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melanoma

Updating the ABCDE’s of Skin Checks

We have long known that monthly skin self-examination is an important piece of a vigilant routine for a healthy life.  Everyone should check their own skin – and that of their loved ones – for any irregularities or atypical markings, lumps or bumps.  Early detection is key, and can make all the difference in the case of any melanoma OR non-melanoma skin cancer diagnosis.

At the World Congress of Melanoma last fall, we learned that there are two new letters in the traditional ABCDE’s of skin checking: F and G

F for Firmis the mole harder than the surrounding skin?

G for Growingis the mole gradually getting larger? 

As the alphabet of skin-checking grows, so does our awareness of the importance of the following:

 

A – Asymmetry. The shape of one half does not match the other half.

B – Border that is irregular. The edges are often ragged, notched, or blurred in outline. The pigment may spread into the surrounding skin.

C – Color that is uneven. Shades of black, brown, and tan may be present. Areas of white, gray, red, pink, or blue may also be seen.

D – Diameter. There is a change in size, usually an increase. Melanomas can be tiny, but most are larger than 6 millimeters wide (about 1/4 inch wide).

E – Evolving. The mole has changed over the past few weeks or months.

F – Firm

G – Growing

Save Your Skin Foundation has developed new post-card style brochures to share this information, which remind us of these helpful tips that could save the skin we’re in.  Check out the images below or on our downloadable resources page, and if you would like to receive some of these cards for your awareness or educational event, please contact info@saveyourskin.ca and we will send you some!

In the meantime, check your skin – all over! – and ask your doctor about any concerns you may have.

 

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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 natalie@saveyourskin.ca

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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SYSF Attends ESMO 2017 Congress

September 8-12, 2017, Kathy Barnard attended the ESMO 2017 Congress, European Society for Medical Oncology, in Madrid Spain.  In partnership with the European Association for Cancer Research, ESMO brought cancer researchers and clinicians together to enable collaboration and the exchange of ideas, from the laboratory to the bedside and back. This exciting partnership creates a unique cancer congress in Europe with huge scientific reach and the true potential to improve the lives of cancer patients.

With her, Kathy brought home the latest in news about melanoma and other skin cancers, as summarized in this report: ESMO 2017 Congress – Melanoma Highlights.

View or download the report HERE for details about the following:

Plenary Sessions
Adjuvant dabrafenib plus trametinib significantly lowers risk of death in stage III BRAF V600–mutated melanoma
BRIM8 data shows benefit with adjuvant vemurafenib in resected BRAFV600 positive melanoma
Nivolumab bests ipilimumab as adjuvant therapy in resected melanoma

Article from ESMO Daily Reporter
Practice-changing phase III data in melanoma patients cause excitement at a Presidential Symposium

Links to Press Releases
ESMO 2017 Press Release: Combination Targeted Adjuvant Therapy Doubles Relapse-free Survival in Stage III Melanoma
ESMO 2017 Press Release: Adjuvant Nivolumab Superior to Ipilimumab in Surgically Resected Stage III/IV Melanoma

Poster Submissions

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Melanoma Patient Survey for World Mental Health Day

A cancer diagnosis of any kind takes a toll on the mental health of those who receive it; feelings of anxiety, fear, and depression are common while adjusting to the uncertainty of a new life with cancer. World Mental Health day is October 10, and this year Save Your Skin Foundation is hoping to shed some light on the affects of a melanoma diagnosis on the mental health of patients and survivors.

By taking our survey anonymously, as either a patient or survivor, you will be providing us with insight regarding the need for emotional support among those diagnosed with melanoma, how these needs change in the transition period from patient to survivor, and how to provide the best support possible for anyone in this process.

We appreciate your taking this survey before September 25, and hope that you will share it with anyone you may know who has experienced a melanoma diagnosis. With your help, we hope to improve the ways we address mental health support for melanoma patients.  Stay tuned for the report we will compile from the survey! The survey is now closed, thank you for your feedback. 

Updated October 10, 2017: Please click here to read the report ~ SYSF Survey: Melanoma Patients and Mental Health, 2017

 

More information about World Mental Health Day can be found here.

For any questions or additional information, please feel free to contact us.

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#sunsafechallenge Winner Announcement!

