Growing up, Robyn Fine and her younger brother, Jason Fine, were “two peas in a pod,” spending their summers outdoors, sans sunscreen, she recalls.

Robyn Fine received a diagnosis of stage 1 melanoma in 2009, followed by an excision.

The discovery of a lump in her left breast led to a diagnosis of stage 4 melanoma in the fall of 2012. She sought treatment at Minnesota’s Mayo Clinic and found that cancer had spread to her back and brain. Treatment with craniotomies, radiation, oral chemotherapy and immunotherapy followed.

In 2014, Jason Fine visited and mentioned a lump under his armpit that doctors had attributed to an infection.

“I was on one of my last therapies, the oral chemotherapy for brain tumors, and my brother got this devastating news that he had stage 4 melanoma,” Robyn Fine says.

After Jason received his diagnosis, Robyn flew between her home in Minnesota and his home in Arizona to assist in her brother’s care.

“I flew back and forth to help my sister-in-law take care of him, because none of the treatments worked for him that had worked for me, and it was very hard on them. And his metastasis kept spreading, no matter what treatment he received. It kept spreading, and it was really hard to watch him deteriorate ... and take him back and forth to the hospital and care for him at his home and also try to take care of myself,” she says.

During the experience, Robyn Fine says her self-care, mostly regarding her mental state, took a hit, but she was able to see her oncologist when necessary and stayed in contact with her care team while in Arizona.

“We know from the literature that (caregivers) are often reporting really high levels of stress, distress and anxiety,” says Christine Vinci of the department of health outcomes and behavior at the Moffitt Cancer Center in Tampa. “In fact, in some groups of cancer caregivers, they report higher levels of stress than the patients themselves.”

Vinci is the principal investigator of COMPASS, a study funded by the National Cancer Institute that is currently recruiting caregivers of patients who receive bone marrow transplants. Vinci and her colleagues are evaluating the efficacy of a six-week mindfulness-based stress management program for caregivers when compared to both a healthy living intervention that promotes caregiver self-care and treatment as usual.

“(Often), for the caregivers, support groups are available, but otherwise there is not a lot directly offered to them,” Vinci says. “And they usually don’t have a lot of time to attend these groups that are scheduled at a specific time during the week. We’re actually delivering our intervention one-on-one based on the caregiver’s schedule. We’re looking to see if this mindfulness-based intervention actually helps support caregivers more than if they weren’t receiving anything like this at all.”

Robyn Fine says, “You have to have a great support system, and you have to take care of yourself because it’s draining, it’s heartbreaking, it’s emotional, it’s mentally debilitating. It’s heartbreaking to have gone through the suffering that I went through on my own and to know that my loved one was going through that and worse. So, you have to have that support, you have to have that therapy. Those relationships with other people that are going through this disease are so important; you have to make those connections.”

Robyn Fine has gone 10 years without evidence of disease. Her brother died in 2015 from melanoma, 11 months after receiving his diagnosis.

In 2014, she began volunteering with the Melanoma Research Foundation and is involved in peer-to-peer support through Imerman Angels, a nonprofit organization for patients with cancer and caregivers. Robyn is also the education lead for Connect Melanoma, a nonprofit group that educates about melanoma and advocates for melanoma research funding.

“As a mentor, as a support person, I still have to take care of myself, and I’m so glad to be able to support others to mentor them through this diagnosis. Because you can’t do this alone,” she says.

Approximately 1 in 3 adults in the United States serves as an informal or family caregiver, according to the Mayo Clinic, which cautions that the depression and anxiety, as well as lack of sleep, physical activity and balanced diet often experienced by caregivers can increase risk of health conditions such as heart disease and diabetes.

“All of our basic needs, like sleep, hydration, good nutrition, being physically active, even if brief and not be overly sedentary — those are the key things” for caregivers to recognize in the interests of their own health, according to Erin Kent, associate professor and associate chair in the department of health policy and management at the University of North Carolina (UNC) Gillings School of Global Public Health in Chapel Hill.

“Caregiving itself is a stressor because there (are) so many unexpected (elements),” says Kent, who also runs the Caregiving Collaboratory at UNC and is a member of the North Carolina Serious Illness Coalition’s Caregiving Collaborative.

