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skin cancer

Virtual Trivia Night

4pm – 5:30pm PT | 7pm – 8:30pm ET

As part of Melanoma and Skin Cancer Awareness Month, we’re hosting a Virtual Trivia Night to celebrate and bring together patients, caregivers, health care providers, and advocates.

This event is an opportunity for us to come together, have some fun, and celebrate our shared dedication to the fight against skin cancer, melanoma, and ocular melanoma. It’s a chance to connect with others in the community, put your knowledge to the test, and win some great prizes.

Register as an individual. We will assign the teams, but will keep family/friends together as much as possible. Single players welcome! Tickets are $10 per person.

Prizes will be awarded to the top teams!

Register here 

The Trivia Night will take place virtually on Zoom. It will be hosted by SYSF staff and will include 8 rounds on different topics and will require participation from each registrant. The host will ask questions to each team alternately and teams will be given a bit of time to discuss before submitting their final answer.

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Meet The New Canadian UPF 50+ Protective Beachwear Line – KRABĒO

About The Founder of KRABĒO

In November 2021, I was told for the second time that I had cancer. This is not something one gets used to hearing, and at that moment I felt like another bomb went off in my life and my husband’s.

This diagnoses was followed by a series of tests that started from the end of November up to the 2021 holiday season. The reason for this was to gain an understanding of this possible recurrence all these years later.

Over 17 years ago, I had a beauty mark on my back that itched like a mosquito bite, which I thought was odd. That was back when tanning salons were a trend and I would visit them several times a week to do something about my “milky white” complexion. At this time, I felt I needed those sessions to look more “healthy”. I even had a membership at a local tanning salon! One day, just before settling in for a session, I discussed my beauty mark with the owner who urged me to get it checked out, which I did a few weeks later.

In creating KRABĒO, I find myself with peace of mind. Peace of mind for myself, my family and for you.

Marie-Ève Richard

I was 24 when it first happened and honestly, I felt I was above it until a lymph node surfaced in September 2021. It was then that I noticed a small lump in my right groin that many doctors thought was harmless, but I had a feeling that it was not benign.

I had to persist with the healthcare system to go further and do more tests in order to find out what was wrong. When you have a feeling that something is wrong, you need to advocate for yourself & ask questions. In my case, I was indeed wrong. The doctors discovered after an ultrasound that it was melanoma. This was quite a shock & a return to square one.

I hesitated to tell my story when all of this happened, even to my kids, but I would come to understand the importance of sharing one’s life experiences. No matter if it’s good or bad because doing so can help others.

My story may be your story too! It made me realize the great lack of resources and knowledge about this disease and how to adequately protect myself from the sun. It’s because of what I went through that I decided to help the people around me and the population by developing a line of UV-protective beachwear. Our beachwear is certified and recognized by the highest world standards of sun protection and it covers 98% of UVA and UVB rays. KRABĒO was born from this desire and is made entirely made in Quebec with love. Now, whenever I see my clothing worn by people from all walks of life, including children, my heart swells at the idea that I was able to do my part in the fight against this preventable cancer that has cases increasing with each passing year.

In creating KRABĒO, I find myself with peace of mind. Peace of mind for myself, my family and for you.

About KRABĒO

At KRABĒO, we believe that the sun, the water and the beach are together a source of well-being. To take full advantage of it all, one thing is essential: sun protection. We love to enjoy the sun. The benefits it brings to our lives are of course impossible to ignore. We tend, however, to forget the risks related to UV rays.

We can’t say it enough: ultraviolet rays from the sun lead to premature ageing, the appearance of skin blemishes, as well as skin cancer, which represents a full third of the most widespread cancers in the world.
For us, skin protection in all of its aspects lies at the very centre of every one of our decisions; indeed, it is our guiding principle.

Our laboratory-tested fabrics are certified UPF 50+ and block 98% of UVA and UVB rays, without any toxic products involved, neither for the skin nor for the planet.

They have been carefully chosen to meet two criteria: protecting our skin and preserving the oceans.

KRABĒO has generously offered a special 10% discount to all Save Your Skin Foundation newsletter subscribers. The code will be available in our May newsletter so hurry up and subscribe if you haven’t already!