Thank you to everyone who participated in our #sunsafechallenge instagram contest! Here are some of the awesome photos that were shared. Scroll to the bottom to see which post has been randomly selected to win a $100 Shoppers Drug Mart gift card!

      

And the winner is…

Congratulations, @ramonabietlot!

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February Conference Recap: Canadian Melanoma Conference and ASCO SITC

As February comes to a close, we’d like to look back on the conferences we attended this month: the Canadian Melanoma Conference and the American Society of Clinical Oncology (ASCO) meeting in Orlando, Florida!

Here is a sample of our social media from these conferences!

Canadian Melanoma Conference

 

ASCO Florida

 

 

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Save Your Skin and Giving Tuesday

On November 29th, Giving Tuesday is coming to Canada! A compliment to Black Friday and Cyber Monday, Giving Tuesday is a day that stimulates the community instead of the economy by facilitating donation to thousands of charities across Canada.
There are many charities worth donating to on Giving Tuesday, and we always encourage helping your community by donating. If you are considering donating to the Save Your Skin Foundation, we thank you– and would like to fill you in a little bit on what we’re up to, and how your money would be used.
First and foremost, the money donated to the Save Your Skin Foundation goes to melanoma patients. The primary goal of SYSF is supporting families during the worst time of their lives; therefore we want the cancer patient and their family to be able to focus on the fight against melanoma, by alleviating the financial strain of cancer treatment. Whenever possible, we offer monetary assistance for transportation, accommodation, and food costs to melanoma patients travelling for trial treatments. Emotional support is equally a priority– Save Your Skin Founder Kathy Barnard is approachable for advice and support from someone who has been through the melanoma journey. Kathy Barnard’s knowledge of the treatment landscape and connections with Oncologists, Dermatologists, and other medical professionals is often helpful to patients who are unsure of how to navigate the medical system, such as finding treatment options and preparing for appointments. We also strive to make our websites Save Your Skin and I’m Living Proof hopeful, informative, and supportive, as the internet is often a discouraging place to look for those fighting melanoma.
The Save Your Skin Foundation represents the patient voice on the national and international level with its presence at conferences and meetings in Canada, the United States, and Europe. Nationally, Save Your Skin regularly meets with government stakeholders, pharmaceutical companies, and medical professionals to bridge the gap between these groups and the melanoma patient. Medical knowledge is further imbued to the patient via our educational YouTube video series, and our Webinars. These webinars feature a wide range of topics and guests, from medical professionals to melanoma survivors, and live recordings of past webinars are available on our website. Further, in 2017, Save Your Skin intends to develop an immuno-oncology network for medical professionals, advocacy groups, and the melanoma patient to further assist the patient in navigating immuno-oncological treatments, a recent and exciting development in the melanoma landscape.
Due to these incredible advances in medical technology and trial treatments in the past decade, we are pleased to report that melanoma survivorship is at an all-time high. From this new group of melanoma survivors, we are learning that the fight with melanoma doesn’t end at remission. Save Your Skin has taken several steps to be supportive of melanoma survivors, including the I’m Living Proof initiative, which allows melanoma survivors to tell their stories and connect with each other, and melanoma patients; we often include survivors in webinars and forums we are involved in hosting; and in 2017, we are intending to launch our Melanoma Survivorship Pilot Project, which will include national media campaigns, a survivorship e-book, a survivor survey and report, and a microsite. We also intend to host a survivorship meeting in the Spring of 2017, to ascertain how the needs of survivors are being met and what improvements could be made.
We’re looking forward to Giving Tuesday, and hope you will consider the Save Your Skin Foundation when you are selecting the charities to whom you will donate. If donating is financially a stretch, you can still participate by volunteering for Giving Tuesday, and tweeting with the hashtag #givingtuesday to spread the word! Thank you for reading, and happy giving!

Donate to Save Your Skin via Giving Tuesday here

GivingTuesday Countdown

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Shoutout to Slyde Handboards for Their Generosity!

Blog re-posted from the Slyde Handboard Website, October 22 2016

SLYDE AUTOGRAPHED MARK CUNNINGHAM BOARD RAISES $280 FOR SKIN CANCER AWARENESS

SLYDE HANDBOARDS BELIEVES IN DOING GREAT THINGS, AND GIVING BACK IN BIG WAYS.

Carlos our team rider from Canada recently completed a 365 day watermen challenge. In which he wave rode every day for 365 day without fail.

