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My daughter Ellie turned one just a few days before I was diagnosed with metastatic breast cancer. We’ve come a long way since then; now, at age five, she’s, like, a whole teenage human! I live with her and my husband, Eric, in Woodland Hills, California. I’ve been in the LA area for about 16 years, but I’m originally from a town called Andover outside of Boston. I played field hockey growing up and went on to join the team at Babson College. Prior to my diagnosis I worked in financial services, and for four years I also owned a cardio-boxing gym. Luckily, I sold my business before the COVID-19 pandemic—and my breast cancer.
It was after giving birth to Ellie in July 2020 that I began noticing changes in my body. I figured some of it was just the standard experience of feeling a bit weird after delivering. However, when I started playing tennis and exercising again, I had numbness and pain in my feet. At first I assumed it was related to a sports injury, since I’d had so many over the years. But no amount of physical therapy or other remedies I tried brought any relief. Then I thought it might be plantar fasciitis. But as more time passed, I began to just feel off, so I started consulting specialists and getting every possible workup.
Because my symptoms were nowhere near my chest, breast cancer was the last thing on my mind. I’d even recently had a breast exam with my primary care doctor; they didn’t feel anything then, and neither did I. But just a couple of months later, almost a year after I had given birth, my husband jokingly copped a feel when I was getting dressed one day, and he felt a lump. At that point I wasn’t scared because it felt a lot like a clogged milk duct, although I’d stopped breastfeeding months earlier. Friends of mine had developed cysts and other benign things over the years, so I assumed it was something like that. Still, I took it seriously, especially because I’d been feeling so off.
When I went in for a breast exam, they found a second lump in my armpit. Things moved quickly from there. I had my first mammogram, plus an ultrasound and a few biopsies. That’s when I found out that both lumps were malignant. And after a PET scan, I learned for the first time exactly what metastatic breast cancer, or MBC, was. Before that I never understood that it was possible to have breast cancer in my liver or my lower spine. At age 34 I had HER2-positive stage 4 breast cancer. It was de novo, meaning it had already spread to other parts of my body by the time it was discovered.
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My initial thought was, “I’m gonna fight and be as aggressive as possible—remove my breast, and do whatever else you have to do.” I started with this anxious feeling of, “Let’s come up with a game plan. Let’s execute it. Let’s move.” I wanted to get started as quickly as possible. So it was really confusing when I started learning more about the best and newest treatment options for stage 4 breast cancer: It’s not getting a mastectomy, nor necessarily being as aggressive as possible, because it’s not curable.
I was a few rounds into chemo when I realized that I wasn’t in the best hands. Thankfully, I have people in my network and family who are in the medical field and started researching my options. My husband’s uncle, a breast cancer surgeon, called me and was like, “I’m reading all this stuff, and I think we need to revisit your treatment plan.” My oncologist at the time wasn’t following the current standard of care. I was on a drug that had been removed from the recommendations for treating metastatic disease because it’s more toxic than necessary for an incurable disease. If I had a different mutation or earlier-stage breast cancer, it would have made sense. But this oncologist saw my anxiety and was like, “Okay, if you want to be super aggressive, that’s what we’ll do,” rather than educating me on the best course of action.
I immediately had my husband’s uncle help me find another doctor, who switched me off that chemo, so I stopped feeling so sick and throwing up. Eventually, I ended up at UCLA with Dr. Sara Hurvitz, who is on the cutting edge of treating HER2-positive breast cancer. When she left to go to another hospital, I started seeing my current oncologist, Dr. Marla Lipsyc-Sharf. She relocated from Dana-Farber Cancer Institute in Boston, near where I’m from, and has been a great fit for me. I’m so grateful that I no longer have to question what we’re doing. I can trust that they’re taking appropriate action and are aware of the most up-to-date approach. Not knowing that before was the scariest part. There are certain times when you feel like, “Okay, I need to just suck it up because there are tumors in my brain,” right? But you want to feel confident in who’s advising you and what treatments you’re on because it can be so miserable at times; you want to know you’re doing the right thing. When I determined in that very early stage that I wasn’t on the best treatment plan for me, I was rattled. It was like, “Wow, I need to advocate for myself a lot more than I realized.”
