In Her Words: Kristen Carbone
May 15, 2019
Kristen Carbone’s relationship with breast cancer runs deep – her mother passed away from metastatic disease in 2005, and then at the age of 30, during a routine screening, doctors discovered a benign mass in her own breast. As a mother of two young children, she decided to lower her risk as much as possible by having a preventative bilateral mastectomy. What she didn’t realize was that even after her surgery, breast health would remain an ongoing part of her life, and along her journey, she built Brilliantly, a business focused on women’s health and well-being after breast cancer or preventative mastectomy. Now, devoting herself to changing the way women think about their physical and emotional needs – something she feels she was lacking throughout her experience – she shares her personal story in this week’s In Her Words.
Name: Kristen Carbone
Location: Providence, RI
Current Health Status: Well, thankfully.
Tell us about yourself.
I spend most of my time puttering at home, traveling, FaceTiming with the people I miss most, and trying to understand the tiny space I occupy in the cosmos without becoming too distracted by the laundry.
My background in the arts includes ten years working in the curatorial departments of museums throughout New York and New England, including the Albright-Knox Art Gallery, the Tang Museum at Skidmore College, and the Museum at the Rhode Island School of Design. In 2011, I founded an artists' advocacy business, and for two years served as the executive director of a public art and education collective specializing in corporate education. Prior to founding Brilliantly, I acted as the project manager for two small consulting companies.
My passion for the art world spills into every aspect of my life, from my cheeky and contemplative musings on social media to my garden and living space.
When were you diagnosed with breast cancer?
While I didn’t personally have a cancer diagnosis, my mother died from metastatic breast cancer in 2005. After the birth of my first child, I began years of preventative screenings that were emotionally and financially-taxing. Then in 2012, I had an ultrasound that revealed a lump, but luckily through a biopsy, results came back as benign. That experience was a wakeup call for me, so I decided to lower my risk as much as possible and had a preventative bilateral mastectomy at age 31 in the spring of 2013.
What were your first thoughts when you were diagnosed?
That moment during my regular ultrasound screening when the tech repeatedly moved over a particular area – that memory really sticks with me. I had many ultrasounds before, but I know this one was different. While laying on that table knowing that she had found something abnormal, I knew I was done with waiting to find cancer early. I was going to remove my breasts before that could happen to me.
How did your friends and family take the news? Back in 2013, Pre-Angelina Jolie’s Time Magazine’s cover story having a preventative mastectomy was not a well-known or popularly discussed preventative option. And while my close friends and family were supportive, it was a difficult thing to explain. In an effort to keep my loved ones informed, I started a blog. It was easier for me to post updates on timing, surgery, recovery, etc. in writing rather than having individual conversations. I found the process of owning my story empowering. Not only did it allow me to frame the experience I was having in a way that helped me heal emotionally, but it also became a conduit for reconnecting and building new friendships.
Describe your treatment and how you arrived at that course of action.
During my mastectomy, my plastic surgeon placed tissue expanders where my breasts used to be. After about two months of fills, I had my exchange surgery. Over the next few months, my implants drifted towards my armpits, and my right side was significantly higher than the left. I had a revision surgery in October of that same year, and after an injury in 2016, had a second revision with fat grafting.
In 2013, my children were only two and four years old. I was committed to having as little surgery as possible so that I could heal and get back to my life. I am glad, however, that I did fat grafting with my last revision. My implants look more natural, which has helped me feel less deformed.
Were you able to work through treatment?
I took three weeks off after my mastectomy but returned to work right after that.
Where and how have you found the best care?
I had been seeing my preventative oncologist, Dr. Julia Smith, for four years before I decided to have my PBM. She was recommended to me by a former professor and friend who also had a strong family history of breast cancer, but no BRCA mutation. From the first time I met Dr. Smith, I knew she was the right fit for me. When I decided to pursue a surgical intervention, she recommended my team. I fully trusted that she was helping me make the right choice. Having confidence that your entire team is on your side, I think, genuinely improves the process and outcome.
As I meet young women faced with similar hereditary risk, I encourage them to interview their doctors and take the time to build a team that feels right.
Have you received any additional support or alternative therapies?
When I had surgery in 2013, I didn’t do any physical therapy because my insurance wouldn’t cover it. However, after my 2016 revision, I wanted to understand how to safely rebuild my strength and went to PT for a number of months.
