Individual, but Shared, Experiences with Metastatic Breast Cancer

Sally Joy Wolf: Many of us, including me, were led to believe there are two potential outcomes for breast cancer: to be fully cured at the desirable end or to be dying at the other. But there is very much a third possible lane between cured and dead, and that is one in which I am not only surviving but also thriving. And that is a path I was not aware of before I was living it myself.

Just like there are many types of early stage breast cancer, there are many variables that impact the prognosis of someone with metastatic breast cancer: Where did the cancer spread? How much does the scan reveal? What is the biology of the disease? And, perhaps most importantly, what are the latest advances that might be relevant to you as a patient?

When I was first diagnosed, I began taking an oral chemo that was only first widely FDA-approved a year or so before I needed it.

So much research is being done all the time that I live with tremendous hope for a long future, something I never could have imagined when first diagnosed. Part of why I share my story is I wish I had seen someone like me in those early days, because while it’s one thing for a doctor to share a good prognosis, it can be an equally important if not bigger gift to see someone else with a similar diagnosis thriving.

Reena Wade: I wish I had known that a diagnosis of metastatic breast cancer doesn’t necessarily mean you are going to die soon. People think that stage 4 cancer equals terminal. And it can. It can also mean living with a serious chronic disease that may likely shorten your life.

What it technically means is your tumors have metastasized outside of a particular area or region. Your chances of surviving longer with metastatic breast cancer get better every day, with every new approved medicine and with every new learning.

At the beginning of my diagnosis, I was told I just had to survive long enough for the next new medicine to be developed and approved. As the years went on, I began to believe it.

Lauren Huffmaster: The most important thing to understand about metastatic breast cancer is it is not a death sentence! Today women are living with it for 10 years.

The biotech industry is working to provide us a cure one step at a time through treatments that give us extra months and years to live with cancer. These treatments give us LIFE, so we shouldn’t immediately hear “metastatic breast cancer” and think of death.

Also, don’t cut your hair! Metastatic breast cancer treatments may not require you to lose your hair. What a wonderful relief! Receiving the diagnosis is devastating, but this disease is being redefined. Establishing a positive mentality and hopeful stance toward the disease allows us to not waste the life we have through worry or fear.

Savannah Mobley: I wish I had known how much hope is possible, even with such a scary diagnosis.

I was diagnosed de novo metastatic, which means I was stage 4 at my initial diagnosis, and there was no ramp-up time to receive this information.

My only other experience with metastatic cancer was with my mom, who passed away from metastatic melanoma in 2017. Hearing the words “lesions” and “metastases,” I instantly assumed the worst. But because I had a great response to my treatments, I live a very full, happy, and mostly normal life.

Wolf: One of the most special things friends can do is remember that this is an ongoing journey. I’ve been blessed to have many PET scans which are no evidence of disease (NED). While I’m incredibly grateful for the response I’ve had to my medications, NED is not the same as cured. Yet I’m still asked about when I’ll be done with my meds or scans or no longer be immunocompromised.

People ask these questions with good intent — they want me to be done as much as I wish I could be! But those questions can also be reminders that, until science changes, those of us living with metastatic breast cancer aren’t ever “done.”

Beyond that, a meaningful thing friends did during my early stage treatment was to remember my chemo schedule and reach out every other Wednesday to wish me well. Similarly, I now deeply appreciate when folks ask me when my next scan is and then send some love my way when it arrives.

Wade: Remember your loved one is learning how to live with metastatic breast cancer too — and some days, months, or years may be harder than others. If someone looks well and acts well, they may want to forget they have cancer and that they are different for a minute.

On the other hand, they may also want you to remember that they are going through something weighty, even though they don’t complain or seem like they are going through something. People have different needs, and the best thing you can do is directly ask someone what is helpful to them at that particular moment in time.

Huffmaster: First, don’t treat us like we are dying. We are living — we are simply living with cancer.

Second, metastatic breast cancer causes us to wrestle with our changing identity constantly. Scans, blood work, and treatments require us to adjust and reimagine who we are and what we can accomplish, so don’t expect us always to know what we need. Identify a small need you are willing to do for us on the long road ahead.

