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 diagnosis and I tried to stay with it as much as possible. Some weeks I only made it to the gym once or twice but I did my best to keep up my strength and fitness.
Caitlin: Listening to body about rest is my #1 advice. Not the time to “push yourself”. I
was able to fight fatigue because I was listening to my body and resting when needed. I designated down time for myself every day so that even if I felt “good” I rested to not push myself too hard.
Honestly, I wasn’t the best with the health and nutrition piece. But I wasn’t the worst either. I tried to be moderate but also found a lot of comfort in comfort food. I luckily never lost flavor or had issues eating so being able to enjoy comfort food was something I often turned to.
How did you fight fatigue and chemo brain?
Sara: I don’t think I really fought the fatigue; just learned to accept it. I'd stay at my
parents the day or 2 after chemo so I didn't have to do too much for myself those days. My mom would come by for a 'mom visit' to my apartment most weekends to help me with household stuff. I live alone so it was tough to keep up with things and take care of myself.
Chemo brain is something I still deal with now; I forget things and find it hard to focus. I haven't really found anything to be helpful with this.
How did you Manage with work, home, life balance while in treatment?
Sara: I was lucky enough to have the capability of working remotely through treatment;
that really made my life easier- in terms of demand on my time and financially. My apartment was a mess most of the time but in a clean way, if that makes sense. I'd go out with my friends when I felt up to it and I also went out on dates here and there.
Caitlin: I was able to work throughout treatment, which isn’t for everyone, but it worked
well for me. I enjoyed keeping some normalcy in my life. Socially I had people come visit me at home since my energy wasn’t always up for going out.
What are the top 10 things you wish you knew before starting treatment/surgery (it’s ok if you don’t have 10!)
Sara:
1.Wish I knew I could defer my student loans while in treatment!!!! Literally the top thing I wish I had known.
2. There are some organizations I've only found out about since being done with everything- like Ellie Fund and Joe Andruzzi fund.
3. I wish skincare and sexual health was better addressed. There are resources available for sexual health where I currently am a patient but it's kind of glazed over.
4. I am well aware that mental health plays a big part here but again, I wish this was an integrated component of cancer treatment.
I guess the last 2 points were more things I'd like to see, not what I wish I knew. Honestly, I can't really think of much else! I felt pretty well informed in terms of what the plan was and we (my family and I) asked a lot of questions. A LOT OF QUESTIONS. Most of my appointments had 3 or 4 of my family members present. Very grateful for that.
Caitlin: : I don’t really have a top 10 list of things that I wish I knew. I had great support.
However, here is the advice I would give to someone just starting treatment:
1. Dr. Susan Love’s breast book is a great resource
2. Don’t google your diagnosis
3. It will take months, if not years post treatment, to have the energy to even start making changes towards coming back.
How are you doing now?
Sara: I still do most things I did before. Work, gym, go out, travel, all that stuff. But I do have a renewed sense of gratitude I think. Even on the most mundane, unexciting days.
I think I definitely have PTSD from this experience, and I think this affects my daily life in a variety of ways. I think about cancer every day and have had a couple pretty real scares since finishing treatment, complete with biopsies and all. Having the genetic mutation..... I pretty much feel like there's a target on my back. I doubt this will be my one and only encounter with cancer. I'm still single and I don't really see that changing with everything that's happened; what's likely to happen again. Think my perspective on a lifelong partner has changed since I didn't have a partner through the worst time in my life.
Caitlin: Since I found my lump through an at home self-exam and have made it my ongoing mission to bring awareness and education to other young women out there. I am so lucky to have found so much love, support and inspiration throughout the entire cancer community, but especially the triple negative gals!