Fifteen years ago, my husband looked at me and said, “What’s that?” Somehow we had both missed a bump the size—and roughly the color—of a pencil eraser on the tip of my nose. But suddenly it was all I could see.
Me: “Is it something bad?”
My husband: “You need to see a dermatologist.”
That’s when I knew it was bad. My husband is a pathologist so he knows skin diseases, but of course he doesn’t diagnose his own family.
I didn’t know who to see, though. While my community healthcare is fine for checkups, I don’t trust the local doctors for anything serious. Luckily for me, my husband worked with a dermatologist who referred me to a nearby friend with top-notch training. I went straight to the top of his waiting list and got in fast.
My dermatologist took one look at my nose and told me I had a basal cell carcinoma, adding that he could be wrong but that he was usually right. A biopsy confirmed his diagnosis and next came surgery, which is usually all you need for this kind of skin cancer because they rarely metastasize. They can still do plenty of damage locally, though, and mine was already tracking along a nerve into my face.
That basal cell carcinoma may have saved my life. I’d never thought about checking for skin cancer before, even though it runs in my family and I’d gotten plenty of sun as a child growing up before we all got serious about sunscreen. My basal cell carcinoma made me hyperaware of my skin—and paying attention to my moles is why I’m still here today.
I’ve been profiling cancer patients for a few years now, but this is first time I’ve told my own story. Before this, it was locked away so tightly that I’d barely told it all to myself, let alone to anyone else. A chance conversation with a friend, who’s also had cancer, unlocked it.
I told her I cry a little every time a cancer patient tells me their story, and then feel like I carry them around inside me until I write it. I’d always thought this connection was from my little sister, who had brain cancer two decades ago. She was my best friend and, after a decade on the East Coast, had just moved back to California and lived only an hour away from me. We thought we’d raise our children together. Instead, she died soon after giving birth to her second daughter.
My first skin cancer prompted me to get a professional skin check every year. After checking my skin a few times, however, my dermatologist decided not to do it anymore, saying it was “too stressful.” He was afraid of missing something, which I can understand. I’m afraid of that too.
So he sent me to his physician assistant, who told me he’d caught skin cancers that doctors had missed. This switch may have worked for them but it didn’t work out well for me. Five years after my basal cell carcinoma, I went in with a mole that bothered me even though it didn’t meet the ABCDE rule—Asymmetry, irregular Border, uneven Color, 6+ millimeter Diameter, and Evolving—that fits most melanomas. Mine was small (just 2 millimeters across), round, and evenly dark except for the barest hint of pink in one tiny spot along the edge.
The year before, I had asked my physician assistant to take photos of my prominent moles so we could track any changes. When I showed him the mole that troubled me, he brought out the photos. The mole in question was on the front of my right thigh and when he didn’t find a photo of it, he asked, “How did we miss that one?” That should have been a tip off that the mole was new but he didn’t even consider that.
Instead, he said, “We don’t worry about little moles like this.” When I said I still wanted him to shave off the top for a biopsy, he brought in their dermatologist who specializes in melanoma. And she said, “Eh! Don’t worry about that.”
Finally, I convinced my physician assistant to do a biopsy anyway for my peace of mind, and it’s a good thing I did. They were both wrong.
A few days later, my physician assistant called and said, “It’s a melanoma.” That was it. He placed the call because he’d done the biopsy, but he wasn’t allowed to answer any of my questions because he wasn’t a doctor, so he left me alone with that shock. The internet was more unnerving than helpful, and I just had to live with fear and uncertainty for weeks until I could see a doctor.
While telling my friend how it feels to profile cancer patients, I realized there was more to my connection with them than losing my sister to a brain tumor. It’s also from my own narrow miss with melanoma and how close I came to leaving my young daughters motherless, like my nieces. Then I told my friend that I’d had cancer too and the more I thought about it, the more I remembered. Now that I see my cancer story fully, I see what it has in common with many of those I hear from other cancer patients. Misdiagnosis and missed diagnosis. No information and no emotional support.
My younger niece was born way too early but today she is happy and healthy, and my sister might have seen both of her daughters grow up if today’s advances in cancer treatment—and organizations like Cancer Commons that make it easy to find out about them—had been available back then.
After I was diagnosed with melanoma, I got to see my original dermatologist again. He said he could tell it was a melanoma just by looking at it. He added that their “melanoma specialist” had missed it because she doesn’t do surgery, explaining that surgeons are more familiar with the range of melanomas because the moles they remove have already been confirmed as cancer.
He also told me that my melanoma was extremely aggressive and had already started to invade deeper. So he took off the rest of it, along with a huge chunk of the skin around it. Then he told me I had a 1 in 5 chance of getting another one.
Since then, I’ve made sure to get my skin checked by a dermatologist who does surgery. The receptionist always wants me to see a physician assistant so I have to argue with her every time. I get my way as soon as I say, “One of your physician assistants missed a melanoma.”
That’s the bad. There can also be good. Simply being alive makes many of us deeply happy. Everything seems new and wonderful, we take nothing for granted. We also spend more time doing whatever matters most to us, and with our family and friends. And we are kinder to others and to ourselves: more patient, more generous, more forgiving.
These commonalities serve as warnings and inspiration for other cancer patients, and that’s how I’d always thought of the profiles I write. Telling my own story makes me understand there’s much more to it: sharing your experience as a cancer patient is powerful. Once I told my cancer story to my friend, I was surprised that I was compelled to write it—and to share it. Doing that somehow gives it more weight, makes it more real. As Susan Burton put it in a New York Times Magazine profile of NPR interview maven Terri Gross, “There is value in speaking honestly about something that is both essential and hidden.”
I was lucky that checking my skin was already a habit, and that my melanoma was in a spot that was easy to see. And I made my own luck by pushing for its removal even though my healthcare providers told me it was nothing. It’s scary to think how close I came to a very different ending.
But “just” coming close also meant my cancer didn’t feel like the real thing. Until now, I’d always downplayed my melanoma because it hadn’t spread plus it was “only” on my skin. I didn’t feel like a real cancer patient or a real cancer survivor, and either claim would have made me feel like a fraud. That was based on my experience as it happened, when the rest of life swept away time for reflection. Now that I’ve set my cancer story out separately from the other threads of my experiences, I see its validity.
Right before writing my story, I read Voices from Chernobyl: The Oral History of a Nuclear Disaster by Svetlana Alexievich, winner of the 2015 Nobel Prize in Literature. In it, she profiled people who survived Chernobyl, letting them tell their stories in their own voices. And in the afterward, she says, “I often thought that the simple fact, the mechanical fact, is no closer to the truth than a vague feeling, rumor, vision. Why repeat facts—they cover up our feelings. The development of those feelings, the spilling of those feelings past the facts, is what fascinates me. I try to find them, collect them, protect them.”
This resonated with me when I first read it. But telling my cancer story has given me a different take. I told my own story the way I tell everyone else’s, with the facts of my diagnosis and treatment. And I realized that underneath those facts run feelings that are not always apparent to the reader or, at least for me, acknowledged by the patient. To me, telling your story can liberate the feelings under the facts—in other words, they can give voice to and validate feelings. In my case, I can finally say this: I am a cancer survivor. And that feels so good.
Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.