The grueling ten-month journey into Ontario’s healthcare bureaucracy to get a melanoma removed from a woman’s neck.
By Richard Pietro, Lead Writer, Skinopathy Inc. Thursday, February 12, 2021
March to August 2020
Deborah notices a bump on her neck, but due to the pandemic and incessant delays, she is finally able to see her family doctor in the summer. Deborah’s doctor refers her to a dermatologist.
Dermatologist removes the bump and informs Deborah there’s a 50% chance it is melanoma, the deadliest form for skin cancer. The bump is sent to be biopsied.
Early December 2020
Results are in and confirm an invasive form of nodular melanoma that needs an immediate lymphoscintigraphy and surgery. She is referred to her local hospital who is unable to confirm whether she has been registered as a cancer patient. Deborah then calls her uncle, a cardiologist in Toronto, to see if he can help.
Mid December 2020
Her uncle connects Deborah with Dr. Colin Hong, a Toronto-based surgeon, who arranges for a CT Scan (in lieu of lymphoscintigraphy since that may take too long) and other standard tests; A pre-surgery consultation; And surgery in Toronto, approximately 5 hours away.
Deborah has pre-lymphoscintigraphy consult with her local doctor. Once procedure takes place it will confirm the CT scan findings.
Late December 2020
How a tiny, little, bump led to a hand-sized surgery.
Editor’s note: Deborah has asked we do not publish her last name, show her full face, or use the name of her doctors (except Dr. Colin Hong) for privacy reasons.
The origin story of any skin cancer diagnosis typically begins like this:
“Hmph. I wonder what that is?” and is usually followed by “Do you think I should get it checked out?”
And that is exactly how Deborah’s story with melanoma, the deadliest form of skin cancer, began. A conspicuous bump on her neck that was dismissed just as quickly as it was insignificant in size. Afterall, people should not panic over every little defect on their body, otherwise hospital emergency rooms would be filled up to the gills.
Unfortunately, some skin cancers – like melanoma – are like icebergs. What you see is incomparable to what lies beneath the surface. Unlike other skin cancers, like basal cell carcinoma which spreads locally on the skin surface, melanomas may grow deep INTO the skin and beyond, wreaking havoc on the internal workings of the body.
Luckily for Deborah has a healthy respect for the vagaries of the human body and a sixth sense about her overall health. That is why she took steps to have this tiny bump checked out by her family physician.
There was just one problem. She noticed the bump a couple of weeks after the March 2020 lockdown. And as we remember vividly, not only did every non-essential business shutdown, but healthcare facilities were limited to patients with the most critical conditions.
So, as a society, we bunkered down and performed our civic duty. Meanwhile, Deborah’s undiagnosed melanoma festered, unabated, mere centimetres away from her carotid artery and lymph nodes.
At the time there seemed to be no reasons to rush to the hospital and risk contracting the coronavirus. That is why Deborah decided to wait until her annual check-up on May 11 and have her bump checked out at the same time. She assumed, like we all did, that the lockdown would be lifted by then.
It was not.
from the Coronavirus
The continued lockdown forced her May 11 annual check-up to be rescheduled to July 27, approximately four months after she first noticed the bump. Fortunately, Deborah (and her husband) had not noticed any visible changes, which was perhaps the only comforting thought as these constant delays kept her from a diagnosis.
Again, the pandemic threw a monkey wrench into her affairs. One week leading to her appointment, Deborah received a call from her doctor’s office saying they would prefer conducting her annual check-up via a virtual conference. Since Deborah also wanted her doctor to have a closer look at the bump, it seemed like an in-person consultation was warranted, if for no other reason than to ease her mind. Her doctor’s office accommodated the request and rescheduled her appointment, yet again, this time to August 4.
It is important to note that Deborah’s family physician had recently retired, and Deborah was developing a relationship with a new doctor. This may seem like a trivial detail, but the bond formed between a patient and doctor goes well beyond what can be found on a chart and can take a long time to form. And sometimes, through no fault of anyone, things can be missed during this process.
Continuing with the story…
Deborah’s new doctor did not seem overly concerned, but still prescribed anti-inflammatory medication and referred her to a dermatologist. The earliest available appointment was on November 26, another 4 months later.
Yes. That is a long time. And that is the situation with healthcare in Ontario, pandemic or not. Unless it is an emergency with a clear and present danger to life, seeing a specialist can take a while.
“That is how it works, right?” Deborah says. “In Ontario, those in need of medical care are triaged based on priority, and the fact [that] I was not a priority provided some comfort.”
But that all changed in early November.
and a lackadaisical attitude
A small sore appeared on the bump. It was dry and featured a crusty gap in the middle. Slowly, alarm bells began to ring. This bump started as something so innocuous and harmless back in the Spring, but this new development coupled with the incessant delays now dark clouds of uncertainty were now looming in Deborah’s mind.
