When I was 28 years old, I ruined my life in the most mundane way possible. I didn’t make bad decisions, party too much or have some huge accident. No, I was just trying to go to bed early one night, rolled over and found a lump in my breast. And with that small simple act, everything changed forever.
I saw my OB-GYN first thing the next morning. Even though we knew I was BRCA2 positive, she assured me that it was a cyst and very common for women my age. I had a 99.9 percent chance of it being absolutely nothing, but she wanted me to get it drained anyway.
I actually fought her on this too. Needles near my breasts? No, thank you. But she insisted. The drainage was abnormal and needed to be biopsied. Then the biopsy showed carcinoma.
From there, in just a couple of months, it escalated at incredible speed: the core biopsy suggested no worse than stage II, the lumpectomy came back as actually stage III, and then the PET scan showed it had already spread to my liver, making my breast cancer stage IV, triple negative, grade 3, invasive ductal carcinoma. One of the worst diagnoses possible, with an average of one year to live—and that’s assuming the treatment even worked at all.
I was always an overachiever. When getting cancer, I really went for it.
I requested the most aggressive treatment possible and assured my doctors I could handle it. I never wanted to do this again, so I wanted to know that I did everything I could to kill it the first time. Over the next year, I had 16 rounds of chemo (ACTC), immunotherapy every three weeks, a double mastectomy and 31 radiation sessions. In other words, I was poisoned, cut up four times and BBQ’d alive.
But the biggest game-changer was immunotherapy. The statistics for my diagnosis were absolutely terrible, but immunotherapy is newer and wasn’t included in those. Triple negative patients have such limited treatment options because our cancer doesn’t respond to hormone blockers, but immunotherapy helps the immune system actually identify cancer cells and kill them, much like a vaccine.
Thankfully, my amazing oncologist knew about Keytruda, an immunotherapy that worked for the PD-L1 pathway my cancer tested. It had just begun going into trial for early stage breast cancer, but my doctor fought and advocated for me to get it directly from the manufacturer.
I combined Keytruda with my chemo, which makes it more effective for some patients. Once I finished chemo, I continued the Keytruda as maintenance every three weeks. The other game-changer with immunotherapy is that stage IV triple negative breast cancer patients are usually stuck on chemo forever, and therefore unlikely to be able to get surgery. But I was able to continue my Keytruda and get my double mastectomy, which greatly lowers the risk of my BRCA2-positive gene creating new cancer in my breast tissue.
Being so aggressive with treatment worked. This month is my two-year anniversary of being cancer-free. I feel so lucky to have made it this far, and I still get my Keytruda infusion every three weeks as extra insurance. The only reason I lived is because my doctors cared about me as a person, not just a patient. If my OB-GYN had let it go as “just a cyst,” who knows how far the cancer would have spread by the time we caught it?
“The only reason I lived is because my doctors cared about me as a person, not just a patient.”
If my oncologist hadn’t kept up with current research and known about Keytruda, plus advocated getting it for me before it was even available, I probably wouldn’t have lasted my first year. It is so important to advocate for yourself, get the extra biopsy, get second and third opinions from other oncologists and keep up with current research or find a doctor who does. Don’t be afraid of aggressive treatment or side effects, as most are reversible if not manageable. I have many, many scars and lasting burn marks from radiation, but I’m proud of every mark because I’m still here.
Remember, we “terminal” patients don’t have to figure out how to live forever. We just have to fight until the next great discovery. Stage IV breast cancer is considered terminal and incurable but with new research, great doctors and new drugs, we’re changing that.