Joan’s Story

Whistler, British Columbia

Joan generously shared her story with us in the summer of 2023.

Joan’s journey with melanoma began back in 2006. She had a family history of skin cancer, her father having been diagnosed with non-melanoma skin cancer, a risk factor not a lot of people know about. Reflecting on her experience, Joan stresses that melanomas are not always textbook cases. Her melanoma, she knew, was atypical.

Joan had an unusual spot on her temple. It looked like a small zit that wouldn’t heal. She visited three doctors, each attributing the growth to a simple cyst. “Soak it, put some cream on it, it’ll go away,” they said. Joan admitted that she rarely put her needs and concerns first, so her decision to consult a doctor was something she could only attribute to “angels watching over me.”

Her perseverance led her to a fourth doctor who, albeit reluctantly, referred her for further evaluation.

Joan stressed the importance of recognizing the diversity in melanoma appearances. It’s not always the stereotypical black spot; sometimes, it resembles a small, raised pink mark. In her case, what looked like an inconspicuous zit became the pivot point of her life.

In 2006, amid a painful divorce and caring for her two young children, she embarked on a journey to fight melanoma. Her first biopsy was a turning point. As she recalled, her life expectancy was bluntly reduced to six months, a fact delivered with little consideration for the emotional turmoil it would unleash.

The surgeries, performed in 2007, were grueling and outdated by today’s standards. At that time, the treatment felt more like “cut and paste” surgery; they removed large swaths of her skin, grafted it from other parts of her body, and hoped for the best. The initial results were discouraging, with recurring surgeries and a lack of optimism about the future.

But Joan’s determination didn’t waver. She pursued a surgeon who specialized in Mohs surgery, a procedure done while awake. This operation lasted an exhausting 11 hours, but it marked a significant turning point in her battle against melanoma. The intensive surgery led to substantial improvements in her healing process.

However, despite these surgeries, Joan found herself without an oncologist. She didn’t know much about cancer back then and assumed her situation was normal. She moved to Whistler, started a new job, but never received the expected follow-up care or scans.

Then, in 2009, a regular checkup revealed cervical cancer. Joan’s life was back on the cancer rollercoaster. A full hysterectomy followed, and as she was recovering in a room full of patients, a doctor unexpectantly entered the room and delivered another devastating blow – lung cancer.

Joan was left to process this devastating news alone. Looking back, Joan now knows that without her cervical cancer diagnosis, she never would have learned that her melanoma had metastasized to her lung, since she wasn’t being followed. She now believes that sometimes, one has to endure the storms, believing that there’s something on the other side that justifies their existence. Her cervical cancer is an example of this because it led to the discovery and treatment of her lung metastasis and it was then that she entered the care of Dr. Savage at BC Cancer.

In 2013, she had a lung resection, and then had another spot on her head removed by Dr. Cowan, the Mohs specialist.

In 2015, the cancer spread to her other lung. At this point, a second lung resection was not a viable option. BC Cancer proposed a trial drug that held a glimmer of hope but could also be dangerous. It meant moving to Vancouver, away from her children, to receive a potentially life-threatening treatment. Joan faced an agonizing choice. Her life was a tumultuous blend of battling cancer and other personal challenges. Ultimately, she decided to stay near her children and switched to Dr. Smiljanic at Lionsgate Hospital.

It was Dr. Smiljanic who introduced Joan to Save Your Skin Foundation (SYSF), who then helped her learn about immunotherapy. Her metastasis was closely monitored, and in 2015, she began immunotherapy in Squamish and at Lionsgate Hospital, which allowed her to travel back and forth from Whistler.

The three years of immunotherapy stabilized the metastasis and Joan embraced a semblance of normality during this period. However, a new concern arose, seemingly out of nowhere. Joan discovered hard spots around her breast, and fear of breast cancer loomed large. The examination was an ordeal, requiring her to go through eight painful tests.

Accompanied by a friend, she visited a doctor to discuss her results, fearing the worst. To her surprise and relief, there was no breast cancer. However, the elation was short-lived as the doctor, without a hint of humor, informed her that she had a brain tumor.

The discovery of the brain tumor occurred around 2017, after Joan had been on immunotherapy for three years – immunotherapy isn’t particularly effective against brain tumors due to the brain-blood barrier. Doctors believed it was melanoma.

Joan underwent surgery for the brain tumor, an experience she described as horrific. Unfortunately, the surgery didn’t completely remove the tumor. A second brain surgery was deemed too risky, so the next step was brain radiation.

After Joan’s brain surgery, Dr. Smoljanic suggested an additional immunotherapy drug. However, the cost of this approved trial drug, despite being available for seven years, was exorbitant at $80,000.