All Collections

Children’s Collection

New Arrivals

Their dedication to the cause

KRABĒO is committed to helping others. That’s why the KRABĒO community lends its hand to those suffering from skin cancer by supporting the Save Your Skin Foundation and donating a portion of its profits to the cause!

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Welcoming MorrisonRowe – A New Canadian UV Protective Clothing Brand

MorrisonRowe is an EVERYday sun protection clothing company based in Calgary, Alberta. MorrisonRowe was founded by long-time friends Cara and Tegan after Cara was diagnosed with multiple basal cell carcinomas. Her dermatologist recommended that she cover up as much as possible and wear sun protective clothing when outside. She found lots of options for the beach or sport specific activities but struggled to find casual, everyday UPF 50+ clothing. She didn’t want to look or feel like she was headed to the beach while she was out for daily activities such as going to the park with her kids, walking the dog, or sitting on a patio with friends.

Cara and Tegan could not ignore this HUGE gap in the market and the need for casual everyday UPF 50+ sun protection clothing. What started as a need, turned into a business idea and Cara and Tegan embarked on the journey to launch their own UPF 50+ sun protection clothing brand.

Prior to starting MorrisonRowe Cara worked as a registered nurse in surgical oncology and Tegan  a professional engineer. Neither had any previous fashion industry experience so it was quite a journey to build the brand from scratch.

Our mission is to make sun protection clothing part of your everyday wardrobe so you can grab something from your closet and know that no matter where the day takes you, sun protection is there. We have combined timeless style and everyday comfort with UPF 50+ protection so you don’t have to choose between looking great, feeling good, and protecting your skin.

Cara and Tegan

Cara and Tegan had some guiding principles for the brand; they wanted all of their clothes to be rated UPF 50+, they wanted to be a Canadian brand, and they wanted their clothes to be sustainably sourced and ethically made.

In terms of the actual clothing, Cara and Tegan had specific design concepts and fabric preferences. To them “everyday” means clothes that are timeless, casual and relaxed. Something that you will reach for any and EVERY day. For the fabrics, Cara and Tegan wanted natural fiber fabrics like Tencel™, hemp, and organic cotton because they offer superior breathability, feel great on your skin, and their production is generally more sustainable. This fabric preference is a definite departure from most available UPF 50+ clothing.

Finding fabrics proved to be one of the biggest challenges on the journey to launching MorrisonRowe. (Other than the pandemic and raising young children of course). Cara and Tegan searched tirelessly to find sustainable and ethically made, natural and recycled fabrics that were UPF 50+. Most fabric manufacturers Cara and Tegan contacted had minimal or no experience with UPF testing and rating, especially when it came to using natural fiber fabrics.

They knew that natural fiber fabrics with UPF 50+ ratings existed but sourcing them proved to be a challenge. They quickly learned that if they wanted to use natural fiber fabrics they would have to send them for testing and rating themselves. Fabrics were chosen based on what Cara and Tegan wanted in terms of how they feel, the composition, the garment design, and sustainability and then sent for basic UPF testing. If the result came back below UPF 50, Cara and Tegan were back to square one. This happened a few times before they found the right fabrics.

All MorrisonRowe fabrics are independently third party tested and rated at a lab in Quebec according to industry standards (ASTM D6544 and AATCC 183) to ensure every colour is UPF 50+. MorrisonRowe fabrics are all free of any chemical treatments to make them UPF 50+.  Rather, the natural characteristics of the fibers, the structure of the fabric, and the colour is what makes the fabric UPF 50+.

All MorrisonRowe clothes are designed and manufactured in Canada. Cara and Tegan have worked with a local Calgary designer, Ereau Designs, from the beginning. And manufactured solely in Calgary until recently moving manufacturing to Vancouver. They have styles for women, men, and children and are continuing to expand their catalogue.

MorrisonRowe has generously offered a special 10% discount to all Save Your Skin Foundation newsletter subscribers. The code will be available in our May newsletter so hurry up and subscribe if you haven’t already!

Women’s Collection

Men’s Collection

Junior Collection

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Skin of Colour: Skin Cancer Image Sources

There is a distinct lack of racial diversity in medical images of skin conditions.

To address this gap, we have been working with a medical student to help collate resources that depict skin cancer, and other skin conditions, in people of colour.

