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New Sun Safety T-shirts

During the month of May, SYSF ran a drawing contest titled “This is What Sun Safety Looks Like” in order to find a new design to adorn our sun safety t-shirts. The contest was aimed at youth under the age of 16. Once the contest submission period was over, we invited the general public to vote for their favourite drawing. The winning drawing, submitted to us by Miley from Scotchlake, NS, won by a landslide. Her drawing, depicting an umbrella, a tube of sunscreen and a water bottle on a road trip to Sun Safety Way in a vintage Volkswagon van, won us over with its fun interpretation of sun safety.

Our new t-shirts and other merchandise, which bear the awesome design, are now on sale in our brand new online merchandise store. We also have some awesome tote bags with the design!

All proceeds made from the sale of our merchandise goes directly to assisting patients meet their everyday needs during treatment in the form of transportation, accommodation, child care, lost wages and more.

Get your very own sun safety t-shirts and tote bags by visiting our brand new store!

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SYSF Webinar! MANAGEMENT OF MELANOMA TREATMENT in the COVID-19 Setting

Recording available!

MANAGEMENT OF MELANOMA TREATMENT in the COVID-19 Setting

Hear a panel discussion from the Surgical and Medical Oncology perspective on how melanoma treatment has been impacted by the COVID-19 pandemic.

Focus:

Treatment side effects
Common side effects of targeted therapy and immunotherapies in melanoma
How side effects may overlap with COVID-19 symptoms
What to watch for
How to effectively manage key common side effects of targeted therapy and immunotherapies

Presenters:
Nicole Look Hong, MD, M.Sc., Surgeon, Sunnybrook Health Sciences Centre
Marcus Butler, MD, Medical Oncology, Princess Margaret Cancer Centre
Massey Nematollahi, RN, CNS, OCN, CON, Immuno-Oncology Clinical Nurse Specialist, William Osler Health System

Facilitator:
Kathy Barnard, melanoma survivor, and Founder, Save Your Skin Foundation

Click HERE to listen to the recording  

To view the educational video developed by the team at William Osler Health System please Click HERE

To learn more about the COVID-19 Cancer Patient Support Hub and resources mentioned by Kathy, please visit this website:   https://covid19oncologyresources.ca/

 

 

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Survey on the Affects of COVID-19

From April 9th, 2020— April 27th, 2020, Save Your Skin Foundation ran a patient survey titled “Impact of COVID-19 pandemic on Canadian melanoma, ocular melanoma, and non-melanoma skin cancer patients.” The survey consisted of 21 questions, which ranged between multiple choice, multi-selection, and write-in, and participants had the option to skip any question. The goal of the survey was to assess the impact that the COVID-19 pandemic has had on the medical, social, and financial security of melanoma, non-melanoma skin cancer, and ocular melanoma patients.

To read the full report of the survey, click here. 

 

Here are some of the key findings of the survey: 

 

 

→ A third of respondents (32%) reported having difficulty accessing ‘other’ care  during the COVID-19 pandemic.

→ Similarly, a third of respondents (34%) reported having no issue with their continuity of oncology care during the COVID-19 pandemic.

→ Just over a third of respondents (36%) said they have had no issues in receiving their scheduled drug therapy or treatment during the COVID-19 pandemic.

→ Two thirds (67%) or respondents reported having, or being offered, telephone or videoconference appointments with a health professional since February 2020.  Just over half (52%) or respondents stated they found these types of appointments to be a suitable substitution for their regular appointments, while 17% felt they were not an appropriate substitution.

→ One in five respondents (20%) reported having some issues receiving drug therapy or treatment prescribed by their oncologist during the COVID-19 pandemic, with a further 4% reporting they have had ‘a lot’ of issues receiving this care. The types of care being affected ranged from routine appointments, prescription drugs, drug trials and scheduled treatments or procedures.

→ Only 4% of respondents reported having no trust in their healthcare team to provide appropriate care and treatment to them during the COVID-19 pandemic.

→ Nine out of ten respondents (87%) reported an increase in their anxiety levels, ranging from “somewhat” (53%) to “a lot” (33%).

→ More than half or respondents (56%) expressed fear that they or others they know are more at risk for COVID-19 due to being immunocompromised.

→ Half (49%) are experiencing anxiety, fear, stress or overwhelm for themselves or others.

