I first noticed it when we were on vacation: a red circle on my breast, about the size of a silver dollar, that appeared seemingly out of nowhere. I’d been scratching at it just before bed the night before, completely unaware of the actual mark that existed. At the time, I’d just assumed I had been bitten by a mosquito.
But when I saw it the next morning, I knew: This was no mosquito bite.
Almost instantly, my mind went to Heidi Loughlin. If you’ve never heard of her, she’s a blogger living in the United Kingdom who was diagnosed with a rare breast cancer when she was only 32. I had the opportunity to speak with Heidi personally about two years ago and her story has remained with me ever since.
Heidi was breastfeeding her 5-month-old when she first noticed a rash on her breast. At the time, she just assumed it was mastitis. And when she went to see a doctor two months later, he confirmed her assumption. But months went by, Heidi got pregnant again and the rash still hadn’t cleared up.
That was when she was diagnosed with inflammatory breast cancer.
Inflammatory breast cancer is rare (making up an estimated 1 to 5 percent of all breast cancer cases). hard to diagnose (because it doesn’t look like typical breast cancer and often does not cause a breast lump) and aggressive (Cancer.net puts the median survival rate at 57 months for stage III of the disease and 21 months for stage IV). So, you can imagine how terrifying a diagnosis this was for a young mother to receive.
I followed Heidi’s story for a long time and still check in on her blog occasionally today. She held off on the most aggressive treatments in order to bring the baby she was carrying safely into this world, but her daughter died just eight days after being born. Heidi has been fighting for her own life ever since.
So, yeah, when I first noticed that red, itchy spot on my breast, I got a little nervous. But I was also on vacation and I’m a mom—we tend to put our own health on the backburner. I tried not to think about it for a few weeks. Until, one night, a friend posted something on Facebook about her own inflammatory breast cancer scare.
“Know the signs,” she wrote. “And get yourselves checked, ladies. This is nothing to mess around with.”
It felt like a kick in the gut. What were the odds of someone I knew even knowing about this rare breast cancer, let alone posting about it when I had this worrisome symptom hanging around my own breast?
This shouldn’t be the kind of thing any woman has to go through. Ever.
I couldn’t continue pushing it out of my mind and not just because it was still itching. I emailed this friend to find out what her doctor had told her; the next thing I knew, we were swapping boob pics and comparing red marks.
“Please get it checked out ASAP!” She wrote me. “That’s so scary!!!”
I called my doctor the next day and made an appointment a week out. When my appointment came around, the mark was still there—though it had finally started to fade. My official diagnosis? Spider bite.
“Come back if it hasn’t cleared up completely in two weeks,” she told me. “But I think you’re fine.”
I laughed and told her, “That’s what I kept telling myself! But then I just kept thinking about this woman I spoke to a while back who had inflammatory breast cancer, only it kept getting brushed off as mastitis. And she was pregnant by the time she was diagnosed.”
“I had a patient that happened to,” she told me. “I wonder if it was the same woman?”
I live in Alaska. Heidi Loughlin was almost certainly not the patient my doctor was thinking of. But the fact that there is some other woman out there with such a similar story broke my heart a little. This shouldn’t be the kind of thing any woman has to go through. Ever.
Thankfully, my doctor was right—in a few weeks, my red mark had cleared up completely. Still, my brush with that fear had me thinking about the fact that if I had never been introduced to Heidi, my mind never would have gone to breast cancer upon seeing that mark. In my case, maybe that would have been a good thing—it certainly would have saved me a few nights of Googling pictures of other women’s breasts.
But for some other woman, a woman who might actually have cancer, never hearing about this kind of cancer could prove to be fatal. Waiting months and months to get checked, or assuming what’s happening is simply mastitis, could delay the very treatment needed to save her life.
Early IBC can look like:
- Persistent itching
- The appearance of a rash or small irritation similar to an insect bite
- The breast typically becomes red, swollen and warm
And more advanced symptoms might include:
- Thickening (edema/swelling) of the skin of the breast
- Redness involving more than one-third of the breast
- Pitting or thickening of the skin of the breast so that it may look and feel like an orange peel
- A retracted or inverted nipple
- One breast looking larger than the other because of swelling
- One breast feeling warmer and heavier than the other
- A breast that may also be tender, painful or itchy
When in doubt, get yourself checked out. I managed to squeeze my annual exam into that breast check appointment, so it wasn’t a waste of my time or my doctor's. But with something like this—when waiting could mean the difference between life and death—it’s worth the embarrassment of being told that rash on your breast is just a bug bite.
Especially when you consider the alternative.