Ugly Ducklings Moles – Part Three – Hold The Mayo

MayoIn the first two parts of my story, I was diagnosed with two atypical biopsies, discovered that the diagnosis was a coverup for a botched lab test and prepared myself for a visit to the revered hallowed halls of the Mayo Clinic. Surely Mayo would be a much better experience. Right?  It can’t get any worse or can it?

Hold the Mayo!

Bob and I arrived in Rochester, Minnesota, yesterday late. It was a long drive from South Central Michigan. We pushed through to make it a one-day trip so that we could relax a bit before my appointment at the Mayo Clinic.

I am not one to ever do things on blind faith. I operate much better when I have a chance to ask my questions, consider the responses, ask some more questions, and then fix on a plan of action.

So, since I was traveling and on my way to Minneapolis, when I received the pathology report, it made sense to secure a referral from my primary dermatologist, so that I could visit the Mayo Clinic Department of Dermatology. 

My primary physician who also helped me with the Mayo referral said my assessment should also determine “were the doctors at Mayo smart enough for me.” I honestly believe it was a little uptown rivalry between Mayo and Johns Hopkins that sparked the comment.

mayoI was surprised to find that so many friends when they learned I was going to Mayo, responded with some apprehension about my visit. It was like they thought it is a oneway door. My attitude about this visit was based on my approaching it from a wellness perspective. Admittedly, most of my hospital, clinic, and doctor experience do not understand visits for wellness. What’s wrong is usually the first words. For some unknown reason, I thought Mayo would be different. Surely they must understand wellness!

I was not sick, I was happy to know that the ugly duckling moles removed were not cancerous…no Melanoma, no basal cell carcinoma and no squamous cell, just atypical. No, I did not know if there was anything to worry about because the labs were botched. I thought Mayo would use state-of-the-art technology to give me a clean review. By now, the biopsies had healed, and I could not even tell where they were.

So from a wellness perspective, I admit that I am a Melanoma survivor who does not quite understand what “atypical” actually means. When I look at my body, many moles look “atypical.” So, my important questions for the doctors at Mayo Clinic: What is my normal? What advanced medical scanning process or techniques can we use to determine how to address my “a-typicalness” given the high number of moles on my body and considering my history of Melanoma and basal cell carcinoma?

My nature is also to be deeply curious, especially when it comes to my body. I am ultimately responsible for how I take care of myself and my skin health. I was interested to learn as much as possible about new advancements and technologies being used for skin screening.

Mehmet Oz (Dr. Oz) would have been proud of me. Being a good patient, I wrote my list of questions and was excited at the prospect of learning more! I anticipated that perhaps I could participate in a more advanced screening process that I hoped that Mayo was using for skin cancer screening. At the same time, I brought along my medical pictures that were taken of my body. I laughed at the thought that (back then) digital cameras were not being used by dermatologists and how arcane these 35 mm photos now seemed in light of the advancements in photo-technology.

Arriving at Mayo seemed very much like coming to a hotel. The covered car entrances had what looked like helpful bellmen, and someone was announcing over a public address system the arrival of this shuttle or that shuttle. It was highly orchestrated and appeared as though it was a well-designed movie set. Once inside the slow-moving revolving doors, my first thought was, I was back in New York at Pfizer corporate HDQ’s building. The eye was drawn to the highly polished marble looking floors and expansive, glass, artwork and artistic chandeliers. When I heard the music coming from grand pianos, I immediately thought of Nordstrom or a big cruise ship. I also thought fleetingly of the Titanic, and wondered if that’s what James Cameron would have said with some attitude while walking in the door? There was no feeling that I was in a medical institution until I saw people in wheelchairs and noticed a sort of uniform look to the staff members. There was a curious absence of white coats.

Mayo is very efficient at moving people through to their appointed time. They take pride in this. The deck of new patient paperwork was a bit daunting. As a first time visitor, it took me about 30 minutes to complete the deck. I realized as I was reading each question and checking off “no’s” and “none,” that the overwhelming assumption is that there is something wrong with you. Otherwise, why would you be there? Leaving the expansive waiting area, I was escorted down the very long corridor by a tall woman in a suit. There were rows and rows of examining rooms behind closed doors. When escorted into the examining room, I was surprised. The room reminded me of coming into a perfectly set hotel room, but with no windows, with a long couch, separate changing room, and an examining table that had a folded card on it saying that it had been sanitized and disinfected with something in a bottle from 3M. (After a day to reflect on this I now realize there were lots of subliminal messages swirling in my head around these visual images.)

