This is YOUR journey

October is National Breast Cancer Awareness Month, and First Descents wants to honor those in our community who have received a breast cancer diagnosis, which affects one out of every eight women and one out of every 833 men. We asked four program alumni to talk about their journeys, and we’ll be sharing their stories, advice and post-cancer thoughts with you throughout the month.

This week we chatted with Amanda Butler, who joined First Descents’ surfing program in Santa Cruz in September 2023. Amanda, whose FD nickname is Honey, lives in West Hollywood, California, and she’s a 33-year-old personal trainer with a strong TikTok presence. She went into her breast cancer diagnosis feeling otherwise fit and healthy, which she credits with helping her cope.

Amanda was inspired to start filming about her experience on TikTok, touching on topics like what chemo looks and feels like and what to pack for chemo days. “I started building an online community, and a woman I connected with told me about First Descents,” she says, adding that she applied on the last possible day to join the surfing adventure.

“It was good to get out there and move,” she says. “My body is still different than it was pre-cancer, but I made a point to work out and stay active through my treatments, which I think made a big difference. I went into chemo being very healthy and strong, so I went in with a full cup rather than half a cup. Chemo drains you, but I felt like my fitness left me with a half cup instead of being completely depleted.”

She says she wants anyone facing a breast cancer diagnosis to remember that you call the shots. “I always tell people going through this that this is your journey, so go ahead and make it your own,” she says. “I choose to see what this is trying to teach me rather than, ‘Why is this happening?’”

Can you please tell us about your diagnosis? Amanda:

From 2018 to 2022, I was going through some health issues. My hormones went crazy, and I couldn’t figure out why. I’m a fitness instructor, and so I’ve always led a healthy lifestyle, but things were happening to my body that I thought were not connected.

I spent four years trying to figure out my gut and hormones, and why was I having so much brain fog? I didn’t know what was going on until March of 2022, when I was diagnosed with Hashimoto’s [thyroiditis, an autoimmune disease that occurs when the body makes antibodies that attack the cells in the thyroid].

That put me in a mindset not to stress so much about everything, But then in July of 2022, I found a lump on my right breast. I’d been doing monthly self-checks, and I was like, I don’t know what this is. It was about a week before I was about to be gone for two weeks for work trips, and so I thought, I’ll do this when I get back. But then I went to a friend’s wedding, and I was in the bathroom with the bride and this random girl, and the girl said that she was an OB/GYN. We’ve all been drinking, and so I was like, I know I’ve never met you before in my life, but this is so important: Can you please do a breast exam on me?

And she did! I literally pulled my dress down, and she was so great. She said, Okay, I don’t think that this cyst is anything, it moves around. But I do think you should probably go get a mammogram and an ultrasound. And I said, okay, thank you. That’s all I needed.

So I went and got a mammo and an ultrasound, and even the nurses said it’s not anything. No history in my family, I’m the healthiest person I know. But then they called me and said there’s some spots, come back. So I had two biopsies on the right breast. On Monday night, I get a phone call, “We want you to come in and get the results right away.” Well, I used to work in hospitals, and this is not a good sign.

I was 32. They said, we’re so sorry to tell you, you have breast cancer, it’s DCIS [ductal carcinoma in situ], but we caught it very early. At first they said I wouldn’t have to do a double mastectomy, but then when I did the MRI, they found cancer in the lymph nodes. So now they’re saying I’m Stage 2, have to do chemo. I transferred to Cedars-Sinai Medical Center in Los Angeles, and I froze my eggs. In November of last year, I started six rounds of chemo, then had the double mastectomy, followed by 25 cycles of radiation, and now I’m on 14 rounds of low-dose Kadcyla, which I’ll take through next March.

What would you tell your younger, pre-cancer self?

First of all, you’re going to get a breast cancer diagnosis at 32! My life was always very challenging. I’ve always been an intuitive, deeply curious, adventurous person, and I didnt grow up in a supportive and encouraging family. So with that, a lot of times I’ve come back to the emotions of anger, sadness, disappointment, and so I’d tell myself that with all of these experiences you’re about to have with cancer, feel the feelings you need to, but know that you will get through it on your own terms. You’re going to be the strongest person you know.

How did you manage a work/life balance throughout this experience?

Working in fitness is hard: You need your body and your health, and so when those are at risk, what is your career anymore? I did it the best I could for as long as I could, but it was really a big question mark for me. I lost most of my clients through all of this, because I couldn’t lift or do anything for a long time, but I believe everything happens for a reason. I think this was a big redirection for where I’m supposed to be.

Before my breast cancer diagnosis, I was working 12-hour days, flying out of state to film all the time, working as the trainer for an Amazon fit app. But fitness and cancer do not mesh well together, because I’ve had days where I can barely open my eyes. I can’t imagine being older and going through this, and then also not being physically fit beforehand.

I really recommend that everyone get in shape, sooner rather than later regardless of whether you wind up dealing with something like this. Find something that you love to do. I used to run and do cardio all the time, but now I don’t want to do that. I love Pilates now. It doesn’t matter what you do, though, just that you enjoy it so you’ll stick with it.

Is there anything you wish you had done differently through your treatments?

I think the standard of care is pretty much the same now. I did the cold cap, but I still lost about 80 percent of my hair. I do a lot of on-camera fitness training, and as I was starting out, I kept thinking, this is taking my body. Is it going to take my career, too? But now I look back and think maybe this was my time to just shave my head.

In the fitness world, there is so much judgment. Everyone has an opinion. But, my hair is my identity, and with us black girls, hair is a little bit harder, on top of it. But I think looking back, I’d have just let go of all of that.

What’s the best advice you were given along the way?

When I was in the waiting room to get my biopsy, there were five or six Latina women waiting for appointments. Some had cancer, some were in remission, one was bawling her eyes out because she’d just been diagnosed. But they were all obviously supporting each other. One woman asked me if I spoke Spanish, and when I said no, she started talking in English.

In my mind at the time, I kept thinking, that couldn’t be me. But she told me that whatever happens, you have to remain strong mentally, because your body will always know what your mind is thinking. So if you stay strong mentally and emotionally, you will be okay. I will always remember that moment.