We are very pleased to finally have the resource complete and ready to share with you. Click the button or click on the image below to expand.

Prepared By: Rebecca Lena MD (C)

University of Toronto Faculty of Medicine

Version: 01/03/23

The following citation is recommended: Lena, Rebecca. Skin of Colour Skin Cancer Image Sources. Save Your Skin Foundation. January 2023, https://saveyourskin.ca/wp-content/uploads/Skin-of-Color-Skin-Cancer-Image-Sources.pdf. [Day Month Year of access].

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Patient Reported Experience Measures: 2022 Highlights!

In 2022, Save Your Skin Foundation ran three major patient surveys in order to collect patient-reported experience measure data (PREMs): 

  • “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma” (April/May)
  •  “The Patient Experience: Treatment of Patients with Ocular Melanoma” (April/May)
  • “Patient Survey: Treatment Plan Decision-Making” (September/October)

Long-form reporting of the data for “The Patient Experience: Treatment of Patients with Ocular Melanoma” and “Patient Survey: Treatment Plan Decision-Making” are available on the Save Your Skin website. “Treatment Plan Decision-Making” was available in both English and French, and was developed in partnership with AIM at Melanoma. The following blog highlights some particularly notable outcomes from these surveys; we hope you find something of interest to you!

 

Highlights from “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma”
  • When asked if they would consider it reasonable to receive additional treatments should their melanoma recur at a later stage, 78.26% directly indicated that they would be interested in additional treatments (Q12).
  • When asked specifically about their experiences on Pembrolizumab (Keytruda™), 73.68% reported enduring fatigue as a side effect, followed in frequency of votes by skin rashes (36.84%) and cognitive impairment (26.32%) (Q17). 61.11% found these side effects manageable (Q18).
  • 95.45% of participants indicated that the side effects resulting from this therapy were worth it for the benefits of the treatment (Q19).
  • When asked if they would consider receiving drug therapy from a clinical trial, 77.27% responded that they would, should the need arise. Of the 22.73% that responded “not sure,” several added comments indicating that they would consider it, but would need more information (Q22).

 

Highlights from “The Patient Experience: Treatment of Patients with Ocular Melanoma”
  • 63.63% of our ocular melanoma survey participant pool who have not received genetic testing would like to, suggesting that many patients see this as a worthwhile process (Question 11).
  • Unsurprisingly, eye-related side effects are the most common for patients with ocular melanoma. These include loss of vision (64.51% of responses), eye pain (16.12%), cataracts (9.67%), flashes of light in the eyes (12.9%), dry eyes (3.22%), macular edema (3.22%), and retinopathy (3.22%) (Q16).
  • 82.35% of participants have ongoing follow up appointments/testing every 3-6 months (Q20).
  • 79.31% of responses suggested that if their disease were to progress in the future, they would be interested in receiving additional treatments (Q21).
  • 64.71% of survey participants indicated that if they were offered enrolment in a clinical trial, they would take it (Q24).
  • The most frequently cited side effects by participants receiving KIMMTRAK ® (tebentafusp-tebn) for their ocular melanoma were fatigue and skin rashes (both selected by 50% of participants) (Q28).
  • 100% of patients who received KIMMTRAK ® (tebentafusp-tebn) noted that the side effects of this treatment were worth enduring for the survival benefit (Q30)
  • The most frequently cited barrier to accessing KIMMTRAK ® (tebentafusp-tebn) was having to travel to another city, which was both an inconvenience and a financial hardship (Q31).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” English language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “prognosis” as their primary concern, followed by “treatment timeline” and then “care plan.” That “quality of life” and “financial considerations” are the lowest priorities suggests that patients care about survival above all else (Q7).
  • Questions nine and ten demonstrated that patients are creating a treatment plan with their healthcare team along their ideal timeline, which is either at the time of diagnosis or between their first and third appointments.
  • The majority of survey participants (76.56%) stated that they understood at least “most” of the cancer-related information provided to them (Q12); however, 32.82% expressed dissatisfaction with the amount and quality of the information they received (Q21).
  • When asked what resource they most frequently turn to for cancer-related information (other than their healthcare team), the internet was cited by 82.54% of participants (Q13)
  • Questions 15 and 16 illustrated that 73.44% of participants feel they had an appropriate amount of input in developing their treatment plan. 
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” patients ranked “long-term survival” as their highest priority (Q17).
  • When asked to indicate the two most significant challenges they experienced during treatment, the need for emotional support (60.94%) and the impact of physiological symptoms (45.31%) had the highest number of votes (Q27).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” French language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “care plan” as their primary concern, followed by “prognosis” and then “quality of life” (Q7).
  • Like the English language cohort, the French language survey participants received care plans along their ideal timeline of either at the time of diagnosis or between the first and third appointments (Q9, 10).
  • In the French language survey, a greater percentage of participants indicated having more responsibility for the development of their care plans. Only 27.27% felt “appropriately involved,” while 63.63% indicated that they made the decision more independently (Q15).
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” the French language patients also ranked “long-term survival” as their highest priority (Q17).
  • When asked whether they felt prepared for treatment, participants had polarised responses; 63.64% reported feeling “entirely prepared for treatment,” while 27.27% were “mostly unprepared for treatment” (Q24).
  • When asked to indicate the two most significant challenges they experienced during treatment, the French language survey participants voted most frequently for physiological symptoms (54.55%), followed by emotional support and a lack of information, which were tied for votes (36.36% each). This suggests that the need for emotional support is more satisfied for the French language survey participants (Q27).