My biggest piece of advice, and what I think is lifesaving advice, is to not be afraid to get a second opinion—even if you’re already seeing “the best.” My current oncologist, whom I just adore, would encourage me to do exactly that were I interested. Any good doctor won’t feel threatened or offended by your desire to seek other perspectives. If they are, I don’t think they’re the right provider.
Also, it’s important to know which services and treatments are available through your health insurance. I was very limited in my first year post-diagnosis because I had an HMO plan; I thought I couldn’t see anyone out of network. We’re conditioned to believe that if we seek care our insurance doesn’t cover, it’s going to bankrupt us. What I didn’t understand was that, yes, chemo or scans could cost tens of thousands of dollars, but the cost of a second opinion was only in the hundreds. I paid about $500 to get a second opinion from Dr. Hurvitz. After that I was able to keep messaging her, and she helped direct my care, making sure there was another set of eyes on it. Eventually, I decided to change insurance so I could see her at UCLA, but she’d told me that if I couldn’t afford to do that, she could still be part of my care in another system. I never knew that providers were willing to do all that with just a $500 initial visit.
In general we have more health care options than most people realize. And I get it because I felt scared and overwhelmed after my diagnosis. The last thing I wanted to do was research more doctors. However, there is nothing more important than your care team, so make sure you feel good about it. While none of them will have all the answers—if they did, we would have a cure—you need to know your providers are looking out for your best interests and staying on top of the latest treatment options. That will help you feel less stressed through all the decisions and research that follow.
Stage IV breast cancer isn’t curable—but it is treatable.
Another thing I’ve learned is that so many people reach out to help, but sometimes that can create an unintended burden. People who care about you tend to come out of the woodwork, even if you haven’t talked to them in years. It’s so nice, but for me it also felt like a bit of a lose-lose situation because I didn’t know how to ask for what I really needed. It became overwhelming. I used to joke that I had a note saved on my phone that I would copy, paste, and text: “Just you reaching out is enough. I really don’t need anything.” In response folks sent blankets—I had, like, 30 of them. I realized that people really want to do something; they just don’t know the best way to help. I was in my fifth round of chemo when I created WeGotThis.org, which allows cancer patients and caregivers to make gift registries. As the patient I felt like it wasn’t my job to make everyone else feel better and awkwardly tell them what I needed; yet I appreciated the part of humanity that drove them to take action. That’s why I wanted to create something that made it simple for both sides.
I had a goal of making it easier for people with MBC to find resources as well. When I was first diagnosed, with my husband hyperventilating into a paper bag and me sitting in shock, we were handed this folder of resources, which I never processed, let alone used. But since then I’ve learned that there is actually a lot of fantastic support out there, especially for the adolescent and young adult community, which I didn’t initially realize included me—some organizations consider anyone up to age 45 part of this group. I’ve added a resource directory to WeGotThis.org that’s less overwhelming to navigate than a traditional paper folder. With the directory you can filter by categories such as financial support, retreats, or other needs. It includes hundreds of nonprofits, and I’m always adding more. WeGotThis.org now also offers a recommendation shop with curated and vetted products for cancer patients and caregivers who aren’t yet sure what they might need or should ask for. You can filter by categories like age, treatment, symptom, the type of surgery you’re having, and what kind of cancer you have. The goal is to be that central place where people can find exactly what they need.
Something I’ve noticed from being immersed in the cancer community is this kind of imposter syndrome that people sometimes experience. It’s especially common for those with earlier-stage disease; after completing treatment, it’s like, “Okay, you’re in remission. You’re cured. You’re done.” Survivors are wondering, “What do I do now?” Or a lot of times folks say to me, “Well, I don’t have it as bad as you.” But we all have cancer, even though we’re all going through different scenarios, different life situations, different treatments, different side effects. We are all in this together.
Nevertheless, many people with MBC sometimes feel like the black sheeps of the breast cancer community because there’s a more uplifting story to tell: the pink ribbons and “saving the tatas,” people overcoming breast cancer and having that finish-line story. We seem like the worst-case scenario. I want to redefine that. My story’s not sad because I’m living with cancer. I think it’s amazing that I’m living with cancer. When I was diagnosed HER2-positive metastatic breast cancer had an average life expectancy of 12 to 18 months. Only 20 percent of people made it past five years. Those numbers have gotten way better. Events like #LightUpMBC and organizations such as Metavivor are paving the way for a greater focus on funding specifically for stage 4, which is critical because all breast cancer deaths happen in stage 4. Yet, MBC is often left behind when it comes to research. I genuinely believe that the discrepancy stems from people being afraid to talk about it. Initiatives like #LightUpMBC help break the ice, and the more we can normalize talking about this diagnosis, the more people won’t just paint pink over it, do a 5K, and move on.
