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Stage 0

Marty Knight - December 2013

 

After reading so many of the survivor stories, I'm compelled to share mine also.

 

I was diagnosed with amelanotic melanoma with an unknown primary site on November 10, 1974, at the age of 12 years, 2 months.  A tumor was removed from my left cervical region, just above my collarbone.  It had first been noticed by my mother a few weeks earlier.  The tumor was growing rapidly.  The surgery and pathology follow-up were both done in Oklahoma City.  My father asked the surgeon what to expect and his reply was, "Take the young man home and enjoy him this Christmas."  The initial diagnosis was questioned due to my age and the rare nature of that diagnosis in a child.  The Mayo Clinic and St. Jude (Memphis) were both asked to do an evaluation and both reached the same diagnosis.  Though we were living in Oklahoma City at the time, our family physician was a very close family friend who lived in North Little Rock, Arkansas.  He had served as a resident at St. Jude in the 1960's and recommended that we go to Memphis. 

 

I was first admitted to St. Jude on November 24, 1974, and quickly underwent a full battery of tests, none of which showed any additional signs of cancer.  Believe me, the medical staff gave it their best shot!  I was poked, prodded, scoped, and biopsied in about every way imaginable, but no signs of additional cancer were found.  On December 9 the doctors recommended to my parents that I undergo a radical neck dissection to remove the majority of the lymph nodes on my left side.  The result would have been, at best, 50% use of my left arm, in addition the disfigurement of a young boy with the typical concerns and self-consciousness.

 

My parents are people of tremendous faith.  My father has been a minister for the church of Christ since 1958 and still preaches today (2013).  Upon hearing the recommendations of the St. Jude staff, my mother said, "He will live or he will die.  But, he will do so 'whole.'"  Ironically, the Oklahoma surgeon and our Arkansas-based family doctor used the exact same phrase in advising my parents: "Don't let them butcher the boy."  I don't use that term lightly, nor did my doctors.  They meant NO disrespect to the staff at St. Jude who were simply trying to save my life using the only tactics that they knew, regardless of how brutal those tactics may have been.  So, nothing was done.  I returned home to Oklahoma, underwent routine monthly checkups for several years, and have lived cancer-free since 1974.

 

I returned to St. Jude for a Survivor's Day in 1991.  It was my first visit since February 1975.  As I was speaking to the Alumni Director she asked my file number.  I told her that I had no idea.  She looked the number up in her records and said, "You are file (xxxx)."  The director of the hospital, Dr. Joseph Simone, was standing nearby and exclaimed, "You're the one! You're file (xxxx)!"  My father was quite amused at my startled reaction.  Dr. Simone related that my case is reviewed occasionally due to the rare nature of the diagnosis and the fact that I survived without treatment.

 

Later that day as we drove back to central Arkansas my Dad told me, for the first time, many of the facts that I have shared here.  He and my mother made the decision not to tell me the grave nature of the illness and the seemingly hopeless diagnosis that they had been given.  By the time I learned these facts I had lived a full adolescence, had been a very successful athlete and student, had married and become the father of two beautiful girls.  As of 2013, I have been married almost 30 years, have officiated at the marriage ceremonies of both my daughters, and have 3 beautiful grandchildren.

 

On that day in 1991, Dr. Simone told my father and I, "Sometimes we doctors need a case such as this one to let us know who is really in charge."  There is no medical explanation for my being alive today.  I trust in a God who was gracious to me beyond my ability to understand.

 

I contacted St. Jude for follow-up when I reached my 30-year anniversary in 2004.  They asked at that time if I would be amenable to a re-diagnosis to ensure that the original pathology was correct.  They believed that with better technology that perhaps they would find that a misdiagnosis occurred in 1974.  A week later they informed me that it was correct.

 

I share my story for two reasons:  1.) Trust in God above all and thank Him daily for the wonderful medical professionals who serve you; and 2.) Don't be ashamed of being a survivor.  Having childhood cancer in 1974 was very different than it is today.  Those circumstances left me with huge case of "survivor's guilt" that I could not address until more than 20 years later.  Share your story.  Educate your children.  Be the source of sunscreen for your golf partners.  Inspire others.  And live every day as if it is a gift from God.

 

 

 

Courtney Karl - March 2013

My story started in August 2011. I originally went to my dermatologist for treatment of acne. Before leaving, they asked if there was anything else I wanted them to take a look at, and I remembered a mole on my right hip/thigh that my mom had been telling me to have checked out.  I always loved to lie outdoors with baby oil and tan and, in the winter, use the tanning bed two to three times a week to keep that bronzed look year round.  The mole my mom was worried about was bigger than any of my other moles and in a place where the sun doesn't normally shine.  

 

Needless to say, I had the dermatologist take a look at my mole, and she decided to go ahead and biopsy it. One week later, I got a call that I needed to come in and talk to the doctor. I knew that couldn't be a good sign, and since my husband was out of town for work, my mom went with me.  Thankfully she went and wrote everything down, because as soon as the doctor said malignant melanoma, I went numb. All I could think of was my kids, while the doctor explained to my mom (who was writing everything down in a notebook) about coming back to get a larger portion of my skin removed, then seeing a plastic surgeon to have the area closed up properly, chest x-rays, and blood work. Thank the Lord, after my second surgery and 20 stitches later, my margins came back clean.