Please know that [even if] we “look good” or have hair on our heads, we may be struggling under the emotional burden of the disease. Become someone we can rely on in small things, and we will let you into our lives in our big moments of need as well.

Last, be honest with us and yourself. If our disease terrifies you, tell us! Don’t withdraw without an explanation. Silence is the worst emotional burden.

Mobley: The most helpful thing is understanding that the cancer experience is not linear in any way, shape, or form. The significant effect my diagnosis and treatment experience had on my mental health wasn’t felt until after I finished chemo.

Certain milestones seem final to someone on the outside and feel like they should be final on the inside, but feelings and emotions tend to pop up at unexpected intervals.

To support someone you love with metastatic breast cancer, I think you have to meet them where they are on that day, in that hour, at that minute. None of us want to bother our friends and family, so simply reminding them and allowing them to feel however they do without worrying that they’re being a burden is significant.

Wolf: While I wouldn’t wish metastatic breast cancer on anyone, I am deeply fortunate to feel an incredible amount of love and support.

When I was diagnosed with metastatic breast 6 years ago, the day ended in my sister’s living room alongside my parents, siblings, and the three amazing little humans who call me “Auntie” — and when I look at photos of that day, I see myself blowing up countless balloons, genuinely smiling, surrounded by love. That day serves as a reminder that while this journey can feel lonely at times, I am never truly alone.

I try not to overly rely on any single person. My family divides and conquers, with a sister joining some scans and a brother beside me to get the results. My friends also remain present, and I have both a general therapist and a psychiatrist who specializes in working with cancer patients.

I cherish the friendships I’ve built within “Cancerland,” too, with folks who understand this from a shared lived-experience perspective. It really does require a figurative village and the self-awareness to learn who you need in which moment too. Who makes you laugh? Or who lets you cry?

Wade: I am so grateful for my support network, which includes my husband, my siblings, my parents, extended family members including my in-laws, my friends, my work colleagues, and more. I have also leaned heavily on social media treatment- or diagnosis-specific patient groups in order to understand what others are going through.

Initially, I was interested in learning their tried-and-true methods to solving treatment side effects. Now, I like to pay it forward and support others with my experiences and anecdotal input.

Also, many people do not have the same level of already built-in support networks, and that’s OK. Or some do have a community that they don’t want to rely on for cancer-related support.

There are other valuable ways to build a network of support that can range from meeting other patients, understanding the resources offered by your medical center and/or insurance provider, leveraging services from support organizations, and attending support groups online or in person.

Huffmaster: While pre-cancer friends and family are important for the day-to-day routines, finding others [who are] impacted by metastatic breast cancer is essential. The family around you will never fully understand your experience, so you must seek out those who make you feel known.

Finding other women with metastatic breast cancer provides a sense of relief that your daily struggles are normal, your questions are normal, you are normal, even in the midst of uncertainty.

To find other women with metastatic breast cancer, identify nonprofit organizations specifically serving us or find Instagram pages dedicated to the metastatic breast cancer community, such as:

• @everydayformbc
• @terminal.joy
• @mygurucancer
• @wildfire_bc_magazine

Do not be afraid to reach out to women with metastatic breast cancer. Do whatever you can to eliminate the isolation of the disease. Others have walked this path — find that path, and your journey will be easier.

Mobley: Support is one of the most important things. One of my providers told me early on that I was going to be OK simply because of the amount of support I had.

Pulling together your “team” and identifying exactly who and what support you need can be overwhelming. It’s hard not to try everything possible to try to fix the situation you’re in.

I wanted to talk to anyone and everyone who had a similar experience and try anything that has ever worked for someone else — whether that was certain diets, unorthodox approaches, specific supplements, or resource groups.

This wasn’t sustainable because I couldn’t manage it all while also navigating my treatments, my family, and my work responsibilities. Once I let go a bit, I found the right resources for me.