“We put so much expectation and responsibility on the shoulders of (caregivers) ... (and) that is why the caregiver themselves should be treated as someone who is essential to the care of that care recipient, but also someone who is at risk for becoming overwhelmed or becoming so burdened to the point of exhaustion or being sick them- selves,” Kent says.

To avoid burnout, the American Cancer Society suggests enlisting backup caregivers and looking into short-term relief known as respite care, which can include in-home care, adult care centers or other facilities.

“This is a time not to be stoic and not to be thinking that you can take it all on,” Kent says. “I think this is a time to call on networks of friends and family members (who) maybe want to help but don’t know how to, by trying to even deputize someone to be the information disseminator. And sometimes if you have one trusted friend, (they) can be the person to organize a meal delivery or care communication website, I think that’s really critical for family members in this situation, especially if both people are sick.”

Cancer centers are becoming increasingly attuned to family members’ needs, with many facilities having patient and family resource centers, Kent says.

“We have a support group in our cancer center just for caregivers that meets weekly, and we have additional resources (available) that way,” Kent says. “So fortunately or unfortunately, depending (on how you look at it), one has to be somewhat of a squeaky wheel and make it known that this is a hard time so that the problems don’t continue to get worse.”

Sonja Atkins is used to taking care of people.

Atkins, 56, lives in Florida and has worked as a nurse for many years. She also has served as a cancer caregiver for multiple generations of her family members.

“My mom was diagnosed in 2016 with lung cancer,” Atkins says. “And I cared for her up until she died (later that year).”


At the time, Atkins was already caring for her son, Ryan, whose cancer journey began when a headache led to the discovery of a brain tumor in 2011.

“I’m glad I was a nurse and have a lot of experience with, of course, things medical, but also resources and stuff like that,” Atkins said. “Because one of his medications was a couple of thousand dollars a month, and we (couldn’t) afford that. But because of my background and knowing resources, I was able to arrange that for us through a grant program.”

Ryan, a father of two whose children are now 18 and 8, had an unlikely chemotherapy companion after Sonja received a diagnosis of triple-negative breast cancer in 2017.

“When I got the diagnosis, the hardest thing, I think, was telling my grandchild who was living with me at the time,” she says.

“They had just experienced me caring for (my mother) who died of cancer, and they knew the struggles that Ryan had. So my biggest hurdle was telling them that not everyone dies when they have a cancer diagnosis. After that, it was scary. I had never thought about my own death or the possibility that I could have a disease that killed me, and then I had the experience of my mom dying and then Ryan’s recurrence after recurrence. I was really scared, but Ryan was a big supporter.”

Ryan underwent three craniotomies, radiation and multiple rounds of chemotherapy before he died in 2018 at the age of 31.

Like Fine, Atkins found and gave peer support to others who had loved ones with cancer through Imerman Angels, first being mentored by a woman whose daughter also had a brain tumor and has since passed away.

“I was able to mentor a couple of people whose children had either brain tumors or cancer and be with them through their journey of their child dying, and I had a couple of mentors (who) had breast cancer,” she says.

She was also sure to make time for herself. She’s hiked on the Appalachian Trail and traveled to Europe. After undergoing treatment, she has had more than five years without a recurrence of her cancer.

“I learned to live with no regrets,” she says. “And that really helped with my grieving process because I didn’t have any regrets. I didn’t leave anything on the table with Ryan. I did everything I knew how to do for him, but also when he was dying, (in) the end, I made sure that I spent time with friends (and) had my own life because I didn’t want to get to the end of that journey and (have) Ryan be gone and I not have a life and just be totally lost.

“I was taking pottery classes and art classes and just doing things that supported me so that I could take care of Ryan. And those were huge after Ryan died because I already had something in the works, I already had a foundation that I was able to go to.”

Attention to self-care is consistent with the recommendations of Gregory Blake, a resident in counseling on the board of trustees and the advisory board for Cancer Hope Network. It’s akin to the lifesaving guidance he taught to Boy Scouts for years: When a drowning victim is trying to climb on top of you, it’s necessary to first put a safe distance between you and them before you can try to help.

“If the lifeguard goes down, everybody goes down,” Blake explains. “And that is the premise to which I approach all caregiving.

“Every caregiver has to be totally aware of their limits and preserve themselves. ... In the cancer milieu, I cannot take care of the person I’m caring for if I’ve allowed myself to become depleted because nobody wins and everything falls apart.”

