Living with Skin Cancer day after day.

WISDOM FROM “UGLY DUCKLINGS” by Wendy Steele (Original Post May 9, 2011…See updates below)

My recent experience with several “ugly ducklings” has once again put a bright spotlight on my desire and responsibility to share my personal wisdom about skin health.

So far in this month of May, I have had the pleasure to personally talk to and meet many of our mid-west customers during multiple special events. At one event I was wearing several flesh-colored bandage strips on my upper chest and self-consciously made sure that I covered those strategically with clothing, as I did not want to reveal those ugly little bandages. I thought later that perhaps I would have been better off letting them show, because then I could share more personally my own experiences with “ugly ducklings”. Knowledge is a powerful thing.

Two weeks ago, I visited my dermatologist for my overdue annual skin check. Because I am a Melanoma survivor, it means that I am, and always will be, a melanoma patient. In fact I live 365 days a year with the fact that I am a melanoma patient.

Prior to my appointment, I called ahead and I alerted my Doc: “ I have several ugly ducklings that I wanted to have excised and checked”. So what are ugly ducklings? “Ugly ducklings” are now a recognized medical research term being used by skin specialists to help people understand how to recognize and track early warning signs of skin cancer. In fact the more you know about how to identify ugly ducklings the more effective you may be at beating skin cancer through early treatment!

On appointment day, the good news reality of my melanoma patient status, I am happy to say, is that I get a lot of extra attention when I have my skin checked. In my case, my doc and her specially trained RN assistant double teamed me as they scanned my entire body- scalp to soles of my feet, hands fingers and places where the sun never sees. I have lots of spots and freckles on my body. The fact is I could easily count more than 100 moles on my body. Really so many that it was decided five years ago that they should all be documented by photos, so that we could keep track of any changes in my moles! So with double team attention and prior photos in their hands, my body exam took about 15 minutes with two sets of trained eyes on me.

At the end of the exam, in addition to the 2 ugly ducklings that I pointed out, my Doc identified a third one—all of these were on my upper chest near the pectorals. It was concluded that all three should be excised and sent for biopsy.

The fact is these moles were not really ugly. They just looked different to me. And they looked different to my Doctor. And this is the “ugly duckling” practice at work…prompting me to get checked by my dermatologist. So what exactly should you be looking for when you personally check your skin every month? And what early warning signs should you pay attention to always and act on immediately? Here’s what I do:

I pay attention to any mole that stands out – that is anything that I think looks darker, redder more round rather than oval. These are moles which my eye is automatically drawn to looking at because it just looks different from the other moles that I have! The fact is I know these moles better than my doctor-mainly because I live with them and see them every day! Anything that stands out to me could be the first sign of an ugly duckling, an outlier that bears having checked for any type of change.
I also watch closely any moles where one half of the mole does not look like the other half, this is known as asymmetry
I pay attention to moles with blurred, ragged or notched edges – with irregular borders
Color changes in moles – from clear to red to brown to black or even blue – all are early warning signs
Anything larger than 6mm in diameter, i.e. the size of a pencil eraser bears watching more closely and getting checked
Every day we are aging and evolving and any change or growth in the mole is an early warning sign

Any of the above signs in new moles or growths or existing moles or growths should be checked immediately by a dermatologist. What I just described above is now known as the A, B, C, D, E‘s of melanoma skin cancer. They are all early warning signs to pay close attention to and pro-actively take action on with your doctor.

Another thing that I have learned is if a mole is itchy, crusty or bleeds you should immediately ask your doctor to remove it and order a biopsy. Do not let a doctor freeze or burn off these moles because you will not know if there were abnormal or cancerous cells in the tissue that was burned or frozen off. If you experience a regrowth of an area that was previously burned or frozen, immediately have a reexcision and order a biopsy to be sure it is cleared of any potential skin cancer.

So what was the result of my ugly duckling moles that were excised? Two out of the three came back from pathology as abnormal! Not cancer, but abnormal. Now, I am in the process of learning exactly what an abnormal pathology report looks like up close and personally in real-time. I am about to learn more about the wisdom from ugly ducklings and what my next steps will be. I will file another blog report as I continue down this path. I want to share this experience so that others will not be fearful but instead may learn from my experience.

Stay tuned!

Update May 17, 2011

You are Responsible for Your Own Health!

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 on Thursday.

I chose the title “You are Responsible for Your Own 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 really does not cut it when people say to me that life is so fast paced that people just make mistakes. This excuse does not fly when it comes to my health. I will explain!