Blessed with an incredible support system, Joan received help from SYSF and her daughter, who initiated a Go Fund Me campaign. The community rallied around her, and Kathy Barnard played a vital role in promoting her cause. Joan’s relentless optimism persisted. She believed in the power of hope, even in the face of this new, scarier chapter in her life.

Her treatment continued with a second trial drug and her life seemed to stabilize. Yet in 2019, Joan experienced a seizure, a shocking and unsettling development. Post-radiation, she had no knowledge of the potential for brain swelling or seizures. The emergency responders administered a shot that caused a severe reaction, and Joan lost her memory of the subsequent events. She found herself at VGH, confused and disoriented, with no recollection of her stay there.

The post-seizure period was a challenging one. Joan faced cognitive issues and memory loss. Eventually, she was put on anti-seizure medication, an unwelcome addition that weighed her down and affected her overall health.

Despite this challenge, her brain tumour stabilized and her overall condition remained stable.

In 2023, Joan faced a new challenge as the cancer has, once again, surfaced as a tumour on the chest wall. After a successful resection of this tumour, it was noted that there was still active metastases in her lung.


However, 2024 is a new year and Joan understands that new treatments are available all the time, thanks to the hard work of doctors and researchers and the advocating work of SYSF, giving her continued hope. Joan knows that she is living with cancer, but she is confident in her team and that SYSF will keep her apprised of the leading edge advances in treatment which provides hope for her future.


As she shared her story with us, Joan imparted a profound lesson about perspective. She
emphasized the importance of focusing on the beauty and positivity life has to offer, even in
the face of adversity. Her unwavering faith in God and her belief in the power of goodness and
the strength of individuals working together is a testament to her indomitable spirit. Joan’s
story is a reminder that in the face of life’s most challenging trials, hope, love, and resilience can guide us towards a brighter tomorrow.



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Sean’s Story

Long Island, New York

From March 2016 to September 2016, I was repeatedly visiting doctors to tell them that something was wrong with my body, but I wasn’t being taken seriously. I had blacked out three times in recent months; however, I had been in an accident three or four years prior where I had broken my back and neck, and had to relearn to walk. Every doctor I went to wrote off the blackouts as being post-concussion syndrome from my accident.

This situation came to a head when my local medical facility planned to put me in a psychiatric hold, as I had visited so often without them taking me seriously. I pushed for an MRI, but they refused. I went to my parents’ house, and shortly after I was throwing up, my face was drooping, and my legs wouldn’t work. My Dad took me back to the medical facility, who were annoyed to see me again. I was put into the non-emergency area of the hospital; I asked for a CT Scan, and was refused based on my age. I then had a stroke, during which a golf ball-sized tumour was found in my cerebellum, which had caused a massive hemorrhage. The tumour was late-stage melanoma. When my Dad told me after I regained consciousness, the first thing I was was “okay, we’re gonna fight this thing and we’re gonna beat it.”

I was in Sloan Kettering Hospital for a month, receiving radiation. During this time, the people around me really showered up: my football teammates from high school and college even made a spreadsheet of when they were going to come visit me. While I was receiving radiation, I had the experience of sharing the unit with children, as there was not a separate pediatric unit at the time. As I looked around at these very young, sick kids, I thought: “I’m not gonna sit here and feel sorry for myself. I’ve made every mistake a 31 year old man can make, and these kids haven’t even had a chance to steal a cookie yet.” I decided that whatever happens, happens. I also came across an interview with former American football player Inky Johnson which spoke to me; he was speaking about how it’s not always about you, it’s about the people who come to lift you up. I think that sometimes as a cancer patient or cancer survivor, it gets lost on us that in actuality there are still people around us, and we have a responsibility to them too. So the “it’s not about you” really resonated with me.

After radiation, we tried different chemotherapies and immunotherapies, however these kept causing my liver to crash. While I was in the ICU, I was told that I had a rare complication called lepto meningitis disease where the cancer spreads to your spinal cord fluid, causing the cells to coagulate and compromising your brain functions. I was told I had 12 weeks to live and to get my affairs in order; that was a right hook that sent me to my knees real quick. But, I’m stubborn, and I didn’t want to accept it. However, with some more research and genetic testing, we discovered that I have certain mutations that could be used to my advantage in my treatment plans. The progression of my disease slowed, and in April 2017 I started another infusion in addition to the oral medications I was taking; I responded well to this combination, and my disease went into regression.

At this point, as my health was beginning to improve, I started to get back to life. I began to coach high school football. My sickness held the kids accountable: if a guy showed up late to practice, you’d have someone on the team saying “He was in chemo today, but you’re late? What’s your excuse?” At one of the games, my friend arranged for all of the kids to wear these shirts that said Long Beach Football on the front and Coach Wachter Strong with the melanoma ribbon and the saying “what’s your excuse” on the back. It makes me cry to this day.

