Malignant Melanoma: More that Just a Mole

Malignant Melanoma. It’s just a mole. Just a mole, they said, nodding their heads.

Photo by Keith Cartmell

This one was different. It didn’t fit the ABCDE criteria for suspicious moles. My body is covered in hundreds or thousands of moles thanks to my Irish genetics, fair skin that burns before it tans, green eyes and blonde hair.  

This mole wasn’t dark and flat like in the ABCDE posters.  It was dark pink (amelanotic) and raised (nodular). Atypical.

Source: NCI Visuals Online. Skin Cancer Foundation. www.cancer.gov.

The ABCDEs of melanoma skin cancer are:

• Asymmetry. One half doesn't match the appearance of the other half.
• Border irregularity. The edges are ragged, notched, or blurred.
• Colour. The colour (pigmentation) is not uniform. Shades of tan, brown, and black are present. Dashes of red, white, and blue add to a mottled appearance.
• Diameter. The size of the mole is greater than 6 mm (1/4 inch), about the size of a pencil eraser. Any growth of a mole should be evaluated.
• Evolution. There is a change in the size, shape, symptoms (such as itching or tenderness), surface (especially bleeding), or colour of a mole.

ABCDE info from Melanoma Canada, Save Your Skin Foundation, Alberta Health, Canadian Skin Cancer Foundation, Canadian Cancer Society,  Aim at Melanoma, Skin Cancer Foundation. Most sources don’t mention amelanotic moles, which only account for 2-8% of all malignant melanomas, or nodular, which account for only 20% of malignant melanomas and has a worse prognosis. 

PSA: Wear sunscreen my friends. Especially if you run, bike or hike outside. Melanoma is the Most Deadly Skin Cancer, accounting for about 1% of all skin cancer cases, but the vast majority of skin cancer deaths. 

Sunny days back in the day

In my childhood in the 1970's and 1980's I all played outside all day -  in a bikini, wearing 'sun tan lotion' with SPF 4. Gen X here.

source Good Old Days NZ

In 1989 I got badly burned (2nd degree) in Mexico I got blisters on my face and ears and would break out in hives from sitting in the sun for years afterward. 

 

In the late 1980s I went ‘pre-tanning’ using a tanning bed to get a ‘base tan’ so I wouldn’t burn on vacation. From 1990 onward I was told by doctors to ‘go to the gym’ to deal with my depression, which led me to take a step class where one of the instructors used a tanning bed 5 minutes per week to keep her depression at bay - so I did the same.  I eventually got wise but with a family history of various types of skin cancers (though not malignant melanoma), I tried to keep on top of getting my skin checked by dermatologists over the years.  

In 2010 Dr. Healley removed a raised mole from my neck and sent it in for biopsy. Dr. Kershan did a skin check in 2015. Every couple of years I realized I had not been called back to the dermatologist.  When I contacted the dermatologist office they just told me the dermatologist moved, or was on mat leave and that I required a new referral from my family doctor.  All this took time.  I always ask now if I’m responsible for making my own follow-up appointments and put reminders in my phone if I’m supposed to call or if they are supposed to. 

Melanoma #1 in situ on my back

On November 20th 2019, Dr. Burbidge found a small dark irregular mole in the middle of my back and sent it in for biopsy a few days before I left for Germany to celebrate my 50th birthday in December.  I tried not to think about it while waiting for results.  

It came back as melanoma in situ so on January 14th 2020 Dr. Shoimer cut a circle around it and removed it along with a chunk (wide local excision) then sewed it up in a procedure called a Wide Local Excision (WLE) that left a big ugly purple scar where the stitches looked like train tracks.

Since my skin tried to kill me, and 2020 was crazy with turning 50, getting cancer, and being in lockdown, I finally went ahead and got a tattoo. The tattoo my mom discouraged me from getting decades earlier by saying I should imagine what it would look like when I was old and saggy. Well at 50, I AM older and saggier so it's not too hard to imagine. I designed and got my Ironman tattoo, and a cat tattoo underneath the first scar on my back with claws leaving scratch marks, and a few other small ones to start including a black ribbon for Melanoma behind my 'good' ear where I wear my hair short. The scar has now faded to a lighter-than-skin colour.

my first little tattoos at age 50

Then I got more tattoos by Hanna Zemliana and I love them.

front source

back source

Melanoma #2 on my ear at least stage 2b in lockdown 

I had another small pink mole on the back edge of my right earlobe. I flagged it over a year before and multiple doctors dismissed it.  In the past year it tripled in size and became itchy. After my first melanoma, lying to say it was painful, I insisted on another check and they biopsied it just to rule out cancer.

