My Ugly Ducklings Skin Cancer Story by Wendy Steele
In part one of my Ugly Ducklings story, I explained the process and reasons I went through having three moles , aka Ugly Ducklings, biopsied and tested. My story turned from being alarmed at the doctor’s findings to anger when I realized that there was a coverup of a sloppy lab process. I was lead to believe I had potentially cancerous growths that needed retesting only to find out the lab messed up the test. Not atypical, but typical!
You are Responsible for Your Health!
I chose the title “You Are Responsible for Your Health” because I have been saying it for years, and I learned firsthand how true this statement is after my experiences over the last two weeks. It does not cut it when people say to me that life is so fast-paced that people make mistakes. This excuse does not fly when it comes to my health.
To put everything into perspective, I received my biopsy results that showed two of the ugly duckling moles removed were “atypical.” What then happened was weird behavior from my dermatologist. Not at all what I expected!
Almost everyone lives somewhere and develops doctors and services in their community that they frequent. Not Me!
I travel for Keys visiting our customers and resellers 200+ days a year. I often do not have the luxury of getting things done in the same place by the same people. I have trusted professionals all over North America that I rely on for haircuts to healthcare.
A while back, and because of my extensive travel, I joined a Doctor Concierge service offered by my primary physician. I would say he is also one of the more advanced thinking doctors I have met. He is a teaching doctor at Johns Hopkins, and I pay him for a comprehensive annual physical that is wellness-based. Then, as a part of the concierge service, I receive email, phone, and referral help from him while I am on the road. Pretty neat and little did I know I would rely on it when my dermatologist was not able to help me.
Here is the deal in a nutshell. I received the news that my two moles were not cancer, but “atypical.” I thought to myself, what exactly does that mean? I called my dermatologist, and her nurse assistant explained that they wanted to take a more extensive biopsy area and a layer deeper of skin to be sure that they had “clear margins.” As a Melanoma survivor, I want to make sure that any “questionable” area be excised to make sure nothing undesirable is left. I have had numerous Mohs surgeries.
What happened next was minimally very disappointing. I told my dermatologists office that I was traveling and asked if they could give me a referral to the Mayo Clinic. The silence on the other end of the phone indicated they did not know how to do this. So, I began my strange journey to get to Rochester, Minnesota.
Since my dermatologist was not able to help, I thought, “my concierge service”! I called my primary physician, and he called back in just a few minutes. When I answered the call, he said, “Hi Wendy, this is Steve Katz returning your call”….he said, “Steve” not “Doctor Katz”! I was relieved and immediately began to feel better.
I explained my situation, and he asked me where I was going to be over the next few weeks. I said, Minneapolis, Santa Fe, and Albuquerque. He said, “I will get to work and get back to you.” I hung up and told Bob, “Steve is on the case”!
To my surprise within 10 minutes, I received a call from the Mayo Clinic referral service in Rochester, Minnesota. Steve gave them my information, situation, and timing. He signed me up as a patient and explained that I am a Melanoma patient. A few calls later, literally minutes, and I had an appointment with one of Mayo’s wunderkind Mohs surgeon dermatologists.
What happened next unsettled me tremendously.
Kelly called me from Mayo Dermatology and told me that I needed to have my dermatologist officially refer me and send my patient records as well as the atypical dermatology report to them. I called and luckily was able to talk to my primary dermatology assistant who agreed to call Mayo immediately. She did, and all was set except for one shockingly simple problem.
Kelly called me back from Mayo and told me that I had an appointment on the following Thursday with a specialist in Mayo Dermatology. Then there was a pause and a bit of silence. Kelly then said that the doctor might not be able to do the additional excision that day because when they asked for the pathology slides from my regular dermatologist, they responded to Mayo that “We do not have them, and no one has ever asked for pathology slides before.” To me, that seemed a normal thing for a Melanoma patient to have their dermatologist keep these. It sounded to me that Kelly at Mayo was shocked at this response from my primary dermatologist’s office, mainly because Kelly repeated that she found this to be “very surprising” no less than 3 times during our conversation. Uh Oh!
Does it not seem strange to you that a doctor, a pathology lab would not keep the slides from the biopsy or images at least from an atypical diagnosis for a Melanoma patient? So, I am going to find out what the heck is going on. I realize the institutional assumption is that I would have to return to the same doc for more work?
I am taking charge of my health. NEVER ASSUME.
I also hate that phrase on TV…you know the one in the pharmaceutical commercials. “Ask your doctor!” I believe the phrase should be “Tell Your Doctor!”
Ugly Ducklings Part 3 gets even weirder!