I also started dating again and met my wife. When I told my mom about her, she actually said that we were born five houses apart, so she was the first girl I ever hung out with! Within a few months, we moved in together and I started helping her raise her daughter, which has been the biggest blessing. I have done so many cool things, but raising my stepdaughter has been the coolest thing I’ve gotten to do. She’s my best friend.

I decided to go into business and open an independent coffee chain on Long Island, both to show myself I could and to leave my wife and stepdaughter with something just in case. I always tell people that the coolest thing about doing the coffee shop was that it showed me what I still had in the tank because I would go from six o’clock in the morning to one o’clock in the morning working at our three locations. It’s cool to say I got to run a company from a chemo chair. Sometimes people treat cancer patients like they are totally disabled, so that showed me I was still able and that no matter the circumstances I needed to keep living my life.

In the summer of 2021, I got some more scans done and they showed further regression without treatment. So I took my last IV infusion of immunotherapy and got to ring the bell, which was awesome. I was still taking the oral chemo pills, so I wasn’t fully good yet but my scans and spinal taps kept coming out positively so in 2022 I had the option to stop taking the oral chemotherapy. In July 2022, my wife, my stepdaughter, and I were going to see a WWE live event in Connecticut. I absolutely love wrestling, so I rented a limousine for us and got premium tickets. When we were on the way, my phone rang, and I saw the number of the hospital. I didn’t know if I wanted to answer it right then, but I begrudgingly picked it up, and I got a “congratulations. As of right now you are the only documented survival case of this type of cancer.” I was crying happy tears and I got to tell my wife and stepdaughter. It was amazing.

My buddies wanted me to throw a party, but I did feel some survivor’s guilt so I decided to throw a fundraiser for Memorial Sloan Kettering Kids. It was a wrestling fundraiser and one of my friends had this brilliant idea of putting a poll on Facebook, essentially saying “if Sean wrestles, will you donate more money?” I wrestled and it was a big success. Since then, I married my wife and we had our miracle baby. We also hosted another fundraiser where I wrestled in honor of my friend who passed away. It was such a wonderful event, it was twice as big. It was attended by local politicians and the press did an article on me that I put it on my LinkedIn, and from that ESPN found me. From there, I started wrestling a lot more and now we’re working on some amazing stuff. It’s been a crazy ride and I think my story really is a testament to folks that there’s life during and after cancer. To me, without cancer there’s no wrestling and I realize that I have this responsibility to keep spreading awareness and sharing my story. I just hope that if somebody hears my story or sees me wrestle, they’re able to live a little bit fuller, or fight a little bit harder. I’d go down the same road 1000 times again, if it helps one person out.


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Dorothy’s Story

Regina, Saskatchewan

When you read my story, you might think I’m terribly unlucky or lucky—depends how you look at it. I realize that’s an awful pun, since I have metastatic—stage 4—uveal melanoma, which is melanoma that grows inside your eye and has now spread distantly to my liver. It’s a very rare disease, completely different from cutaneous (skin) melanoma, and like many cancers, it tends to be “silent” in that one does not see it or feel it until it is advanced, unless one has regular eye check-ups including a retinal scan. It generally cannot be seen or surgically removed. One also needs to be vigilant in getting regular scans of liver and chest at least, and there is no 5-year danger zone, and no remission if it spreads. It can recur or spread through the blood, and the resulting lesions are often quite tiny. That also means educating people, including medical professionals, about the need for vigilance, and unfortunately that kind of awareness is not widespread, even among doctors. The jury is still very much out on the causes, and since it is rare it often does not get much attention from fundraising groups or pharmaceutical companies. I have lists in my head of all the things I’ve learned throughout the years of living with this disease, as well as all the things educated, caring, well-intentioned people—friends, colleagues, family members—have asked or said that mean tirelessly explaining things. I can also say I’ve learned how inconsistent care and expertise is in our Canadian healthcare, and I’ve been frustrated by barriers between provincial and national care, as well as gaps in funding for patient support. I know if I didn’t have the financial resources and were less privileged in terms of mobility, education, and health coverage in Canada, I’d be in a much more precarious position. I’m also lucky that someone noticed something and referred me; if I had a list, my first hero would be the optometrist, as well as the ophthalmologist, who just happened to be trained in the ocular oncology unit at Princess Margaret Cancer Hospital, the ocular oncologist who has followed me for years now, and the medical oncologist who continues to follow me, despite having way too many patients from across the country! My sons have also been one of the foundations that keep me going, despite dealing with all this while going through the rough years of adolescence and young adulthood.

