Discussing, Managing, and Treating HER2+ Breast Cancer From the Patient’s Perspective

The panel

Dorian Nygard had a recurrence and was diagnosed with HER2-positive breast cancer in 2016. She sought treatment at Memorial Sloan Kettering (MSK) Cancer Center and was referred to Neil M. Iyengar, MD, associate attending physician at MSK, and Odessa Williams, AGPCNP-BC, a nurse practitioner at MSK. At MSK, multidisciplinary teamwork is the main focus to give patients the support they need to get through treatment.

Iyengar, Willams, and Nygard spoke during a CancerNetwork From All Angles program about Nygard’s initial diagnosis, the care coordination she received, the communication that she had with physicians, her journey through therapy, and the adverse effects (AEs) she dealt with.

Diagnosis of Recurrent Breast Cancer

Iyengar / What was your experience surrounding your recurrent breast cancer diagnosis?

Nygard / For several months, the skin on my breast started to look different. There was a tender area, and the affected area became bigger and red, and it started to bleed. I had been trying to get another diagnosis so that I could get treatment, but I needed to go to see someone at MSK. I was immediately referred to a surgeon, Dr Mahmoud El-Tamer, and he did a punch biopsy to get that diagnosis.

The tests that I underwent were a punch biopsy and a PET scan. I had a battery of blood tests and an MRI because they found that 1 tumor was in the L2 vertebra. They also found that there were 2 places in my liver that had cancer, as well as in my breast. To get a better idea of what the vertebra looked like, I had to do an MRI. I had to take an MRI of the vertebra, and I also had a liver biopsy.

I was very worried about what would happen because it metastasized, and I wasn’t sure how it was going to be taken care of and whether I could get well, or at least well enough to do the things that I’d like to do and be the mother and grandmother that I’d like to be. I was concerned that it would be too late for them to treat me, but Dr Iyengar assured me that there were many treatments he could use, even some that were being looked at as something for the future. That’s pretty much where I was in 2016.

Iyengar / A histologic diagnosis at this point is critical. Hence the biopsies that Dorian went through, and one of the main reasons for doing this is to reprofile the receptor status of the breast cancer depending on an individual’s presentation. We know that typically the HER2 receptor is preserved, but there are scenarios where HER2 expression can either be further amplified in an individual who did not have a HER2-amplified tumor and the tumor evolves or vice versa, [where] a potential resistance mechanism is a loss of HER2 for individuals who had been receiving HER2 treatment. At this point, the priority was to reclassify the tumor subtype by receptor staining. We also use this opportunity to do next-generation sequencing.

Coordination of Care With the Multidisciplinary Team

Iyengar / Odessa, can you give us an overview on care coordination, how we get all the various pieces together, how we approach it at MSK, and all the different health care professionals involved once a person has been diagnosed with breast cancer?

Williams / I will say that it’s not just health care professionals. From the time a patient is diagnosed with breast cancer, we have an administration such as CarePass, which, in MSK, helps a patient get an appointment. We also have to get all the information. If they did outside pathology, any imaging, or even if they have a history of breast cancer, we need to get all those treatments or any notes.

Then they’re assigned an oncologist and a breast surgeon. Sometimes they just need a breast surgeon at first and then the oncologist comes in, or sometimes patients are assigned both a breast surgeon and an oncologist at the time of diagnosis. From there, they will see the providers. They start with a surgeon to see if they need surgery, and then they’re referred to an oncologist. If we talk about the HER2 situation, we have some patients who sometimes need treatment prior to having surgery, so they see an oncologist first. If that oncologist has a nurse practitioner like me, they’ll see them. Most oncologists have office practice nurses, so they are also part of the coordination.

When [the patient] begins treatment, they would see the oncologist and nurse practitioner, because [they’re] a team. The office practice nurse assists when [the patient] has questions about treatment and if they have symptoms. When [the patient] contacts the office, the secretary would route it to the nurse because they’re the first point of care. If they need radiation, then we refer them to radiation oncology. If a patient has pain, we refer them to supportive care/palliative care. If [the patient] needs help with transportation, we have a social work team as well. If [the patient] is not handling the diagnosis well, then we have psycho-oncology services. Many people and many teams play a factor in coordination care.

Iyengar / It’s important to note that a multidisciplinary team is critical for providing whole-person care and addressing the many factors that are involved in experiencing breast cancer treatment. Having heard all of that from the provider side, Dorian, could you share how you experienced this coordination of care? What was your experience as a patient?