→ A third (31%) are experiencing loneliness or isolation.

→ Nearly a third (29%) are experiencing frustration or anger.

→ Nearly half of respondents (45%) reported experiencing difficulty accessing information related to COVID-19.

→ Nearly half (43%) reported experiencing difficulty attending appointments or seeking necessary healthcare because of fear of exposure to COVID-19.

→ Half of respondents (47%) reported having some level of difficulty accessing food and/or food delivery during COVID-19.

→ The majority of respondents (76%) reported having no trouble accessing transportation during COVID-19.

→ Eight out of ten respondents (80%) reported having difficulty keeping in touch with their friends and family during the pandemic, of which, 16% reporting having “a lot” of difficulty.

→ French-speaking respondents reported a much higher percentage of postponed surgeries relative to English-speaking respondents.

→ French-speaking respondents reported very little current difficulties reaching their healthcare professionals when taking the survey, but reported an extremely high feeling that there would be future disruptions in their care.

 

In Conclusion

The results of this survey suggests that cancer patients across Canada are experiencing the same COVID-related social and financial anxiety as others. However, they also have the added stress of navigating an already complex medical system in this time, having treatments rescheduled and appointments online, and being higher risk. It is imperative that we keep in mind segments of the population who are having particular difficulty at this time, and support them however we can.

That is why Save Your Skin Foundation created the COVID-19 Information Hub and partnered with several other organizations to launch a COVID-19 Oncology task force and to offer webinars to support melanoma patients during this crisis. As the support needed by melanoma and skin cancer patients continues to evolve in these fast changing times, we are committed to adapt our services and initiatives accordingly. We continue to work closely with melanoma patients and their families to ensure they have the support and resources they need to access the best specialists and treatments. The affects of COVID-19 have only confirmed our dedication to developing innovative national strategies and advocating for better access to new therapies and the prioritization of cancer funding.

For the COVID-19 pandemic, we recognized the need for research and development into vaccine and treatments, and the need for easy timely effective testing and contact tracing and have supported research into these and quick approval for access to them.

From that experience, it has become clear 1. That the already poor times to diagnosis and treatment for cancer patients have been exasperated by the pandemic, and 2. That the supposedly rigid rules about how clinical trials are done and getting drugs to people only after phase 3 trials are complete, are only discretionary for COVID-19 related treatments and vaccines, but both of these need to be addressed for cancer post-COVID.

Future pandemic planning MUST include cancer patient groups and must draw on what the actual implementation taught us. In the near future, we have a meeting with multi PAGs to have a preliminary discussion on these issues and how to move forward together to organize these issues.

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Save Your Skin Partners with the Quebec Cancer Foundation

It is with great pride that the Quebec Cancer Foundation and Save Your Skin Foundation announce that they have joined forces in order to optimize the support offered to people living with cancer and their loved ones.

This partnership agreement will allow French-speaking people in Canada who are affected by skin cancer and ocular melanoma to be better served and to have better access to telephone support in French.

Save Your Skin Foundation will now be able to offer telephone support to its French-speaking clientele—in Quebec but also in the rest of the country—by redirecting them to the documentalists and experienced oncology nurses of the Quebec Cancer Foundation’s Info-cancer Services.

For the Quebec Cancer Foundation, the goal is to get closer to the people by going wherever they were not present before and to give support to those who need it, regardless of their type of cancer.

Save Your Skin Foundation will thus be able to offer its clientele all the benefits of the three components of the Quebec Cancer Foundation’s Info-cancer Services.

First of all, they will have access to the Info-cancer hotline, which allows them to talk to experienced oncology nurses who, in total confidentiality, can give answers and reassurance on all aspects of cancer. If necessary, they can also be referred to a free consultation service with a nutritionist or psychologist.

Info-cancer Services also includes the Info-cancer Library—the largest specialized French-language library of its type in North America. It contains a vast collection of books on every aspect of cancer and on ways of living better with the disease. Loans are free and sent by mail, anywhere in Quebec.

Finally, they will be able to benefit from the telephone peer matching service, which allows people affected by cancer or loved ones to be paired with specially trained sympathetic volunteers who have had a similar cancer experience. These volunteers are there to provide moral support and practical information to anyone affected by cancer—from the time of diagnosis, throughout the treatments, and even afterwards.