I also saw a therapist ahead of my PBM, which was an important part of my preparation for surgery. I only went a few times, but it allowed me to have a safe space where I could talk about my fears without the worry of being judged. Since I made this choice at a time when my children were so young, and I was separated from my husband, finding another young woman to talk to about the process was difficult. Therapy helped me feel confident in my choice and primed for recovery.
What or who have been your biggest supports? Who makes up your cancer tribe?
Even though I didn’t know any other women who were going through a similar experience at the time, I had a wonderful support network. Friends and family came to help take care of me for many months after surgery. Though it was a physically and emotionally difficult time, my children remember it as a time filled with love and company. To this day, I am still overwhelmed with gratitude when I reflect on the many people who showed up for me in every way imaginable.
Now, years later, I have found a group of women in the breast cancer community with whom I’ve become very close with. There is an immediate and knowing kinship with other women who understand the experience, the lingering fear, the heartbreak of losing our mothers.
What has been one of the most challenging aspects of the experience for you?
When I made the decision to have surgery, I assumed that the experience would be an isolated intervention. I have come to realize that my breast health is still an ongoing part of my life. I currently have a lump in my right underarm, and the imaging for that revealed I have axillary breast tissue under both my arms that will require annual screening. I had my genetic testing in 2008, and because of advancements in research, I need a new screening panel. I continue to see Dr. Smith yearly. The quest for health and wellness is ongoing, which I didn’t expect when I made the choice to remove my breasts.
What is one thing you wish you knew before you were diagnosed?
Since I didn’t face a cancer diagnosis, I am answering this with what I wish I knew as it relates to my mother. She, Lisa, was so brave during her diagnosis and treatment. My only memory of her complaining at all was when the mets on her leg bones were causing her so much pain that she couldn’t walk across her bedroom. Otherwise, she was stoic and silent in her suffering.
In the last year of my mom’s life, I moved to be closer to her, and I took time off of work to help my dad care for her as she died. I helped her bathe, I cleaned the multiple drains coming out of her abdomen, I made meals, cleaned the house, ran errands. I did anything that I could think of. I was obsessed with the doing. I needed to feel useful.
In all that doing, I missed just being. The few moments where we were all just talking together, are the memories I hold most dear. In the middle of the night, at the very end of her life, she called out to me from the next room. My dad, her primary caregiver, was so exhausted that he hadn’t heard her right next to him. She just needed a sip of water, but we sat there together at 2 AM and chatted. It was our last real conversation. She told me she thought that I’d be a good mother. She asked me to promise that I would encourage my dad to go to therapy. She told me how much she loved me, which I didn’t truly understand until I had my own children.
It took me years to realize that the most important thing is to just spend time with the people you love. I wish I had done less and simply been present with my mom, and in other areas of life. With that knowledge, it feels easy to make time for people because many things can wait, or not be done at all.
Is there a particular mantra or inspiration that helps you?
I recently saw a post on Instagram that said “Maybe the journey isn’t so much about becoming anything. Maybe it’s about un-becoming everything that isn’t really you so you can become who you were meant to be in the first place.” This resonated with me, because as I encounter things that feel like struggles, I try to remind myself that I am growing into being myself. The struggle will likely be temporary, but if I can find a way to hold on to what feels right and let go of what hurts, I will find growth and joy.
If you could offer a woman, who has been newly diagnosed, some words of wisdom for her journey, what would you tell her?
You are not alone.
What are you most proud of in your cancer journey?
I think I’m doing what many women have done before me and will continue to do long after I’m gone. I am trying to help other women feel heard, understood, and supported during their path to wellness.
How has breast cancer affected your outlook on life? On illness?
Being a part of this community and loving many women who have been affected or are battling illness is an ongoing reminder that the bad and good are always happening simultaneously.
How have you changed?
There were years where I felt trapped by grief. Taking my health, into my own hands was the first step I took towards a happier future. Although I know I can’t fully escape my fear of cancer – or the worry as to whether I’ve passed a hereditary mutation on to my daughter – and I may never feel truly at home in my altered body, I believe that I am a better person than I was before all of this. I have newfound compassion, empathy and patience for myself, and those around me. I am dedicated to feeling alive in whatever way that takes shape – travel, meeting new people, spending quality time with loved ones. If I do end up having a short life, I know that I did the most important things to the best of my ability.