My story begins in April 2016, when I went to my optometrist in Regina, Saskatchewan, for a check-up; it was only the third or fourth time I’d done this since I moved there in 1993, as I had pretty much 20/20 vision most of my life, and I wanted to get a check-up but make sure it wouldn’t conflict with my work schedule. But as an English professor, much of my teaching involved reading from books or papers in front of a class, and I was finding it a bit more difficult to find pages or focus on the texts; I also was a regular practitioner of yoga and noticed my balance was a little “off.” I was in a yoga class looking at the sign on the door, and then blocking one eye and then the other; my left eye seemed worse. So, there I was going through the routine eye exam, and part of that included photos of the back of the eyes with a big camera. It was only when she looked at the photos, and then sent me back to redo these, that I started wondering what was up; there was a shadow on the edge of my left eye, and she said it was probably a freckle. But she’d refer me to an ophthalmologist on call the next day just to be on the safe side.

The next morning, I went to Dr. Garcia’s office, and he did a full exam that included a huge machine with a light, and then he did an ultrasound. I’d never had an ultrasound of my eyeball, and never even knew something like that was possible! He told me that I had uveal melanoma, and then started listing all the appointments I’d need: I’d have to go to Toronto’s Princess Margaret Cancer Hospital for a full exam, they might have to insert a radiation chip, and I’d also need CT scans of my abdomen and chest to ensure it hadn’t spread to other parts of my body. I was nodding and listening, and then walked out and called my second son—I have three—who was in high school, and asked if he would pick me up from the hospital. I was clearly in shock, and still feel terrible for blurting it out to a teenager on his lunch hour. When I got home I looked it up (of course) on the internet. I called my eldest son, at that time in university at Western in London Ontario, and told him I had to go to Toronto; all the appointments were scheduled very quickly for mid-April, and my first thought was how I’d teach the last week of classes and invigilate final exams. My eldest son met me in Toronto and we spent the next day at PMH undergoing multiple tests and seeing multiple technicians and doctors. Dr. Krema, the ocular oncologist, confirmed that I had uveal melanoma in my left eye, that it was medium to large in depth and diameter, and that I had the option to remove the eye altogether or have vision-preserving brachytherapy—a radiation chip—surgically implanted for a week. He said the survival and recurrence rates were about the same. I had brachytherapy in early May, went through the surgery to place it and then a week later to remove it; it was excruciating, and every day my son had to clean out the eye and apply drops. I learned that the lesion was indeed large—9 mm in height and about 17 in diameter—and located in the choroid but had infiltrated the ciliary body. I knew that there was about 50% chance of metastatic spread, typically to the liver, and if that happened there was no cure. My vision in the left eye, by the way, was about 20/30 at that time. I also learned that sun exposure was not a cause, and that it probably wasn’t hereditary. I went back with all three of my sons in August 2016 to see if the radiation had shrunk the lesion, and it had! I was then told any follow-up bloodwork, ultrasound and chest x-rays for distant spread would be done in Regina.

I traveled to PMH every 3-6 months for checks on potential recurrence, and I also developed retinopathy and macular edema [swelling] as well as radiation-induced glaucoma. The lesion is still there now, but it has shrunk to about 2 mm. I had cataract surgery in 2017, but my vision in that eye decreased further, because of the size and location of the lesion. Today, vision in the left eye is at the point of counting fingers. More exhausting was lobbying for the follow-up in terms of metastasis in Regina, and the communication between provinces was terrible: Dr. Garcia continued to get reports from PMH, but that communication did not go from Regina to PMH. It wasn’t until a year or so later that I had my first MRI in Regina, and the reports and images weren’t shared with PMH.

It was in late 2020 that the routine ultrasound noticed suspicious growth in the liver, so I begged the doctor to send this result to Dr. Krema, who then referred me to Dr. Marcus Butler at PMH. In March of 2021 I went to PMH to have an MRI, and it confirmed two lesions on my liver, and the next part of the challenge began; the lesions were small, so Dr. Butler and the multidisciplinary board reviewed the previous images from Regina and noted that one of them had been there back in 2020, but not caught. The approach was what’s called “watchful waiting,” which meant regular MRIs in Toronto, until the board determined a biopsy could be attempted in October 2021; several samples didn’t manage to catch the lesion, so I went back to watchful waiting until one of the lesions grew and another biopsy was done in June 2022. It confirmed that the lesions were indeed metastasis of uveal melanoma. That news was devastating. Dr. Butler recommended I go on a “new” immunotherapy drug called Tebentesfusp (Kimmtrak) that had just been approved in Canada for compassionate access. I’d have to have at least the first three infusions as an inpatient at PMH, and then they would work on getting these transferred to the cancer clinic in Regina, but I would be the first patient to receive it there.

At that point, of course, not only was I still working as a professor, but I’d taken on the role of Assistant Dean. All three of my sons had entered university—two and now the third in the Toronto area—so going to Toronto was one of the blessings, though admittedly the expense left me with a dilemma in terms of working and getting weekly infusions. Side effects for the first three infusions were difficult, including excruciating itchiness, rash, and peeling skin, as well as fevers and exhaustion. But by the time I was moved to the “chemo daycare” unit at PMH for the fifth dose, it was more manageable, and smooth in terms of side effects—apart from brain fog and fatigue, as well as depigmentation and peeling skin.

