By Elyse Elconin Goldberg –
Life with Cystic Fibrosis is an ever-changing journey. Just when you think you have a grasp of all that taking care of yourself entails, another diagnosis gets added to your plate. Welcome Skin Cancer!
I am 63 years old, living with Cystic Fibrosis, and 8 years post a double lung transplant. I was born and raised, for most of my earlier years, in sunny Southern California. While this was a beautiful and wonderful place to grow up, the damage done from the sun in my early years has been rearing its ugly head in my adult years. As individuals with CF, we are at a much higher risk of epithelial cell cancers, which includes skin cancer.
My first experience with skin cancer occurred over 26 years ago with the BIG one, Melanoma! Ironically, a CF friend, who was a pathologist, saw an unusual looking spot on my upper right arm while we were sitting in a CFRI Meeting. She told me that from all her experience looking at malignancies, that my “irregular looking spot” was skin cancer. She was 100% right. To this day, I tell her that she saved my life!
Facing this very scary form of cancer was a wake up call for me. Gratefully, I had a superficial Melanoma that was surgically excised. It left a very interesting “question mark” shaped scar on my upper left arm, which was very appropriate from that point onward. I have learned when in doubt about anything on my skin, to not delay getting either an appointment with my dermatologist or immediately sending a photo via the online messaging system available with my medical provider.
There are 3 main types of skin cancer: Basal Cell Carcinoma, Squamous Cell Carcinoma, and Melanoma. A helpful screening tool is to use the ABC’s of skin cancer:
A: Asymmetry (one half is unlike the other half)
B: Borders (irregular, scalloped, or poorly defined border)
C: Color (varied from one area to the other (shades of tan or brown, black, red, white, or blue))
D: Diameter (larger than the width of a pencil eraser)
E: Elevation (raised, bumpy, dimpled)
I have had Melanoma and multiple Aggressive Squamous Cell Carcinomas. All of them have been areas that I first identified as areas of concern. It is a good practice to get into the habit of doing a full body check of your skin on a routine basis. Additionally, seeing a dermatologist every 3-6 months is highly recommended.
As CF and Transplant Recipients, we are continually taking medications that cause us to be more photosensitive to the sun. This means that our skin is more susceptible to getting burned, which in turn can result in skin cancer. Post-transplant medications are notorious for increasing the risk of skin cancer.
While we are not able to discontinue these skin damaging medications, there are many ways to protect ourselves as best as possible. My wardrobe has completely changed over the years to include primarily long-sleeve shirts (many that are SPF 50), long pants, hats with a very wide brim, and always when outdoors, sunglasses. I also have SPF 50 gloves for sports. I try to limit my sun exposure to before 10:00 am and after 4:00 pm and stay in the shade/under an umbrella whenever possible. When that is not possible, I put the trust in my sun protective clothes and a Zinc Oxide based sunscreen. The fewer the chemicals in your sunscreen, i.e. a 100% mineral sunscreen with effective UVB/UVA protection, the better.
We work so hard to keep ourselves healthy and it can be frustrating to learn that activities we love so much in the outdoors are yet another “thing” we need to deal with. Skin cancer is treatable, if caught early. Screening and taking protective measures are essential. I have tried exceedingly hard to not let a skin cancer diagnosis run my life. I love the outdoors! My husband and I enjoy hiking, traveling and my newest passion, playing pickleball. So, I have needed to figure out a way to do all these activities safely. Sun protective clothing and ALWAYS wearing 30-50 SPF sunscreen has enabled me to continue to enjoy life!
Elyse Elconin Goldberg enjoys baking, reading, and outdoor activities with friends, family, and her dog, Teddy. One of her greatest joys post transplant has been becoming a grandmother. She is a writer for CFRI’s Community Blog.