Nygard / I experienced intake and gave all the information from my previous cancer diagnosis to MSK. After I met you, Dr Iyengar, I started the treatment with chemotherapy, and as that progressed, I had some rashes, so you referred me to your dermatologist at MSK. I also started to get some neuropathy and was referred by [Dr Iyengar] to the neurologist. I saw a wound care specialist because my breast was bleeding, and she prescribed some Medihoney and told me how to bandage my breast area.

I saw an integrative medicine physician about diet and was encouraged to continue with a fully organic diet, to add mushrooms to the diet, to be careful about what I put in my body and what creams to use so that my body is exposed to fewer chemicals. I felt that everyone, and Dr Iyengar in particular, was very competent in their professional area, and they showed me compassion and understood that I was feeling overwhelmed and was unsure what was going to happen to me.

Iyengar / I’m so pleased to hear that feedback. Certainly, it can be overwhelming, with so much going on and so many providers involved in your care. We do try to, or strive to try to, as your medical oncology clinic, act as your quarterback, if you will, and coordinate all of this. I’m very happy to hear your experience.

Patient and Clinician Education

Iyengar / Odessa, could you talk about how we strive to educate patients on our treatment recommendations and how we might tailor that to the individual?

Williams / It always starts with either me or Dr Iyengar telling [the patient] what their treatment is going to be. We try to give an overview of adverse effects, to help [the patient] understand what they’re about to be taking. Whether it’s nausea, constipation, or neuropathy, we always let [the patient] know about [AEs] and provide written documentation.

A lot of times [the patient] is listening to us, but it’s so much information that we’re providing, a lot of the times, they’re not going to retain all that information. We always try to have them leave with written documentation about the treatments. Another thing that we do is what we call nursing teaching. It doesn’t matter whether you’re on chemotherapy, immunotherapy, or hormonal therapy; our office practice nurse will sit with you and go more in depth over the AEs of those treatments, and then either that same day or at the start of the treatment, we try to ask, either myself or Dr Iyengar, what questions you may have.

By that time, you’ve already had a visit with me or Dr Iyengar, you’ve already looked at the written information we’ve given you, and you’ve already had a nursing teaching, so a lot of times something may have been lost in translation or [the patient] may need more information about [the treatment].

We would answer any questions that [the patient] may have. Now we do have some patients who, because of their anxiety, don’t want to know too much. They don’t want to know all the AEs, but it is our duty to tell them everything that may occur, so we try to tailor it.

Iyengar / Dorian, could you share with us what kind of educational resources you may have used or who or what you went to when you were looking for additional information?

Nygard / I used the internet to read articles written by well-known oncologists and scientists. Because I’m not medical personnel, I had to look up terms and try to understand, to the best of my ability, what was happening, what the choices were, and what was out there. I did want to choose a very traditional medical treatment for the cancer. I didn’t want to do something experimental unless Dr Iyengar chose to put me in a trial.

Treatment Journey

Iyengar / Dorian, could you walk us through your treatment journey at MSK?

Nygard / [Dr Iyengar] gave me paclitaxel [Taxol], and there were several chemotherapy support medications that went along with it. I had pertuzumab [Perjeta] and trastuzumab [Herceptin] and was asked to let [Dr Iyengar] know of any reaction or response that I had. [Dr Iyengar] told me [about] the normal reactions, like being very tired, some mouth sores, being achy at times, and developing neuropathy. I asked [Dr Iyengar] a lot of questions that were very important to me about why he chose those medications.

I did find out because I had to have abdominal surgery that in 2021, the cancer came back. I spoke to Dr Iyengar about the symptoms that led me to the abdominal surgery. The cancer...was on my cranium, and I had an MSK surgeon who was absolutely wonderful and excellent, and he removed the tumor. Then I was put on capecitabine, tucatinib [Tukysa], and trastuzumab, and those are the 3 that I have been on since 2021.

Iyengar / Odessa, how do you prepare patients for the possibility of AEs, and what’s your general approach for managing AEs associated with therapy?

Williams / You can never fully prepare someone for AEs, because it’s very individualized. Everyone deals with AEs and treatment differently. We try to give [the patients] all the information possible to help them.