I’ve been on these infusions for a year in Toronto, choosing to take advantage of the pandemic move to remote delivery and support from the PMH Lodge to stay where I could walk to the hospital, see more of my family, and know that I was receiving care from one of the top researchers of uveal melanoma in Canada! The nurses giving the IVs each week are also fantastic. Some dear friends in Regina took on the role of watching my house. I continued to work remotely, but with some workplace accommodations in terms of commitments and my energy levels.

I still ruminate on how long that lesion was in my eye, or how long it was growing. The pandemic, my own busy life, family responsibilities made me less vigilant than I might have been. God gave me 20/20 vision, but uveal melanoma rendered me nearly blind in one eye; by the way, my right eye still tests at 20/20, and I can still drive and work, and read thank goodness. I have problems with depth perception and double vision that means more care on stairs, hills, and my days of wearing eye make-up are long gone. But frankly one of the good and bad things about this disease is that many people can’t really tell how serious it is, or what I’m going through. Immunotherapy and new treatments don’t “look” like classic chemotherapy in terms of side effects, and the infusions will continue every week until they don’t seem to be keeping things stable. So far, the lesions have not grown. I am also grateful for the phenomenal care of my medical team. Finally, if it were not for the nudge and financial support of Save Your Skin, especially paying for my airfare to start Kimmtrak, I might have decided just to let the lesions progress for months. It’s tough when your disease is “silent” in that way—by the time symptoms appear, it might be too late to treat. So, I urge people to know that melanoma is not “skin cancer” because melanin is in cells throughout our bodies, and can mutate anywhere; at this point, the causes are still under research, as are new treatments. And, even if your lives are busy with family, careers, financial responsibilities, and everything else, don’t ignore those eye exams; my eyes are such an enormous organ in my life and work, and I frankly never thought I had to worry about them! Cutaneous melanoma can typically be seen and monitored more easily. I have learned much, and there is still even more I do not know—even about the prognosis of metastatic uveal melanoma [MUM] so my groups on social media have also provided support, hope, and information worldwide. If you are interested in contacting me, feel free to request to connect below.


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Courtney’s Story

Winnipeg, Manitoba

My story began May 25, 2020, when I was diagnosed with choroidal melanoma. The only symptom I was experiencing was some blurry vision, so I thought “well ,maybe it’s time for glasses!” So, off to the optometrist I went. He couldn’t figure it out so I went to a specialist and that’s where my journey began. It was seven days after I had gotten engaged, so at what was supposed to be an exciting time of my life I was obviously devastated.

At the initial diagnosis, I don’t think I even heard what the doctor was saying as I was in my own zone thinking “is this really happening?” Thank goodness my now-husband was there to get all the details, as he was more attentive than I was at that moment. I was so scared and the only thing I could say was “am I going to die?” with tears streaming down my face. I don’t think my doctor knew what to say nor do I remember what he said either. At that time my son was 13 years old (he is now turning 16), and that I had to break this news to my parents plus having to explain to my son that I was sick was quite possibly the worst thing ever, as I wasn’t sure how he would react or what his thoughts would be. But he took the news like a champ. I’m not sure if at the time he really understood what was going to happen because of course I surely didn’t. I was terrified, but I kept my head up and did what I had to do.

Once I went back for further testing and whatnot I was more stable in my thinking process and able to grasp everything that was being said to me. I was told it was caught early, which was great to hear. The only crummy part was that treatment was not available in my home Province of Manitoba and my only options were to travel to British Columbia, Ontario, or Alberta. I chose Alberta, as I have family there and just felt more comfortable going there.

Before I knew it I was off to Alberta. Everything happened so fast. So there I was in Dr. Weis’s office in Calgary, Alberta, not really knowing what to expect or what kind of person he would turn out to be.

Dr. Weis turned out to be the best! He is always compassionate and takes time to answer all of my questions. He sure has a way to put a person’s mind at ease and is always forthcoming and helpful. After my first initial visit I was to go home and wait until my surgery date, which was surprisingly booked very quickly, and then back to Alberta I went. The initial plaque insertion for the brachytherapy went great. The aftermath of the removal not so much. I was in so much pain it was unbearable. But with the swift action of nurses and Dr. Weis, my pain went away and I was able to begin healing.

After some bumps in the road, I went for my follow-up back home in Winnipeg and to my surprise the radiation was working and the tumor was beginning to shrink! I wasn’t sure what to think going in for my follow-up, but I sure breathed a sigh of relief coming out of there. I go for yearly scans now and blood work, etc., which always causes an abundance of anxiety but right now everything seems to be going well. It will be three years in May, 2023 since my cancer journey began. I can’t believe how fast time flies. I have my off days but other than that I think I’m doing well. I’ve been told by many that the strength that I have shown throughout is inspiring, which is so wonderful to hear. I guess I have always thought that strong is the only thing I can be (besides a few off days). I’m not ready to leave this world yet. I’m only 36 years old and I have so much life left in me, I don’t plan on going nowhere for a very long time.