 

The data from patient reported experience measures, sampled above, is instrumental to our operations as a patient group. We consider these reports when we are prioritizing our initiatives for the new year, preparing our strategic plans for patient support, education, awareness, health policy, and advocacy, and share them with other stakeholders in the cancer space. We hope this information was valuable to you, and that the new year brings you joy, prosperity, and good health.

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Webinar: Diagnosed with Skin Cancer? Here’s What To Do Next

View the recording of our webinar ~ February 24, 2022

An Hour with Kathy Barnard

In this webinar, Kathy Barnard, founder of SYSF and melanoma survivor, shares her experience navigating and advocating through the Canadian health care system, which is complicated and can be confusing to many. She helps patients and caregivers understand how to get from diagnosis to surgical and/or systemic treatment of melanoma or non-melanoma skin cancer (NMSC) such as metastatic basal cell carcinoma (BCC), squamous cell carcinoma (SCC) or merkel cell carcinoma (MCC).

Click HERE to view the recording!

And click HERE to download/print a list of Questions you can ask your Doctor

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New! NCCN Guide for Patients – Basal Cell Skin Cancer

Save Your Skin Foundation is pleased to endorse and announce the release of the new Guidelines for Patients booklet on Basal Cell Carcinoma (BCC, or Basal Cell Skin Cancer) from the National Comprehensive Cancer Network® (NCCN®).

This informative pdf-downloadable or print version booklet will help patients understand their BCC diagnosis and support them through their surgical and treatment options journey. BCC primarily impacts lighter-skinned, sun-exposed people over age 60, due to the buildup of sun exposure over the years. However, skin cancer has recently become more common in younger people, likely as a result of them spending more time in the sun. In very rare instances untreated BCC can progress significantly and be life-threatening. This new resource provides trustworthy information based on the latest evidence, and is available online at NCCN.org/patientguidelines

NCCN® guidelines are easy to read, free, well illustrated, valuable resources for patients and caregivers, available as online e-booklets, download-able PDF files, or on the “NCCN Guides for Cancer” app for iPhone or Android devices and tablets.  Though these guidelines are developed with best practices in use in the United States, the resources do apply to patients and clinicians in Canada (where treatment options and accessibility apply), as confirmed with members of the Save Your Skin Foundation Medical Advisory Board.  Canadian doctors do refer to the NCCN® clinical guidelines, and they do support the distribution of NCCN® patient guidelines to Canadian patients.

 

To view the full collection of National Comprehensive Cancer Network® Guidelines for Patients on melanoma and non-melanoma skin cancers and related treatments and resources, please view our page here:

NCCN Guidelines for Skin Cancers

 

And for more information about Basal Cell Carcinoma, including our 2020 webinar on the topic, please visit our page here:

About Basal Cell Carcinoma

 

The Patient books are available for free to view and print at NCCN.org/patients or via the NCCN Patient Guides for Cancer App: Virtual Library of NCCN Guidelines® App – Available for iPhone/iPad and Android Smartphone/Tablet

The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of 28 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, efficient, and accessible cancer care so patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.

