http://www.curetoday.com/publications/heal/2020/spring-2020/thriving-with-incurable-cancer
Thriving With Incurable Cancer

Katie Kosko

In 2013, Nalie Agustin was a typical 20-something until, at 24, she received a diagnosis of stage 2 estrogen receptor/progesterone receptor-positive, HER2-negative breast cancer.

After treatment, she was in remission for three years, and then a simple cough led to the discovery that her cancer had spread. She is now living with metastatic breast cancer.

Agustin has become an author, a public speaker and an advocate, sharing her story with young women around the world. In an interview with Heal®, Agustin discusses how she lives and thrives with an incurable cancer that she never thought would happen to her.

Heal®: Can you describe your initial diagnosis?

Agustin: I found a lump in my left breast, but because I was so young, I didn’t think anything of it. When I went to see my family doctor, she said that it’s normal for women in their 20s to have bumpy breasts because of their period or a cyst. She told me not to worry about it, so I waited. Then the lump grew, which led me to getting it checked once more. At that point, she gave me a referral paper to get an ultrasound.

I remember calling but asking for a mammogram because whenever you hear of breast cancer, you think of a mammogram. ... The moment I started giving the receptionist my date of birth, I was like, “1988.” And she cut me off to say, “Oh, they don’t give mammograms to women under 40.” I thought, “If they don’t give mammograms to women under 40, then I must be too young to have anything serious.”

So again, I waited, but the lump grew bigger. Finally, I saw my doctor again, and she told me, “You were supposed to ask for an ultrasound.” Fast-forward, I had an ultrasound and biopsy, which led to learning I had breast cancer. I underwent chemotherapy, radiation and a mastectomy of my left breast. Treatment lasted about a year and then I was declared cancer-free and in remission. For me, it was over.

When did you discover that the cancer had come back and spread?

In 2017, I had a cough, but it was winter, and I live in Montreal. Coughing in the winter is a normal thing out here. But the cough lingered. My boyfriend, who’s a bit paranoid about my health, became worried and forced us to go to the hospital. They did an X-ray and told me that my lungs lit up like a Christmas tree. I got another biopsy, which confirmed that it was a recurrence with metastasis. So it was the same breast cancer that had now spread to both my lungs, and I had to redo chemotherapy. I lost my hair a second time, and I went through all the symptoms
all over again. Thankfully, the lung nodules reduced significantly. We moved on to hormonal therapy. Since then, scans have been quite stable. So, I’m taking hormonal therapy and the newer CDK4/6 inhibitors. I’m living with it. I’m thriving, and I’m still advocating because again I don’t think there are many people who like to talk about a stage 4 diagnosis. It’s completely different from a primary cancer or a cancer in its early stages, mentally and psychologically.

You refer to yourself as a cancer thriver. What does that mean to you?

I felt like “survivor” is too passive. To me, “thriver” means one who lives beyond the limitations of a cancer diagnosis. It’s someone who will wake up every day and choose love, hope and faith over fear. It’s someone who uses their experience, despite the chaos, to better themselves and serve others along the way to make a difference.

How do you maintain that positivity in your life while living with metastatic breast cancer?

I surround myself with positive stories that inspire me. Also, it takes just going inward and remembering who I am, what I’m capable of and what I believe in. And if one person can make it, why can’t it be me? I choose to focus on the best-case scenario rather than the worst.

That’s what gets me up every day, along with my incredible support system. I’m surrounded by a very beautiful and loving family. My partner and I have been together for six years, and I have my little Chihuahua. I’m just surrounded with so much love. I think that that’s what I do every day: focus on the things that I have and are thriving rather than the things that aren’t.

What advice do you have for other survivors and thrivers?

I tell them to take charge of their bodies and health, to build their team and realize that they are in the driver’s seat of their health. A lot of people tend to feel like they are the victim and put their whole life and health in someone else’s hands.

But I think it’s important to feel empowered and do whatever it takes to feel empowered, to make sure that every choice you make is your own. Hire a whole team and find the best oncologist for you. Find someone that you can connect with, that you feel comfortable to speak with, and ask your questions.

But also realize that your oncologist is there to manage the cancer, so find other health professionals — a nutritionist, a dietitian, a physical therapist, trainer, an energy healer — to help you take the best care of yourself.

 
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