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Sue’s Story

North Vancouver, British Columbia

My journey began in 2012, when my esthetician found a black spot on my heel during a pedicure and insisted that I see an MD. I could not see the spot without contortions and when I did look at it, using a mirror, it just looked like a dark rough area of skin on the edge of my heel. It was Christmas, and with all of the busy-ness I delayed seeing a doctor until 2013 when the spot bled. I was diagnosed with a BRAF positive pT4a melanoma on my right heel that had spread to one lymph node in my groin.

I was devastated, frightened, and resigned to an early death. My oncologist told me I would likely succumb to the disease within 5 years. My treatment plan involved excision of the lesion and surrounding tissue, removal of the superficial lymph nodes in my groin and “wait and see”. I did not meet the criteria for any of the drug trials available at the time.

After my initial diagnosis and treatment, my original oncologist, who was a melanoma specialist, retired, and I was moved to another BCCA oncologist whose specialty was hematology. I was followed every 3 months by him for 2 years but did not feel comfortable with the depth of his assessment. In 2015, after my own research, I requested to be moved to a female oncologist at BCCA whose specialty was melanoma. I feel this move saved my life. As a part of my original appointment the new MD did a CT scan and PET scan which revealed my melanoma had metastasized to the lymph nodes in my pelvis and around both kidneys as well as into the bone of my humerus. I was crushed and terrified. My daughter had just announced the arrival of my first grandchild; I wasn’t finished living.

At the time of my original diagnosis in 2013, the immunotherapy medications now available were in the experimental testing stage. However, in 2015 they were being made available by the drug companies for final testing. After discussions of treatment options, my oncologist contacted a company and requested that I be put on Pembrolizumab (Keytruda) on a compassionate basis. Over the next 2 ½ years I received 42 doses of the drug free of charge as a part of the company’s clinical trials. At that time Keytruda was only available in the US at the cost of approximately `$100,000/year. Within a year of taking the drug, the lesions on my kidneys and bone shrunk and disappeared. However, after the initial shrinking, the one in my groin began to grow again. The decision was made to surgically remove the groin lesion in 2017.  I did have minor side effects from the drug, such as vitiligo (loss of pigmentation in patches on my skin, eyelashes, and eyebrows), skin lesions, and flare-ups of my arthritis during this period. Eventually, development of swallowing difficulty for both liquids and solids (dysphagia) required I stop taking the drug. The oncologist was concerned it may also be a drug side effect, as one of the causes of dysphagia is autoimmune disease. I had lost 25lb as I was unable to eat. At that point I was told I was in remission – now referred to as no evidence of disease (NED). Throughout this period, I was supported by my loving family, cherished friends, and a counsellor trained in dealing with cancer patients.

Since 2019, when I stopped taking the drug, I have been followed regularly with CT scans and blood work and have remained NED. My grandson is 6 now and I have cherished every day.

To someone who is facing a new melanoma diagnosis I would say: 1. There is always hope. Treatment options are expanding every year resulting in successful cancer management and life extension. 2. Do your research to understand the disease and current modes of treatment using trusted internet sites. 3. Take advantage of groups such as SYS to provide support and information. 4. Be your own advocate and express concerns if you are not comfortable with your treatment plan. 5. Seek help to deal with the overwhelming emotional toll this disease brings to you and your family.

It has been 10 years since my initial diagnosis. I am still here. Yes, I continue to struggle with dysphagia, but it is being managed. I have watched my grandson grow, hugged and visited my family often, learned how to make pottery, and appreciated the simplicity and joy of day-to-day life. There is always hope.


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Ani’s Story

Chilliwack, British Columbia

I was diagnosed with stage 4 metastatic melanoma when I was 32 years old. When the first tumor was found, my cancer had already metastasized and the primary location was unknown. I had surgery in 2016 to remove the mass, and unfortunately was left with close margins that required radiation.

Soon after, I had scans which showed that the cancer had spread to my liver and lymph nodes and I was treated with Pembrolizumab. Over the next two years I received 25 cycles of Pembrolizumab, had multiple surgeries and more targeted radiation to treat a number of new lesions which presented in my lungs and subcutaneous tissue throughout my body. I suffered mainly from the side effects of the treatments, however was able to resume a relatively normal quality of life through most of this period. I responded to this treatment and eventually had a full response, resulting in a period with no evidence of disease!

