Skin Deep

Hair Follicle Triplet - by Dr. Alexander Meves

Hair Follicle Triplet – by Dr. Alexander Meves

A few years ago I had a mole on my left forearm that went rogue. My youngest son, who was only seven at the time was the first to notice the change. “That looks weird, Mom,” he said. “I don’t like it.”

I’ve always been a freckled, somewhat mole-covered individual, so I didn’t think much of his comments at first. Thankfully, the kid wouldn’t allow me to dismiss his observations. He leaned on me until I made an appointment to have it looked at by a professional.

The dermatologist agreed with my son. The mole was suspicious and needed to be removed and tested, immediately.

When the test results came back, I was given the diagnosis: “Melanoma in situ.” Translation: The mole was Stage 0. Abnormal melanocytes were found in the epidermis. These abnormal melanocytes could  become cancer and spread into nearby normal tissue. I made appointments for day surgery to have the surrounding tissue removed and to have a few other tests.

While I waited for the next round of test results, I beat myself up over the times my fifteen-year-old self had slathered suntan oil on my body and laid-out on the roof of the woodshed in my parent’s backyard. If I’d only known then what I know now. Stupid girl. No one cares that you didn’t go to Florida on spring break.

"Deep Impact" asteroid body, H&E stain, by Craig Roelke, M.D.

“Deep Impact” asteroid body, H&E stain, by Craig Roelke, M.D.

What’s that got to do with Lynch Syndrome?

While the discovery of my rogue mole and the subsequent diagnosis most likely wasn’t directly related to Lynch Syndrome, the experience did lead to my making annual visits with a dermatologist a priority. Once the doctor found out that I had Lynch Syndrome with the MSH2 mutation, he also began looking for outward signs of Muir-Torre Syndrome as well as suspicious moles.

What’s Muir-Torre Syndrome?

Muir–Torre Syndrome (MTS) is a rare hereditary, autosomal dominant cancer syndrome that is thought to be a subtype of HNPCC (or Lynch Syndrome). Individuals are prone to develop cancers of the colon, breast, and genitourinary tract, and skin lesions, such as keratoacanthomas and sebaceous tumours. The genes affected are MLH1, MSH2, and more recently, MSH6, and are involved in DNA mismatch repair. – from Wikipedia.

People with Muir-Torre syndrome are also at risk for developing certain skin changes in adulthood that may form in the sebaceous glands. The sebaceous glands are located just under the skin and produce an oily substance that is a part of sweat called sebum. The typical skin changes found in Muir-Torre syndrome are sebaceous adenomas, sebaceous epitheliomas, sebaceous carcinomas, and keratocanthomas. Most of these skin conditions are associated with noncancerous lumps on the skin, some of which are liquid-containing cysts. Basal cell carcinoma, a common type of skin cancer usually related to sun exposure, has also been reported in people with Muir-Torre syndrome. Only the skin carcinomas are cancerous. Muir-Torre syndrome is also associated with rare cancers of the sebaceous glands. If a cancer of the sebaceous gland is diagnosed, it is recommended that the patient talk with a genetic counselor or geneticist (a doctor with training in genetic diseases and conditions) that is familiar with the syndrome as part of his or her medical care. – from Cancer.net

In other words, if you’ve got Lynch Syndrome (specifically with the MLH1, MSH2, or possibly the MSH6 mutation) you should consider adding an annual  dermatological screening to your list of things to do.

"Party in the Papillary Dermis" - by Allison Arthur, M.D.

“Party in the Papillary Dermis” – by Allison Arthur, M.D.

Long ago, my mom had mentioned the possibility of Muir-Torre syndrome being part of our family’s medical history profile, but I’d only paid close enough attention to remember the name. When my dermatologist brought it up during one of my appointments, I finally began to put the pieces together. It’s easy to overlook the lumps and bumps of aging and dismiss subtle changes in your sebaceous glands etc. That’s why it’s so important to have a trained set of eyes on your body once a year. It’s my understanding that sometimes these changes come after CRC has arrived, sometimes in concert, and sometimes they act as a herald, a possible first sign that a tumour  is about to form inside the body as well as on the skin. The important thing to remember is that the research for MTS is ongoing and in some cases, suspected MTS may help lead to testing for Lynch Syndrome in those who haven’t been diagnosed.

I’m writing about Muir-Torre Syndrome here, not to give those with Lynch Syndrome yet another thing to fret over, (heaven knows life with LS can feel like an endless series of pokes and prods in the name of medical vigilance) but to give you another tool to add to your toolbox of awareness. For those of you with an unconfirmed but suspected history of LS, perhaps this post will help you shed further light in tracking hereditary cancer down in your own family.

Mind your lumps and bumps, people!

NOTES:

1. I didn’t post any images of the skin lesions associated with Muir-Torre Syndrome because I don’t feel comfortable making the leap between online images and self-diagnosis. If you have any spots, irregularities, growths or lesions on your skin that are suspicious, please seek the advice of a medical professional.

