your family got cancer?” We put that question to some of the most renowned cancer doctors in the country.

National Cancer Institute Chief of Surgery Dr. Steven Rosenberg recommends seeking out multiple professional opinions to confirm a diagnosis and figure out the options.

Highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options.

With HER2-positive breast cancer in particular, doctors may have differing opinions on how to proceed with treatment.

Why the doctor-patient relationship matters

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Although there will always be limitations on how much time a doctor can spend with any given patient, the doctor-patient relationship is extremely important after a cancer diagnosis.

You’ll want to make sure you are working with a doctor you trust, who will respect your opinion and keep you informed about all of the treatment options for your particular diagnosis.

Dr. Nina Shah, a hematologist at UCSF Medical Center, stressed the importance of patients feeling comfortable enough to voice concerns to their doctors.

“It’s on us to make sure that we are emotionally available to the patients, and as available as we can be with our time, although there are always limitations there,” Dr. Shah explained.

Part of the doctor-patient relationship involves the patient feeling seen and heard — and advocating for themselves where they see fit.

Treatment Options

Understanding treatment options

The treatment approach for breast cancer varies greatly depending on your individual disease. In this section of Living With HER2-Positive Breast Cancer, top oncologists explain the different treatment options and why a personalized, tailored approach is so important.

Treatment for HER2-Positive breast cancer may include the following approaches (or a combination of several):

  • Surgery
  • Chemotherapy
  • Radiation
  • Targeted drugs

Treatment for HER2-Positive Breast Cancer

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In addition to the type of breast cancer you have, several other factors must be taken into consideration to determine the best treatment approach — like how aggressive the cancer is and whether it has spread.

Some patients with early stage disease may opt for a lumpectoym (a surgery that removes just the cancerous tissue from the breast), while others may consider a mastectomy (a surgery that removes the entire breast).

“Depending on the size and other features such as family history, a patient may opt for more aggressive surgery,” Dr. Elizabeth Comen, a medical oncologist at Memorial Sloan Kettering Cancer Center, said.

“So even for an early, stage one breast cancer, a woman may elect a mastectomy to remove her whole breast. Then, once that surgery happens, a pathologist is able to look at that tissue underneath the microscope and decide what treatment a woman needs after the surgery has removed it.”

Surgery or chemo first? How treatment order is determined

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There are many factors that go into determining which breast cancer treatments a patient will be given, and what order those treatments will be given in.

Dr. Elisa Port, Chief of Breast Surgery at Mount Sinai Health System, explained to SurvivorNet that there are certain subtypes of the disease (including HER2-positive breast cancer) that sometimes benefit from having treatment first and then surgery.

The majority of other types of breast cancer will undergo surgery first, and then doctors use the information they learn during surgery to determine what additional treatment is needed.

“It’s very tailored, personalized precision medicine approach, for not only the person, but also the tumor,” Dr. Port said.

Treating advanced HER2-positive breast cancer

What is targeted therapy?

Targeted therapy, or matching treatments to diseases based on very specific characteristics such as genetic mutations, has changed the way several cancers are treated — and has made the doctor-patient conversations about treatment slightly more complex.

In the past, chemotherapy — which attempts to kill all fast-growing cells in the body — was considered the treatment standard for stage 4 breast cancer, but treatment methodologies are changing.

These advances involve testing your cancer for the presence of genetic mutations, or molecular features, which might be targets for relatively new medications. For some people, these medications are extending life in remarkable ways.

“The good news is that there are a lot of new treatments available that target the HER2 receptor,” Dr. Comen explained.

These include Herceptin and Pertuzumab (brand name Perjeta), which can be used together with chemotherapy and are usually used as front line treatments. That means it will be the first treatment you receive.

Another drug that used is T-DM1 (brand name Kadcyla), which is used if you have already been treated with Herceptin.

Lastly, another exciting new drug available called Tucatinib (brand name Tukysa), is now available for women who have not responded to Herceptin or Pertuzumab (brand name Perjeta).