One of the most difficult realities for those with cancer to contend with, particularly those in the metastatic community, is the more we expand our network and become close with other MBC thrivers, the more people we lose. But the thing is, I would always choose having had those people in my life—living and thriving and experiencing grief together—than not. I think of living with cancer as a team effort, the whole “better together” idea. If I tried to do this alone, I would be depressed, counting down the days until my next scan,my next result, and my next round of chemo. Instead, I think, “What am I going to educate people on the next time I go for my CT scan?” Or “How can I help people understand that metastatic cancer is terminal, but there’s also so much hope and so much they can do to help us thrive?” The chemo keeps me alive, but a mission-driven attitude keeps me living.
Another priority for me is spreading the word about the importance of getting to know your body and understanding what feels right and what feels wrong—and that’s not only to help detect breast cancer. You should check your body regularly. With my dense breasts, one day I could feel my tumor, the next I couldn’t. It’s vital to be proactive about your health and not put things off because you’re afraid of finding something. Yes, it sucks that I’ll be in treatment forever, but I’m alive because we found a lump, and relatively speaking it’s pretty amazing how well I’m living with stage 4 cancer. Like, I’ve had tumors in my brain, and I’m running a nonprofit and just wrote a book. If I hadn’t been proactive, I’d be dead.
That said, cancer should not be a prerequisite to living life to the fullest. There’s so much I think we need to prioritize—and not only after we receive a life-changing diagnosis or lose a family member. Let’s really put those things first. I know there are limitations and you have to be realistic. But a lot of the things I’m doing now have always been part of me. I just became a more amplified version of myself once this terrible diagnosis slapped me in the face.
I also live with the harsh reality that someday my daughter is going to lose me. Everyone dies, but she’s most likely going to lose me to breast cancer, statistically speaking. I’m 38 now. Let’s say I live to 68, so 30 more years (my original oncologist basically told me I’d be lucky to hit 40). I’d still be devastated if my mom died at 68. I know I largely sound so positive, but this morning I was dropping Ellie off at school, and she wouldn’t let me go. She wasn’t crying, just whispering, “Mommy, I’m gonna miss you too much,” and “I want to stay with you.” Sometimes I don’t know—is she feeling this because I have cancer, or is she just feeling this because she’s five and I’m her mommy? Those emotions are so hard to balance. We just do the best that we can, and honestly, that’s true of being a mom in general. Fortunately, there are a lot of resources for parenting through cancer. It’s a learning process and requires recalibration as kids get older. The way I’m explaining things now is totally different from the way I did when my daughter was one. Back then she would just pet my bald head and laugh.
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Conversations with other people in my life have evolved too. For so long one of my close friends was scared to ask whether my prognosis has a timeline—in other words, when I could die. What’s so hard to explain is that my next few lines of treatment could fail and I could die within a few months or in a year. Hopefully, that’s not the case and more treatment options become available, allowing people to live with MBC for decades.
My family and friends have finally realized I’m not going to slow down. Initially, people were like, “Please just worry about yourself.” But I love that the things that fuel me also hopefully benefit others affected by MBC. Of course, sometimes I do ease up because I’m forced to. When one treatment was making me really sick, there were months I couldn’t get out of bed. That’s why when I’m able to do what I’m passionate about—get out and give keynotes, work on my book, run my nonprofit, and attend retreats—it brings the best energy into my life. These things make me feel like I’m truly living. They allow me to shift my perspective and feel supported in a way I wouldn’t have understood had I slowed down and stayed hidden in my own despair.
More on metastatic breast cancer and treatment options:
- 7 Questions to Ask Your Doctor If You’re Diagnosed With Metastatic Breast Cancer
- My Life in Pictures: Before, During, and After a Metastatic Breast Cancer Diagnosis
- How to Talk to Your Kids About Your Metastatic Breast Cancer Diagnosis
- 12 Ways to Practice Self-Care After a Metastatic Breast Cancer Diagnosis
