squamous cell carcinoma

Calling All Non-Melanoma Skin Cancer Patients – Survey 2021

We invite all non-melanoma skin cancer patients having had surgical procedure(s) and/or systemic treatment to take this 10-minute anonymous survey to share their feedback:

The Patient Experience: Surgical and Systemic Treatment of Advanced Basal Cell Carcinoma and Squamous Cell Carcinoma Skin Cancers

Information gathered from this survey will be part of Save Your Skin Foundation’s recommendations to the CADTH Common Drug Review (CDR) and the pan-Canadian Oncology Drug Review (pCODR), and will help us better understand discussions that skin cancer patients have with their surgeons along the treatment continuum.

This survey is now closed.  Thanks to All for their feedback and support.

Stay tuned for the resulting report. 

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SYSF Webinar: Post-ASCO 2021 Update

Post-ASCO 2021 Update with Dr. Hamid: Melanoma, Non-Melanoma Skin Cancers, and Ocular Melanoma

Presented by Dr. Omid Hamid, The Angeles Clinic and Research Institute, Los Angeles, California, this webinar  reviews late breaking news, key takeaways, clinical data and other updates presented at the American Society of Clinical Oncology (ASCO) Annual Meeting that took place in a virtual format in June 2021.

Dr. Hamid shares his key insights into what the landscape of melanoma, non-melanoma skin cancers, and ocular melanoma treatment looks like for the near future.  As Director of the Melanoma Center at The Angeles Clinic and Research Institute, Dr. Omid Hamid works to ensure that patients receive access to the most up-to-date therapeutics, based on molecular pathways of melanoma progression. Dr. Hamid is recognized as one of the preeminent Immuno-Oncologists and melanoma specialists in the world.

Click HERE to view the Presentation Recording on our youTube channel

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Skin Cancer in People of Colour

During Black History Month we want to bring awareness to how skin cancer and melanoma affect the Black community and people of colour.

Skin cancer is less common in people of colour, but when it does occur, it’s often diagnosed at an advanced stage and has a worse prognosis. This can be deadly when the person has melanoma. Treatment for any type of skin cancer can be difficult in the late stages.

About 52% of Black people and 26% of Hispanics find out they have melanoma when it has already spread, compared with 16% of White people.

One study, found an average five-year melanoma survival rate of only 67% in Black people versus 92% in White people.

According to experts, there’s a lower public awareness overall of the risk of skin cancer among people of colour.

Also, from the perspective of health-care providers, there’s often a lower index of suspicion for skin cancer in patients of colour, because the chances of it actually are smaller. So these patients may be less likely to get regular, full-body skin exams.


The warning signs of skin cancer are different in people of colour


In people of colour, skin cancer often develops on parts of the body that get less sun like the soles of the feet, lower legs, and palms, which makes detection more difficult. Up to 60 – 75% of melanoma in people of colour occurs on the palms of the hands, soles of the feet and the nail areas. This cancer may also begin around the anus, or on the genitals.

The risk factors for acral melanomas are not fully understood — acral meaning on the hands and feet — but sun is less likely to be a factor. In melanomas on the whole, UV radiation is certainly a major risk factor, and there are plenty of UV-induced melanomas and squamous cell carcinomas in people of colour, who can have a wide range of complexions, from very fair to very dark. But the proportion of skin cancers that occur in non-sun-exposed sites is greater in darker-skinned populations.

About 50% of basal cell carcinomas (BCCs) are pigmented (meaning brown in color) in darker-skinned patients. If you look at the typical photos of BCCs used in educational materials — most of which focus on fair skin — you’ll see a pink, pearly growth that may or may not be crusted. What you’ll almost never see is an image of a brown, slightly translucent lesion. Yet about half of BCCs in darker-skinned patients are brown, or pigmented, and thus easier to miss.

Check out THIS GUIDE for examples of skin cancer on skin of colour.




The Skin Cancer Foundation,

American Academy of Dermatology Association,


Gloster HM, Neal K. Skin cancer in skin of color. J Am Acad Dermatol 2006; 55:741-60.



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Rare Disease Day is February 29th

Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. February 29, 2020 will be the 13th international Rare Disease Day. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.

What is a Rare Disease?

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world.

1 in 12 Canadians is living with a rare disease.

Rare diseases currently affect 3.5% – 5.9% of the worldwide population.

People living with a rare rare disease need equitable access to diagnosis, treatment and care.



There are several types of rare and dangerous skin cancer. Click on each below to learn more:




Events in Canada

Join five national rare disease organizations at an interactive exhibit to bring visibility to the many ways that living with a rare disease can impact the lives of everyday Canadians.

When: Fri, February, 28th, 8am – 6pm

Where: Sam Pollock Square, within Brookfield Place.