The friendly and efficient nurse was welcoming and asked me to get changed into a gown. She gave me a heads up that two doctors would be seeing me today. While waiting for the doctors, the nurse confirmed some pertinent background information: my Melanoma surgery, my basal cell carcinoma surgery, and all the biopsies. She had the most recent pathology report from regarding 2 ugly duckling moles that were excised that came back with the moderately atypical notation. I asked the nurse if they received my pathology slides, as I was told the day before on the phone, that these slides were being FedEx’d in from the lab in Maryland. The nurse said she did not see any record of them and said she would check for them. Damned, they did not send them!

A charming resident doctor then greeted me. She let me know that she would do a thorough visual body screening check for me first. Great! This time gave me a chance to let her know of my primary questions:

Mayo
Wendy Steele, Keys CEO at Mayo

I mentioned that with the high number of moles on my body and with many of them looking more atypical than normal I was hoping to learn more about how I could determine “what is my normal.” I let her know that I was very interested in learning more about what point of care diagnostics Mayo is offering to skin cancer patients like me?

Was Mayo using the Dermatascope? Yes, in some cases for some moles, but not for the entire body. What? Why?

What about cellular scanning? No, not yet. What? Why?

What about body scanners? No, not yet. What? Why? Are you serious?

What about passive thermography? Nope. Uh oh…oh no, I was in shock. 

She said that there were things in the works but not available.

When she asked if I had any other questions, I asked about my pathology slides and wondered if anyone had received them or looked at them? She said she would check. She also wanted to know how long I planned to be in Rochester and I let her know that I was going to Minneapolis next week for business.  

The resident then announced “my consultant” would be coming in shortly. “Consultant?” The card I was given showed he was Dermatology Surgeon. I guess I was expecting a white coat because I was surprised when he walked in an Armani suit. Wait a minute a suit? 

What about my pathology slides? Is Mayo now a part of my dermatologist’s coverup?

My antenna was up, was this a business or a medical facility? I was about to learn that if you are looking for advanced thinking that you probably should not go to an institution touting its past. To me, trying to look for the most advanced thinkers conjures up research facilities and universities with wild-haired young passionate and inquisitive looking characters like you would see at Berkeley or Stanford. 

Determined more than ever now, not to give up, I asked the same set of questions to my “consultant”, to see if he had any further insight. He let me know that there was much they were still learning about Melanoma and that there were many facets to making a diagnosis and that it still relied on identifying the ugly ducklings, then cutting, biopsying and prescribing treatment. He let me know that he did not believe that there would be a time when technology or machines could do better than the human eye and human brain for detecting Melanoma. And that at this time, the best practice was still visually inspecting the body regularly and to have photos taken so that a visual comparison could be made manually by looking at the pictures and comparing them to the visual inspection, real-time of the body. 

I let him know that I was in shock, as I am such a fan of technology and found it hard to believe that current technology would not have some positive impact on people like me. The fact that German scientists are experimenting with skin cancer detection devices based on the iPhone tells me that this is not as much rocket science as the people at Mayo would want me to believe.

How about could we at least start with a more sophisticated way of taking full-body pictures that would accurately show a comparison of changes in moles over time and recognize the fact is that this is not advanced thinking? It is 20-year-old optical comparator technology used in everyday manufacturing.

Finally, my consultant recommended that “given my history and as a precaution,” he would perform another procedure to excise both of the atypical areas on my chest surgically. He described the size of the incisions and said that while one area would be easy to hide the scar, the other would not be so easy. He described the size of the scar and the fact that it would probably pucker a little as it was in a hard area to heal. He asked, “How does that sound?” I felt my face get hot and flushed. I was searching for the right words. What I blurted out: “Honestly, that sounds terrible! It sounds barbaric to me that you are recommending more cutting even though this is not cancerous. Moreover, if I were to do this, I would not even consider doing this without a plastic surgeon!” 

Okay, it was a straight throw down! I realized that I was firmly in control of my body and that I was not ready to check into this hotel. It was at this very moment that I thought, his path was only crossing mine and that we were in two very different worlds.

It became apparent to me that I am off to Stanford or Berkeley or where ever this may take me. In one sense, I am relieved, and in another, I am very disappointed. I realize again never to assume. It taught me a lesson to seek out people and organizations that are on a constant quest to improve and learn, and that do not rest on their reputation alone.

Back to the original test results? My results were not atypical. The test was botched, and they did not want to admit it. These “doctors” put me through a very scary and expensive ringer. As a Melanoma survivor, I have no insurance for this and mine is a vote of no-confidence!

Maybe my experience was a comedy of errors that just seemed to fall in place one after the other.  This was a chronical of my experiences as I saw them.  My message is to be on guard at all times when it comes to your health and wellness.  Please take off the doctor goggles.

You have to be your own judge of your doctors, clinics, and hospitals. Blindly following the system can be harmful to your health.  

Time to Get Wise!

 

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About Wendy Steele 24 Articles
Founder and CEO of Keys. Melanoma Survivor