Although it was short lived, it was so encouraging to have responded to immunotherapy and I have been optimistic about the advances in melanoma treatment and my chances of survival. My cancer returned months later in 2019 and I was treated with four doses of combination treatment Ipilimumab plus Nivolumab, followed by Nivolumab alone. I had a number of surgeries over the next year and showed some signs of response to treatment. Eventually, my disease progressed and I started my search for alternatives to the approved standard of care. I am currently one year into a clinical trial at Princess Margaret Cancer Center.

I was connected to Save Your Skin Foundation when I was looking into clinical trial options. I had no idea at that time that Kathy and her team at SYSF would become such an important part of my story. Not only has SYSF made the travel to receive treatment possible, but they have become part of my support system. I cannot be more grateful for this organization and the people behind the scenes who make it possible.


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Martin’s Story

West Vancouver, British Columbia

Signs of a brain tumour are easy to ignore. I hate to admit it, but I said that all I needed was a neck massage and new glasses to deal with three weeks of left sided foot drop and numbness and a week or so of stumbling. It was the stumbling that made my wife insist I call my family doctor. My doctor listened to my symptoms on a phone appointment and I had a brain CT three days later. She is so smart; of course, when I described the symptoms to my doctor, it clicked that the ”having to lift one’s foot” is actually “foot drop,” and the odd sensation in the foot is “numbness.” There is a definite progression from an “odd feeling” to a “symptom.”
At the CT, I had an inkling something was wrong by the way the radiologist did not come to say hello after the procedure. Usually, we do a doctor-to-doctor debrief to let colleagues know it is all OK, unless it isn’t. My family doctor came to my home the next day to break the bad news in person. Sitting there in the sunshine with the grandkids playing in the yard listening to her tell me I had a brain tumour was quite the moment.  She left me with some Dexamethasone and Ativan as the mass in the brain was big. It took just four days to get an organic diagnosis. Four days later, I had a CT of my chest and abdomen which found eight other masses. That told us that I was riddled with cancer. Not a good day. Later, we would find another metastasis in my eye when the immunotherapy caused a rare papillitis.
I had a chest biopsy 14 days after the Brain CT and stage 4 melanoma diagnosed within days. There was another instance of that doctor-to-doctor thing: the one who stabbed me (very skillfully) said, as I was recovering from the day surgery, that the tumour looked black and he thought it was melanoma, which was confirmed a day or so later. So, within three weeks of calling my family doctor, I had a pathological diagnosis. I saw my oncologist two weeks later; this was the first glimmer of hope in a bleak month.
There was some back and forth about the brain tumour and I had a distressing visit with a neurosurgeon who showed me the MRI. It looked like a lot of the right side of my brain was swollen and the tumour looked big and deep. Surgery would leave me in a wheelchair. The alternative was provided by the neuro-radio-oncologist: she said I could be treated with the “gamma-knife” which is accurate down to one millimetre, though it would not necessarily cure the brain tumour as it might not get all of it. I realised that talking about cure was overly optimistic and I should go for being able to walk for as long as I can.
Next, the tumour board met, and I got my therapeutic diagnosis seven weeks after presenting to the family doctor. I was going to be treated with gamma knife for the brain tumour and then receive dual immunotherapy. I did also get a liquid biopsy, as my research is in genetics, and I have a friend who does this (though it was done by a different group to keep things straight). Interestingly, a BRAF mutation was seen that was not in the lung biopsy. I had my gamma knife stereotactic radiotherapy 9 weeks after diagnosis, then began to receive the dual immunotherapy just 12 weeks after my first appointment, with a further 25 medical appointments/scans/biopsy/bloods etc. during that time. Three months after starting immunotherapy, the tumours were shrinking and the glimmers of hope became a lot brighter.
Of all of these procedures, the chest biopsy was the most dangerous – the largest of the chest lesions was really deep, so seven inches of steel was put into my chest. This would have been fine, as I was totally numb with local anesthetic, but because I am a doc they kindly let me watch it on the screen. Oh look, there is a huge sword deep in my chest right next to some major blood vessels! I better not move. Definitely a birthday to forget!


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Harvey’s Story

Surrey, British Columbia

My name is Harvey; I am a husband, father, and grandfather from British Columbia. Before my diagnosis with melanoma, my wife and I loved to travel and were active in various sports. In November 2016, my wife noticed a pimple on my back. My GP performed a biopsy and determined the mark was melanoma and within a month I had surgery to remove it. The surgery left an 8-inch scar on my back, but I was happy the spot was gone. Five years later I had a cough; I returned to the doctor and received a PET scan that determined the melanoma had metastasized to my right lung. I underwent major surgery in December 2021 and also started immunotherapy at the cancer clinic in Surrey, BC once a month for a series of 13 treatments. I completed these treatments on December 13, 2022. At this point, a subsequent PET scan has also determined that, although the melanoma has not returned in my lungs, there’s evidence that it may have moved into my adrenal glands. I have another PET scan scheduled in March 2023.