What: This exhibit will highlight the experiences of a number of patients from across the country. Public, patients, caregivers, and policymakers are welcome to explore, interact, and share what makes YOU rare.

The event will be hosted by radio personality and broadcaster Josie Dye, who shares a special connection to Canada’s rare disease community.

For us, our partners, and the approximately 1 in 12 Canadians living with a rare disease, every day is Rare Disease Day.

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A Patient’s Perspective on the World Congress of Melanoma

In October I traveled to Brisbane, Australia to attend the 9th World Congress of Melanoma, a joint meeting with the Society for Melanoma Research.  To be there as a melanoma patient was an incredible honour, and to be there as a representative of Save Your Skin Foundation was even more so.  I have been working with Save Your Skin for over a year; after a couple of years of volunteering as a patient advocate and blogger as I recuperated from my surgeries and treatments, I turned my professional interests into full-time support of this Foundation that does so much for melanoma patients.

Ever since I was diagnosed with metastatic melanoma in 2014, I have been hungry for information about this disease, and I had always wanted to attend this conference – my medical Oncologist can attest to that, as every year I would schedule my appointments with her immediately after the conference so I could grill her about all the latest news.  This year she did not attend, but I did.

It was an incredibly educational and inspiring experience, and I have much to report.  So much so, that I have taken this long to write a blog to update our website, because I have found it to be a great challenge to put into words a summary of all that I learned at the WCM2017.

I will start off by reporting that if, after reading this piece, you still have questions as to specific information you might like to learn more about, please comment below or email me and I can get you details on what you would like to know. 


We can provide you access to watch recordings of many of the sessions I saw in person, plus others that are available on the WCM website.  We will also share this on our social media: should you wish to receive more information than what I am able to summarize in this blog, please reach out and we will provide.

Approximately 1,500 delegates attended this Congress, and they included Medical and Surgical Oncologists, Dermatologists, Skin Specialist-Physicians of varied backgrounds, Researchers, Pharmaceutical Company Reps, General Practitioners, and a smattering of Patient Advocacy Groups (such as SYSF).

At the Opening Ceremonies of the Congress, attendees were given an extensive presentation on the history of melanoma research in Australia and other centres, the epidemiology (the branch of medicine dealing with the incidence and prevalence of disease in large populations and with detection of the source and cause *) of melanoma and non-melanoma skin cancers, and their relation to the carcinogen solar ultra-violet.

It was an interesting account of skin cancer statistics in Australia, and a comparison of melanoma to other skin cancers behaviours, namely their response or reaction to “solar circulating factor.”  In this session I learned that there is a COMPLETE ban of sunbeds in Australia.  I also learned that the Congress was being held in the sunny state of Queensland, Australia, which – sadly – has been dubbed the “melanoma capital of the world.”

As an aside… it was spring-weather cloudy the entire week we were there so there were many jokes throughout the sessions that we were all gathered in the melanoma capital of the world and with no risk of exacerbating any skin cancer what with all the rainy cloudy skies!  There are countless interesting roof and overhead structures all around Brisbane to protect residents from the sun, though that week they served well to protect from the rain.

Also in this address was mentioned the importance of early detection in skin cancer – “delay can be deadly.”  There was discussion of advancement in diagnosis of melanoma in situ, and an update of the efforts of targeted screening for melanoma: targeted screening fails as it only gets a minority of the population – even patients with no risk factors develop melanoma.  Dermatologists and General Practitioners are the real heroes in early recognition, said Dr. Harold Kittler, but also people and their family members are key to prevention and early detection.

Also in this session were introduced the NEW “F and G’s” of the ABCDE’s of skin cancer detection. 

F = Firm and G = Growing.  More on this to come – SYSF is currently updating our materials to reflect the complete ABCDEFG method of skin cancer detection.

I was also pleased to observe an introduction to teledermoscopy and clinical methods including the use of our very own Canadian-invented MoleScope™ – a huge photo of it right up there on the big screen! In the poster displays I also found the published study about MoleScope™ and its use in Canada, for more details please see their website.

Throughout the rest of that day and the next three, I attended sessions which I will list below.  There were so many open for attendance, so I tried my best, but I still didn’t hit all of the ones I would have liked to attend.  I have notes for each, and most are recorded, so enter here the reminder that if you would like more detail on a specific session, please email me any time and I will connect you with the details.  (We are not permitted to post them all openly, plus there are so many we couldn’t possibly fit them all on our website.)