First, the nurse talks about AEs and the ways to help manage them during the teaching. For example, if we’re doing paclitaxel, trastuzumab, and pertuzumab, we talk to [the patients] about the potential of diarrhea. We talk about the potential use of loperamide [Imodium] if they have more than 3 episodes of watery stools. We talk about neuropathy and all the different ways you can experience it, whether it’s numbness, tingling, pain, or itching, because patients experience neuropathy in many ways. We try to manage [neuropathy], whether it’s through acupuncture or medication.

If it becomes very bad, we refer them to neurology. If a patient has bad joint pains or body aches, we try to manage that through medications by monitoring if [the patient] should continue with the paclitaxel, trastuzumab, and pertuzumab regimen. If it’s even more debilitating than that, we refer them to supportive care. We try to help our patients be self-sufficient and maintain a seminormal life by managing those AEs.

AE Management

Iyengar / What AEs did you experience during your treatment, and [what AEs] are [you] currently experiencing? What strategies have helped manage these AEs?

Nygard / The AEs that I found, especially with capecitabine, are the soles of my feet and palms of my hands turning red. The skin on my hands and feet also started cracking. For that,
I make sure to use the cream that has the fewest chemicals.

I get nauseous after taking capecitabine. I found that a little baking soda and water with the juice of half a lemon helps my stomach, even though it’s not the most pleasant tasting. Other times I eat less food.

The fewer medications I take, the better I am. I get severe asthma when I have back pain, which is an effect of the tucatinib. My husband rubs the muscles of my back, which helps. When I get mouth sores, I use salt water and sometimes a little baking soda. I had some diarrhea, but the 2 types of probiotics I take help a great deal. I get muscle cramps at night, but magnesium relieves them, and I can spend the whole night without any cramps.

I found [lipoic acid] to be very helpful in dealing with neuropathy. It doesn’t fully get rid of it, but it does make [the neuropathy] weaker. I get headaches and upset stomachs. I have joint aches. I do get rashes at times, and I use the cream that the dermatologist gave me. I also use essential oil for any of the pain that I have. The essential oil I use is frankincense, and that helps a great deal. Those are the things that I have done that helped me to get through the AEs.

Iyengar / Odessa, what other types of supportive care do you consider for patients who are being treated for metastatic breast cancer? How do you involve practitioners in those areas?

Williams / We try to manage patient AEs, but sometimes we need a little help, whether it’s for nausea, constipation, troubles with sleep, or pain. That’s where supportive care comes in.

Some people don’t want to do the traditional treatments. We try to involve integrative medicine where [the patient] does acupuncture or they give them safe herbal supplements that don’t interact with their current treatment. We have patients with nausea who don’t want to take common medications such as ondansetron [Zofran] or prochlorperazine [Compazine].

They would prefer to drink ginger tea or take ginger candy, because they don’t want to constantly be taking medications. Supportive care helps. We give all options in terms of medications. Integrative medicine helps with complementary therapies.

Closing Thoughts

Iyengar / Odessa, what advice can you share with fellow nurse practitioners, nurses, or oncologists? Are there any pearls [of wisdom] that you have for managing patients with HER2-positive breast cancer?

Williams / My biggest pearl is that, yes, we’re health professionals, but we have to remember that a patient is a person. We have to give them all the information they need to be educated about their diagnosis, the ways to treat it, and how they can contribute [to the therapy], but we also have to remember that they are humans and that sometimes it does take a while for them to adjust to their diagnosis. It takes a while for them to understand that this is a lifelong journey, and sometimes we have to give them some grace. Just be understanding, be there for them, and answer all the questions that they have.

Iyengar / Dorian, what should we walk away with from this conversation, from the patient’s perspective?

Nygard / Here’s a message to the clinicians: Dr Iyengar explained to me at the very beginning that the cancer had metastasized, and that scared me. He could see that, and he spoke about it without making it a huge deal. He told me there were many things that he could do, many medications, many combinations, and that I could become a part of a trial. He was compassionate and gave me that information because he knew it was scary. That’s what I would like clinicians to know mattered to me.

As for patients, don’t look for the closest hospital; find the best one and go there for their clinicians and oncologists. Make sure that you have a positive attitude, and when you lose that attitude, as we all do, because there’s always ups and downs, choose somebody that is going to help you achieve that positive attitude again. Pray. Have a prayer life. Have faith and surround yourself with supportive people. That, I think, will help you get through.