Through this partnership, Save Your Skin Foundation and the Quebec Cancer Foundation are consolidating their goals of supporting the community with sensitivity and humanism, of improving their ways of doing things, of defending the interests of people affected by the disease, and of mobilizing their forces to address important issues.

“Getting a cancer diagnosis is never easy. Having more information can help you feel more in control. Save Your Skin Foundation wants to bring hope and support to all those who are newly diagnosed, undergoing treatment, or in remission. We invite all skin cancer and ocular melanoma patients to contact us at any time.” says Kathy Barnard, President of the Save Your Skin Foundation and melanoma survivor.

For the Quebec Cancer Foundation, this agreement is essential, as is the development of new partnerships. “Joining forces with new partners such as the Save Your Skin Foundation will allow us to help more people affected by cancer. By working hand in hand with other organizations, we are no longer duplicating our services but, on the contrary, working to develop complementary services for the benefit of the thousands undergoing this ordeal.” says Marco Décelles, Director General of the Quebec Cancer Foundation.

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Drawing Contest Winner

We are pleased to announce that the winner of our 2020 Melanoma Awareness Month Drawing Contest is:

Miley of Scotchlake, Nova Scotia!

 

Her beautiful drawing will adorn the next edition of the SYSF t-shirt. Get your sun safety T-shirts and Tote Bags HERE!

Miley will be receiving a $100 Amazon gift card to thank her for her amazing effort. Thank you to everyone who participated in our very first drawing contest by submitting a drawing, sharing our posts and/or voting. We couldn’t have done it without you!

 

 

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National Cancer Survivors Day

June 7th, 2020 is National Cancer Survivors Day!

         As Melanoma Awareness Month is so closely followed by National Cancer Survivors Day, which takes place on the first Sunday in June, the two occasions feel symbolically connected. May is a month wherein those who have been touched by melanoma, ocular melanoma, or non-melanoma skin cancer take the time to remind themselves and others of the importance of skin cancer prevention and detection, and emotional and financial support for patients. The conversations that we have throughout Melanoma Awareness Month traverse the most early days of diagnosis, through the creation of a healthcare plan, treatment, and survivorship. Therefore, National Cancer Survivors Day– which is June 7th this year– feels like an appropriate, and especially hopeful, way to conclude the journey that we trace throughout Melanoma Awareness Month, from diagnosis to survivorship. Therefore, we would like to bridge Melanoma Awareness Month and National Cancer Survivors Day reminding you to participate in this important occasion!

         National Cancer Survivors Day is a not-for-profit organization that began in the United States, but is beginning to gain a global following. To help spread the word about National Cancer Survivors Day, they have a number of social media graphics that you can share, and many resources for organizing your own National Cancer Survivors Day event. There is also a great list of resources on their website of issues surrounding survivorship, other non-profits, statistics, and news for survivors.

         Melanoma survivor and Save Your Skin Founder and President Kathy Barnard has previously written: “[when I was diagnosed] I realized how big my support network was. I had a lot of family, friends, colleagues and people in the community who were there for me. Together we stand strong. And today, I have new friends that I have created, new people I have tried to help. I want to continue building a community where people living with melanoma are not alone.” This desire to build community has always been at the core of Save Your Skin Foundation. We hope that you will finish off Melanoma Awareness Month by participating in National Cancer Survivors Day, in order to support and honour the cancer survivors in your life.

 

 

 

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New Survey Results Show Gaps in Knowledge About Melanoma

WE NEED TO STEP UP OUR KNOWLEDGE ABOUT MELANOMA                                                                                                                   

A recent survey of adult Canadians, conducted by Leger in March 2020 in collaboration with Novartis Pharmaceuticals Canada Inc. and Save Your Skin Foundation, shows gaps in knowledge about the deadliest skin cancer, melanoma. 

Here’s what the survey told us:

About one quarter of Canadians (26%) are not aware or don’t know that spending more time in the sun increases their risk of melanoma.

Only half of respondents (51%) say they are knowledgeable about melanoma.

Canadians who claim to be knowledgeable about melanoma are significantly more likely to believe that they are at risk of melanoma (48% vs. 24%) of those who say they are not knowledgeable.

More than half of Canadians (55%) either don’t know or incorrectly identified that small amounts of sun exposure without protection can lead to melanoma.

