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New NCCN Guidelines: Survivorship

SYSF wishes to congratulate the National Comprehensive Cancer Network® (NCCN®) on their new release of incredibly valuable patient/caregiver resources!  

Click on the links below to take a look at the new, free informational resources on health and wellness for cancer survivors. These two new NCCN Guidelines for Patients® are focused on healthy living and managing late and long-term side effects, and include appropriate ongoing screening for recurrence.  

The books Survivorship Care for Healthy Living and Survivorship Care for Cancer-Related Late and Long-Term Effects provide jargon-free roadmaps for what comes next after initial cancer diagnosis and therapy.

Save Your Skin Foundation is pleased to have provided endorsement for the books, as well as several quotes from skin cancer patients, survivors, and caregivers in our own community!  Kathy, Mike, Chris, Yvonne – and many more – have offered their helpful words of wisdom to all who read these.  And they join the ranks of SURVIVOR TV show winner and cancer survivor, Ethan Zohn, who can attest that “Getting a cancer diagnosis is scary. Surviving cancer can be even more scary.”  Click here to read the full press release

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.

There are guidelines created for many cancers; we have listed below the links to each most relevant to the topic of skin cancer or ocular melanoma, as well as supportive topics such as immunotherapy or treatment side effects, and mental wellness issues and survivorship. NCCN guidelines are easy to read, well illustrated, and a valuable resource for patients, available as online e-booklets, download-able PDF files, or on the “NCCN Guides for Cancer” app for iPhone or Android devices and tablets.

To view the guidelines, please click the following links:

NCCN Guidelines for Patients®: Melanoma

NCCN Guidelines for Patients®: Squamous Cell Skin Cancer

NCCN Guidelines for Patients®: Immunotherapy Side Effects series:

Immunotherapy Side Effects: CAR T-Cell Therapy and  Immunotherapy Side Effects: Immune Checkpoint Inhibitors

NCCN Guidelines for Patients®: Survivorship Care for Healthy Living and Survivorship Care for Cancer-Related Late and Long-Term Effects 

NCCN Guidelines for Patients®: Distress

NCCN Guidelines for Patients®: Adolescents and Young Adults with Cancer

Coming Soon – Guidelines for Patients on Basal Cell Carcinoma, and Uveal/Ocular Melanoma!  If you wish to read the Clinical Guidelines (for Health Care Providers), please see here:  NCCN Clinical Practice Guidelines®: Uveal Melanoma

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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A Viking’s Challenge is Back!

A Viking's Challenge is BackMark your calendars! The second edition of A Viking’s Challenge will be taking place on March 6, 2021. 

Last March, Chris Isfeld ran 30km across frozen Lake Winnipeg and raised almost $20,000 for melanoma patients! Building on last year’s enormous success, Chris invites you to join A Viking’s Challenge this year by running a distance of your choice anywhere in Canada.

Chris’s Story

Chris is a melanoma survivor. His story with cancer began in 2017 when he was diagnosed with advanced melanoma. He was given lifesaving immunotherapy treatment just in time. The treatment was challenging but it proved to be effective. The cancer stopped growing and the side effects became more manageable over the next few months. Soon, he was walking again. By December 2018, just one year after his melanoma diagnosis, he was lacing up his running shoes again.

The results of his latest PET/CT scan, on November 2, 2019, show an almost complete metabolic response; he is well on the way to becoming NED (No Evidence of Disease).

 

A Viking's Challenge is BackTHE CHALLENGE

Chris had been frequently running and practicing yoga to overcome the physical and emotional anguish he was feeling.

In an interview with Global News, he said:

“A friend of mine, Shawn Bjornsson from Winnipeg, posted a photo after he did a 5K run in -40, and for some reason, I just made a comment and said, ‘Hey, I’ll race you across the lake,’ just as a joke, But a week later, I thought about it, and thought, ‘You know what, this is an absolutely great idea.’

“It gives me something to focus on, and obviously with my diagnosis, I had gotten to know the people at Save Your Skin Foundation very well, and decided that I should do it as a fundraiser and raise money for them.”

THE RACE

True to their Viking roots, they didn’t back down from a challenge. On March 7, 2020, they ran about 30 km from Grand Beach, Manitoba to Gimli, Manitoba, raising almost $20,000 for Save Your Skin Foundation. Read more about last year’s race here.

