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

This new classification of breast cancers, “HER2-low,” is making a significant buzz in the world of breast cancer research.

This is because these cancers can be targeted with a recently approved drug known as Enhertu (Trastuzumab deruxtecan).

Enhertu is effective for appropriate patients, and can greatly improve their quality of life and help them live longer. The recent data from the DESTINY-BREAST04 trial showed an improvement in progression free survival and overall survival in patients treated with Enhertu compared to physician’s choice chemotherapy alone in patients with metastatic breast cancer. Therefore, it is exceedingly important to accurately identify HER2-low patients who will benefit from this therapy and manage them whilst they receive their treatments.

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.

“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.

“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-low breast cancer in particular, doctors may have differing opinions on how to proceed with treatment.

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.

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.”

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.

Common side effects for patients receiving Enhertu include but are not limited to:

• Hair loss
• Low blood counts
• Diarrhea
• Nausea
• Fatigue
• 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.

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.

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.

When undergoing chemotherapy, the main diet goal is to maintain weight.

Krista Maruschak, a registered dietician at the Cleveland Clinic, says that eating six smaller meals a day and packing some extra calories and proteins into these meals when possible can make a big difference.

Extra calories doesn’t mean you should have a bag of potato chips with every meal. Things like nuts, dairy products, olive oil, avocados, and hummus are all healthy fats that will do the trick.

Dr. Marleen Meyers, a medical oncologist at NYU Perlmutter Cancer Center, told SurvivorNet that people living with cancer should focus on a healthy diet rather than trying to get their nutrition through supplements.

“A very important issue to remember…is that they are not FDA-controlled, which means that you don’t really know what you’re getting,” she explained.

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.