Blake has been on both sides of the cancer experience. He and his wife, Marilyn, lost their infant son, David, to leukemia in 1985, and Marilyn died of pancreatic cancer in 2018. Gregory received a diagnosis of lymphoma in 2019, which was caught early and treated immediately.

“If faith is one place that they can find solace, immediately, it’s a strong one. Their church or place of worship can be a great source of support, because ... there are community groups, support groups,” Blake says. “If they’re not a person of faith, there are many other kinds of support groups. We are also blessed with the fact that we can connect virtually now. So, look for those things that help you feel that normalcy again.”

Along with forging personal connections, Blake recommends that caregivers be mindful of connecting with a palliative care team while advocating for themselves and the person they are caring for.

“If I’m the caregiver, yet I need caregiving too because I have cancer, I must find a caregiver who will advocate for me too,” Blake said. “I’m advocating for him, (but) who’s advocating for me? Because both of you are not going to go to the same oncologist, you’re not going to go to the same centers, you are on different cancer journeys.

“And so the caregiver needs a caregiver, in a way, and sometimes they don’t see that. Often they think they are fine, that they’ve got this, but all too often that’s just not the case.”

Blake advises patients and their caregivers who are also sick to seek separate peer-to-peer support and community connections.

“And so the caregiver needs a caregiver, in a way, and sometimes they don’t see that. Often they think they are fine, that they’ve got this, but all too often that’s just not
the case.”

For more news on cancer updates, research and education, don’t forget to 

Articles

Those caring for loved ones with cancer are “at risk for becoming overwhelmed or becoming so burdened to the point of exhaustion or being sick themselves,” one expert says.

What Happens When the Cancer Caregiver Needs a Caregiver?

Personalized therapy in breast cancer has advanced over the years, and the Breast Cancer Index test has aided patients in the decision-making process.

As part of the Speaking Out video series, 

 spoke with Marla Sustin, a nurse practitioner at University Hospitals Seidman Cancer Center in Cleveland, about the role of genomic testing and its effect on the decision-making process for personalized therapy in breast cancer care. For example, a practitioner can use the Breast Cancer Index, which is a genomic test to determine a patient’s risk for recurrence between five and 10 years after diagnosis and whether they would benefit from extended hormonal therapy.

Q: How does genomic testing determine the best treatment for patients? 

A: It has a great influence in that when you’re looking into genomic testing, you can really identify a certain treatment that would benefit (patients with) that particular type of cancer. ... And it is different for everyone. Genomic testing ... also plays a part in endocrine therapy (decisions) — who would benefit the most and (for) how long. ... Research has shown targeting a specific gene mutation or protein can really decrease (a patient’s) risk of recurrence and death from breast cancer. For example, Herceptin (trastuzumab) was one of the first targeted therapies (approved by the Food and Drug Administration), and we know the success (it) has had over the past 30 to 40 years.

Q: How does the Breast Cancer Index play a role? 

A: We have patients who are estrogen- and/or progesterone-positive and are put on anti-estrogen medication, whether it be tamoxifen or one of the aromatase inhibitors. When I first started almost 20 years ago, five years (of treatment with aromatase inhibitors) was it; there was nothing else and you would come off (the drug). Then studies (started to show that) 10 years (of treatment could be) more beneficial. But now we know that’s not for everybody.

And with genomic testing, particularly with the Breast Cancer Index test, it will tell us if a (patient) will benefit with extended therapy, or (benefit with just) five years (of it). And then it will also tell us what (the patient’s) risk of recurrence is. And these drugs can be a little harsh with side effects. So it’s very helpful.

Q: Can you elaborate on how the length of treatment is tailored for patients based on the Breast Cancer Index?

Not one size fits all. We have patients who do very well on medication, and they’re happy either way with five versus 10 years (of treatment). And there are some patients who really have a hard time with it. Some people simply just don’t want to be on medication if they don’t have to be. So with the Breast Cancer Index test, it offers (patients) more information so they can take control of that decision-making.

For example, (a patient underwent) Breast Cancer Index testing, and her results showed only a 4% risk of recurrence; (but it also showed) that she would benefit from extended therapy. The discussion to have is ... (if they would prefer) to continue on (extended therapy for) another five years to bring that down to about 1.5% to 2%. So there’s a lot of joint decision-making.

