I recently tried Coolibar’s UPF 50+ sun protective clothing, which is guaranteed to block 98% of UVA/UVB rays. Self-care to me means massages and pedicures, but in reality it also means taking care of yourself even when it is hard. For example, I booked an appointment with a dermatologist, recently, because I had a spot on my shoulder that was itchy. It wasn’t a mole, it was a pink spot that wasn’t going away. In my gut I knew I needed to get it checked out even though I had every excuse not to go. I had a 2 month old baby and toddler at home, so getting out was very hard! But, I remembered hearing that itchy spots on the skin could be cancer, so I went in.
As soon as the dermatologist examined the spot, she suspected it to be skin cancer. She sent in a biopsy to get it checked out. She confirmed, I had basal cell carcinoma, a form of skin cancer. It was difficult to hear that I had cancer. I was scared! I booked an appointment to have Mohs surgery, where they remove the unhealthy layers of skin until they get to the healthy layers. The surgery was approximately 20-30 minutes in total and the recovery process was about 10 days. The remaining scar is a continuous reminder to me to always protect myself in the sun!
I am thankful for the experience because I’m more mindful of how I protect myself, and my family from the sun. One of the best ways is wearing sun protective clothing. Coolibar’s UPF 50+ clothing is guaranteed to block 98% of UVA/UVB rays and helps you stay comfortable in the sun.
When my 8-year-old daughter, Rowan, was little, she would go up to people on the street to tell them all about her life: her latest adventures, her dreams of running a museum, an animal rescue, being a famous singer and on and on. Then and now, she wants to be seen and to be able to tell her story. Gorlin syndrome is part of her story.
Rowan was diagnosed with Gorlin syndrome, a rare genetic disorder, when she was 5 years old. After a couple of years bouncing around to various doctors for odd things and monitoring bumps on her face and body, a pediatric dermatologist biopsied one of them and determined it was a basal cell carcinoma (BCC), a type of skin cancer associated with Gorlin syndrome. Gorlin syndrome is also known as Nevoid Basal Cell Carcinoma Syndrome (NBCCS) due to the proliferation of BCCs in affected individuals.
Our family was floored, unsure of how to navigate all the doctor’s appointments, protocols, new recommendations, treatment options, and our mental health. Our diagnosing dermatologist suggested we connect with the Gorlin Syndrome Alliance (GSA), a patient advocacy organization focused on building community, seeking better treatments, and improving the quality of life of those affected by Gorlin syndrome.
Connecting with the GSA has been a beautiful silver lining, as we have met incredible people who have supported Rowan and our family on this journey. Rowan met another girl with Gorlin syndrome, who gave her a stuffed elephant that she treasures; it reminds her that she is not alone.
In Rowan’s first surgery, she had about two dozen BCCs removed from her face and body. Since then, she has had over 1000 BCCs treated in a variety of ways, from excision and laser removals to photo dynamic therapy and a variety of topical creams. She also sees a genetic counselor as well as numerous other specialists, and has maintained her outgoing demeanor, even crafting elaborate mazes on paper for her doctors.
Nothing will fully stop the unrelenting growth of her BCCs but reducing UV exposure from sunlight is crucial to minimizing her BCC burden. High SPF sunscreen and sunblock only provide so much protection; but UPF (Ultraviolet Protection Factor) clothing is best. Coolibar offers kids clothing that protects her with the highest rated UPF 50+ that blocks 98% of UVA/UVB rays. Rowan wears sun hats, sunscreen, and UPF clothing every day. Coolibar’s sun hats have at least a 3” wide brim to protect her scalp, ears, neck and face from the sun.
Gorlin syndrome and UV protection is a big part of her life, but Coolibar helps it be a smaller part, so she can focus on being the amazing, outgoing, inspiring, strong-willed kid that she is. Rowan is heading into her 3rd grade year at French American International School this year, and she has so much of her story ahead of her. I can’t wait to experience her impact on the world — she’s just getting started.
Skin cancer is something that runs in my family. My grandfather has had basal cell removed and is constantly having biopsies on his face. My mom has had Mohs surgery on her forehead and had melanoma on her left calf as well. Growing up, my mother always warned everyone to stay out of the sun, but I was always about tanning. When I reached my early 20’s, I pulled back from the bronzing and started to take better care of myself. In all honesty, I did it to preserve my youth.