“It felt like I was stuck in limbo,” says Deborah. “I felt totally helpless while staring at the thing that was possibly killing me in the mirror every day of the week.”
The holidays were fast approaching, yet it seemed like time was crawling by. Those three weeks leading up to the appointment with the dermatologist were intolerable. It had now been close to nine months since she first noticed the bump and this process had taken longer than she had first anticipated.
Deborah’s November 26 appointment with the dermatologist finally arrived and three things happened on that day:
- The dermatologist removed the bump and arranged for a biopsy.
- A follow-up was scheduled on December 3, one week later, where she would get the results.
- She was told that there was a 50% chance that it was cancerous.
Her heart sank. Those are not the odds you want to hear from your doctor.
So, she spent the following week doing what we would all do: She went online and did some research. What she learned was that melanoma is the deadliest form of skin cancer, but also has a very high survival rate if caught early.
“That phrase was like death sentence,” says Deborah. “Everything was working against me even though I tried my best to get it resolved early.”
Her fear then turned to anger towards her doctors. Why had she not been prioritized? Why is the Ontario healthcare system so rife with delays? Why did the Ontario Government have to bungle the response to the pandemic and cause even more delays? And, eventually, she got mad at herself for not pushing harder to see a doctor.
And that is the quintessential origin story of any skin cancer diagnosis: Delays, misunderstandings, and a lackadaisical attitude.
“Skin cancer does not have the caché other cancers have,” says Dr. Colin Hong, a Plastic & Reconstructive Surgeon in Ontario and co-founder of Skinopathy.com. “For example, both breast and colon cancer have large and active communities who work tirelessly to organize awareness campaigns year-round, meanwhile one in every three cancers diagnosed worldwide is skin cancer.”
Most people are shocked when they learn skin cancer cases outnumber lung, breast, prostate, and colon cancers combined or that the economic burden of skin and subcutaneous tissue disease was 2 Billion Dollars in 2010 in Canada. A 2017 research paper even suggested the presence of a skin cancer epidemic amongst the elderly population.
While skin cancer is not as deadly or as resource intensive as other cancers, it can still cause great pain as well as infections, which in-and-of themselves can profoundly affect a person’s quality of life. Typically, the most adverse effect is disfigurement. Since most skin cancers present on the face, neck, or hands, the cancers themselves can be unsettling to look at and surgical procedures can lead to scarring.
And this is where we find Deborah. Ruminating about her potential future as a 40-year-old mother of four; With a potential melanoma on her neck; Who is patiently waiting for the results of her biopsy.
Bureaucracy run amok
December 3 finally arrived, and Deborah is bracing herself to hear the results of her biopsy.
The dermatologist tells her she has an invasive form of nodular melanoma and the cancer was already in stage 3. She needs an immediate scan and surgery to remove the melanoma.
For the uninitiated, there are only 4 stages to melanoma and Deborah may not have long to live.
“This was the scariest moment of my life,” says Deborah. “For months I had been hoping for the best, and now I am literally being told the worst. Suddenly I am making plans for my own funeral. These are not things that a 40-year-old should be doing.”
The first step was to be admitted as a cancer patient at a local hospital to conduct a lymphoscintigraphy scan – a procedure where radioactive dye is injected into cancerous lesion which highlights the lymphatic tissue to determine where the tumour could spread. This would provide doctors with vital and necessary information prior to surgery.
And, unfortunately, at the lowest moment in her life, the bureaucracy of the healthcare system decided to add salt to the skin cancer wound. Below is the typical process to being admitted at a cancer ward:
- Doctor sends a fax referral to the cancer ward.
- Cancer ward processes the new patient registration.
- Patient is admitted and a patient file is opened.
Seems simple, right? Not always.
Turns out bureaucratic oversights are not uncommon and mistakes do happen. Like, for example, a fax not finding itself onto an admin’s desk. Which is why her dermatologist advised Deborah to call the hospital regularly to confirm her registration status and make sure she did not slip through the cracks.
Her first follow-up phone call with the hospital was a few days later, on December 7. This is what she was told:
- No, you are not in the system.
- No, we cannot confirm or disconfirm that we have received the fax referral.
- No, we do not know when you will be officially admitted because there is a long line of new patients that need to be registered.
It was a cold and emotionless customer-service-like conversation, not unlike the ones we have with our cable and internet providers. Her life was at the mercy of how quickly hospital admin staff could process a stack of new patient referrals. She could not even confirm whether they received the fax referral or not. It seemed like some perverse joke was being played on her. Her own personal Catch 22 where she can only find out if she is admitted only after she is processed but cannot find out if she is even in the queue to be admitted.