I was diagnosed and began treatment when COVID protocols were still strictly in place. This meant that most resources were either on pause or being conducted virtually. I have a group of friends who rallied with me via text during chemo, and they are still the ones I reach out to after scans and appointments now.

Finding a therapist was trickier because my cancer center didn’t have specific recommendations for providers that specialized in cancer, breast cancer, or adolescent and young adult diagnoses. Some centers have cohesive mental health programs, which I wish had been available to me.

The mental health component of navigating a cancer diagnosis, and especially a metastatic diagnosis, is intense. It was too easy for me to de-prioritize my emotional well-being when focusing on saving my physical body. Then, all of a sudden, my physical body was better, but I realized my mental health needed to take priority. And it was hard to know where to begin.

Wolf: The biggest ongoing challenge for me is the anxiety, which can often be triggered in completely unexpected moments that have nothing to do with my appointments or side effects.

Breast cancer is prevalent in our world, and that becomes much more salient after a diagnosis. Less than 2 months after my metastatic breast cancer diagnosis, an ad for my oral chemo popped onto my screen while I was watching TV. And years later, while working at my computer, I got an alert that Olivia Newton-John had died of breast cancer.

That ad and that news alert would not rattle most folks, but to me they were unexpected reminders — in moments I was otherwise completely fine — that I am living with an incurable cancer. And in moments of others’ deaths, the spiraling rabbit hole of fear and anxiety can escalate quickly. That’s especially true when it’s not a celebrity but rather a friend or even acquaintance from “Cancerland.”

I find the best way to calm myself is to try to stop the spiral before it begins — to go for a walk, put on some music, journal. Focus on the present moment and remember that while it is sad, tragic, and unfair, it is also not my story, and nothing about my own situation has changed in that moment.

Staying present isn’t easy, but I continue to practice being able to do so in especially challenging moments.

Wade: The way I view my illness has been, at times, extremely helpful or extremely challenging.

When I was first diagnosed, I was scared beyond belief. I changed how I ate, what I did, what I drank, how I exercised, and so much more. Every day I was grateful for what I considered the gift of cancer that woke me up to real gratitude and a willpower that I hadn’t experienced before.

I was thankful for every second, and I thought about that in real time. I was doing the work for my kids so I could get better and be alive for them. I had to make it through to their high school years.

After chemo, I had no evidence of active disease but was still on maintenance treatment. I then became complacent. I was put on new medicine that made movement and exercise harder. My willpower, as I felt like death wasn’t knocking at my door, became more normalized and not as superhero-like.

I cycle between guilt and surges of effort to get back to a stronger version of me. I deal with this challenge by trying to be gentle with myself and by keeping up the effort.

Huffmaster: In prior generations, women did not have the time to vocalize their experience with metastatic breast cancer, for too much of their time was spent dying from the cancer. We are the first generation of women living with it. So the tools for carrying the burdens of a terminal disease do not exist. There is no model for us to follow.

Therefore, I deeply reflect on my own cancer experience and that of the many women impacted by metastatic breast cancer whom I call friends. I have found purpose in defining the emotional burdens of cancer, the emotional side effects we all carry.

Future generations will live with this disease; therefore, any experiential wisdom we can pass on will minimize the fear and isolation they experience.

Mobley: The most unexpected challenge has been accepting that I will never get back to how my life was before I was diagnosed.

I had milestones in mind for when everything would be “normal” again. I thought I would feel significantly better after chemo, when my hair grew back, when I hit the 1-year mark. None of those moments changed things the way I thought they would.

I have a “new normal” now that is even better in a lot of ways, but I had to grieve my life before my diagnosis. And that isn’t easy.

Wolf: Physically, it is no exaggeration to say I danced my way through cancer; I’ve never missed a weekly pole and sensual movement class. I also am somewhat obsessive about my 10,000 steps (at least!) per day.

Mentally and emotionally, I studied positive psychology during early stage chemo, and it actually inspired me to pivot my entire career on the heels of my metastatic breast cancer diagnosis. I now am a solopreneur who leverages my two-decade corporate career to bring inspirational keynotes and well-being workshops into companies and conferences to help employees flourish at work and in life.