This past summer when I was 30, I went on a trip with a big group of friends to a camp in Wisconsin. The first two products that went in my bag were SPF 50 and bug spray. I was the most careful one on the trip—constantly reapplying both products—but of course, I returned home covered in bites on my legs. 43 bites to be exact. 43 bites that itched so badly I couldn’t sleep. Two weeks later they were still there, mostly concentrated in one area of my left calf.
I was getting ready for my cousin’s wedding, carefully applying my anti-itch cream, when I noticed a spot in the middle of all the bites. It was a freckle the size of the tip of a permanent market. It looked strange. Sort of scabbed. I was pretty sure it was always there, but it had never looked like this. I sent a photo to the doctor who does all of my facials. She said the scabbing could be from scratching the area and to apply Vaseline daily until I could come in to get it checked. When I realized that it was the same spot on the same leg where my mom had melanoma removed, my gut told me it was cancer.
After returning to Chicago, I went into the office to have the doctor look at my leg and was sent directly to Northwestern Skin Cancer Institute. I was nervous. At 31 years old, I admittedly had never had a full-body scan before. I was always careful, so I didn’t think I needed to. Two biopsies and seven days later, I received the news that the funky freckle was indeed melanoma. I tried not to cry but I was terrified. I also felt fortunate. I had found my spot extremely early and with an excision, I would fine.
I called my mom and said “what are the odds” that I had melanoma in the same spot, same leg. It turns out the lower calf is actually an extremely common spot. It’s right where those slightly cropped workout pants end. A place often missed. A place I never thought to apply SPF when I was out and about!
The day of my excision was nerve racking. My new doctor explained the procedure. I couldn’t believe that this freckle, that was maybe a 1/4 of an inch, required a cut that was about 4.5 inches long, an inch wide and deep enough to cut to the muscle!
Physically, it was a difficult healing process. The excision was just below my calf, which meant it was pulled every time I took a step. There was a lot of swelling, but elevating was hard because it hurt to even rest it on a pillow. And I wasn’t healing well. Mentally, it was difficult as well. I couldn’t really exercise which is a big part of my mental health. Then there was the fear. Fear of being outside and exposed to the sun. I felt so fortunate to have caught this early, but the pain made me terrified of finding more spots on my body.
Throughout the process, I decided to share parts of the experience through social media. I was nervous at first, but the feedback and comments I began receiving were so up lifting. People began to share their stories with me, and I realized I wasn’t alone. But the best part was the amount of messages I received from people—friends, acquaintances, strangers—thanking me for sharing and telling me they just booked a full body scan because of my story.
I am now six months out of my excision and my mindset has completely changed. I realized I cannot live operating from a place of fear of melanoma. I have to live my life and take the necessary precautions. I am much kinder on my body, placing less stress on looks and weight. Instead, I am grateful for my health. I have also changed my ideas on what “influencing” means to me. My goal is to spread knowledge and awareness about melanoma and help people stay uplifted and informed. If sharing my story inspires others to book an appointment that could save their lives, then I know I am doing something right.
“Dry skin, maybe psoriasis, it’s nothing”, that’s what 3
different dermatologists told me when I asked about a small patch of skin
behind my left ear. It came and went over at least 10 years and sometimes
itched and felt dry. Sometimes I could barely feel it. I obviously couldn’t see
it and they were the experts, so I assumed it was just my sensitive skin acting
up. Maybe I didn’t wash behind my ears enough?
The itchy, dry patch behind my ear was basal cell cancer. Ironically, I was diagnosed 2 weeks after I started working at Coolibar. As VP of Brand Marketing and Creative Services at the time, I was immersing myself in the mission, sun-facts, warrior stories and education about prevention and our unique sun-protective clothing and accessories. It was kind of like Googling “skin cancer” except the knowledge I had gained in my first few weeks at Coolibar was completely factual. I had a heightened awareness of the potential consequences of my diagnosis. Although basal cell cancer is slow growing, I’d had it for over a decade. The voice inside my head immediately began cussing every derm who has ever looked at it and not taken the step to biopsy, even when I was advocating for myself. I was really angry! But that quickly turned into thankfulness for my primary care doctor who had referred me to Dr. Mary Meighan, who listened carefully, asked thoughtful questions and took her time during my annual skin check. I wasn’t even going to say anything about that itchy patch, but I did. Thank goodness.