Since my lung surgery in December 2021, melanoma has basically become the complete focus of our lives. The mental health aspect of my journey has been overwhelming on both of us, especially the unknown of this terrible disease. Melanoma is a very serious and sneaky cancer, and it’s important for anyone dealing with it to stay very proactive with your oncologist in order to make them aware of any changes while you are fighting it. I share my story only to help anyone dealing with this tricky cancer.


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Violetta’s Story

Edmonton, Alberta

In my late teens to early twenties, I was healthy. I was in nursing school, I ate well, and I worked out several times a week. I also tanned between two and five times a week: the tanning salon was next to the gym and I had an unlimited pass. I thought I was invincible, so for at least five years I tanned at this frequency without considering the risks of melanoma or any other skin cancer.

The mole that was identified as melanoma in 2009 was one of many that had been on my body for as long as I could remember, but it was on my upper back so I couldn’t see it easily. It was my mom who noticed that it was growing and changing colour. I was so busy with school that the mole wasn’t a priority, though that changed when a lymph node appeared near by right clavicle. I went to the university clinic, where the doctor thought the lymph node was a cyst and and that the mole was normal. I insisted on a referral to a dermatologist, which I am so glad I did, because I was diagnosed with stage III melanoma. The dermatologist told me that my chances of five-year survival were 50%, which was devastating news at 25 years old.

I started ipilimumab on a clinical trial in 2009 as the alternate standard of care, interferon only extended survival by 1 year.  Between 2010 and 2012, I had a sentinel node biopsy that revealed two positive lymph nodes, a radical neck dissection and removal of lymph nodes.  In 2012, I began having migraines. which were due to a golf-ball sized tumour in my right temporal lobe. I  had brain surgery and 5 months later a round of stereotactic radiation. At this point, my diagnosis was stage iv malignant, metastatic melanoma and I developed epilepsy as a side effect of radiation.I had a delayed response to ipilimumab but even before brain surgery my brain tumor was shrinking.— I  celebrated my 10 year “cancerversary” in June 2022!

In several ways, my story highlights the importance of preventative measures. My melanoma likely developed in direct correlation with my use of tanning beds; I might have caught the mole earlier if I had been doing skin checks. After I was diagnosed, I went back to the tanning salon and told the owner I had been diagnosed with melanoma. His response to me was: “my mom had skin cancer. It’s no big deal. It’s like getting over the flu.” It’s clear that individuals who might be using tanning beds are not being looked after by people in the tanning industry, so I encourage people now to be proud of their natural skin.


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Gord’s Story

Edmonton, Alberta

In October 2020, my wife and I were driving home from a Thanksgiving and wedding anniversary trip to Jasper National Park when I felt a pain in my right side.  A week later, the pain persisted, and I saw my doctor for blood work and an ultrasound. This was followed up with a CT scan, which prompted an appointment with my dermatologist and an oncologist in November.  I had already been seeing the dermatologist; in 2014, I had melanoma removed from my shoulder, which had likely developed due to sun burns in my teens and early twenties.

At this appointment, I was told I had stage 4 metastatic melanoma, which had spread to my liver and lungs.  The oncologists discussed immunotherapy treatment with me and it was decided that I would receive ipilimumab + nivolumab. The journey ahead reminded me of the story of David and Goliath— but I knew that with faith, I would stay strong and fight this cancer.

Overall, my first three infusions of the treatment were successful— while I did react to the second dose of treatment, I did not experience other side effects during this period.  However, in December I began to have some facial and swallowing issues, and an MRI discovered that the cancer had also impacted my brain.  I underwent gamma knife surgery which was successful.  However, soon after I began to notice that my near-sighted vision was diminishing, and eventually so did my far-sighted vision, causing me to wear multiple pairs of glasses at a time.  It turns out I was experiencing a rare side effect of immunotherapy, so we paused those treatments.  Into March and April of 2021 my vision wavered and at certain points I was considered legally blind.

In April, I also experienced another pain in my side, much like the first one in October 2020. A CT scan revealed that the tumour in my liver had grown back even larger. At this point they started immunotherapy again, alongside five doses of radiation.  After these five doses, the tumour had thankfully reduced in size again!  My next procedure was in July, when I underwent another gamma knife surgery for a new lesion on the brain.  I then had two eye surgeries in August and September 2021; a consultation with my ophthalmologist had determined that inflammation in my eyes from the immunotherapy had caused my irises to bind to my lenses and also impact my retinas.  These surgeries were successful and I have gained back a large portion of my vision, though unfortunately I am still unable to drive.

At this time (October 2022), I am still continuing immunotherapy treatments. I have stayed positive throughout my cancer journey with no complaints, and I know that with continued faith in God and the love and support of my wife I will continue to fight and win this battle.


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