This Year’s Challenge

Last year’s race was a personal challenge for Chris and his friend Shawn, but since so many expressed an interest in joining the challenge in future years, Chris has decided to open the challenge up to the general public this year. Because of the pandemic, the event will take place virtually, allowing participants to run any distance they choose from any location in Canada and beyond. To participate, runners will have to register and make a one-time donation to Save Your Skin Foundation. More details will be coming soon but, in the mean time, lace up those running shoes, put on your helmet and start channeling your inner Viking!

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Happy Holidays from the SYSF Team!

From Save Your Skin Foundation’s Founder and President, Kathy Barnard, here is a message of thanks to all those who supported the Foundation this past year. SYSF’s team is so very grateful to all those who helped us as we continued offering the best support possible to melanoma, non-melanoma skin cancer and ocular melanoma patients and caregivers, despite the unprecedented challenges we faced this year.

Warmest wishes for a happy holiday season and a wonderful New Year. With lots of love.

 

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Sun Safe BC

BC Sun Safety Coalition

Sun Safe BC is a provincial coalition with members involved in sun safety and skin cancer prevention work.  Coordinated and administered by BC Cancer Prevention Program, the coalition works collaboratively to reduce the risk of exposure to UV and its damaging effects. We do this through policy and health protection measures, and by providing health promotion messaging and education to people in BC, with a particular focus on infants, children and youth.

Membership

  • Save Your Skin Foundation
  • Canadian Cancer Society
  • CAREX Canada
  • Vancouver Coastal Health
  • BC Centre for Disease Control
  • UBC Dermatology
  • BC Children’s Hospital
  • BC Cancer
  • Canadian Dermatology Association

 

Action Areas

CAPACITY FOR ACTION – Strengthen capacity among priority population service providers and educators

SUPPORTIVE ENVIRONMENTS – Create and strengthen supportive environments to limit exposure to UV radiation

POLICY & DECISION MAKING – Inform decision making and seek to influence sun safe policies, advancing toward provincial policy creation or amendments when and where possible;

ATTITUDE, KNOWLEDGE & BEHAVIOUR – Influence and improve attitudes, knowledge and behaviour around sun safety and develop individual skills to keep healthy and avoid UV radiation damage.

 

Current and past projects

Online Training for Early Childhood Educators

Developed and currently hosting zoom workshops for early childhood educators as part of their professional development requirements.  Early Childhood Educators can play an important role in protecting children from the sun’s rays. The course covers important information about skin cancer and ultraviolet radiation, sun protection methods and easy and practical ways to build sun safety into daily routines at childcare centres.  We are working to convert the course to an interactive, online platform and are looking to expand course offering to others working directly with children.

Shade Pilot Project

We are working with the City of Vancouver to design and install shade solutions for their high UV exposure childcare facilities.  We are currently building a research plan to measure UV exposure and physical activity levels in centres with and without shade sails installed.

Sunscreen Dispenser Project

Members of the coalition have been working to have sunscreen dispensers installed at select park locations during spring/summer months.  To date, sunscreen dispensers have been installed at New Westminster’s Riverfront Park and two park locations in Kelowna.

 

Reports

Annual report 2019/20

Contact

For more information or to connect, visit the website HERE or email breann.corcoran at bccancer.bc.ca or call 604-838-7808.

 

 

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Letter to Santa 2020

Our annual holiday letter to Santa

Every year, one of the last to-do items we check off our list is sending our annual holiday letter to Santa.
This year certainly looked a lot different than years past, but our wish list hasn’t changed much.

Read the letter to see what we asked Santa for!

 

 

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Join Us! SYSF Virtual Holiday Happy Hour Dec. 19 2020

Everyone is welcome!  Patients, caregivers, survivors of melanoma, non-melanoma skin cancers and ocular melanoma. 

Casual get-together to say a Holiday Hello – and wear your best Ugly Sweater for a chance to win a prize!

Saturday, December 19, 2020 at 3pm PST / 6pm EST

Login for free anywhere you have wifi, or dial-in at the details below:

SYSF Holiday Happy Hour – virtual get-together

Please join my meeting from your computer, tablet or smartphone.
https://www.gotomeet.me/SYSF/sysf-holiday-happy-hour—virtual-get-together

You can also dial in using your phone.
Canada: +1 (647) 497-9391

Access Code: 577-911-981

New to GoToMeeting? Get the app now and be ready when your first meeting starts: https://global.gotomeeting.com/install/577911981

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New Merchandise Just in Time for the Holidays!

 

The holiday season is right around the corner and we know many of you are busy buying gifts for your loved ones.

To bring a little bit of extra cheer to our own holiday season, and to entice you to support melanoma patients while checking off your shopping list, we opened an Etsy store and designed some brand new Save Your Skin merchandise!