60% of Canadians have a misconception that melanoma mainly occurs in people with fair skin.

Only 39% correctly identified that melanoma can occur in all skin types.

A majority of Canadians (58%) have a misconception that treating melanoma is a simple procedure.

Two thirds of Canadians (66%) say they would want to know their mutation type if diagnosed with melanoma.

Only 15% strongly agree that knowing their mutation type could change the course of their melanoma treatment journey.

Only half of Canadians (48%) believe that melanoma is the most dangerous form of skin cancer. In the under 55 group, just over one third of the Canadians (37%) identify melanoma as the most dangerous form of skin cancer.

Knowledge is power. Help us get Canadians more informed about melanoma.

To download a PDF version of these findings, click here.

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Melanoma Awareness Month: Patient Support Resources

 

Everyone has different support needs, especially in the context of a melanoma, ocular melanoma, or non-melanoma skin cancer diagnosis. Whether you are looking for community, information, or strategies for self-care, we have resources available for you. We encourage you to take a look through our website to find what works for you, but for now, here is an overview of what we have to offer. If you are particularly looking for information and support related to the COVID-19 pandemic, you should check out our COVID-19 information hub.

In our 2017 survey report, “The Affects of Melanoma on the Mental Wellness of Patients, and the Landscape of Mental Health Support in the Canadian Melanoma Community,” Save Your Skin found that the effects of a melanoma diagnosis on the mental wellness of a patient is a real and urgent concern. Survey participants reported needing support with fear, grief, end-of-life planning, their diagnosis, next steps, living with cancer, family support, survivorship, and hope. The most ideal forms of support for participants, according to the survey, are group therapy, one-on-one therapy, and family support. The majority of participants (66% in our English survey and 84.21% in our French survey) reported wanting mental wellness support after their cancer diagnosis. Therefore, if you are fighting cancer or know someone who is, it might be helpful to participate in or share the resources below!

 

Webinars

Save Your Skin has been running webinars on medical and patient support topics since 2015, the video and audio recordings of which are archived on our website. These webinars are not only an excellent educational resource, but are great for connecting with the oncology community and meeting other patients and survivors. In terms of mental health support and community, the “Mental Wellness & Support After a Cancer Diagnosis,” “Living Beyond Cancer,” and “Surviving Melanoma: A Discussion on Survivorship” might be especially interesting to you– however, it is definitely worth looking through the entire list!

 

Patient Support Group Chats

On the first Thursday of every month, we host our informal Patient Support Group Chats. These meetings are free, can be joined by phone or online, and are open to melanoma, ocular melanoma, and non-melanoma skin cancer patients and survivors. These group discussions include patients and survivors from across Canada, and members of the Save Your Skin team, including Founder Kathy Barnard.

In addition to our support group, you can find a list of other support group options on our Additional Resources & Support Groups page, which may include something that is more local for you.

 

Emotional and Mental Wellness Resources Page

Our Emotional and Mental Wellness Resources page features many resources related to mental wellness. These include guides for coping with overwhelm, catastrophic thinking, and grief, for improving your quality of life, and for maintaining support networks and hope. This page also includes a link to Psychology Today’s chronic illness therapist search engine, which will help you find options for therapy in your area. On this page, you can also view our guide to self care after a cancer diagnosis

 

Community and Hope

If you are looking to make connections with people who have gone through a melanoma, ocular melanoma, or non-melanoma skin cancer diagnosis, or to read stories of hope, you might also be interested in our survivorship initiatives, such as Melanoma Through my Lens, which features the stories of six Canadian melanoma survivors, or I’m Living Proof, a global map that showcases the stories of many melanoma, ocular melanoma, and non-melanoma skin cancer survivors. If you are interested in speaking to someone you see on I’m Living Proof, you can request to connect with them to be put in touch.

We hope that Save Your Skin has something to support your mental wellness, wherever you are in your journey. This Melanoma Awareness Month, consider taking the time to investigate what resources may help you, or share the graphic below to your community, as you never know who might need help. Remember: hand in hand, we fight skin cancer together.

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To Protect Yourself from Melanoma, Look UP

Our friends at Euromelanoma, in collaboration with the Global Coalition for Melanoma Patient Advocacy (an initiative of the Melanoma Research Foundation, of which SYSF is a member) have launched a new campaign to encourage people to do monthly skin checks. The campaign encourages people to “Look Up”.