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Kadcyla for early-stage breast cancer

It can be used as an adjuvant (after surgery) treatment for HER2-positive early breast cancer when the patient has taken neoadjuvant (before surgery) treatment including a taxane and trastuzumab (Herceptin®) and there is cancer remaining in the tissue removed during surgery.

For metastatic breast cancer

It can also be used to treat HER2-positive breast cancer that has spread to other parts of the body (metastatic breast cancer) after prior treatment with trastuzumab (Herceptin®) and a taxane. Prior treatment could have been for the initial treatment of breast cancer or for the treatment of cancer that had spread to other parts of the body.

How Kadcyla works

It attaches to a HER2 receptor: it’s designed to find HER2+ cells and attach to them. It tells the cells to stop growing and tells the body’s immune system to destroy them.

Goes inside the cell: it also goes inside the cell to keep fighting from the inside.

Breaks apart inside the cell: kadcyla releases the chemotherapy inside the cell.

Works to help kill the cell: The chemotherapy goes to work inside the cell, causing the cell to die.

Possible side effects

The most common side effects in people taking kadcyla for early breast cancer are tiredness, nausea, liver problems, pain that affects the bones, muscles, ligaments, and tendons, bleeding, low platelet count, headache, weakness, numbness, and pain in the hands and feet, and joint pain.

It can cause severe liver problems that can be life-threatening. It also may cause heart problems, including those without symptoms (such as reduced heart function) and those with symptoms (such as congestive heart failure). Receiving kadcyla during pregnancy can result in the death of an unborn baby and birth defects.

Other possible serious side effects include:

  • Lung problems
  • Infusion-related reactions
  • Serious bleeding
  • Low platelet count
  • Nerve damage
  • Skin reactions around the infusion site

Perjeta for HER2-positive breast cancer

Perjeta is given with another targeted treatment called Herceptin. Both treatments are designed to fight cancer cells that have too many HER2 receptors, but in different ways.

Perjeta is thought to block one of the methods of signaling so that certain receptors are unable to pair with HER2. These drugs work on different parts of the HER2 receptor, so they work together to build a stronger blockade.

For early-stage breast cancer

For some people with early breast cancer, it may be beneficial to start treatment before having surgery. This is called neoadjuvant treatment. One of the goals of neoadjuvant treatment for early breast cancer is to help reduce or get rid of cancer cells before surgery.

People with early breast cancer usually get treatment after surgery, even if the surgery was successful. This is called adjuvant treatment. Adjuvant treatment is given with curative intent to kill any cancer cells left behind after surgery, with the goal of keeping you cancer-free for as long as possible.

For metastatic breast cancer

A goal of metastatic breast cancer treatment is to help control cancer growth.

Perjeta and Herceptin-based therapy may be an appropriate option for people with HER2+ metastatic breast cancer that has spread to other parts of the body and has NOT been treated with traditional chemotherapy or HER2-targeted treatments before.

Tukysa for HER2-positive breast cancer

Tukysa is a targeted (biological) therapy. Targeted therapies interfere with processes in cells that help cancer grow.

It is is a tyrosine kinase inhibitor. Tyrosine kinases are enzymes that help control how cells grow and divide, among other functions. If the enzyme is too active or if a cell has too much of the enzyme, it can make cells grow uncontrollably.

Tukysa blocks a specific area of the HER2 gene in cancer cells, which stops the cells from growing and spreading.

Who is eligible?

You may be offered Tukysa if you have HER2 positive breast cancer that has spread to another part of the body or cannot be removed by surgery.

It’s given to people who have already had two or more other treatments specifically for HER2 positive breast cancer.

How it works

Tukysa helps control how cells grow and divide. It blocks the HER2 protein in the cancer cells, which stops the cells from growing and spreading.

How is it given?

Tukysa is taken by mouth as a tablet twice a day, every day. It can be taken with or without food.

It is taken in combination with trastuzumab (Herceptin) and capecitabine.

