diagnosed with melanoma: managing treatments, surveillance, and support
being diagnosed with melanoma is no longer the same death sentence it was decades ago because of improved surveillance and treatment options.
8 minute read
treating melanoma is easier than every before, making a diagnosis much less grave.
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melanoma is considered the most dangerous form of skin cancer because of its ability to spread throughout the body quickly. up until roughly 15 years ago, melanoma that metastasized had a significantly poor survival rate of less than five per cent.
that poor outcome gave melanoma the characterization of a “death sentence” in the eyes of those who treat the cancer and those who develop it.
the advancements over the last ten years in both melanoma screening and treatments take credit for the drastically improved survival rates, allowing people who develop melanoma to feel more hopeful for their outcome.
while medical science has changed the way people with melanoma seek and find treatment, navigating your way through the healthcare system after being diagnosed isn’t always easy, especially if you’re diagnosed at a later stage.
dr. maxwell sauder, an onco-dermatologist at the princess margaret cancer centre in toronto, ontario, works with people with all forms of skin conditions and diseases, yet he spends half his time with patients who have skin cancers, including melanoma.
his experience has allowed him to gain unique insight into the changes that the onco-dermatology field has experienced in the last decade, giving him the ability to treat and direct patients with melanoma skin cancers better than ever before.
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“thankfully, with regards to melanoma, we have pretty clear-cut care pathways,” he said.
mary zawadzki, manager of patient programs and education with melanoma canada, has also seen her fair share of people diagnosed with melanoma and knows that while it’s always difficult to hear the words, ‘you have cancer,’ it’s not always as dire as it sounds.
she suggests that people take the time they need to consider the diagnosis and decide which steps to take next, especially considering the varying stages of the disease.
“once you receive the diagnosis, it can be really important to take some time for yourself to kind of let that settle in and really decide for yourself what you need in that moment,” she said. “it can be really important to determine what information is going to be really helpful for you to know at this stage.”
understanding stages and treatment options
gearing up to treat melanoma once it develops is one thing, but the stage at which it’s diagnosed causes significant variations in what people should do next.
“the single most important thing to identify is the depth of the melanoma,” said dr. sauder.
he is referring to how deep within the skin the melanoma tumour is. the deeper the tumour, the greater the likelihood it is to have spread beyond the skin and therefore more complex treatments may be required. melanoma can spread to other areas of the body, such as nearby lymph nodes or other organs.
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when the tumour is less than eight millimetres and non-ulcerated, people diagnosed with melanoma may only have to contend with a local removal of the tumour with adequate margins, which are areas of normal skin around it that are removed to ensure all the cancer cells have been cut out.
the majority of melanoma cases are considered localized and, in those cases, can be simply cut out. the remaining cases will require more in-depth treatment, and a specialist will have to be consulted.
however, dr. sauder notes that when cases are more advanced, people generally move fairly quickly in the system, allowing them to start treatment with innovative therapies sooner.
and with these therapies, even the worst form of melanoma is no longer as bad as it once was.
“(with) invention and advancement of immunotherapy and targeted therapies, we’re now looking at metastatic disease five-year overall survival rates of about 55 to 60 per cent,” dr. sauder said.
for those who develop metastatic disease and have to participate in more advanced treatments, it is crucial to know what’s available and the effects of treatment. however, without adequate preparation, it can be challenging to remember what to ask your healthcare team.
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zawadski suggests taking the time to think about it all, letting it sink in, and preparing for any appointments using good old-fashioned notetaking, especially if you left the appointment with unanswered questions.
“(if) you have a series of questions that were not addressed, it can be important to write those down and get reconnected with that office so that you can receive the correct information and not feel like you are left in the unknown,” she said. “so, there are ways to seek that clarity, and i think that it can be important for you to sort of decide for yourself what exactly it is you need at that time.”
focusing on melanoma surveillance
people who are diagnosed with melanoma, even in the earliest stages, are required to continue to do surveillance to ensure that it doesn’t occur again because, according to dr. sauder, if it can develop once, it can develop again.
after being diagnosed with this form of skin cancer, people should be prepared to stick to a regular schedule of surveillance to ensure that if it does pop up once more, it can be cut out before it spreads.
keeping a watchful eye involves attending full body skin exams and checking for any other signs of systemic cancer every three to six months for the first year following diagnosis. after that, people can go every six to 12 months for two to five years. after the five-year mark, if there’s no recurrence, people can expect to continue with annual exams.