I have practiced sun-safety for the majority of my life. During
my teen years, I realized that even if I was tan, no one noticed because my
skin is naturally very pale. So, while everyone else was tanning, I decided to
be a rebel and achieve the palest skin possible. That said, I remember getting
burned. In fact, there is a family story about me falling asleep curled up in a
fishing boat and getting sunburned across the exposed strip of skin between my
top and pants around age 3. I personally remember getting a brutal burn on my
back as a teen, after spending the day at a surfing lesson with only SPF 30
lotion to protect me. My father got diagnosed with melanoma in his late 70’s. I
knew it was in my cards. But, as they say, nothing prepares you for that
The suspense was killing me. How bad was it? I felt humbled by my vanity. I didn’t want a big scar. But the bigger fear was that I didn’t want cancer or any limitation from being a mother to my 10-year old daughter. Dr. Meighan referred me to her colleague at Zell Clinic, Dr. Karl Vance for Mohs surgery. I arrived for surgery and told him that I worked at Coolibar and that I was going to write a blog about my experience to help educate and support others. He was immediately all in and couldn’t have been more accommodating, narrating his every move. He even let me go behind the scenes where he was literally looking thru a microscope at the skin graft he’d just taken from behind my ear. He was making sure he got all the cancer in his first cut and wanted to see a minimum 2mm edge of clean cells all the way around the cut and he said, with some well-earned pride, that it was important for him to retain his stellar record. 99% of his Mohs surgeries got the cancer with the first cut. His record remained intact and so did my ear.
The cancer hadn’t gone very deep and only a little over an inch around. It was tiny compared to the skin cancer warrior’s I’d met on the Coolibar blog. I didn’t need to experience skin cancer to want to work at a mission-driven company like Coolibar. I already knew that tan skin is damaged skin and sun protection promotes anti-aging. My friends who worshipped the sun in their younger years now look their age and I, the eccentric pale girl, often pass for younger. But here I am, a cautionary tale, waiting for the next diagnosis. Hoping it’s not the big M. Take care of your skin! Get skin checks by a qualified dermatologist. Check your loved ones. Self-advocate with your doctors. Spread the word. That’s what I’m doing at Coolibar.
Let me catch you up on my story! One day I woke up with what I thought was a whitehead pimple on the side of my nose. My only thought was that it was going to be painful when I popped it because of its location. The worst spot ever to get a pimple! I thought I got lucky when it popped all by itself; then I realized something was different. This pimple bled a lot. Three weeks later, there was still a scab, so my husband encouraged me to visit the doctor. I was pretty sure the doctor was going to laugh at me for making an appointment for a pimple. I was wrong, he took one look at it and said he was pretty sure I had skin cancer. Two months later they removed the skin cancer which turned out to be a mixture of basal and squamous cell carcinoma; the removal left a dime size hole in the side of my nose.
Now, the reconstruction begins. The hole was too big to cover with a skin graph, so I would get the dreaded forehead flap instead! The forehead flap consists of using skin from your forehead to cover the spot on your nose. Doesn’t sound that bad at first until you find out that the flap of skin then has to be fed by a vein, that hangs across your face, for three long weeks. It’s totally a sci-fi process. I’m not sure who thought this procedure up, but something tells me people weren’t jumping at the chance to be the first one to have it done.
After the three week process, they remove the vein, re-stitch your forehead and send you on your way.
The hardest part of this process is not the vein on your face. The hardest part of this process is not knowing where the next spot will be. That’s what no one tells you about having skin cancer. I was told that my spot was something I’ve had since I was a child. A majority of my sun exposure came as a teen and young adult. Every new freckle you see, you think its skin cancer. Every time you get a pimple, you think its skin cancer. There is a part of you that lives in fear.