2. Excellent information about Muir-Torre Syndrome can be found here:

Muir-Torre Syndrome at Cancer.net

Full Wikipedia page on Muir-Torre Syndrome

Muir-Torre Syndrome (including a break down of associated skin lesions by type) at DermNet NZ

3. Artwork for this post came from a gorgeous collection of Dermatology Art curated by Mayo Clinic Dermatologists.  “Dermatology Art Shows Beauty Really is Skin Deep.”

 

I sing the body electric

grace

“grace” by Jason Thielke

Happy New Year.

There’s a blizzard raging outside my window right now, but I’ve got a fire roaring in the wood-stove and a hot cup of tea nearby, so this girl-in-a-snowglobe is doing all right. I hope you’re safe and warm and content for the start of 2014 and that you’ve got big beautiful plans for the year ahead.

In my usual New Year’s fashion, I’ve spent the last couple of days putting things in order and wishing on stars. Writing projects have shifted from dreams to outlines to full-on works in progress, and sticky note reminders of annual screenings have been converted into doctors’ appointments with dates and times scrawled on the calendar. (Dermatologist once over, end of January. Colonoscopy, the first week in February. Wheee!) There’s a lot to look after in my swirling TARDIS of a brain, and  I’m always searching for the best way to keep track of it all.

Rhythms and patterns and leitmotifs, oh my.

I learned to read music and the written word in tandem. It made for an interesting childhood, one where I was constantly searching for meaning in melodies, and for hidden patterns and rhythms within language. Even now it’s difficult for me to read through anything I’ve written and not obsess over the cadence of my work and the repetition of certain words and phrases. My journals are riddled with the words “hope,” “hopefully,” and the superstitious two word phrase nestled between asterisks, *touch wood.* (Strangely enough, I write that little charm far more than I speak it.)

As odd as it seems to obsess about such things, I’m thankful that my mind works this way. If it hadn’t been for my dedication to writing about my state of being (emotional and physical) on a daily basis, I’m certain I wouldn’t be as proactive as I am about my health.

Prophetess_Thielke

“Prophetess” by Jason Thielke

Tracking Wellness

From a practical standpoint, it’s easy to see why keeping a written account of one’s health is a good idea. Notes on diet, medications, physical activity, physical symptoms, sleep cycles, pain locations and levels, emotional well-being, doctor’s visits, (and, if you’re female, your monthly cycle) are a valuable source of information for you and your healthcare team. On a broader scale, being vigilant about recording these stats on a daily basis will help you to see the bigger picture when it comes to your health. In as little as a week, patterns begin to emerge- some that may address questions you’ve been struggling for years to answer.

I simply make written notes in my journal alongside the rest of my personal scribbling for the day. Other options are to keep a separate health journal (either written or on your computer,) or to use a health tracking app on your smart phone or tablet. (A couple of apps that have been recommended to me include:  ihealth log, and symple – symptom tracker and health diary.)

"entwined" - by Jason Thielke

“entwined” – by Jason Thielke

Soothing the Beast

Allow me to add a few more words in favour of the written word. Apps are convenient, it’s true, and click-clacking one’s thoughts on a computer’s keyboard is easy and fast, but something more happens when you put pen or pencil to paper and let your thoughts flow through your body on to the page. Writing about one’s health often carries a lot of emotional baggage along with it. Guilt, confusion, worry, fear, anger, frustration are all part of the language of my condition. For me, writing by hand, especially when it comes to Lynch Syndrome, is akin to meditation. Once my hopes and fears are set before me, I’m free to address them in brave new ways.

“When you are writing something down with pen and paper, you are stimulating a collection of cells at the base of the brain known as the reticular activating system. The RAS is the filter for all the information your brain needs to process and it gives more attention to what your are currently focusing on. The physical act of writing brings the information to the forefront and triggers your brain to pay close attention.” (from “How Does the Act of Writing Affect your Brain?”)

This is especially true when it comes to dispelling anxiety. A study published by the University of Chicago in 2011 showed that “students who were prone to test anxiety improved their high–stakes test scores by nearly one grade point after they were given 10 minutes to write about what was causing them fear.” Senior researcher Sian Beilock also found  “that pressure–filled situations can deplete a part of the brain’s processing power known as working memory, which is critical to many everyday activities. Working memory is a sort of mental scratch pad that allows people to retrieve and use information relevant to the task at hand. But it is a limited resource, and when worries creep up, the working memory people normally use to succeed becomes overburdened. That can sap the brain power necessary to excel.”

In other words, writing through our worries and concerns leads us to a better state of mind, and as a result, to better lives.

How do you keep track your health?

Notes: This post included ideas and art from the following places…

ihealth log app

Symple – symptom tracker and health diary

How Does the Act of Writing Affect Your Brain? inforgraphic

Writing About Worries Eases Anxiety – University of Chicago

The gorgeous laser etched art of Jason Thielke