a woman's mouth with a finger pointing to a small spot below her lip. Speech bubbles show a doctor and sun screen.

Skin Cancer Advocacy: A Work in Progress

Opening up about Efudex hasn’t been the easiest thing I have ever done. Once I decided I wanted to share photos of my Efudex experiences, Facebook helped me rapidly spread the word about the dangers of tanning, the resulting skin damage, and the effects of topical chemotherapy.

Spreading the word by going out

Making myself shop and work while using Efudex also played a huge part in spreading an important message. When I began sharing that part of my life, I hoped the message was received loudly and clearly. However, I wonder if the graphic pictures and public outings are enough. In fact, I’m afraid the blunt message is missing the mark. (I’m a born worrier; this is not at all out of the ordinary for me.)

Changing my perspective

Recently, I’ve tried looking at my photos from the perspective of a person who has never been diagnosed with skin cancer. I am beginning to see why so many people continue to tan, hit the beach without sunscreen, and neglect to wear protective clothing while making sure their children are covered head-to-toe. The “my-skin-looks-nothing-like-that” vibe is strong. Truthfully, they aren’t wrong in their thinking-they are only judging from what they see.

The first day following Efudex treatment

Cracking lip after Efudex treatment
First day following the end of Efudex application--what others may think they need to watch for. This picture shows the result of 24 days of Efudex applied twice a day to a precancerous spot (pictured below).

Photos like the ones I share show the impact of treatments and the side effects obvious to the eye. They don’t always show the skin prior to the first treatment. I’m willing to bet a vast majority of people who take a long look at photos of Efudex patients believe they are seeing the skin cancer itself. Our raw, blistered and crusted sores are intimidating. At the same time, they might just give observers false confidence. When they do a silent self-assessment, they will always feel relief--”None of my moles or spots look like that; I don’t have skin cancer.”

Learning to be honest

Questions about my treatment are few and far between as I shop or run errands, but when I get them, I tend to answer with, “I am using a topical chemotherapy cream to treat skin cancer.” Typically, neither of us have time for a lengthy confab about the original spot and how benign it once seemed to me. The natural takeaway for most folks, I’m sure, is, “Whew. I’m glad I don’t have anything like that going on.”

The spot before Efudex

A small red patch of skin on a woman's lip
My face prior to day 1 of Efudex. The tiny reddish patch just to the right and below the white scar is a precancerous spot.

My dermatologist biopsied the spot and it returned, remained slightly itchy, and produced a dry flake regardless of the amount or frequency of moisturizer applied. This is the type of lesion a dermatologist can identify as problematic. Most of us would look the other way and not give it another moment's thought. I’m really starting to see where I am failing as an advocate. I need to change my wording.

I wish there was time for the whole story

Brief interactions just don’t tell the whole story. The whole story, as it were, requires a much more detailed conversation--a conversation in which most people don’t have time to participate. My third graders must hear me say it a dozen times a day, and I don’t know why it hasn’t hit me sooner--visualize. I need to visualize the way others see my photos and what they must feel as they observe my face during treatment.

Seizing the opportunity

When I have the opportunity to actually advocate in person, three things need to happen:

  1. I have a finite length of time to make a point, and I need to begin by quickly explaining what my original spot or mole looked like. That’s what they need to watch for, not the red and irritated blotches of skin they currently see on me.
  2. The words “skin exam” and “dermatologist” need to make an appearance in the exchange.
  3. Above all else, I need to include a blatant remark about sunscreen trumping tanning.

Learning more to save others

As an advocate, I am still learning. As a skin cancer patient, I am determined to drive home my point. It’s becoming increasingly important to me to find new and more effective ways to change minds and touch hearts. We all need to shake things up from time to time. Maybe by shaking up my usual advocacy routine, I can help more people shape up their attitudes about sun safety and skin cancer.

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