amelanotic nodular malignant melanoma on ear

Lockdown chaos

This was all in early 2020 just as the pandemic lockdown was beginning.  Businesses and hospitals were closed. Everyone was anxious. We worked long overtime hours from home trying to help students get access to their classes online. I developed an acute pain in my neck, back, shoulder, arm, hand, wrist and numbness in my fingers. I got all kinds of treatments including chiro ART, massage, physio, acupuncture, heat, braces, cortisone injections, nerve conduction tests, sports wrap. Nothing helped. I couldn’t hold my phone or a coffee cup or zip up my jeans. My Hubby and Bestie had to help me with everything. I was so depressed from the unbearable pain I didn’t want to be in this world anymore. I ended up with dictation software to use for work instead of typing, and an ergonomic desk, chair, keyboard, and mouse for my home office. I carried on. It was a blur. It was diagnosed as DeQuervain’s Tenosynovitis. Four years later in 2024 the pain is still not gone but I can hold my coffee, grin and bear it.

On February 24, we had just returned from an overseas vacation still with wrist pain and now with a deep cough that lasted more than 12 weeks. The advice from Alberta Health Services at the time was to go to work because I didn’t have a fever. This was before there were any covid tests at all.  I went to work. 

Four days after we got back, I saw Dr. Hawkins at the Dermatology Clinic Derm.ca in Calgary (now at Peak Medical in Okotoks) on February 28th, who did a skin check and a shave biopsy of the mole on my ear and sent it along for biopsy to rule out cancer but it came back positive for metastatic melanoma (cancer). 

On March 2 one of our cats was poisoned from only a couple of licks of prescription-strength Diclofenac cream for the pain in my arm. 

My results came back the same day we were finally able to sadly surrender another one of our cats (who had to be kept in the basement for months with shelters closed to prevent him from attacking the others) on March 20th as ‘at least stage 2b’ with further staging dependent on full removal at a later date as it was deeper than the shave, growing deep into my ear like a carrot (nodular) instead of flat (superficial spreading) on the surface. 

There were a flurry of pre-op questions and online interviews and shuffles with multiple doctors (Dr. Barber, Dr. Guillemand, etc.) some over zoom because in-person appointments were not possible. 

March 25th My hubby Ken had a cough and sore lungs.  I spent the morning wiping door handles down with bleach and designating bathrooms, bedrooms and office spaces for him to self-isolate.  If worried that if I were to get COVID, my surgery would get cancelled. 

March 29 I thought of all of my friends and family who had cancer before me and of their  strength and all they had been through. I asked them to send me a pin, ribbon, band, favourite quote or photo to think of them as I follow in their footsteps and I put together a little treasure chest of all my heroes. I ordered a green sleeve so doctors would know what to do with me if I collapsed in front of them. Resucitate or no? Hubby and I already had wills, power of attorney, and personal directives. Sentimental.

March 30th I had my first appointment at the Tom Baker Cancer Center, which was allowing ‘emergency’ cases like melanoma in spite of lockdown and closures.  I had done a lot of research and came prepared with questions instead of shock.  I wasn’t given a date due to ongoing COVID rescheduled surgeries.

Then sentinel lymph node mapping and dissection (removal) was done with radioactive sugar and blue dye to see if it had spread to my lymph nodes behind my ear and in my neck. None was detected in the three lymph nodes that were removed. 

April 1, I began attending patient support groups online with Melanoma Canada but discontinued because I felt like an imposter for having just surgery for  ‘just a mole’ when other patients were undergoing chemotherapy and immunotherapy and radiation.

Surgery

On April 23, Dr. McKinnon and Dr. Sass took 6mm more depth of melanoma and 2 cm all around it out of my ear like a pizza slice during the main surgery and used skin from my neck behind my ear to reconstruct an earlobe for me. They took skin from behind my ear to use as a skin graft for surgical reconstruction to make me a new earlobe. My household says I don't really don't really need my ears anyway since I never listen anyway.  I only took 3 days off work because it was ‘just’ a mole.  Interestingly, the melanoma was never re-staged and I learned from a recent video that they don’t add up the biopsy and the lesion removed during surgery (1.2mm + 6mm=7.2mm) so it remains ‘at least 2b.’

Surgery went well and I felt pretty good. A little tired, a little nauseous, and a little pain. We stopped on the way home to get some prescriptions filled and headed home to rest knowing there would need to be a second surgery to fix my ear.

I applied antibiotics three times a day where the skin from my neck was grafted on to my ear. I cleaned it with hydrogen peroxide. Don’t do that.