On the days you take capecitabine, you can take it at the same time as tucatinib.

Possible side effects

Like any treatment, Tukysa can cause side effects. Everyone reacts differently to drugs and some people have more side effects than others. These side effects can usually be managed and those described here will not affect everyone.

It is given together with capecitabine and trastuzumab, so you may have side effects from those treatments too.

Some possible side effects include:

  • Severe diarrhea, which can cause dehydration, low blood pressure, and severe kidney problems.
  • Liver problems, including elevated liver enzymes.
  • Nausea, vomiting and upset stomach
  • Feeling tired (Fatigue)
  • Mouth sores
  • Decreased appetite
  • Headache
  • Anemia
  • Rash

Surgery: What to Expect

What to know about breast cancer surgery

In many cases, surgery is part of the treatment plan for women with breast cancer. If you are planning to undergo surgery, you may be struggling to accept the emotional and physical side effects it can have, and wondering how you will adjust to your new body.

The guide covers the basics of mastectomy and lumpectomy, as well as how reconstruction works.

When should you consider a mastectomy?

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Mastectomy is the removal of the entire breast during surgery. There are a number of factors to weigh when considering a mastectomy — chief among them is whether breast-conserving surgery (or lumpectomy) is possible.

Your doctor will look at the size and features of your tumor as well as your family history in order to make a recommendation.

What is a nipple-sparing mastectomy?

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In a procedure called “nipple-sparing mastectomy,” doctors use special techniques to shell out a woman’s breast, leaving the skin and the nipple intact. The idea is to maintain, as closely as possible, the natural look of the breast.

After mastectomy, a plastic surgeon will use either an implant or the woman’s own tissue to recreate the breast.

Lumpectomy or mastectomy: Understanding the difference

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Choosing what kind of surgery to have is a very personal choice.

“As a breast surgeon, my job is [to help patients] understand that their long-term survival with mastectomy is equivalent to that with lumpectomy and radiation,” Dr. Sarah Cate, a breast surgeon at Mount Sinai Health System, explained.

Often women will request to have both breasts removed, believing it’s the best way to prevent the cancer from recurring. This is not always the case.

The size of the tumor, its genetic markers, and the patient’s family history are all factors to consider when choosing which surgery to undergo.

What are my reconstruction options?

Chemotherapy FAQ

Chemotherapy, hair loss, wigs: Answers to common chemo questions

If you ultimately receive chemotherapy as part of your treatment plan, you may be worried about a number of potential problems — from how you’ll feel mentally to the physical side effects and if you’ll be able to continue working.

We consulted experts to break down common side effects, how long they last, and plans you can make with your doctor to help mitigate them.

How will chemotherapy make me feel?

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Common side effects for patients receiving chemotherapy include but are not limited to hair loss, low blood counts, diarrhea, nausea, fatigue, and cough.

There are a lot of myths about how chemotherapy impacts people’s lives. It’s sometimes assumed that while undergoing chemotherapy you’ll be restricted to your home, and unable to move around but this is certainly not the case in many situations, Dr. Marleen Meyers, an oncologist at NYU Perlmutter Cancer Center, told SurvivorNet.

Many people can continue to work through treatment and Dr. Meyers encourages her patients to exercise, even if it’s just a walk. It can make a huge difference when dealing with fatigue, a common side effect of chemotherapy.

There are also treatments to help with the side effects of chemotherapy. Many medications are available for treating nausea and vomiting as well as anemia.

Can scalp-cooling devices stop hair loss?

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For some people, scalp-cooling devices may be able to help prevent hair loss. For others, hair loss may be inevitable — and that can lead to a lot of anxiety.

While many survivors embrace their temporary looks, others really struggle with the idea of people seeing them without hair. For women especially, hair is often very much a part of identity.

There are plenty of options available, including some created by cancer survivors, to help keep you comfortable during this time — including wigs, head wraps, and hats.

