Navigating Triple Negative Breast Cancer: My Journey

TL;DR — On April 9th, I was diagnosed with Triple Negative Breast Cancer (TNBC). Thankfully, in the words of my oncologist, “you’ll be just fine.”

As many in my life know, I had a very rare soft tissue cancer (PEComa) that was removed in 2024. The breast cancer is unrelated and first came up on one of my regular PEComa follow up scans.*

Navigating the past few weeks between the April 9th biopsy results and the April 28th appointment with the oncologist has been one of the biggest challenges of my life. I felt like a ticking time bomb, had to go through a myriad of tests to see how far it had spread, and was filled with anxiety the likes of which I have never experienced.

One friend gifted me a reiki session — it’s not something I ever would have done normally, but during this time, it relaxed me and helped shift my outlook for this entire process. The language so many of us use around cancer is violent — you fight it, you battle it (which puts a heavy burden on anyone who loses that “fight”) — but my reiki practitioner suggested reframing it around restoring and healing, which very much resonated with me (PS there will be more reiki in my future).

I am giving my body the support it needs — including my team at NYU, the best science can offer regarding chemo/immunotherapy, self-care, healthy food, consistent exercise, and all of my friends and family — to allow it to heal and restore itself. I have also been thinking a lot about all the triathlons I’ve done. The determination and ability to do what it takes to achieve a successful outcome will serve me well here. 

As for next steps, all of my tests and medical care so far have been through NYU Perlmutter Cancer Center. Memorial Sloan Kettering, where I had my PEComa surgery, had a waitlist, but I will have my first meeting next week with a surgeon there for a second opinion.

Assuming I move forward at NYU, (which is most likely because 1) they have been fast, 2) every person I’ve encountered has been great, and 3) all of my other medical care is through their system except for the PEComa), they are currently screening me for eligibility in the I-SPY clinical trial. As someone with TNBC, this would mean starting with an immunotherapy treatment block tailored to TNBC (Ivonescimab). I would be tested at regular intervals to monitor its effectiveness. Depending on the real-time results, we would either proceed to surgery, or add more traditional chemotherapy/immunotherapy (starting with Paclitaxel + Carboplatin and escalating to AC + Keytruda if that isn’t working). If I am not eligible for the trial, I will proceed with traditional chemotherapy/immunotherapy and then have surgery. Type of surgery TBD, and likely radiation to follow regardless.

I’m still in the screening phase, which takes a few weeks, so I don’t know when treatment will actually start, but I have been assured these weeks won’t impact my care.

Stay tuned for next steps, but I am very, very relieved.