If they see the sun, people should take action to protect their skin. If they see the full moon, they should perform a monthly skin check.

Help protect your loved ones and spread awareness of the importance of skin checks by downloading and sharing this poster:

To read the full report on global skin cancer statistics which inspired this campaign, please CLICK HERE.

Save Your Skin Foundation is proud to support and share this campaign to increase awareness of melanoma and non-melanoma skin cancers.  We thank Euro Melanoma for their hard work and collaboration, and we appreciate the sponsors and partners of the project.  Watch our social media channels for more on this initiative, and as always, feel free to contact us if you would like more information! natalie@saveyourskin.ca

About the Global Coalition for Melanoma Patient Advocacy: Click here to go to their introductory web page.  Save Your Skin is proud to be working with US-based Melanoma Research Foundation and the many other groups in the Coalition.  More on this is developing as we work together from our locations around the world to improve the lives of melanoma patients and their families.

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COVID-19 Cancer Patient Support Hub

To respond to the immediate, practical needs of Canadian cancer patients during COVID-19, Save Your Skin Foundation and 11 other Canadian oncology patient support groups have created the COVID-19 Cancer Patient Support Hub.

Initiatives include an online information hub, mental health and wellness resources, and practical support with volunteer assistance.

Click here to visit the COVID-19 Cancer Patient Support Hub

Read the press release here:

Canadian Cancer Patient Groups Rally to Help Cancer Patients Facing COVID-19 Challenges

May 5, Toronto: Responding to the unprecedented challenges posed by COVID-19, leading oncology patient groups are launching today a national patient-led initiative to support the immediate, practical needs of people living with cancer.

The COVID-19 Oncology Support Task Force has launched the COVID-19 Cancer Patient Support Hub under the umbrella of All.Can Canada, a multi-stakeholder group working in oncology. Initiatives will include an online information hub, mental wellness and practical supports, with volunteer assistance. It includes a public campaign to raise awareness about the unique challenges faced by an estimated 2.1 million Canadians currently living with cancer.

“I was in desperate need of help when I learned that I could no longer get from BC to Ontario for my cancer treatment. I turned to Save Your Skin Foundation, a national skin cancer patient organization, to help me cope with this news and to organize alternatives. Patients need the services this Task Force is providing,” explains Tanya, a melanoma patient.

“Kathy Barnard, the President of Save Your Skin Foundation, called me and told me this story. Other stories started to surface from cancer patients about the practical and emotional issues they were experiencing as a result of COVID-19. We knew we had to act,” said Louise Binder, the lead health policy consultant on the Task Force.

“Cancer patients across Canada are anxious and trying to cope during social isolation orders. They are telling us they need support as medical appointments and treatments are cancelled or postponed,” says Christina Sit, Program Manager, Lung Cancer Canada. “We knew this was bigger than any one organization could handle.”

Dr. Michael Smiley, Medical Oncologist and Clinical Researcher at the Cross Cancer Clinic in Edmonton, lauds the community initiative. “This pandemic has added to the stressful situation for cancer patients. Mental wellness supports and practical help is sorely needed and much welcomed,” he said.

“The Quebec Cancer Coalition is glad to participate in this initiative in solidarity with other patient organizations from the rest of Canada, says Eva Villalba, Executive Director, Quebec Cancer Coalition. “Our Coalition will happily contribute the Quebec perspective to the All.Can Task Force on COVID-19 and cancer, and share the work and resources we have developed locally with organisations in other jurisdictions. Together we can make a greater impact!”

A cancer diagnosis is devastating. COVID-19 exacerbates mental health issues, social and physical isolation and difficulty accessing treatments and essential services. Canadians are asked to share information about the site, www.COVID19OncologyResources.ca, with anyone they know living with cancer, caregivers, their families, and anyone else affected by cancer.

Patient groups participating in the Task Force include:

All.Can Canada
Canadian Neuroendocrine Tumour Society
Canadian Psoriasis Network
Canadian Skin Patient Alliance
CML Canada
CONECTed
GIST Sarcoma Life Raft Group
The Leukemia & Lymphoma Society of Canada
Life Saving Therapies Network
Lymphoma Canada
Lung Cancer Canada
Myeloma Canada
Quebec Cancer Coalition
Save Your Skin Foundation

 

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