Surgical Oncology: Primary Melanoma Management

Margins of excision, current recommendations and controversies, Follow-up surveillance after wide excision for melanoma, Margins of excision – special situations

Actinic Keratosis: Novel Treatments

New insights into photodynamic therapy

(Note – in a recent meeting with a local Dermatologist I learned that the new and best tool for Derms is photodynamic therapy, but it is not covered in some provinces, namely Ontario)

Treatment of Basal Cell Carcinoma – Successes and Opportunities

Molecular landscape of basal cell carcinoma, Management of side effects of hedgehog inhibitors, Beyond hedgehog pathway inhibitors

Advances in Merkel Cell Carcinoma

Early studies of Merkel cell carcinoma: challenges and progress – Symposium, Doctor Helen Leonard

Immunotherapy for MCC: progress and problems – Symposium, Professor Paul Nghiem

This was a fascinating session to attend, as we got to witness first-hand two clinical research teams meeting each other in person for the first time. Dr. Leonard and Dr. Ngheim have been working together for years, and for the first time got to discuss their wok in person.  More on this here: OncLive SMR Coverage: Immunotherapy Infuses New Hope Into Merkel Cell Carcinoma Care


Surgical Oncology: Management of Stage III Metastatic Melanoma

Update of the results from the Multicentre Selective Lymphadenectomy Trial II, Natural history of patients with a positive sentinel node followed with active surveillance, Experience with neoadjuvant therapy for patients with advanced nodal metastases.

This session was personally interesting – and very moving – for me, as I WAS this brand of patient in 2014.  I have read the “new-found” controversy about the very surgery I had (Complete Lymphadenaectomy), and I have often wondered if I really had to have that terrible and invasive surgery to my right groin.  It was the best-known treatment for stage III melanoma at the time, remove the affected lymph nodes and then treat with interferon (in Canada).

I would have appreciated having the option to avoid complete lymph node dissection in favour of systemic therapy.  Systemic therapy (such as the ipilumumab I did end up receiving on a clinical trial in the adjuvant setting) offers alternative to invasive, costly, painful surgery.

I was riveted watching Dr. Coit present his evidence and very passionate argument on this topic.

This session was all about finding balance between medical and surgical oncology and individualized treatment of stage III melanoma, and it will stay with me for a very long time.


Friday and Saturday sessions included these:

Treatment of Advanced Squamous Cell Carcinoma

Risk classification of cutaneous SCC, Systemic therapy of advanced SCC, New approaches in the treatment of advanced SCC (immunotherapy)

Staging, Surgery and Targeted Therapies for Melanoma

The new AJCC melanoma classification, and Surgery for stage 4 melanoma patients: is it still worthwhile?

Fascinating information in these sessions – in fact, in January 2018 the new melanoma staging guidelines will come into effect.  Watch for SYSF to post a blog then and discuss this topic in more detail. It will also be included in our webinar series for 2018.  It is estimated that 6% of stage III melanoma patients will be up-staged due to the new guidelines.

Sunscreen: Bioavailability and Toxicity

Public health implications of sunscreen use, Sunscreen testing in Australia, Should nanoparticles be used in sunscreens? and, Toxicity of zinc oxide particles in sunscreens: myth or fact?

LOTS more to come from Save Your Skin Foundation on this topic as well.  We will bring light to the controversy over the use of sunscreen and how it is more healthful to use sunscreen to prevent skin cancer, than to not wear sunscreen and be at risk.


Another moving session was one on a topic consistantly discussed by Save Your Skin Foundation:

Patient Support and Survivorship

Melanoma: A clinician’s perspective, Symposium, Dr. Caroline Robert

Melanoma: a patient perspective, Symposium, Leisa Renwick

The survivorship conundrum, Symposium, Fiona Bennett

Living with melanoma – a patient plan, Symposium, Valerie Guild

Roundtable Discussion including our very own collaborator Dr. Reinhard Dummer


Closing sessions detailed the following:

Future Perspectives and Congress Highlights

Keynote Address: Unsolved questions in melanoma genesis, Genetic testing for skin cancer in 2017 and beyond, Highlights in melanoma from 2017.

It was an honour to see in person the likes of top melanoma researchers and clinicians such as Dr. Axel Hauschild,  Prof. Georgina Long from Society of Melanoma Research, and many other leading physicians in the field.

Some of the highlighted sessions were expanded upon with coverage from the below publication, please feel free to click this link for more articles: OncLive Coverage of SMR 2017

Following the closing sessions of the World Congress of Melanoma I worked with the Global Coalition for Melanoma Patient Advocacy for an additional day and a half, on initiatives that will be supportive of the melanoma patient population around in the world in 2018.  More to come on that!

For more information on anything you have read here, please feel free to contact

And a generous thanks to our sponsors ~ Funding for my travel to and attendance at the WCM2017 was provided in part by the generous funders of Global Coalition for Melanoma Patient Advocacy, Melanoma Research Foundation, and Save Your Skin Foundation.  My deep gratitude for the opportunity to attend this event is echoed by my dedication to the patients who need the information I learned.
Thank you!


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