This isn't your typical golf fashion blog post I know, though it does touch on the importance of protecting your skin outdoors by wearing protective clothing including a long-sleeved shirts, pants, hat, and sunglasses with UV protection.
I originally planned for this to be my private journey that I experienced behind closed doors with my family and closest of friends, but when my worst nightmare came true, I felt like I couldn't just hide without trying to save, even just one person in this world from going through this.
Mine is a cautionary tale of how the all too commonly diagnosed skin cancer, basal carcinoma, can come in many forms and sometimes, not at all what we would expect. Making the rarer versions of this form a cancer, sometimes difficult to diagnose and if left untreated, or mis-treated in my case, basal cell carcinomas can become quite large, cause disfigurement, and in rare cases, spread to other parts of the body and cause death.
As a kid growing up on a farm, I spent my childhood enjoying the outdoors at a time when sunscreen was not something our parents even thought about. My love for the outdoors and playing golf later in life exposed my skin to my fair share of the sun, however when I was diagnosed with my first BCC in my late 20's and went through my first MOHS surgery, I began taking much better care of my skin, using sunscreen everyday and wearing a hat and sunglasses when I was outside for any length of time. In fact this past year I ironically developed a sunscreen applicator brush that would help make it easier to reapply your sunscreen on the go and something that would also make it easier to apply sunscreen on our young kids.
The damage to my skin was likely mostly done when I was younger, but there was also other factors that led to my life altering moment with skin cancer.
After my first Mohs surgery back in the early 2000's, I did notice years later some signs of the BCC coming back with very minor flaking of my skin on the side of my nose and I would promptly get myself back to the dermatologist to advocate for my care. Repeatedly I was prescribed a topical treatment ~ Imiquimod cream which is a cancer treatment and is also known by its brand name, Aldara.
It is still sold as a treatment for basal cell skin cancer (BCC) today.
After multiple treatments with this product over the years my Basal Carcinoma this treatment seemingly worked on the visual outside appearance however it only pushed my BCC down beneath the skin to continue growing over the years which resulted in substantial tissue being removed using a 8 rounds of Mohs Surgery on January 31, 2022 leaving me severe scaring and loss of tissue on my cheek, upper lip and full left side of my nose including the nostril. I have had one reconstructive surgery to repair my lip and cheek and will need to go back to try to rebuild and reconstruct the side of my nose.
My concern as backed up by numerous articles that I researched, is whether imiquimod may select more aggressive tumor cells or may just convey a natural course of tumor recurrence as we see with other treatment modalities. In any way there should be a clear consensus today that imiquimod treatment should only be applied to superficial BCC which have been biopsied before. Treatment of nodular or more aggressive BCC with imiquimod is and should be obsolete according to one article written in 2013. In case of recurrence after imiquimod treatment, surgery is always more damaging and more expensive because of the increased aggressivity as well as the poor clinical delimitation of these tumors.
After multiple skin cancer scares that I bought up to my dermatologists over the years and getting treated with this topical cream on the side of my nose, I noticed a hardening of the tissue on my upper lip and under the left side of my nostril and nose just over 4 years after my last topical treatment of Aldara. After a chemical peel made this area very red I thought it could have been a chemical burn however when I went to see my dermatologist again to take a look, they originally sent me home with a cortisone topical since there was no typical visual BCC lesion but luckily she brought me back in for another biopsy the Fall of 2021 (My last biopsy and treatment with Aldara was late July 2017).
My latest biopsy in November 2021 uncovered a morpheaform, infiltrative form of skin cancer that likely had been growing for years, overlooked and mistreated with a therapy that had been flagged for causing more harm than good in a "Letter To Dermatology" article referenced below, written in 2013.
On January 31, 2022 I endured 8 rounds of Mohs surgeries in a row that one day, removing tissue from my upper lip, cheek and left side of my nose including my nostril - to the point I could hear them scrapping to the bone. February 1st, 2022 I was lucky enough to have a truly amazing plastic surgeon lined up to begin the reconstruction of my face beginning with my cheek and upper lip. The left side of my nose and nostril have been left as an open wound for now until the foundation of my lip and cheek heals. The end of April I hope to be fitted with a prosthetic nose that I can wear for up to 6 months until the wound heals enough for the surgeon to go back in and try to rebuild the left side of my nose and nostril, if I chose to go that route.