For months she let the system control her health, but now that she knew the stakes, she decided to take control of her health. She kept calling her local hospital but also started making other plans in case more clerical obstacles presented themselves.
“I have an uncle who is a cardiologist in Toronto,” Deborah says. “So, I asked him if he knew anyone who could help me.”
It might be strange to suggest that not everyone is as fortunate as Deborah considering her situation, but, as is usually the case, knowing someone on the inside can help grease the wheels. Even when it comes to healthcare.
Her uncle immediately reached out to Dr. Hong, a colleague of his, to see if he could provide other options.
Now, Dr. Hong is not only an experienced surgeon, but he is also the Past President of the Ontario Medical Association, Plastic Surgery Section, and current Chief of Plastic Surgery for EMAS, a charitable organization that provides medical and dental care to under-serviced areas throughout the World. In other words, he is well connected and has deeply rooted tendencies towards humanitarianism.
Whenever he can, he helps. And even though he did not know Deborah personally, he gathered Deborah’s lab reports and photos of the lesion and reached out to his network.
Deborah’s luck was finally turning. While Dr. Hong was not able to arrange for a lymphoscintigraphy, he was able to schedule her for a CT Scan on December 13; Scheduled her for a pre-surgery consult on December 15; And arranged for a chest X-ray and bloodwork.
He did all this within 24 hours.
Even though these appointments would all take place in the Greater Toronto Area, approximately a five-hour drive away, Deborah was happy that proactive steps were finally being taken to remove the ticking time bomb from her neck.
Call it Karma. Call it Divine Intervention. Call it what you will, but on December 15th Deborah’s luck kicked into hyperdrive.
First, Dr. Hong told her that the CT Scan showed no sign of an enlarged lymph node, which meant it is less likely that the cancer had spread. Then she got word from her husband that she had been admitted by her local hospital for a lymphoscintigraphy. Finally, at Deborah’s request, Dr. Hong also agreed to perform the surgery before Christmas as to avoid any potential further delays due to the incoming Ontario post-holiday lockdown.
The operation took place as scheduled, on December 22, and even though Deborah’s bump was only two centimetres in diametre, it still required an excision approximately the size of a hand. You are not reading that wrong. Dr. Hong removed a patch of skin that big from Deborah’s neck.
He then arranged a biopsy to confirm the presence of any cancerous tissue. Findings were once again negative.
You know that feeling you have when you need to go to the bathroom REAL bad? And you have to hold it for a long time? And when you finally go and that overwhelming sense of relief brushes over your whole body? Multiply that by 1,000.
“My life was finally being restored!” says Deborah. “I was on the brink of losing everything. My family, my friends, and now, instead of being an outcast with a countdown clock hanging above my head, I felt part of society once again.”
Months of anguish, pain, and stress were swept away in a matter of seconds. The sterile air of the doctor’s office suddenly smelled like freshly baked cookies. The sound of nurses working in the background were strangely lyrical and melodious. Her chair even seemed softer.
Dr. Hong suggested – since she was admitted at her local hospital – that she go through with her lymphoscintigraphy and continue her follow-ups back home. After months of waiting, everything was finally pointing in the right direction.
Deborah is back home waiting for her lymphoscintigraphy and is not completely out of the woods. Due to the deep thickness of the initial tumor, Deborah will always have to face the possibility of spread of skin cancer in in the future.
For the rest of her life Deborah will need to be doubly vigilant and take extra precautions when going out into the sun.
This story is not meant to be an indictment against the Canadian Healthcare System, nor is it a passive aggressive attempt at promoting a political ideology on how to administer healthcare (although I am sure many will view it that way).
This story is meant to do demonstrate how something as small as a two centimetre bump can turn a person’s life upside down.
Just like many other cancers, skin cancer sneaks up on you. You do not expect it. But, unlike other cancers, you can see cancerous skin tissue growing and changing. And, perhaps most importantly, you can take steps before it is too late.
I chose to pepper this article with facts, stats, and notes about the realities of skin cancer to impress upon you the prevalence and consequences of skin cancer. Simply said, skin cancer is no joke.
To further illustrate my point, the World Health Organization classified tanning beds in its Class 1 of cancer-causing agents, right next to cigarettes and plutonium. The United States Skin Cancer Foundation even states that more people will develop skin cancer because of indoor tanning than develop lung cancer because of smoking.
I want to thank Deborah for allowing me, a stranger, to enter her life and publish a very sensitive story. I had to ask her many personal questions that required her to revisit tough times and tough decisions. Throughout the process she exemplified the bravery and tenacity that only comes from a cancer survivor.
She chose to share her story to the World as a cautionary tale about the very real dangers of skin cancer. Please heed her words wisely.
Visit www.getskinhelp.com today and have your suspicious moles or bumps checked out virtually.
Share this story and help us raise awareness about skin cancer.