Amongst other things, we now have branded hoodies, headbands, t-shirts, bags, masks and, our favorite new item this year, a hilarious Ugly Christmas Sweater!

Whatever you end up buying, rest assured that all proceeds will, as usual, go directly to patients living with melanoma, non-melanoma skin cancer and ocular melanoma to help them with their everyday needs during treatment in the form of transportation, accommodation, child care, lost wages and more.

There’s an item for everyone in the family, and for every budget. For the fitness enthusiast, we have stylish branded Lululemon shirts and tank tops for men and women. For the minimalist, we have classic black tees with a simple logo. And for that friend who loves making others laugh, I think you’ll agree that the Ugly Christmas Sweater will do just that.

 

 

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5th Annual Patients Redefining the Future of Health Care in Canada Summit

It is our pleasure to invite you to the 5th Annual Patients Redefining the Future of Health Care in Canada Summit (previously the Drug Pricing Policy Summit), being held virtually this year.

This annual patient education and awareness Summit is a joint project between Save Your Skin Foundation and the Canadian Psoriasis Network. This year, Value-Based Healthcare Canada (an initiative of the Conference Board of Canada)  joins as the co-host of our session on value-based health care.

Ongoing barriers and systemic issues experienced by patients in Canada have become starkly clear in light of the COVID-19 pandemic. This virtual Summit will share information on the state of health and health care for different populations and how COVID-19 has impacted population health as well as specific policy issues facing Indigenous communities, older adults, populations living with mental health issues, and people experiencing income insecurity. The audience will include members of the patient and caregiver community from all disability and disease areas as well as other health care stakeholders.

In addition, the Summit will update attendees on the progress of value-based health care (VBHC) projects in Canada. The Summit will continue to focus on shifting toward a value-based approach to health care in Canada that improves value to patients, particularly as we move toward ongoing mitigation and eventual recovery from the pandemic.

It will also continue to foster collaboration and partnerships between patient and caregiver communities and other relevant health care stakeholders.

Read more, see the full Agenda, and Register now at this link: https://pheedloop.com/patients/site/home/

 

Also!  Watch the pre-Summit informational webinar:

Patients Redefining the Future of Health Care in Canada Summit: The Starting Line

Introduced and facilitated by Louise Binder, Health Policy Consultant, this webinar reviews concepts presented at the 2019 Summit, A Dose of Reality: Patients Redefining the Future of Health Care in Canada. Presentations will include recordings of Jennifer Clawson, Health Systems and Value-Based Health, Boston Consulting Group, and Dr. Ambreen Sayani, Health Strategist and Consultant, St. Michael’s Hospital, Toronto. 

Discussion surrounding this review will prepare attendees for the 5th Annual Patients Redefining the Future of Health Care in Canada Summit being held virtually this year, in several short sessions on Nov 30, Dec 3, Dec 8, and Dec 10, 2020.

CLICK HERE TO VIEW THE WEBINAR

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How Can Zamplo Help You?

Save Your Skin Foundation has teamed up with Zamplo to help patients and caregivers like you

  • Track your symptoms in real-time
  • Create a ‘virtual binder’ you and your caregiver can access from anywhere
  • Create a list of questions to ask your doctor at your next appointment
  • Scan/upload documents from your medical appointments to create a virtual binder
  • Write daily journal entries to express your thoughts, feelings and emotions
  • Generate reports for your symptoms, medications and questions to help guide your conversation with your doctor
  • Easily share your information
  • Graph your health data

Get the app here!

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Debunking 5 Myths About the Sun and Tanning

debunking tanning mythsThere are dangerous misconceptions surrounding the safety of tanning. For this reason, we set out to uncover the science behind tanning and understand the truth behind 5 common tanning myths.

MYTH #1: Tanning Beds Are Safer Than the Sun

The best way to understand why tanning beds are more harmful than regular sun exposure is to break down the tanning process. First, when individuals spend time outdoors the sun’s UV rays dig into their skin and break through the skin’s protective layers. In response to this, the skin fights back with specialized skin cells known as melanocytes. The melanocytes release the pigment melanin which causes the tanned appearance. Unfortunately, sometimes the impact of UV rays can become too much for the skin cells to handle and sunburns form as a result. This impact by the UV rays damages the DNA in skin cells and overtime this can also lead to cases of skin cancer and a vulnerable immune system.[efn_note]For more information on the science behind tanning see “Tanning (for Teens)” by Nemours KidsHealth, https://kidshealth.org/en/teens/tanning.html[/efn_note]  With this in mind, if individuals use tanning beds they are subjecting their skin to this damage at a greater frequency than if they were to spend time in the direct sunlight. To solidify this, the World Health Organization has placed tanning beds in the highest cancer risk category. 

