Author: Becky

This is a story written base on reflections my initial year after diagnosis (2016), with added comments about what I’m thinking after my second diagnosis (2024).

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~~~~~ 2016 ~~~~~

Words matter. Certain words sting, and one of them is “prevention.” Why? Because “prevention” suggests we know the cause of something and have the power to stop it. For me, that word lands heavy, almost accusatory. It’s like an unspoken judgment: You didn’t prevent this, so maybe you’re to blame.

I stumble across another concept: healthy privilege. It’s the idea that if you’ve never faced a serious illness—or cared for someone who has—you can’t fully understand what it’s like. I’m drawn to the explanations I find, especially the Spoon Theory, which perfectly captures the daily toll of limited energy.

The Spoon Theory, created by Christine Miserandino, is a metaphor for the energy it takes to get through the day when you live with chronic illness or limited health. Imagine starting your day with a set number of spoons—each representing a unit of energy. Every task costs a spoon: getting out of bed, making breakfast, answering an email. Unlike someone who is healthy, you don’t have an unlimited supply. Once your spoons are gone, you’re done. There’s no borrowing from tomorrow. For those of us who’ve lost healthy privilege, every choice, every activity is a calculation: Do I spend my last spoons folding laundry, or do I save them for dinner with my family?

Before cancer, I didn’t  understand what it meant to always be living with a limited number of spoons on a given day.

Healthy privilege and “prevention” collide in my mind. That word—“prevention”—feels like something healthy people cling to for security. For them, it’s a comforting thought: “If I do everything right, I’ll stay safe.” But for those of us who’ve been through illness, the word loses its comfort. It can feel like a weapon. It carries an undertone of blame, a suggestion that maybe we failed.

Take breast cancer, for example. The phrase “preventing recurrence” pops up all the time in discussions. Yet it’s misleading. The truth is, we don’t know what causes breast cancer to return. We can take steps to lower the risk, but we can’t eliminate it.

People who eat the “right” foods, exercise daily, and follow every medical recommendation still get breast cancer. Some progress to stage IV despite doing everything they’re told. Healthy choices may correlate with a lower risk of recurrence, but correlation isn’t causation. Just because something’s linked to a reduced likelihood doesn’t mean it prevents cancer.

~~~~~ 2024 ~~~~~

Since my recurrence, I’ve already done everything within my power to reduce the chances of the cancer coming back. The surgery removed the cancer, and the chemotherapy and immunotherapy—Herceptin—were steps to lower the risk further. Yet, I know that lowering risk isn’t the same as preventing recurrence.

My cancer was triple positive, meaning it was driven by HER2, oestrogen, and progesterone. Because of this, my treatment plan doesn’t end with chemotherapy. My next step is hormone therapy, which targets the hormones that fuel the cancer’s growth. In hormone receptor-positive cancers like mine, oestrogen and progesterone can act like fuel for tumour cells. Hormone therapy works by either blocking the hormones from attaching to cancer cells or reducing the body’s ability to produce these hormones altogether.

For me, this means trying Letrozole, an aromatase inhibitor. Unlike tamoxifen, which blocks oestrogen receptors, Letrozole stops the production of oestrogen by inhibiting an enzyme called aromatase. Aromatase converts androgens into oestrogen, especially in postmenopausal women. By shutting down this process, Letrozole creates a hormone-starved environment where cancer cells have less chance to grow or return.

Starting in January, after giving my body a few months to recover from chemotherapy and Herceptin, I’ll begin taking Letrozole. The plan is to stay on it for five years—if I can tolerate it. That’s the key: I’ll continue only if it doesn’t significantly impact my quality of life. Hormone therapy often comes with side effects, including joint pain, fatigue, and hot flashes, and it’s important to weigh these effects against the benefits. My goal is not just to live longer but to live well.

This recurrence does not mean I failed. It’s taken time to internalize this truth. The treatments I underwent before failed me—I didn’t fail them. I am not the one to blame for the cancer coming back. 

This is a story written base on reflections my initial year after diagnosis (2016), with added comments about what I’m thinking after my second diagnosis (2024).

The feature image is from Wikimedia Commons.

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Introduction

Before my first diagnosis, I was obsessive about breast self-exams. Every time I showered, I would check, feeling each part carefully. It was just part of my routine—not because I had any family history of cancer, but because of a high school health class. The nurse had brought in these dummy breasts with a “lump” we were supposed to find. I remember how I could never feel it, no matter how hard I tried. That really stuck with me. I was afraid that when it mattered, I wouldn’t feel anything.

I missed the lesson on looking for changes, not just lumps. Now I can tell you everything you should be looking for in a breast self-exam – changes, not lumps. However, only days after seeing initial changes, I felt a lump. I thought it was a muscle strain at first, but it didn’t hurt and it didn’t go away. It wasn’t a muscle strain, it was a 4.5cm tumour in my left breast. 

~~~~ 2016 ~~~~

It has been a year since my diagnosis and treatment for bilateral breast cancer. I no longer have breasts. I have fat tissue that was transplanted from my stomach to make forms that look like breasts. The breast-self exams I did before don’t make sense anymore. I have no breast tissue. But I also have no sensation, which comes with new risks. 

One of my new risks is the cold. I have body parts now—my reconstructed breasts, my belly—that I can’t feel. They’re living flesh, warm to the touch, but numb. I have to relearn what “normal” feels like, but also how to check myself to make sure I’m not getting frostbite.

I’m still exploring what a breast self-exam means for me now. This was how I found my cancer. I used to check every time I showered, and I saw the change almost immediately—a lump, and a strange discharge. But now, I don’t have breasts with breast tissue. My nipples are still there, but they don’t leak anymore. They’re unfeeling and unresponsive, but they’re warm to the touch.

I still examine my chest, but I’m looking for something else. No lumps—just damage. I’m scanning my skin for signs of anything that could have happened without me noticing, because I can’t feel it.

Part of my new normal is this constant exploration of my changed body. I trace the areas with no feeling, trying to find the boundaries—where sensation fades from something to nothing. I want to see if these boundaries shift. I’ve been told there’s a chance I might regain some feeling, but nerves can take up to three years to grow back. For now, I’m grateful it’s not winter. I’ll have at least a year or two, maybe more, before I need to think about what snow and freezing temperatures mean for my body.

~~~~ 2024 ~~~~

I am used to my body. My urge to inspect it so closely fades. I stop any form of breast exam in the winter. Now, it’s during the warmer months that I need to check. Instead of worrying about frostbite, I’m prone to heat rash, especially under my breasts. I don’t feel it when it starts; I only notice it later, after it’s become severe. By the time I see it, it needs days of treatment—creams and patience—to calm down. I can’t always tell if the creams are working; I just wait for the rash to fade.

I stopped looking for cancer years ago. Then came a regional recurrence, in my lymph nodes. They found it on a scan. I couldn’t feel the swollen nodes, even with a 2.5 cm tumour growing in the largest of the five cancerous nodes. My family doctor also could not feel it. That experience stripped away any faith I had in self-exams to detect recurrence. The familiar routine I once had, washing and inspecting my new breasts, has fallen by the wayside, offering no comfort now. All I can rely on are blood tests and scans.

My new normal feels like my old normal. After a shower, I give myself a quick glance in the mirror, just to check if anything looks wrong. That’s it. I don’t dwell on it. There’s nothing left for me to find. A self-exam in the shower isn’t going to catch cancer if it comes back. So, unconsciously, and now consciously, I’ve moved on from that practice.