The skin graft died/failed and so did our electric dryer. Around then, we began to be able to drive to a mobile clinic for Covid tests and I began to have a number of surgical revisions beginning in May to loosen the skin that was pulled tight under the loop of the masks we wore everywhere.

before

after

I never did get that ear re-pierced due to disfiguration and scar tissue. I can now embrace the pirate look with a big hoop on one side or the hippie look with some small silver hoops, or nothing.  I wear my hair short on the left side and long on the right asymmetrically.

Followup chaos

In June my new dermatologist Dr. Hawkins’ office moved to Okotoks and I followed her.  She’s worth it.  

June 24th I began allergy testing and desensitization because I couldn’t breathe through my nose and I had constant sinus pain just over the spot on my forehead between my eyes. This becomes important later…

In August I was over the most time-consuming part of the cancer treatment and was told they “got it all” and “not to worry”.  I would have skin checks every 6 months, then every year for 5 years.

DeQuervain’s Tenosynovitis followup

I could finally switch gears to my wrist pain and began seeing a multi-disciplinary sports medicine clinic with a chiropractor Dr. McDonald, a naturopath, medical doctor and got a cortisone injection from Dr. Mullin and referral for an ultrasound and to a neve conduction test with pain management specialist Dr. LeBlond.  Interestingly I think he was telling me I was Autistic without telling me.  He said talked about phenotypes.  These are my notes from the appointment:  

My genetic makeup makes me feel things more intensely.  I can concentrate and remember better than the average person. It’s both a gift and a handicap - you can be very good at what you do up to a point where you overdo it and collapse (burnout).  Just like triathlon where I’m pushed to the breaking point of no return where I just can’t do it anymore.  It’s both a gift and a handicap.  I can be very good up to a point where I overdo it and collapse.  The pain I feel I just feel more intensely than the average person. 80% of his patients based on their questionnaire he finds their test results match. 10% the test results show nerve damage but the patient feels nothing and those are normally diabetic. Another 10% are like me where the questionnaire shows pain but the nerve test does not.

How did I feel when I found out?

Cancer was always one of my biggest fears & nightmares:

1.  Cancer.  I wanted to be a nurse until I read a novel where one of the characters was a patient with cancer.  I was strangely calm about getting cancer. I know so many people who have faced cancer, it wan’t a shock.  Just my turn.  Drama Queen?  Nope.

2.  Drowning.  I no longer have nightmares of sliding into a frozen lake in a car and drowning under the ice. Learning to swim and doing the polar plunge helped me get over that one.

3. Sheltering.  Invisible toxic hazards where we have to shelter inside and make due with what we have. As a kid in the 80’s it was nuclear fallout. In the 2020’s it was COVID.

4.  Money.  Big recession / depression, losing all my money, not being able to retire, living in an 8x8 room and eating cat food. LOL. Drama Queen. I Feel like the governments and banks are doing what they can to prevent people from walking away from their mortgages.

Somehow, in the face of the sh*t storm that was 2020, I felt like we all just had to do our best. There is no other option.

Lessons learned

 

I know that at any time I can have another recurrence anywhere in my body including places that have never seen the sun like under a toenail (like Bob Marley), in my mouth or under my bathing suit.  It’s not just the places where you got sunburned with Melanoma – it’s anywhere on your body inside or out. 

 

Anyone can get cancer. Skin colour, geography, and wealth don’t matter. It’s no longer a dirty word that is equal to a death sentence that we have to whisper “the big C.” 

Health is a precious gift and without it, nothing else matters.  

We have to find the balance between personal enjoyment, freedom and liberty having a few fun drinks on vacation in a sunny place vs taking care of ourselves, taking precautions, eating healthy and staying out of the sun.  Some people completely change their lifestyle.  Others not at all. 

 

50% of us will get some form of Cancer in our lifetime.

There are 4 main kinds of skin cancer.  People tend to blow off “skin cancer” but there are different kinds. Actinic keratosis, squamous cell carcinoma, and basal cell carcinoma are relatively slow growing. Malignant Melanoma accounts for only 1% of skin cancers but it is malignant, sneaky, keeps coming back and is deadly.  

Melanoma on the ear is also rare (only about 1% of melanomas). 

In 2016 new treatments including immunotherapy and gene-targeted therapies became available for Melanoma and I take solace in the knowledge that Alberta recently approved/covered/will pay for a combination that has a very good success rate for patients with advanced (Stage III) and metastatic (Stage IV) Melanoma. 

You can’t blame the patient for their disease:

·         it takes only ONE blistering  sunburn to double a person’s chances of developing melanoma.

·         having used a tanning bed can increase a person’s chances by 75% of developing melanoma.