Shifting into work that feels deeply purposeful has been an incredible way of my mental well-being, along with using my voice for advocacy on behalf of others who are immunocompromised for any reasons.

Finally, my emotional well-being is always lifted from time spent with loved ones, especially my nephew and nieces. Children keep us present in an incredible way, with a laughter and joy that lights up the space around them. I carry them with me to my scans, too, envisioning them growing older as I lay in the machine — and envisioning myself being there alongside them as well.

Wade: I meditate, and I think about how to help my mind and body heal. One thing that helps me is living in the moment and being mindful. It helps me to not ruminate about the future or regret the past. My mental well-being is where I focus my efforts because that feeds into my physical well-being. If my head is right, I will be able to take care of my body the best I can.

Huffmaster: Being a young parent when I was diagnosed required me to think beyond myself. How would my perspective shape my very young children? My choices and decisions would shape how my children face the challenges of their lives.

So, the first decision I had to make after my diagnosis was to not focus on my own needs but allow my situation to shape others in the way I wanted to impact the world. I did not know how long I would live, so I was motivated to live the most concentrated, undistracted, focused version of myself as possible. I pushed out fear and began taking risks I had never been able to take before.

I was motivated not for myself but for my children and later for the families I serve through my nonprofit. Placing my focus on the greater needs of the cancer community minimized the discomfort of my own needs. Today, I find purpose and strength in serving others by minimizing the emotional burdens of cancer.

Mobley: It took me a year to get into a space where I felt safe enough to move forward.

First, I had a spinal fusion to fix the breaks in my spine that caused me a lot of pain. After that recovery, I started to feel like myself again. Now, I take my overall well-being seriously while ensuring I have a lot of fun.

I meditate and journal daily, exercise regularly, eat foods that make me feel good, prioritize rest when I need to (as much as I can with two tiny kids), and spend as much time with my friends and family as possible.

Wolf: While an incurable disease may be a life sentence, it does not necessarily need to be a death sentence. I am truly living my best life with metastatic breast cancer.

That doesn’t mean I would have chosen this diagnosis or that I wouldn’t be thrilled if I could be cured tomorrow. It simply means that in THIS moment, along this life path, I am truly thriving and trusting that I am on a path of deep meaning and purpose that feels very much meant to be mine. And my biggest hope is that others who receive the diagnosis can find their own “why” within it.

Science shows that the more we are able to find subjective, authentic meaning in our own life story, the more resilient we are and the more likely we are to grow through challenges. While metastatic breast cancer often presents ongoing obstacles, it can also gift us ongoing opportunities, as well as perspectives about life most don’t have until they are decades older.

The more we can appreciate those gifts, the better able we are to navigate the rest. And that is a choice we get to make every single day.

Wade: Take one day at a time and know that you are not alone. We all have a defined journey, and no one knows what that is. Work to define it yourself. Be knowledgeable and do not be afraid of stepping out of your comfort zone. Some things that worked for me were reiki and Mindfulness-Based Stress Reduction training.

And lastly, do not forget you are stronger than you know.

Huffmaster: Pursue an irrationally optimistic perspective. Bet on best-case scenarios. Believe in good results. We have been taught to fear cancer — we even equate cancer to death. But we are at a breakthrough moment in the history of cancer. Believe that breakthrough is coming just for you!

What this does is put life back into your life. You don’t spend the time you have holding back in fear; instead, you push forward, embracing the good in life. Why do we hold mental space imagining our medications will fail when they could just as likely succeed? How differently we live when we believe that good things are coming!

This practice of irrational optimism reshapes how we see ourselves and the world and ensures that our bodies don’t carry unnecessary stress. We may never be free of cancer, but we can be free of stress and anxiety around cancer. Placing ourselves in a perspective of positive expectations helps our body heal and places the adventure back into life.

Mobley: Know that you are not alone. Receiving this diagnosis is very overwhelming and scary. The people around you will be scared and anxious too. Talk to them about how you feel without worrying about being a burden or needing to be strong. Those conversations can lead you to something or someone that can inspire or guide your journey.