What It’s Like to Navigate Breast Cancer as a Caregiver

They say when it rains, it pours. For Jessica Fioretti, it poured, then it typhooned. Less than two years after she lost her father to lung cancer, and with two little kids in tow, Jessica was diagnosed with early-stage, hormone-positive, HER2-negative invasive ductal carcinoma (IDC).

IDC is the most common type of breast cancer and accounts for approximately 80 percent of all breast cancer cases in females.  When caught early, it is highly likely to respond well to treatment, including surgery, chemotherapy, and radiation.

But less than four years after Fioretti underwent all three treatments, her cancer returned. As Fioretti worried about cognitive changes she’d begun to notice in her mother, she felt a lump in her armpit. An ultrasound and biopsy later, doctors found that her cancer had returned. A PET scan then showed metastasis to her liver, part of her chest, and some surrounding lymph nodes. Shortly after that, she learned it had also metastasized to her entire spine, her skull, her clavicle, ribcage, pelvis, and sacrum.

Fioretti, already part of the ‘sandwich generation’—middle-aged adults simultaneously caring for aging parents and growing children—suddenly found herself not just a caregiver, but a person who also needed care.

Two Diagnoses

As Fioretti managed her own diagnosis and cared for her two daughters, she also took on the role of caregiver for her mother. “When I was diagnosed with [metastatic breast cancer], that is kind of around the time when we were noticing changes around my mom,” Fioretti tells SheKnows. “She was getting progressively worse…. She was needing more assistance, and not realizing her own limitations. She wanted me to be there at the drop of a hat, and that was hard for me to do.”  

Not only because Fioretti had her own appointments to attend and medications to manage, but because she also had two children depending on her. “I remember being in the parking lot of my daughter’s dance studio waiting for her, and I got a call from my mom that she’d fallen.” Because Fioretti’s mom lives 30 minutes away, she couldn’t pick up her daughter and help her mom at the same time, so she had to call the local police department.

About a year after Fioretti’s diagnosis, her mom’s condition got even worse, and the doctor determined that she was “exhibiting a specific type of dementia and Alzheimer’s type features.”

For Fioretti, there was some relief in finally getting a name and explanation for what was happening.

Time For Caregiving And Time For Self-Care

Between her mother’s diagnosis and her own appointments, medications, and hospital visits, Fioretti realized she needed support. “My mental health really took a toll in the beginning,” Fioretti admits.

Fortunately, thanks to the long-term care insurance policy her parents had purchased years prior, Fioretti was able to hire aides and companions to help her mom throughout the day. “Initially, I felt such guilt,” she notes. “As much as I want to do things for her and be there for her, I have to remember I have to take care of myself and remind her that I do have this diagnosis and it’s something that’s not just physically demanding but mentally demanding.”

For Fioretti, part of navigating her own diagnosis while caregiving for her mom meant letting go of the reins. “And part of being okay with that is how I learned to have self-care for myself.” She realized if she can allow people to help with her mom, maybe it was okay to allow people to help her, especially when her body is telling her to rest.

“I’ve been more okay with sitting with [the idea that] ‘well today, I can’t do it and everyone’s going to have to figure it out’.” She notes that, “[F]or me, now going through my own diagnosis and really realizing you have to take a step back, you have to focus on yourself. I have to give myself time to focus on my own healing if I’m going to survive living through stage four cancer.”

Advocating For Herself; Advocating for Her Mom and Family

Focusing on her own healing means advocacy—asking questions when she has them, demanding answers rather than allowing herself to be rushed out the door, and ensuring her concerns are heard. “I want to be an active participant in the treatment and decision-making,” Fioretti says.

That self-advocacy has translated into Fioretti’s caregiving as well, for both her mother and her children. “Learning to advocate for myself did help me in turn advocate for my mom,” she says. “It gave me empowerment to advocate for my mom, and for my kids as well.”

Fioretti remembered visiting a doctor when her mom needed hip surgery. The doctor was well-regarded, but Fioretti felt rushed and dismissed throughout the visit. “Normally, I wouldn’t have spoken up,” Fioretti says, “but I took more of a stance.”

She spoke up and made sure the doctor answered her questions, and made sure her mom received the time and attention she deserved. Ultimately, it’s not about the doctor’s time or ego, Fioretti realized. “This is your health and your loved one’s health.”

Focusing On Healing — And Community

When it rains, and it pours, and it typhoons, the hardest thing to focus on is often yourself—especially when, like Fioretti, you’re the mom, and the daughter, and the one who’s always “created the calm to the chaos.”

“But we don’t have to take on that responsibility all the time,” she says. She urges others like her, especially those in the “sandwich” generation, to prioritize their health and lean on support.

“Finding community has been some of the best healing and therapeutic intervention that I’ve had,” Fioretti notes. “Even when you have family and close friends, talking to people, even strangers who are going through what you’re going through, is just so comforting. It helps me be a better parent, be a better daughter, be better for myself.”

And ultimately, to be a caregiver for someone else while navigating caregiving for yourself, you need to prioritize yourself. Because, “if you’re going to be able to help others,” Fioretti says, “you have to work on being the best version of you that you can be.”

Content was independently created by SHE Media with funding from Novartis Pharmaceuticals.

For US audiences only.