·         In the 1970’s when I grew up, it was seen as a “healthy glow” and anyone without a tan was teased for being “visible from space white.”  We worked on getting our “base tan” early in the summer to “prevent burning” later and we used SPF 2, 4 or 6 or baby oil.

·         In 1988 during the winter Olympics in Calgary I got a bad second degree (blistering) sunburn from falling asleep after drinking a ‘fun’ drink from a coconut on a boat in Mexico.  The next year, I did a few sessions in a tanning bed to get a “base tan” to prevent a burn when going to Hawaii for the first time. I ‘researched’ and found the difference between UVA and UVA and the ‘literature’ said training beds were safe.

·         In the 2000s I did a few more sessions (just 5 minutes per week) in a tanning bed on the advice of a fitness instructor who was doing the same – to prevent the winter blues and get my “light therapy.”  I actually had clinical depression that needed medication but had been turned away by more doctors than I can remember and told to just “go to the gym.”  There was a stigma at the time. That’s changing. 

·         It wasn’t until 2009 that tanning beds were declared “carcinogenic” by the World Health Organization.

·         Alberta didn’t regulate tanning beds by imposing an age restriction for those under 18 until 2014.

The future is unknown

I continued to get skin checks from my dermatologist and the Tom Baker Cancer Center every 6 months. In November 2023, I mentioned the sinus pain that has been going on since at least 2020 mentioned above and was sent for an MRI, which revealed a lesion in my brain that was "highly concerning for metastasis based on the patient's history of melanoma."

I immediately went on medical leave and began to get my legal, medical and financial affairs and belongings in order to plan for the worst and hope for the best.  I attended a ton of information al webinars, learned more about MAID (Medical Assistance In Dying), read medical studies and journals of treatment protocols.  As part of my mental health cancer treatment and support, I attended Patient support groups and Cancer Coaching hosted by Melanoma Canada, Save Your Skin Foundation's monthly Fireside Chats, and Wellspring Alberta online wellness classes and Money Matters and Return to Work programs have been very helpful and have helped me remain somewhat grounded.  Ongoing EMDR Trauma therapy and mental health counselling from Alberta Health Services have been life changing and have even resulted in a diagnosis of ADHD and CPTSD and confirmation of my lifelong Persistent Depressive Disorder, Generalized Anxiety Disorder, Panic Disorder, and unspecified Binge Eating Disorder which has been validating to know I have been doing my best to cope unsupported for over half a century in spite of dismissal, denial, minimization and gaslighting, trying my best but feeling like it was never good enough.  

You have to "feel it to heal it" and you have to see it, recognize it, and want to work on making changes in order to get better.  I have been so grateful that my ability to read and learn has come back though therapy and for the time off work in order to focus on my healing, learn what boundaries are, determine my own priorities, get on with the business of living my life and stop spending my limited energy on people who call me a Drama Queen, treat me like I'm not good enough, not trying hard enough to meet (their unspoken) expectations. I chose to stop living under the rock of fear, obligation and guilt that was crushing my soul and begin living my life like I only had a short time left to live and I don't regret that.

I'm grateful for the good people in my life: my husband Ken who accepts me exactly as I am.  We are better together. My Bestie Antje who laughs with me - not at me, helps me remember all the things I forget, and is wise beyond her years.  My Best Buddy Keith who encouraged me to take baby steps to a marathon and to use floaties in the pool until I could swim an Ironman. I borrowed his self-confidence and belief that I could do great things until I believed it and could do it myself.  My 'sister' Kan who took me to India in her suitcase because I asked and showed me an alternate reality and appreciation for taking care of each other and women's issues.  My colleagues who see the best in me, and give me meaningful work that is a good match for the talents I didn't know I even had. And to my MIL, FIL, SIL who adopted me as their own family.  We take care of each other. 

In January 2024 when putting my updated legal documents in our locked fire safe, I came across our iA critical illness insurance we bought in 2018.  A Melanoma of 1mm or greater in thickness would trigger this critical illness insurance and pay out $50,000. Mine was 7.2mm. I had to claim it in the first month (in 2020), but as you can see in the chaos of lockdown and other health and life issues, there is no way I would have thought about it then.  I called and iA said to send the claim in with all the supporting medical documentation a section signed by my doctor and a section signed by my employer and a letter from me explaining why I didn't claim immediately.  I provided 15 reasons but the claim was still denied.  Never again do I want to hear 'it was just a mole' or 'they got it all.' It's 2024 it's too late.  This all started in 2019/2020 but it's not over.

A full body PET scan, thyroid ultrasound and repeat MRI in January 2024 indicate "etiology indeterminate / could be metastasis or vascular." More treatment and diagnosis coming up - to be continued...