Q: How does quality of life play a role in shared decision-making?

The medications that are prescribed — the aromatase inhibitors or tamoxifen — work in different ways. ... These medications come with a lot of side effects, and some of them are intolerable. ... So (treatment) does have an effect on everyday life.

Q: How can patients use the Breast Cancer Index in their decision-making process?

I have had patients over the past year or so start asking for (the test). ... It’s going to tell (a patient if they) need to stay on (endocrine therapy) for five years or for 10. They use it as a decision-making tool along with their provider (based on) what their risk (for recurrence) is. ... So they look at (the Breast Cancer Index score) as another tool to help them steer their treatment.

Q: How can patients learn more about their treatment options?

Ask questions and read from reliable sources. ... Ask those questions: Is it for you? Is it something that you would even qualify for? Is it beneficial? Always go to reliable sites, and you can get all your information there and then formulate questions or concerns that you can discuss with your provider.

Transcription edited for clarity and conciseness.

Speaking Out

A nurse practitioner talks about personalized therapy and the role that genomic testing plays for patients with breast cancer.

Tailored Treatment for Breast Cancer

night’s sleep during breast cancer treatment is vital to a patient’s emotional, social and physical well-being. However, many patients struggle due to anxieties and side effects from treatment.

Patricia Carter, who holds a Ph.D. in nursing and is an associate professor at the UT Austin School of Nursing, part of UT Health San Antonio in Texas, spoke with CURE about why patients with breast cancer experience poor sleep, how it can affect them and ways to manage it.

Carter said patients with breast cancer often struggle with sleep during treatment. Besides experiencing poor quality of sleep in general, many patients may also develop insomnia or restless legs syndrome. Additionally, patients who had sleep disorders, such as sleep apnea, before a diagnosis may see the problem worsen during treatment.

“It’s really very common,” Carter said. “More than half of people going through cancer treatments (experience poor sleep).

“Especially people with breast cancer, since it tends to be mostly women, and women tend to have more of a difficulty sleeping anyway — this just accentuates that even more.”

Carter, who is also a sleep scientist, explained that because cancer is traumatic, patients may try to push aside their worries or anxieties during the day, only to have them creep back at night. Patients lie awake with worry; they become concerned about not sleeping, but cannot doze off because of their fears. The cycle feeds itself.

“So that’s a combination of a psychological experience that they’re having with even just the trauma of the cancer diagnosis, and then all the worries and fears that come along with (it)," she said. "So, all of those worries come to us during that time we’ve psychologically experienced that, which disrupts our ability to sleep well.”

Moreover, sleep can be affected due to physical side effects of treatment. Many therapies can cause fatigue in patients; they also can affect hormone balance, which keeps everything in check. Carter noted that a lot of patients feel their days and nights have switched — because they are so fatigued from treatment, they are sleeping during the day but are awake all night.

Additionally, side effect management can cause sleep disturbance, such as Benadryl making patients drowsy during the day or steroids causing them to awaken at odd times during the night.

“So, there are a lot of things that go into how receiving cancer therapy to save your life actually really majorly disrupts your life and the pattern of your life,” Carter said. “And that disruption of the pattern of your life can disrupt your sleep, as well. It’s such a complex mosaic of, how do we perfectly balance all of these things so that we can achieve a cure, so that we can get our best rest and so that we can be our best person and live our best life? And it’s just a really delicate balance.”

Patients with breast cancer may be dealing with more than just a rough night of sleep that anyone can experience. What can make it more serious, or a disorder, is when it becomes a pattern of behavior, happening several nights a week for a few weeks in a row, Carter noted. Furthermore, it can become a significant problem by how much it affects the patient.

“We have to look at sleep similar to how we look at pain,” she explained. “The quality of sleep is what the individual defines it to be. We can look at all of these different objective measures ... but if all of that doesn’t come together and provide the individual with the energy that they need to do what they want to do during the day, then it’s not sufficient for them.”

Quality of life can be diminished because of this, Carter highlighted. Patients may feel so fatigued that they cannot do what they want, or their not sleeping at night leaves them without the energy for daytime tasks they need to accomplish. Fortunately, sleep is manageable, meaning it can be taken into the patient’s hands.