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Move for Melanoma After Party

Join the funnest part of MOVE FOR MELANOMA this year by joining our VIRTUAL AFTER PARTY! Celebrate with the Save Your Skin team, donors and fellow participants! Everyone is welcome!

The After Party will take place on Sunday, September 26th, 2021 at 5pm PT | 8pm ET on a platform called Topia. If you attended our virtual Giving Hope Gala in the spring, then you will know that Topia is a fun, new, online chat platform that allows us to connect virtually in a more human way. You’ll easily be able to move in and out of conversations with other attendees like you would in person with the platform’s spatial video, while also exploring a world full of surprises.

In the meantime, click here to share, participate in, and stay up to date on the progress of our 3rd annual Move for Melanoma event!

 

 

 

 

 

 

 

 

 

What you’ll need:

  • A computer or a tablet – You’ll need a Windows or Mac desktop or laptop computer equipped with a camera, or a Android Tablet or Ipad. For the best experience on Android tablets please use “desktop mode” in Chrome. 
  • A supported web browser – Topia works best on Google Chrome, Edge, and Brave on desktop and laptop computers. For best results we recommend using one of these three browsers.
  • Headphones – There is ambient sound in Topia which is personal to you. Headphones ensure a great experience. Without headphones, higher volume can result in feedback for other guests or mixed sounds which isn’t fun for anyone.

 

How to join:

  • On September 26th at 5pm PT | 8pm ET, click on this link to join: https://topia.io/save-your-skin-foundation. Don’t bother trying to go on beforehand as it will not be available.
  • When you first go in, you will be asked to choose a display name.
  • Your browser will ask for permission to use your camera and audio. If you have Zoom/Teams/Skype open you won’t be able to do this, so please make sure they’re closed first.

 

What to do once you’re in:

  • You can move around the space using either mouse clicks or your arrow cursor buttons.
  • You hear and see people better the closer you are to their little “Topi,” or person.
  • If you walk away from people you hear and see them less. People “fade out” as they get farther away.
  • As you explore, notice when your cursor turns into a pointer. This indicates that the object your mouse is on has a function. Click to interact with the object. 
  • You can mute yourself or others by clicking the speaker icon in the top right corner of your video or theirs. When muted the speaker will turn from black to red.
  • To send a private message to someone at the gala, click on the envelope symbol on their video. If someone sends you a private message, the envelope symbol to the left of your screen will become red. 

 

For complete instructions on how to use Topia and join the party, click here!

 

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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 Endorses the Declaration of Personal Health Data Rights in Canada

SYSF is pleased to announce that it has endorsed an important new initiative, aimed at advocating for the personal health data rights of Canadians. Developed by a patient and caregiver-led Data Working Group formed in 2019 from the annual Patients Redefining the Future of Healthcare in Canada Summit, the Declaration of Personal Health Data Rights in Canada is intended to create greater consensus on the fundamental principles associated with personal health data, particularly from the perspective of patient and citizen groups; in order to encourage the health ecosystem to work out how to achieve these principles efficiently and effectively in partnership with industry, policy-makers, other data custodians, and patients.

The working group undertook a brief review of the current landscape related to personal health data. Various drafts were revised with feedback from a range of health data custodian perspectives, but with a major focus on the perspectives of patients, caregivers, citizen groups and patient group such as SYSF. Since the Declaration’s launch in June 2021, it has been endorsed by 27 patient groups as well as 9 individual patients and caregivers.

Personal health data are critical to patient safety and quality care leading to better health outcomes, while fuelling research and innovation to benefit individuals, groups, and the general public. The Supreme Court of Canada has found that people own and have a continuing interest in and control over their personal health data, while custodians of those data own the records. Because of this, people in Canada have corresponding rights over the personal health data they provide. These eleven rights are: to be informed; to consent; to access, portability & correction; to de-identification; to benefit; to object to processing; to restrict processing; to a complaint process; to privacy & security; to erasure; and to engagement.

The Declaration is available in two formats. To read or download the full Declaration, click here. To read the Executive Summary of the Declaration, click here.

 

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