When you face challenges in life, the best thing you can do is share your story. Someone somewhere needs to hear that they are not alone in their fight. My year was full of people reaching out to me who were about to have the same procedure. I loved seeing their before, during, and after photos. I love that I was able to be a light to them in their darkness because I know they will eventually be a light in someone else’s darkness.
This past year, I had the honor of working with the Stephenson Cancer Center and Miles Against Melanoma to bring free-to-the-public sunscreen dispensers to the OKC Zoo. Protecting yourself against skin cancer by using sunscreen is easy. Sometimes we just need a simple reminder. Next time you’re out in the sun, break out some sunscreen and watch how quickly other people catch on. Sunscreen use is contagious! The only problem is… sunscreen doesn’t work if you don’t use it!
Read on to hear her STORY from last year and learn why instead of fear, Janet chose love in her journey.
It’s been nearly a year since I wrote a blog for Coolibar’s “This is Brave” campaign. A lot has happened in the last year. In that years’ time, an estimated 9,500 people were diagnosedevery day with skin cancer. An estimated 9,300 people died from melanoma. And skin cancer remains the most common cancer in the United States. These are sobering statistics.
Over the last year, I’ve continued to not only be a patient but also a skin cancer awareness advocate. I’ve had additional areas of skin cancer (squamous cell and basal cell) that needed treatment. I know what it’s like to have the anxiety of wondering whether a suspicious area is skin cancer, and I know the feeling of wishing skin cancer would just go away. Unfortunately, for me, it won’t.
I also know the feeling that skin cancer can be a lonely cancer. That’s why I will continue to share my story, and I will continue to talk with and encourage others who are battling skin cancer or who are supporting loved ones in their battle. I continue to write articles for a skin cancer site, and I also moderate for them. In doing this, I’ve learned that far too many people don’t give much thought to skin cancer until it affects them or someone they love. We need to change this – especially given that many skin cancers can be prevented.
There’s so much work to be done. I want to do more. Indoor tanning continues to remain a big business in the United States. Insurance companies don’t yet cover an annual skin exam as preventative care. Too many people continue to not realize the consequences of tanning beds and over-exposure to the sun. I did a lot of damage to my skin when I was younger, as did many people. My hope is that the more awareness we can raise, other people won’t make the same mistakes I did. Now we know better, and now we can do better.
To see Judy’s story with us from last year, visit HERE.
Yesterday, actor Hugh Jackman posted a photo on Instagram announcing his skin cancer diagnosis following treatment. He had a basal cell carcinoma removed from his nose. His photo comes with a warning to be SunAWARE.
“Deb said to get the mark on my nose checked. Boy was she right! I had a basil cell carcinoma. Please don’t be foolish like me. Get yourself checked. And USE sunscreen!!!”
Skin cancer is the most common cancer and Basal Cell Carcinoma is the most common skin cancer with an estimated 2.8 Million cases each year in the U.S. (Source: American Cancer Society) and is caused mainly by UV exposure. Good Morning America discuses the importance of getting your skin checked with dermatologist Dr. Doris Day after Hugh’s announcement. See the GMA segment below.
Hugh is recovering and expected to be just fine, his case was caught early. Hugh’s skin cancer diagnosis is a good reminder for all of us to protect our skin. Be SunAWARE and Be Safe!
On Tuesday, October 24, 2011, “The Doctors” TV show aired a segment nationwide about a new skin cancer treatment for basal cell carcinoma, the most common form of skin cancer. This treatment option uses low doses of radiation on a targeted area to kill the cancer cells, going no deeper than the skin. Only a few dermatologists are offering this non-surgical treatment for basal cell carcinoma opposed to micrographic surgery, the current standard for treatment, which can take hours to perform.
Seth Forman, M.D. practices dermatology in Tampa, FL and demonstrated the procedure on his patient Betty for the show. From patient Betty’s perspective, the treatment is like having an x-ray – it’s painless and over within 45 seconds. She will need multiple treatments to destroy her cancer – 12 times over a 4 week span. There are no shots, no blades, no bleeding, no stitches, not even a band-aid.
Watch the “Low Dose Radiation Treatment” segment from “The Doctors.”