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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SkinCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • tina
    2 months ago

    Thank you April!! And I will!! And I have spoken to many one on one who contact me privately. So I’m happy my story has helped. I know ears and eyes are being opened!!

  • suedt
    2 months ago

    I work at a high school and try to talk to the students when as they did today , show off their sunburns after the first warm sunny weekend of spring. All are talking about upcoming spring break, showing off pics of past sunburns. I know showing my scar on my face from Moh’s this past fall doesn’t change their thinking, I was young once and either thought it wouldn’t happen to me or that old age was a long time in the future. I do hope sharing my story will sink in eventually.

  • April Pulliam moderator author
    2 months ago

    @suedt…don’t give up! Teens often believe that skin cancer is something to worry about when you get older. They fail to see the link between each sunburn they get now and the skin they will have in their 30s and 40s and beyond. So many of us know this feeling all too well–I was one of those teens. Keep advocating and sharing your story with them. It’s important to share with them your past habits and how similar those habits are to their tanning and lack of sunscreen. Whatever you do, continue to push sunscreen and regular skin checks.

    Here are two videos of my experiences you can share. I am a regular Efudex user due to my sun damage.
    https://www.youtube.com/watch?v=6MdRmnndFN8&t=5s

    https://skincancer.net/life-with-skin-cancer/efudex-price-tanning/

    Best of luck! Know that we are with you all the way! April, Skincancer.net, Moderator

  • tina
    2 months ago

    Great article!! I’ve been fighting skin cancer going on 4 years now. Eighteen surgeries, one MOHS and multiple rounds of chemotherapy I have decided that I would make it all worth it by educating others on the dangers of tanning beds, ch I used religiously in my 20’s and 30’s and the importance of sunscreen and early detection. I had hoped being so open with pictures and my story would open eyes. Do you ever feel like people really don’t want to hear it. I live on the coast and being at the beach or in the river is what we do. Sometimes I feel they think I’m judging them if they are in the sun and so I’m avoided. This is far from the truth. I still like to be outside too. I’m just more careful now. I feel strongly about keeping this issue in people’s minds but I worry that enough is enough and they don’t want to hear or see it anymore. What are your thoughts??

  • April Pulliam moderator author
    2 months ago

    @tina…I agree…it can feel like people are turning a deaf ear to us as we try to advocate for sun safety. More often than not, we all have the “it won’t happen to me” attitude, and it can be difficult to drive home our point. Don’t give up though. Just when you think no one is listening, you’ll come across someone who listened from afar and absorbed every word. Wishing you all the best as you continue to spread the word! April, Skincancer.net, Moderator

  • April Pulliam moderator author
    2 months ago

    @tina…here’s an article on keeping the faith alive!

    https://skincancer.net/life-with-skin-cancer/take-heart-dear-advocates/

    April, Skincancer.net, Moderator

  • nanafights
    2 months ago

    Like you, I advocate to help someone see what tanning or the sun can do to us. Thank you for your story. I have done Efudex twice and was not a pleasant treatment . My docotor wants to try the Blue light next. I’m so tired of fighting but will have to keep trying to stay ahead of this curse.
    https://justthoughtsonablog.blogspot.com/p/my-skin-cancer-journal.html?m=1

  • April Pulliam moderator author
    2 months ago

    @nanafights…I read your blog. Thank you so much for sharing it. Your journey is inspiring and breathtaking all at the same time, but your courage is beyond measure. Keep advocating for sun safety. So much can be learned from stories like yours! April, Skincancer.net, Moderator

  • ScottM moderator
    2 months ago

    Thank you for sharing this. Being an advocate is such a great way to give back to the community. Scott (skincancer.net moderator)

  • April Pulliam moderator author
    2 months ago

    Thank you, Scott! I agree wholeheartedly!

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