I was diagnosed with breast cancer at age 33—after a doctor told me I was too young to get a mammogram.
During a breast exam, my doctor couldn’t feel the lump that I felt, but I demanded a mammogram regardless, even though I was told I was wasting time and resources. When that mammogram and the biopsy that followed showed abnormal results, indicating breast cancer, I was told by my ob-gyn, “This is the best type of cancer to have.”
I was then referred to a surgeon and decided to move forward with a bilateral mastectomy. The CT scan I got as part of that process revealed something suspicious on my sternum, so many more tests, biopsies, and scans followed. “The best type of cancer to have,” my oncologist would eventually tell me, was actually HER2-positive metastatic breast cancer. The cancer had already spread—I had an “innumerable” amount of metastases in my skeleton, mostly in my spine, and some in my ovaries—and it was incurable. Surgery was no longer an option.
My head was spinning. I had relatives who had breast cancer, but I tested negative for the BRCA1 and BRCA2 genes. I had pain in my hip, neck, and back, but I thought it was due to long working hours and raising a toddler. I never thought cancer was the cause.
Going from a cancer that was curable to a cancer that was terminal didn’t just turn my world upside down—it took my world and threw it into a black hole. My son, Lincoln, will never remember who I was before cancer. I’ve cried over this more than I’d like to admit. I try not to turn down opportunities, regardless of how I’m feeling, because I want to make many memories for us, but there are times when the cancer wins.
In the months that followed my diagnosis, I learned I was eligible for a clinical trial that I could participate in tandem with my existing MBC treatment plan. I knew it would be intense, but I also knew that if people like me opted out, then there would be no progress toward finding a cure.
I started my treatment plan in January 2020, just before my 34th birthday. The clinical trial included two targeted therapies and a harsh chemo regimen. Chemo took my hair, and my ability to fight off infections; it changed my complexion, made me gain weight, and pulled my nails away. I had to stop pursuing a career. My bones and joints hurt more than I could’ve imagined and my energy was low. I thought I knew what fatigue was after I had my son, but chemo made me realize I had no idea.
Not long after that, COVID hit. Suddenly, I living with a disease with an average life expectancy of three years and I couldn’t leave the house; it was a special kind of torture. When I could leave the house for my weekly treatment, I could no longer bring anyone with me. Where my brother used to join me, I now had to go alone, so treatment became a lonely affair.
And then I found out that my treatment plan had failed; the cancer had progressed in my hip and spine and moved into my brain, which had a few sizable metastases and a lot of really small ones. Knowing that the cancer had spread to my brain brought my anxiety level even higher than it was with my initial diagnosis.
I had to undergo a new chemotherapy and whole brain radiation (WBR). The WBR process itself is uncomfortable: It involves wearing an incredibly tight mask that’s attached to the table to ensure there’s no movement. I would leave the treatment with my face indented with a cross-hatch pattern from the pressure. The treatment significantly affected my short-term memory; I still ask the same questions and often forget the the answers.
Fast-forward to today, and I have two spots left in my brain. The chemo I’m on now is relatively new; it’s exhausting and comes with unpredictable nausea, fatigue, and pain. New treatments continue to have aggressive side effects, which are a stark reminder of how important research is.
MBC patients progress from one treatment to the next, stopping when our bodies are too sick to continue or when one treatment stops working. We keep moving on to the next treatment until there are no options left. I’ve spent two years on my current treatment, which is good because the goal is for every treatment to last as long as possible. But it also comes with risks to my organs, which constantly need to be monitored. (After a recent echocardiogram, my heart is closely being watched.)
A lot of MBC patients say that friends and family pulled away from them after their diagnosis. While I’ve lost some friends, MBC has brought my family closer together. My husband has been my biggest advocate, and he and my brother and sister-in-law are my best friends. My son and my smallest nephew bring me pride and joy every day, and my parents, in-laws, and my extended family continue to support and help whenever they can.
I’m truly grateful that I’m still here with them by my side. My family and my dark humor are how I get through my day to day. Some days are just too hard, but most days I’m recovering or spending time on hobbies. I regularly add items to my bucket list so I can keep experiencing new things. I want to spend more time making memoris than I do recovering, but it’s always a give and take.
I’ll turn 38 in January. I’ve now been living with MBC for four years, and it’s been in my brain for two of those years.
I don’t know what’s next for me, but I know I won’t go silently. It’s important to me that people understand that breast cancer isn’t “the best type of cancer to have,” at any stage. Many people don’t know that only two to five percent of the funds raised for breast cancer go to metastatic breast cancer research; they also don’t know that there is no cure for MBC. So I’ll continue to advocate, because no one is going to be a better advocate for me than I am. (I’m an Illinois state captain and a state ambassador for #LightUpMBC 2023; more on that here.)
And I’ll continue to try to be the best person I can be—someone my son will look up to. (After any heartbreak, I hope he’ll smile when he thinks of me.) I plan to live my life while I still can—and continue to make memories when opportunities present themselves, even if I’m uncomfortable.
Kim Peiffer is a journalist who writes about style, health, and wellness. She taps into a broad network of doctors, scientists, and medical experts to write in-depth service articles for leading publications.
More on MBC and metastatic breast cancer treatment:
- 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