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people should also do their own due diligence after being diagnosed with melanoma to ensure that recurrence doesn’t happen, or if it does, it is caught early enough to be cut out quickly and effectively.
that means being aware of what to look for and conducting at-home exams every month of all the moles and spots on their body. this is also true for people who have not been diagnosed with melanoma.
“people that are high risk, such as individuals with over 100 moles, individuals with lighter skin, individuals with family history of melanoma, people who have ever used indoor tanning booths, even just once, people with a history of blistering sunburns before they were 18—these are the people that i would recommend just do a self-examination,” dr. sauder said. “ideally, maybe once a month or once a quarter. i tell people once a month on the day of their birthday just so that they can remember it.”
it’s also crucial to familiarize yourself with the abcde identification method, which outlines five specific things to look for when identifying possible melanomas: asymmetry, border, colour, diameter, and evolving.
that said, not all melanomas follow the same rules, so zawadski suggests listening to your gut and always advocating for yourself when you feel something is wrong.
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“trust your gut. you know when something is wrong,” she said. “seek support as early as possible, making sure that when you reach out to your healthcare team, you are sharing your concerns in a clear manner. (it’s really about) identifying the lesion of concern and really being clear in where your concerns lie.”
don’t be afraid to seek outside supports
being diagnosed with any cancer can bring about a lot of different emotions and reactions, even if it’s highly treatable, such as stage 0 or 1 melanoma. cancer is so often associated with death that it’s hard to shake the sensation of grave fear.
when dealing with a cancer diagnosis, it’s important to realize that there are other supports available that are outside the realm of diagnosis and treatment. for example, many people develop feelings of depression or anxiety following a melanoma diagnosis. going through treatment for later stages can also have an adverse effect on one’s overall quality of life and wellness.
zawadski suggests seeking out the emotional support that one needs, regardless of what that looks like to them.
dr. sauder tries to be a shoulder for his patients as much as possible, but for whatever he can’t provide, he directs patients to the outside resources he knows are there to deal with everything from providing information on therapies to emotional and mental health support while dealing with a cancer diagnosis.
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“i try and do as much counselling as i can on my own,” he said. “we do have brochures from the canadian dermatology association that are quite good. there’s also great foundations across canada, like save your skin foundation and melanoma canada, and those are really good patient advocacy and patient support groups to direct patients to,” he said.
zawadski, who deals directly with patient support with melanoma canada, is a shining example of one of the frontline workers dr. sauder would direct patients to, showing that clinicians and patient advocacy organizations work together to help those diagnosed with melanoma and other skin cancers.
always advocate for yourself against barriers
after being diagnosed with melanoma, being your own advocate is crucial. the state of healthcare in the country leaves something to be desired, even with compassionate and caring healthcare workers putting their all into their practice. it’s simply because there aren’t always enough medical professionals to go around.
“there’s a shortage of medical dermatologists, certainly in ontario, but as well across canada, there’s about 600 of us practicing dermatologists across canada for a population of approximately 40 million,” dr. sauder said. “so, you do the math of how many people we take care of on a per population basis and the number is quite large. we don’t have the capacity to see every single person.”
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because of that, dermatologists such as dr. sauder rely heavily on primary care physicians, who he says can be “excellent.”
if you have been diagnosed with melanoma and are worried about a repeat lesion but cannot get in to see a dermatologist, it’s essential to speak to your family care physician and push for the proper testing. this is also important for those who have not yet been diagnosed.
“if you see something, say something,” said dr. sauder. “be an advocate for yourself, go to your family doctor and say, ‘i don’t like this mole.’ even if they dismiss it, be persistent and get that mole either assessed by a skin expert like myself or some of my colleagues in dermatology or biopsied by the family doctor or local surgeon.”
regardless of what stage you are at in your cancer journey, it’s always important to put yourself and your care first, even if you cannot get in to see a skin expert right away.
“i think it can be important to be your advocate,” zawadski said. “it’s really making sure that you’re being heard and validated with your journey and really building on that confidence.”
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