 

I am diligent about keeping my kids lathered in sunscreen along with myself. I love wearing hats now and spreading the word about the dangers of tanning, writing my state representatives, and just spreading the word on Facebook to all my friends and family and anyone else who will listen. I'm thankful my melanoma was caught early at Stage 0, and I am cancer-free now, but I will constantly have a fear that it will come back or spread to somewhere else in my body.

 

Thank you for listening and please spread the word!!


Kaitlyn Mittendorf - March 2012

 

In the summer of 2005, I was diagnosed with Stage 0 malignant melanoma skin cancer. I was only 8 years old; however, the cancer was treated and thankfully cured in the same summer, by the time I was 9. The cancerous mole was located on the top of my right arm, just above my elbow.

 

My mom was the one that noticed a changing in the mole every few weeks or every couple months. The mole wasn't even close to a perfect circle, like a normal mole should be. The edges were rough and asymmetrical, it wasn't a flat surface, sometimes it would peel, and the mole would also itch and/or burn at times. All of these are warning signs, so my mom refused to let it rest. She took me to my pediatrician, and he said it wasn't anything to worry about. But what my mom calls her 'Mother's Instinct' wouldn't let her sleep at night. She took me to a dermatologist, and she also said it was nothing to worry about. My mom continued to not have a good feeling about the mole, so she flat out told the dermatologist, "Remove it, or you can keep wasting my co-pays and both of our time." The dermatologist was hesitant to remove it because of the scar it would leave. The scar was the least of our worries at this point. The dermatologist removed it, and a few days later, she called back with the results.

 

She was in a position where she had to tell us she was wrong and that my results came back positive for malignant melanoma. When my parents sat me down and told me that I had skin cancer, I sat there, thoughtless and crying. At this point, I didn't really know anything about the cancer, so I just cried at the thought of the word. Everything was so surreal, and nothing made sense. Why me? I was 8, I never spent endless summer hours in the sun, I never got burned, my mom was always super mindful of me and my little brother's sun exposure, and she always remembered to lather us in sunscreen. How could it be me? Skin cancer unfortunately comes from both sides of my family, and three of my four grandparents have all had skin cancer in one form or another.

 

I had two doctors on my side, one that was going to work with my arm and one that was to work with my lymph nodes. After taking a large chunk out of my arm, the doctors were happy to tell us, and we were elated to find out, the tumor hadn't spread, and all of the tissue and lymph nodes came back negative. They were able to get what is referred to as a "clean margin," meaning the area around where the biopsy had been taken out did not test positive for cancer cells. I was officially cancer free! For me, I was lucky enough to have the cancer removed in the first mole biopsy, and the cancer hadn't yet spread deeper into my arm or to my lymph nodes.

 

Now I don't go a day outside in the sun without some kind of sunscreen. I keep a travel-size sunscreen in my purse, just in case. I am a firm believer in Mystic tans and at-home tanning products. I get awesome tans from the products I use. You don't need the sun to be tan. And trust me, the juice isn't worth the squeeze.

 

To the people who believe it won't happen to them, take it from me: it very well can happen. Limit your time in the sun, and always wear your sunscreen. It would be better to wear a low amount of SPF rather than none. If all you want is a nice glow, look at your sunless options. There are SO many advances in these products, and you can see a great glow without being orange and without ending up with skin cancer.

 

To the people who are currently battling this horrible cancer, don't give up hope. You'll get there eventually. You'll be able to sit and tell your story one day, just like me. I believe in you. To the people who have unfortunately lost their battle, you're forever in our hearts and you'll always be remembered.

 

 

Mark Hawley - April 2011

In 2008, I had my first diagnosis of skin cancer... two locations one on the right side of my nose and one on my right arm... they were squamous and basal cell lesions and were taken care of with MOHS surgery at one appointment each with very little scarring and no complications.

In September 2009, we noticed a new freckle on my right cheek about 1/16 inch square and it looked exactly like a freckle or aging spot. In December, my wife asked me to have my family doctor look at it when I went in for a regular check-up. He indicated that he believed it was nothing, but said it was time to go to the dermatologist anyway. The dermatologist thought it was really nothing, but I told them my wife didn't like it there and thought I looked older because of the aging spot, so they said they would remove it and send it in for analysis.

To everyone's shock, the test came back melanoma classified "in situ," the earliest stage of melanoma. Two surgical procedures to establish clear margins later, the half-dollar sized plug was removed and skin slipped up from lower on my cheek in my beard to cover the hole, and it was over (now I have to shave just under my right eye daily).  A year later, I would have to point out the scar... it is almost undetectable.

Now, I have a full body exam every six months. My case is almost not worth discussing except for the lesson learned.

It was fortunate that my wife did not like the aging spot and that the dermatologist was willing to remove it. But it means that you can't just dismiss changes in your skin and write it off to aging... examination and investigations are very important. Melanoma can be tricky and unpredictable even for the professional. Don't dismiss those new little skin blemishes as you age.