Coping with hair loss & the anxiety it brings

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Many people going through cancer treatment feel a sense of dread associated with the thought of losing their hair.

Such a drastic physical change may lead to anxiety and sleepless nights.

Patients can speak to their caregivers to see if any interventions are possible, and should also look into products that are specifically made for people dealing with temporary hair loss — like wigs, head wraps, and more.

Talking about these anxieties can help, but it’s also OK to say so if you are not comfortable discussing it, Psychiatrist Dr. Samantha Boardman stressed.

Body Image

Body image, sex, and feeling comfortable in your own skin after treatment

Cancer treatment can change your physical appearance in many ways that may be difficult to cope with.

With breast cancer, you may undergo surgery, radiation, and other treatments that alter both how you look and how you see yourself. Many survivors struggle with their body image during and after treatment.

What’s important to realize here is that these feelings are normal, there are things you can do to feel better — and, of course, you are not alone.

Body image, sex & adjusting to a new normal after treatment

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Many women struggle to feel comfortable in their own skin after undergoing cancer treatment. When it comes to feeling sexy and comfortable being intimate again, it may take time — and that’s OK.

A cancer diagnosis absolutely does not mean your sex life is over.

“It takes time after breast cancer [treatment] for some women to feel sexy again, to feel good in their skin again,” Dr. Elizabeth Comen, a breast oncologist at Memorial Sloan Kettering Cancer Center, told SurvivorNet.

Getting real about dating again after cancer: A survivor's story

Beautiful & badass — A survivor shares why she chose to get mastectomy tattoos

Yes, you can have lots of fantastic sex after cancer

Fertility options

Fertility options for women with breast cancer

Many young women diagnosed with cancer are concerned about how it will impact their ability to have a family in the future. Treatments like chemotherapy and radiation can harm eggs and reduce a woman’s chances of conceiving.

However, there are many options for fertility preservation, including freezing eggs or embryos for future use.

In this section of Living With HER2-Positive Breast Cancer, we break down fertility options and why it is important to speak to your doctor as soon as possible if family planning is important to you.

What are my options for fertility preservation?

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There are a variety of fertility preservation options for women who are diagnosed with breast cancer.

While these preservation techniques may not be an option for all young women with breast cancer, it’s important to speak to your doctor to learn what options may be available to you.

“Time is always of the essence when we see patients who have cancer,” Dr. Jaime Knopman, Director of Fertility Preservation at CCRM NY, told SurvivorNet.

“In our own practice, we usually see the patient the same day, if not the next day [after a diagnosis] because the sooner we start, the sooner that patient can then go on and do their treatment.

“A lot of the success comes down to how old you are at the time you froze, and the quality of the lab in which your eggs or embryos were frozen in,” she added.

Freezing eggs vs. embryos

Survivor Stories

Inspiring breast cancer survivors share what got them through treatment

When it comes to coping with hardships that come with a cancer diagnosis, patients turn to many different outlets. Here at SurvivorNet, we’ve spoken to dozens and dozens of breast cancer survivors about the unique approaches they took to get themselves through the tough times.

This section of Living With HER2-Positive Breast Cancer focuses on a range of different ways to stay positive — from faith and spirituality to finding humor in the struggle.

'Anything that comes, I'm ready': A survivor's story of turning to faith

Painting & dreaming: An artist's approach to coping

The pink tutu: A story of love, marriage & laughing through cancer

More Resources

Living with HER2-Positive breast cancer

You’ve made it to the end of our Living With HER2-Positive Breast Cancer guide. We hope you were able to find some helpful information and some of the support you are looking for as you continue your cancer journey.

Be sure to check out SurvivorNet’s designated section on breast cancer to learn even more about the basics of your disease, the specific type you have, and what you can expect during the treatment process — and beyond.

We also provide regular updates on any new treatment options as well as inspiring survivors stories.

At SurvivorNet, we’re here to help survivors like you navigate the complex world of treatment and living with cancer.

Thank you for being a part of the family!


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