Carter said many patients have benefited from taking control of their sleep patterns and routine, improving their quality of life. They also find comfort in knowing it is something they can work on as their journey continues.

“With that freight train of cancer coming through their lives ... being able to have something, anything that they can have a little bit of control over makes them feel like they have a better quality of life for that moment,” she said. “And knowing that they can use those skills as they move throughout their therapy into survivorship, it helps them know that they can have just a little bit of control over something that they can wrap their hands around.”

Patients with breast cancer should care about their sleep and work to improve it because sleep affects every cell in the body. Growing research demonstrates that if a patient is sleeping well, their immune system function is improved — which in turn may fight the cancer better, Carter highlighted.

“So, if you’re sleeping well, your body is going to have a better chance; it’s going to have more energy literally to fight your cancer,” she added.

Moreover, a good night’s sleep will help a patient see “small rays of light,” and find more joy in life.

If a patient sleeps well, they will feel well and start to view the glass as half-full, Carter said.

“It affects you socially, emotionally, physically, psychologically, so it really impacts every single element of your life, every single day,” she concluded.

Breast cancer treatment can disrupt patients’ quality and quantity of sleep, leaving them fatigued and restless during the day.

The Wrong Side of the Bed: Breast Cancer and Sleep Disturbances

Cancer is an intelligent disease. Tumor cells often find ways to outsmart therapies that once kept disease from progressing. Some genes develop changes, or mutations, that allow cancer to grow unchecked.

Such is the case with the ESR1 mutation, a genetic change that occurs in approximately 20% to 40% of people who have hormone receptor (HR)-positive breast cancer and are treated with certain hormone (endocrine) therapies.

“The majority of breast cancers — about two- thirds — have this protein called estrogen receptor,” says Suzanne Fuqua, a professor at the Lester and Sue Smith Breast Center at Baylor College of Medicine in Houston. “That receptor becomes the driver for the majority of breast cancers in women. If your tumor has the estrogen receptor present, it fuels the cells to grow and proliferate.”

Oncologists use a variety of endocrine therapies to treat patients with HR-positive cancers before and after surgery. When making treatment decisions, they evaluate a patient’s breast cancer type, whether they are pre- or postmenopausal and which treatments they have already received. They may treat Or patients may be treated with drugs that reduce the amount of estrogen in their body, known as aromatase inhibitors (AI), that are only effective in patients who are postmenopausal because the source of estrogen in this case is from the conversion of androgens to estrogens mediated by the enzyme aromatase. AIs include Femara (letrozole), Arimidex (anastrozole) and Aromasin (exemestane).

Fuqua says that during the past two decades, emerging science has led to increased use of AIs, adding that these agents seem to delay cancer recurrence “a little bit better” than SERMs.

“Everyone around the world pretty much switched their patients to aromatase inhibitors,” she says.

However, as the use of AIs in treating patients with breast cancer increased, clinicians noted a key change in those whose cancer had spread, or metastasized. When endocrine therapies denied estrogen receptor (ER)-positive cancers the hormone they needed to grow, certain genes mutations were favored selectively through the process of tumor evolution.

“The ESR1 gene is the gene that encodes for the estrogen receptor, a key driver of tumor initiation and tumor progression in hormone receptor-positive breast cancers,” says Dr. Rinath Jeselsohn, an assistant professor of medicine at Dana-Farber Cancer Institute in Boston. Estrogen receptors without a mutation need both estrogen and proteins known as coactivators to become activated, she says.

But when the ESR1 gene has a mutation, the estrogen receptor in the cancer cell changes and allows coactivators to bind to it without estrogen. In short, the estrogen receptor no longer needs estrogen to become active and help cancer grow. “This means that drugs such as aromatase inhibitors that block the production of estrogen will not be effective in the presence of an ESR1 mutation,” Jeselsohn says.

ESR1 mutations allow cancer to spread in patients being treated with certain endocrine therapies, according to Jeselsohn. “In patients who have primary hormone receptor-positive breast cancer, these mutations are very rare,” she says. “They really evolve when patients are treated with aromatase inhibitors.

In particular, they evolve during treatment with aromatase inhibitors in metastatic disease.”

For patients with metastatic breast cancer, ESR1 gene mutations require a therapeutic change to stop cancer from worsening.

Dr. Kelly Shanahan, 63, of South Lake Tahoe, California, is one of those people.

In April 2008, Shanahan was 47 and had her own busy obstetrics/ gynecology practice. After a routine mammogram revealed early-stage, HR-positive, HER2-negative breast cancer, she considered her options. As a busy doctor and mom to a then-9-year-old daughter, “I didn’t have time to drive 45 minutes each way, five days a week, for five to seven weeks for radiation therapy,” she says. Instead, Shanahan opted for a bilateral mastectomy.

When a biopsy confirmed cancer in one of her lymph nodes, she began a 16-week course of chemotherapy followed by an AI. But when the drug caused arthritis symptoms that made performing surgery difficult for her, she stopped taking it.

Later, excruciating back pain sent Shanahan for a PET scan and MRI. The results shocked her.

“I had cancer in every bone in my body,” she says.

She spent the next 14 months on a regimen of intravenous chemotherapy. When her treatment ended, Shanahan — by then retired from her medical practice — began taking Aromasin, an oral AI.

For six years, she had no evidence of active disease. But in April 2021, her disease progressed. A blood test known as liquid biopsy confirmed a mutation in the ESR1 gene and a mutation in the PIK3CA gene. Aromasin was no longer working.

“Most people get two years on an AI alone,” Shanahan says. “I got six years out of it.”

ESR1 mutations are not unexpected in people with metastatic breast cancer who have been treated with AIs. The mutation was first identified by Fuqua in the 1990s when she examined laboratory samples of metastatic breast tumors. She hypothesized that mutations in the estrogen receptor were allowing cancer cells to bypass the therapies used at the time and driving the metastatic behavior of cells.

Her research was controversial, she says. She notes that she was using metastatic tumors, whereas other breast cancer research focused on primary tumors. 

“Now the field has changed to where we know that the metastatic tumor is different from the primary tumor,” Fuqua says.

Larger studies done in 2013 and 2014 used next-generation sequencing to study metastatic samples, including research led by Jeselsohn, helped researchers “really start to understand the significance of ER mutations,” Jeselsohn says. “Since then, we’ve been learning more about them in the lab. In the clinic, we’re understanding more about the resistance they cause.”

Today, biopsies of metastatic tumors, liquid biopsies and tumor sequencing allow oncologists to target drug treatments to specific mutations such as ESR1. Previously, clinicians would typically treat people with a cancer recurrence in the same way their primary cancer had been treated.

With a liquid biopsy, Fuqua says, doctors can determine whether mutations are developing during treatment. “What we’ve found is that patients with ESR1 mutations quickly have another recurrence when they’re on an aromatase inhibitor alone,” she says.

There are other treatment options for people who develop resistance to AIs. Many get a monthly injection of Faslodex (fulvestrant). This selective estrogen receptor degrader (SERD) binds to the cell’s estrogen receptor and breaks it down, disrupting the cell’s signaling pathway. Shanahan was taking Faslodex and Ibrance (palbociclib), a CDK 4/6 inhibitor and a type of targeted therapy that blocks the CDK4 and CDK6 enzymes that fuel cell division, until September, due to progression of her disease. She is currently enrolled in an endocrine therapy clinical trial.

“When a patient develops an ESR1 mutation on an aromatase inhibitor in the second-line and beyond setting, we tend to use (Faslodex)-based therapy,” says Dr. Aditya Bardia, director of the breast cancer research program at Massachusetts General Hospital Cancer Center in Boston. “Some physicians would use (Faslodex) alone. Some would use (Faslodex) plus a CDK 4/6 inhibitor, and some would use (Faslodex) plus Piqray (alpelisib), a PI3 kinase inhibitor, if a patient has PIK3CA-mutant breast cancer.”

Postmenopausal women and adult men with ER-positive, HER2-negative, ESR1-mutated metastatic breast cancer whose cancer has progressed after at least one line of endocrine therapy also now have access to a new FDA-approved oral estrogen receptor degrader.

In January 2023, the FDA approved Orserdu (elacestrant) for these patients.

“(Orserdu) has shown activity that’s superior to standard endocrine therapy, including (Faslodex) in a randomized phase 3 clinical trial,” Bardia says, referring to the EMERALD trial, in which participants taking the drug showed improved progression-free survival, which is the amount of time a patient lives without their disease progressing. He expects its approval to mark a practice change, as it may be used over agents such as Faslodex. Shanahan says she has looked forward to another treatment option for people with ESR1 mutations. “A lot of my friends are on (Faslodex),” she says. “Some of them have a lot of problems with the injections. They have pain and develop lumps on their (buttocks from the injection). I have zero problems with (Faslodex).” She says hydrating before her injection, exercising the day she’s getting the shot and turning on the seat heaters in her car helped to keep her comfortable.

Bardia notes there’s significant interest in other emerging therapies to treat patients with ESR1 mutations. He mentioned the new SERDs giredestrant and camizestrant as well as the PROTAC ARV471— all of which are being studied in clinical trials — as novel endocrine agents to watch.

Judy Morgan, 66, of Lafayette, Louisiana, has had breast cancer since 1993. Her initial treatment, which she calls “aggressive,” included chemotherapy, radiation and an autologous bone marrow transplant. Seven years later, cancer spread to her sternum. Surgeons removed the tumor, and she began taking Arimidex.

In 2017, Morgan needed a hip replacement. The news wasn’t good: Cancer had spread to her hip, and a subsequent liquid biopsy revealed an ESR1 mutation. She began a regimen of the CKD 4/6 inhibitor Ibrance and monthly Faslodex injections. But by 2021, the cancer had again progressed.

Morgan’s oncologist at The University of Texas MD Anderson Cancer Center in Houston recommended she enroll in the ELAINE 2 study, a clinical trial to evaluate the selective estrogen receptor modulator lasofoxifene in combination with the CDK 4/6 inhibitor Verzenio (abemaciclib).

The trial was open to postmenopausal and premenopausal women on ovarian suppression with locally advanced or metastatic HR-positive, HER2-negative breast cancer with an ESR1 mutation.

Morgan says she’s done well on the combined therapy, with the most notable side effect being diarrhea. “To me, the gain is worth more than any side effects that you may have to deal with,” she says. “I felt better, like there was an improvement in my overall health.”

Bardia encourages people with ESR1 mutations to ask their doctor if a clinical trial is right for them. 

“Any time there is disease progression, we recommend having a discussion with the physician about the standard options and clinical trial options available,” he says. “The advantage of a clinical trial is that it offers access to something that’s otherwise not available. In the metastatic setting, we often use therapy sequentially. The advantage of a trial is it increases the number of potential options.”

He also recommends that patients ask their doctors about getting a liquid biopsy. “It’s less invasive, and you can check it serially over time,” he says.

Fuqua encourages patients to have their tumors sequenced. “The challenge is making patients aware of the potential for targeted therapy,” she says. “We call it precision therapy. That’s the sexy word people like to use, but it’s finding the mutation in the patient’s sample and looking for what drugs we can use. That knowledge is your strength. Knowledge gives you your way forward with targeted therapy.”

Morgan encourages others with metastatic breast cancer and an ESR1 mutation to avoid being passive. “Don’t be afraid to try new things,” she says. “When you’re battling something like breast cancer, you want the latest and greatest.”

For Shanahan, self-advocacy means asking questions and being clear about what you want.

She told her doctor she didn’t want to take a medication targeting the PIK3CA mutation. When her doctor wanted to use Verzenio, the CDK 4/6 inhibitor known to cause diarrhea, before Shanahan’s road trip with her daughter, she declined. 

“Our doctors and care teams should educate us and point us in the right direction, but so much of the time, we have to do it ourselves,” Shanahan says, noting that she now advocates for others with metastatic breast cancer. “I think it’s incumbent upon us to educate ourselves because not everybody is going to have a care team that prioritizes that,” she says.

Her advice is not to be afraid to ask questions or to get a second opinion.

“As a doctor, when a patient told me she wanted to get a second opinion, I’d feel really smart if she came back and that person had agreed with my recommendation. And if they didn’t agree, then I learned something. A good doctor will welcome you getting a second opinion. We (patients) have to put ourselves first,” Shanahan says.

Editor's Note: Judy Morgan died shortly after this feature was posted online on Dec. 20, 2023. Our thoughts go out to her family and friends.

Winter 2023 | CURE

What Happens When the Cancer Caregiver Needs a Caregiver?

Tailored Treatment for Breast Cancer

The Wrong Side of the Bed: Breast Cancer and Sleep Disturbances

When Cancer Evolves

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