I never thought I would get breast cancer. In fact, the idea never crossed my mind until I felt a lump. I hear this story time and time again where women are "too young" to have breast cancer. However, according to an article published in October, 2019 from Yale Medical, 11% of women under the age of 45 develop breast cancer. In fact, breast cancer is the number one cancer among women between ages 19 and 39. Interestingly, the National Breast Cancer Foundation posits that 15% of breast cancers are triple negative breast (ER/PR and HER2 Negative) and typically occur in younger women.
While we can google and read about triple negative breast cancer, we thought we'd take time today to speak with two women who have been diagnosed with TNBC in the 20's and 30's and have them share their first hand experience.
SBC: Sara and Caitlin, thank you so much for taking the time and sharing your experience with triple negative breast cancer. As two women diagnosed at a young age, I would like to share with our readers a bit more about your diagnosis, your treatments, advice you have to others who are recently diagnosed and how you are doing now!
Let’s dive in.
Tell me a bit about your diagnosis, type, stage, age when diagnosed?
Sara: I was 27 years old; 2 months shy of 28. I was initially diagnosed at stage 2a (no
lymph node involvement); triple negative. This was the lump I initially found and
got checked out. An MRI revealed a tiny spot in my other breast, which was biopsied. This was stage 0 due to size, but was not completely triple negative- a very low amount of one of the hormones (I can't remember which!) Treated as triple negative and the tumor board revisited my case after treatment and concluded I did not need hormone therapy for the little bit that was present. I also tested positive for the BRCA1 genetic mutation.
Caitlin: I was diagnosed at age 30; 1 month before I turned 31. I Diagnosed with triple
negative, stage 2b, grade 3.
SBC: Did you have Chemotherapy and if so, which drugs were you on?:
Sara: Yes, 16 rounds of chemo. I first did 12 rounds of Taxol, with carboplatin every 3rd
treatment. I requested a few weeks off after finishing Taxol and starting the next round of chemotherapy and my oncologist was fine with this. Then, I started Adriamycin and Cytoxan (A+C) also known as "the red devil" which I completed four rounds, once every 2 weeks.
Caitlin: Yes, I was on chemotherapy as well. Similarly, I had 4 rounds Adriamycin and Cytoxan followed by 4 rounds Taxol
SBC: Did you have Radiation? If so, how many weeks?
Sara: No.
Caitlin: Yes, 5 weeks plus 1 extra boost week (30 rounds total).
SBC: Radiation can be a bit confusing. We speak with Dr. Jimenez to get more information about radiation and what a boost week is. See short video below:
Were you on any experimental trials? How did they go?
Sara: Yes. I was on an immunotherapy clinical trial. Lasted an entire year. It went okay, I didn’t have any reactions while still in chemo but a few months after I started getting a whole-body rash.
Caitlin: No, I wasn’t on any clinical trials.
SBC What was your experience with Adriamycin and Cytoxan plus Taxol?
Sara: I used cold caps through treatment and it actually went pretty well. I probably lost about 30-40% of my hair. While I didn't completely lose my hair, it still was an emotional rollercoaster. The hair washing routine was tough and I absolutely dreaded it thinking 'will this be the day I start to really get bald spots, etc'. So not the same hair journey as many cancer patients, but still a traumatic one. I hate washing my hair to this day.
Caitlin: I did cold cap also, in fact, you can hear all about my experience on the podcast Breast Cancer Conversations we did together a few months ago.
What advice do you have for someone going through treatment? For example, body changes, how to cope, health and nutrition/eating habits, etc.
Sara: I ate pretty healthy before my diagnosis so I didn't make a whole lot of changes.
Cold capping has you hydrating extra so I drank a lot of water. Made smoothies almost daily with greens. Still ate a crap ton of sugar - I needed junk food to cope. I also started taking Biotin. I had started weightlifting seriously a few months before my