MYTH #2: A Base Tan Provides Adequate Sun Protection 

For many years, the theory that a base tan will provide sun protection has tempted individuals to hit the tanning beds before summer vacation. The idea behind this is that the base tan will reduce the chance of sunburning by preparing the skin for a battle in the sun.[efn_note]For more information on base tans see “10 Surprising Facts About Indoor Tanning” by the American Academy of Dermatology Association, https://www.aad.org/public/diseases/skin-cancer/surprising-facts-about-indoor-tanning[/efn_note] However, it has been discovered that if a base tan were measured on the SPF scale it would be equivalent to a sun protection factor of between two and four.[efn_note]For more information on tanning safety see “Indoor Tanning Is Out” by the Canadian Dermatology Association, https://dermatology.ca/public-patients/sun-protection/indoor-tanning-is-out/[/efn_note] It has been recommended that individuals wear sunscreen with an SPF of thirty so just by merely examining these numbers it is clear a base tan is not nearly enough protection. In addition to this, the base tan would be exposing the skin to the known damage of tanning beds which is more dangerous than protective. The lack of evidence to support the base tan theory confirms it is not the best route and the best sun protection is still sunscreen, sunglasses and sun safety apparel.[efn_note]For further information on base tans see “A Healthy Base Tan?” by Forefront Dermatology, https://forefrontdermatology.com/heathy-base-tan/[/efn_note]

MYTH #3: Extra Sun Exposure Is Necessary for Vitamin D Levels

It is a common fact  that Vitamin D is associated with healthy bones, but Vitamin D can be obtained more easily than most people think. There is no need to spend a prolonged amount of time in the sun to soak up the sought after vitamin. It can be acquired through eating foods abundant in Vitamin D like salmon, tuna and egg yolks. Milk sold at grocery stores is also enriched with Vitamin D to reduce the chance of bone health concerns. In addition to this, after consulting a doctor, and if deemed appropriate, there are Vitamin D supplement options. This being said, the amount of time individuals spend outside naturally is sufficient in increasing Vitamin D levels, making a lengthy time outdoors for that specific purpose unnecessary.[efn_note] For more information on Vitamin D see “Vitamin D Myths ‘D’-bunked” by Yale Medicine, https://www.yalemedicine.org/stories/vitamin-d-myths-debunked/[/efn_note]

tanning isn't worth the risk

MYTH #4: Sunscreen Is Unnecessary While Under Cover 

There exists a common misconception that being under shade protects the skin from the sun’s harmful UV rays. The issue with this is that although individuals may not be in the direct line of the UV rays they can still be indirectly affected when the sun’s rays reflect off of other surfaces. For example, it is common to sit under an umbrella for shade during a day at the beach but the sun can still reflect off of the water and sand. On top of this, it can be difficult to always remain completely covered under an umbrella or shaded area because the sun moves quickly. For these reasons it is safest to still apply sunscreen for full coverage.[efn_note]For more information on the use of sunscreen see “Healthy Skin: Made in the Shade?” by the Skin Cancer Foundation, https://www.skincancer.org/blog/healthy-skin-made-in-the-shade/[/efn_note]

MYTH #5: Tanning Achieves Perfect Skin

The results of a tan can appear to cause skin to look radiant and remove the sign of blemishes. In fact, tanning the skin only temporarily creates this effect and it is well known that every tan creates varying levels of skin damage. Sun exposure is the most common cause of skin damage and wrinkling. Exposure to the ultraviolet (UV) radiation in sunlight causes changes to the skin. In addition to fine lines and wrinkles, UV damage causes brown spots and pigment irregularity, as well as broken capillaries and red blotches.[efn_note]For more information on skin damage by sun esposure see “Wrinkles” by the Better Health Channel, Victoria State Government, https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/wrinkles[/efn_note] In light of this, as tempting as it may be, a tan is not needed to achieve perfect skin. Skin care is about keeping skin healthy and not trying to make it look flawless. The skin functions and protects the human body in so many ways which is why it is important to take care of it. The best way to do this is to practice sun safety while outdoors and steer clear of tanning beds. 

For more information on sun safety, and to access resources to help you protect yourself, check out our Prevention page and our Sun Safety Resources poster.

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