I received my biopsy results that showed two of the ugly duckling moles removed are “atypical.” What then happened was more atypical behavior from my dermatologist. Not at all what I expected!

I travel for Keys visiting our customers and resellers 300+ days a year. I often do not have the luxury of getting things done in the same place all the time. So, I have trusted professionals all over North America that I rely on for haircuts and healthcare as well as many essential services.

handandsun3 — Read Skin Cancer Foundation UVA-UVB

Recently, I joined a Doctor Concierge service offered by my primary physician whom I would say is one of the more advanced thinking doctors I have met. 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 larger biopsy area and a layer deeper of skin to be sure that they had “clear margins.” As a Melanoma survivor, I am well versed with wanting 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. 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 and my appointment this Thursday.

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…meaning that atypical has a higher priority because of my history. A few calls later…literally minutes and I had an appointment with one of Mayo’s wunderkind 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 midday last Friday 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 Thursday May 19^th 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 definitely going to find out what the heck is going on. I am going to learn from this and do better. And I will share this with all of you, so that you can learn from this and do better when it comes to dealing with dermatologists. I realize that perhaps the institutional assumption is that I would have to return to the same doc for more work? Maybe or maybe I wanted to see a specialist. Unsettling? Yes..to say the least!

Clearly, I am taking charge of my own health. I am reminded that we should NEVER ASSUME. I also now hate that phrase on TV…you know the one in the pharmaceutical commercials. “Ask your doctor!” I really believe the phrase should be “Learn to Tell Your Doctor!”

More after Thursday at Mayo!

Hold the Mayo!

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 there smart enough for me”. I was surprised to find that so many people, when they learned I was going to Mayo, responded with some apprehension about me making the visit. My attitude about this visit was based on my approaching it from a wellness perspective. After all 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. So from a wellness perspective…I admitted quite frankly, that I am a Melanoma survivor who does not quite understand what “atypical” actually means. When I look at my body many moles looks “atypical”. So, my major 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 clearly 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 in May 2000. 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 absolutely no feel 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 obviously 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 in 1997, my basal cell carcinoma surgery in 2002. And the most recent pathology report from April 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.

A very pleasant 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:

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 dermatascopes? 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 really 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 a suit. Wait a minute a suit? What about my pathology slides? 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 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 on a regular basis 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 for people like me. The fact that the Germans 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 comparison of changes in moles over time and recognize the fact is that this is not advanced thinking? It really is 20 year old optical comparator technology used in everyday manufacturing.

Finally, my consultant recommended that “given my history and as a pre-caution” he would perform another procedure to surgically excise both of the atypical areas on my chest. 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. And he described the size of the scar and the fact that it would probably pucker a little as it was in a tough area to heal. And then 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. And if I were to do this, I would not even consider doing this without a plastic surgeon!” Okay, it was an honest 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 very clear 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 and I realize to never 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.

To be continued…

Sidebar: Wendy and Mayo

A sideways view by Bob Root

Wendy Steele is my wife and best friend. We have been through a lot of crazy times together. I have learned to read her body language especially when I see those red cheeks!

I am not much for hospitals or doctors’ offices. I especially do not like waiting rooms. This is more true when I am wondering what is going on with Wendy’s skin.

It was not too too many years ago that we were in the midst of her Melanoma. Then followed by many other biopsies over the years, I never get used to the uncertainty.

This time at Mayo Clinic was different. Wendy seemed almost angry and prepared for her meeting with the Mayo dermatologists. I was careful not to prod her. I was careful also not to tame her down. So, when we went to Mayo, I was not about to sit and read hospital magazines and sit with sick people. So, I brought one of my sneaky little high definition video cameras with me. I thought that I would capture some positive moments around Mayo. Little did I know that I would capture the same feelings Wendy was experiencing.

After walking around shooting pictures, I sat for just about two minutes in the waiting room. I saw Wendy walking from the examining area and I noticed those red cheeks. I know her and I knew she was beyond angry. She looked at me and said, “Lets get lunch and I will tell you all about it there.” She said, let’s sit at the bar and have lunch. She ordered a beer! Most husbands and friends might thing the worst. I knew better. Then, while she slugged down her beer, I listened to what you just read with a few more adjectives, verbs and adverbs.

After I read the article this morning, I thought to edit the video without the bias of the article, but that is difficult. So, I thought I would try to capture Wendy’s view of this experience. Here is my view of her experience accompanied by some very special music from my distant past.

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