Every morning I would have to wake up and have to change my dressings, clean the wound, lube up with vaseline and re-bandage everything up. It was like a living nightmare and the only way I manage is by disconnecting from my reality looking in the mirror. The aggressive and dehumanizing nature of Mohs surgery to remove such a large area of your facial skin and structure of your face, all while you are awake and without any sedation or pain meds, only multiple rounds of a numbing agent injected prior to each surgery round (sending you out to your car or a packed waiting room in between cuts to see if there are remaining cancer margins) is something I may one day need therapy for. I hope one day that my experience could have an impact on how the medical and dermatology community set people up for this type of out patient surgery. Why they can't make you more comfortable during this process is beyond me. It was a literally a living nightmare that I never want to experience again. I have researched this procedure as well and noticed that back in 2019 there were studies beginning on the effects of using virtual reality to improve the experience of this procedure and hope that one day steps in this direction will be more commonly implemented for patients that need to endure this step in their skin cancer eradication.
I have a long road to recovery, both physically and emotionally and it is during this time that I am striving to possibly make a difference for someone else out there.
Through the support of my most amazing husband, who sat for hours either in his car or the hospital cafeteria (due to covid restrictions still in place) during my surgeries so that he could be there to hold and hug me through every step, I will get through this. And to my family and friends that kept an array of fresh flowers, food and clever videos they taped for me to bring a smile to my soul, I appreciate each and everyone of you. Each morning I would wake up to inspiration that so many people care and love me, helped me get out of bed and seize the day no matter how hard each day of my initial recovery was.
If there is a purpose in this experience, I believe it is to give back to the universe and human kind by alerting people to research and question treatments; be an advocate of your own health care and research as much as you can to not only prevent skin cancer but also to treat it early and properly before it gets to the stage that mine progressed to.
Read this full 2013 "Letter to Dermatology" article here: Facial Basal Cell Carcinomas Recurring after Imiquimod Therapy
According to the author of this article in a Letter to Dermatology, A.M. Skaria Centre de Dermatochirurgie Vevey, Vevey , Switzerland:
"The histological examination during Mohs surgery revealed 1 multifocal basosquamous carcinoma, 3 morpheaform, 1 infiltrative, 1 nodular and 1 solid BCC. This means that 7 out of 8 patients showed an increase in the aggressivity of their tumor. The major point of concern is that nodular BCCs and a doubtful basosquamous carcinoma were treated by imiquimod and that the delay after this treatment was up to 4 years with 5 out of these 8 cases seemingly clinically healed during this period.In analogy to the article mentioned above, concern is raised whether imiquimod may select more aggressive tumor cells or may just convey a natural course of tumor recurrence as we see with other treatment modalities. In any way there should be a clear consensus today that imiquimod treatment should only be applied to superficial BCC which have been biopsied before. Treatment of nodular or more aggressive BCC with imiquimod is obsolete. In case of recurrence after imiquimod treatment, surgery is always more damaging and more expensive because of the increased aggressivity as well as the poor clinical delimitation of these tumors."
"Although there is no written consensus concerning imiquimod treatment today, the too optimistic indication of certain authors during the last few years, willingly supported by the industry, is not yet eradicated."
Skin cancer is the most common cancer in the United States and likely throughout the world. Current estimates are that one in five Americans will develop skin cancer in their lifetime. It is estimated that approximately 9,500 people in the U.S. are diagnosed with skin cancer every day. Research estimates that nonmelanoma skin cancer (NMSC), including basal cell carcinoma (BCC) and squamous cell carcinoma (SCC), affects more than 3 million Americans a year.
Because exposure to UV light is the most preventable risk factor for all skin cancers, the American Academy of Dermatology encourages everyone to stay out of indoor tanning beds and protect their skin outdoors by seeking shade, wearing protective clothing — including a long-sleeved shirt, pants, a wide-brimmed hat, and sunglasses with UV protection — and applying a broad-spectrum, water-resistant sunscreen with an SPF of 30 or higher to all skin not covered by clothing.