The challenge in effort to raise awareness and education for skin cancer.  The most common type of cancer, and one dear to Carlos’s heart as his father Marcel passed away from the disease.

Slyde alongside Raw Elements USA honored Carlos’s epic effort and his father by auctioning off an autographed Mark Cunningham Handboard & natural sunscreen package, with all proceeds going to Save Your Skin Foundation of Canada.

The auction saw a ton of action with the winning bid of $280 going to South African native Clint Buckham.

Thank you Clint for your generous donation, and everyone who participated.

REMEMBER TO SAVE YOUR SKIN AND  THOSE AROUND YOU, APPLY YOUR SUNSCREEN AND STAY PROTECTED BEACH LOVING FRIENDS.

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Why Save Your Skin Foundation?

Written by Natalie Richardson

 

This has been the most exciting few weeks I have had since I was diagnosed with metastatic melanoma. I feel an optimism unusual for my character since finding a potentially deadly mole on my hip in April 2014, when my world came crashing down with fear and worry. After surgeries and immunotherapy treatments, my body and my mind were left confused and full of dread.

I remember the exact moment I embarked on the path that would eventually lead me back into a productive life, with hope and determination as my new leads. Though I did not know it at the time, my discovery of Save Your Skin Foundation was a saving grace.

Depressed by internet searches about this disease, I relied solely on the word of my oncologists to guide decision-making in my care. Thankfully, I was fortunate to have an excellent medical team with a finger on the pulse of current treatments and clinical trials. My family and I did seek second – and third – opinions at Centres in Ontario, and I felt as secure as I could possibly be, choosing the course of my treatments with their guidance, via clinical trial.

By randomized-draw chance I received the treatment that I may always credit with saving my life, and I am grateful for that. But to this day I ponder what may have happened had I been on the other side of that trial draw. It bothers me, keeps that fear lingering. Not only fear for myself, but for others who may face the same risks that I have, and may not receive the same care. What if someday, my children were to face this diagnosis and did not have access to treatment?

In researching this question, I came upon a website with a warm first impression and a vastly informative set of links and options. I clicked and read and explored, not once feeling intimidated. I had to know more… the moment was right, and I had stumbled upon the right place: Save Your Skin Foundation.

I called the number, immediately reaching Kathy Barnard, melanoma Survivor, and Founder of this Foundation. Her distinctive voice put me at ease, and we talked about my situation and how fearful and alone I felt. She told me of her experiences with treatments, and I shared mine. She knew my medical oncologist as well as many others across the country, and she told me about new therapies on their way toward fighting melanoma skin cancer.

She determinedly said “You’re going to be okay.” And I believed her. I felt she might be right. She had run the gamut and come out the other side, and she understood what I was talking about.

My loving friends and family had been telling me that I would be all right, but when Kathy said it, it was different. My loved ones wanted it to be all right, but Kathy knew that there was actually a possibility that it WOULD be.

I have since learned that it is this determination and experience that has led Kathy and her family to build an educated team, in the form of a Foundation, to help others in this way. Many patients are touched by the support of this group; many lives are saved.

Emotionally and physically, Save Your Skin Foundation is there for any and every Canadian touched by skin cancer, whether it be a pre-cancerous lesion or a diagnosis of advanced metastasis. They share their experience, they research every medical detail, they work every day to help those in need of support in a skin cancer battle.

Since that day I first spoke with Kathy, I felt safe. I was comfortable looking around her website, watching the webinars and reading the notes carefully assembled. It remains a safe and reliable source of information about every stage of skin cancer.

Having gravitated to it for a year and a half, I have been dedicated to helping Save Your Skin save MY skin! And that of others. We network, collaborate, and identify with each other in a way that perhaps only those in our shoes can understand. It is a community of support available to those who need it.

It is at their invitation that I have had the inspiration to share my story so openly, encouraged in campaigns such as #NotJustSkinCancer and the Melanoma Through My Lens Reflection
Project. They have been a huge part of my rehabilitation, right down to the gentle reminders that I CAN still do the things I feared I had lost after diagnosis.

I feel great responsibility in being able to represent Save Your Skin in these kinds of projects, and at the same time I feel equal duty to represent fellow melanoma warriors, patients, families, and friends travelling their own skin cancer journey.

It’s the least I can do, in return for this gift of support and hope that I have been given. Thank you, