Metastatic Breast Cancer: Navigating Grief

Acknowledgment: This patient story is sponsored by Gilead Oncology and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted, and valuable information to patient communities. If you are interested in sharing your story, please click here.


At the start of 2017, Laura was the proud mother of a beautiful daughter named Taylor, pregnant with her son, Carson, and a newly promoted partner at her firm. Nobody could have guessed that, just months later, Laura’s life would take a drastic turn. She was diagnosed with metastatic triple-negative breast cancer.

Since her diagnosis, Laura has drawn strength from forging meaningful connections with fellow cancer fighters, participating in clinical trials, and sharing her story. An unexpected lesson has emerged: that neither grief nor the weight of her diagnosis can diminish the light she shares with others.

Laura’s story of metastatic breast cancer, grief, and end-of-life planning provides invaluable insights into the challenges within the metastatic breast cancer community and the resilience it takes to navigate the journey.

 

The Path to a Metastatic Breast Cancer Diagnosis

Getting pregnant with her daughter had been easy. Getting pregnant with her son presented a bit more of a challenge. After several miscarriages, Laura successfully underwent IVF, becoming pregnant with twins, one of whom she lost early-on.

Laura was hospitalized from pregnancy-related complications and, during Carson’s birth, hemorrhaged—but luckily, she recovered. Carson was delivered in April 2017 .

At her six-week follow-up, doctors recommended that Laura get a mammogram. It was just a routine procedure for women her age, they reassured her, to develop a baseline understanding of her body.

In September 2017, doctors contacted Laura and asked her to come back in for an ultrasound. After a series of concerning questions, and a number of additional tests, Laura learned on September 29th that she had stage IV metastatic breast cancer. The cancer had spread to her lymph nodes, ribs, and liver. She shares:

“My doctor told me that I could potentially live longer with treatment or clinical trials. This was incredibly challenging to navigate especially with my role at work and with a newborn. At the same time, I appreciate my doctor being honest so I could start my journey realistically.”

Laura’s mother, an oncology nurse, and Laura’s father, both helped take Laura to her treatments. As Laura reflects on this time in her life, she remembers her mother as an amazing resource in connecting with the community and asking the right questions.

Compounding Bad News

Laura’s life was thrown off-kilter as she tried balance her home life and work life against her diagnosis and treatment schedules. Her daughter had just begun first grade. Laura had to step down from her role to attend to her family, explaining:

“I worked so hard to get to where I was in my career, but the kids and our time together was my priority. I wanted to keep my life as normal as possible for my family and myself. To me, that keeps me going and keeps me from thinking about not feeling well.”

As she fought to keep her family moving forward, Laura was enrolled in a clinical trial for an investigational treatment that was not working for her. The treatment caused incredibly painful neuropathy in her hands; after a few treatment cycles, her liver tumor grew significantly, and she was unable to continue with the clinical trial.

After leaving the clinical trial, Laura underwent additional treatments. Her doctor had a treatment option in mind, but Laura required two lines of prior treatment first.

Laura’s journey continued, marred by grief and loss. Her aunt, who was diagnosed months before Laura, passed away from metastatic breast cancer and her cousin was diagnosed with a different form of aggressive cancer. Laura shares:

“We were all just living in the unknown.”

A Route Forward

Laura then started a drug called TRODELVY (sacituzumab govitecan-hziy) 180mg for injection, a prescription medicine used to treat adults with triple-negative breast cancer (negative for estrogen and progesterone hormone receptors and HER2) that has spread to other parts of the body (metastatic) or cannot be removed by surgery, and who have received two or more prior treatments, including at least one treatment for metastatic disease. It is not known if TRODELVY is safe and effective in people with moderate or severe liver problems or in children.

WHAT IS TRODELVY?

TRODELVY® (sacituzumab govitecan-hziy) is a prescription medicine used to treat adults with triple negative breast cancer (negative for estrogen and progesterone hormone receptors and HER2) that has spread to other parts of the body (metastatic) or cannot be removed by surgery, and who have received two or more prior treatments, including at least one treatment for metastatic disease.

It is not known if TRODELVY is safe and effective in people with moderate or severe liver problems or in children.

IMPORTANT SAFETY INFORMATION

TRODELVY can cause serious side effects, including low white blood cell count and diarrhea:

  • Low white blood cell count (neutropenia) which is common and can sometimes be severe and lead to infections that can be life-threatening or cause death. Your healthcare provider should check your blood cell counts during treatment. If your white blood cell count is too low, your healthcare provider may need to lower your dose, give you a medicine to help prevent low blood cell count with future doses of TRODELVY, or in some cases may stop TRODELVY. Your healthcare provider may need to give you antibiotic medicines if you develop fever while your white blood cell count is low. Call your healthcare provider right away if you develop any of the following signs of infection: fever, chills, cough, shortness of breath, or burning or pain when you urinate.
  • Severe diarrhea. Diarrhea is common and can be severe. Severe diarrhea can lead to loss of too much body fluid (dehydration) and kidney problems. Your healthcare provider should monitor you for diarrhea and give you medicine as needed to help control it. If you lose too much body fluid, your healthcare provider may need to give you fluids and electrolytes to replace body salts. If you develop diarrhea during your treatment with TRODELVY, your healthcare provider should check to see if it may be caused by an infection. Your healthcare provider may decrease your dose or stop TRODELVY if your diarrhea is severe and cannot be controlled with anti-diarrheal medicines.
    • Call your healthcare provider right away the first time that you get diarrhea during treatment with TRODELVY; if you have black or bloody stools; if you have symptoms of dehydration, such as lightheadedness, dizziness, or faintness; if you are unable to take fluids by mouth due to nausea or vomiting; or if you are not able to get your diarrhea under control within 24 hours.

 


See additional Important Safety Information below, and Important Facts about TRODELVY, including Important Warning for low white blood cell count and diarrhea.

Laura shares her thoughts:

“I moved forward with hope above all. As I reflect on my journey, my perspective on hope has evolved. I celebrate each scan and have hope that the news will be positive. That worry is still in the back of my mind, but hope keeps me strong.”

Laura plans her life around her treatment schedule. Laura says:

“I’m so thankful to have treatment options. I go to dinner with my friends. I spend time with my family – I cheer on my daughter and son in soccer. But I also have to make peace that I’m likely going to be on treatment until I’m no longer here.”

Sharing her story offers the perfect platform for Laura to not only share her own struggles, but to help others on their journey. While she admits that discussing grief and hope have brought back indelible memories for her, she also believes that:

“If I can shed positivity and light while sharing the things that have helped me and my family, if I can help just one person, that means the world.”

If you are interested in sharing your story, please click here.

The Impact of Grief

As can be expected, grief is a central part of Laura’s journey. Coming to terms with loss and managing anticipatory grief can place a huge burden on both those affected by cancer and their loved ones. For Laura, learning to cope with grief has helped her remain resilient. She explains:

“I’ve learned that it’s okay to cry. You can say, ‘I’m having grief today.’ You can feel those feelings. It’s okay to share with people. It’s okay to not do everything yourself. For me, I find solace from grief when I’m taking the time to reach out to others and to keep memories alive.”

A charity that builds community for families affected by terminal illness has been influential in shaping Laura’s outlook. In 2020, after learning about the charity through a fundraiser, Laura went on a three-day retreat alongside a community of other women and family members affected by metastatic breast cancer. She shares:

“Nobody understands the cancer journey unless they’ve gone through it. With the charity, I had an entire community who knew what I was dealing with. It was a fabulous experience, but I wasn’t prepared for the fact that I would lose people in my group by the time we got home. From my group of 13 people, there’s only two of us left.”

Three weeks after she returned, Laura’s mother passed away suddenly. But she kept hope as her mantra. She began running yearly fundraisers and donating to fund the retreat. And she found ways to ensure that she and her loved ones had avenues to navigate their grief, from Inheritance of Hope grief-related sessions to showing videos of her mom to Carson.

Balancing Hope and Grief in End-of-Life Planning

Although Laura is currently on treatment, she has had to prepare along the way. End-of-life planning is complex and requires consideration, compassion, and care. In addition to difficult discussions, families must also honor their loved one’s dignity and desires. End-of-life planning can be a stark reminder of life’s fragility and the need for preparation in the face of grief.

For Laura, a key aspect of end-of-life planning involved strengthening her partnership with her husband, who was fearful that he’d lose her immediately. Ensuring both she and her husband had emotional and mental health support allowed them to get on the same page to navigate elements like setting up a trust and life insurance.

Laura also wanted to ensure that her children remained part of the process, even when difficult. Since she was diagnosed shortly after Carson’s birth, he doesn’t really know any differently. Taylor, on the other hand, has started to ask questions. Says Laura:

“My daughter wants to know more about my cancer journey, especially after a student at her school was diagnosed with stage III kidney cancer. I’m doing my best to stay honest about my feelings and what might come next. I try to make sure we’re doing things that we can experience together. I also tell them that it’s okay to talk about it. Don’t hold in those emotions. If they want to talk to someone, that’s okay. I teach them about openness and hope, and I want to live in a way where I can pass that legacy to them.”

In preparation for the future, Laura has made numerous videos for Taylor and Carson so that they can always see her and hear her voice. She collects recordable books and sings Happy Birthday so that, no matter where they are, they can hear from their mom on their birthday. Most of all, she takes every opportunity she can to spend time with the people that she loves, sharing:

“When you have cancer, you need to take care of yourself and put yourself first. Be your biggest advocate. It’s okay to say no to crazy work hours or to seeing people if that puts you in a better place to spend time with the people you love. Don’t wait to do certain things. Take every experience and do it now with the people you love.

 


IMPORTANT SAFETY INFORMATION (con’t)

Do not receive TRODELVY if you have had a severe allergic reaction to TRODELVY. Ask your healthcare provider if you are not sure.

Allergic and infusion-related reactions which can be serious and life-threatening. Tell your healthcare provider or nurse right away if you get any of the following symptoms during your infusion of TRODELVY or within 24 hours after: swelling of your face, lips, tongue, or throat; hives; skin rash, itching, or flushing of your skin; fever; difficulty breathing or wheezing; lightheadedness, dizziness, feeling faint, or pass out; or chills or shaking chills (rigors).

Nausea and vomiting are common with TRODELVY and can sometimes be severe. Before each dose of TRODELVY, you will receive medicines to help prevent nausea and vomiting along with medicines to take home with instructions about how to take them. Call your healthcare provider right away if you have nausea or vomiting that is not controlled with the medicines prescribed for you. Your healthcare provider may decide to decrease your dose or stop TRODELVY if your nausea and vomiting is severe and cannot be controlled with anti-nausea medicines.

Before receiving TRODELVY, tell your healthcare provider about all of your medical conditions, including if you:

  • have been told that you carry a gene for UGT1A1*28, which can increase your risk of getting side effects with TRODELVY, especially low white blood cell counts, with or without a fever, and low red blood cell counts.
  • have liver problems.
  • are pregnant or plan to become pregnant. TRODELVY can harm your unborn baby. Your healthcare provider should check to see if you are pregnant before you start receiving TRODELVY may cause fertility problems in females, which could affect your ability to have a baby. Talk to your healthcare provider if fertility is a concern for you.
    • Females who can become pregnant should use effective birth control during treatment and for 6 months after your last dose of TRODELVY. Talk to your healthcare provider about birth control choices that may be right for you during this time. Tell your healthcare provider right away if you become pregnant during treatment with TRODELVY.
    • Males with a female partner who can become pregnant should use effective birth control during treatment and for 3 months after your last dose of TRODELVY.
  • are breastfeeding or plan to breastfeed. It is not known if TRODELVY passes into your breastmilk and can harm your baby. Do not breastfeed during treatment and for 1 month after your last dose of TRODELVY.

Tell your healthcare provider about all the medicines you take, including prescription and over-the counter medicines, vitamins, and herbal supplements. Certain medicines may affect the way TRODELVY works.

The most common side effects of TRODELVY include decreased white blood cell (leukocyte and lymphocyte) and red blood cell counts, feeling tired or weak, hair loss, constipation, increased sugar levels in the blood, decreased protein levels (albumin) in the blood, decreased appetite, changes in kidney function test, increased levels of enzyme called alkaline phosphatase in the blood (test for liver or bone problems), and decreased levels of magnesium, potassium, and sodium in the blood.

These are not all of the possible side effects of TRODELVY. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Please click to see Important Facts about TRODELVY, including Important Warning.

If you are interested in sharing your story, please click here. Your experiences can be the source of inspiration that another patient needs.

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Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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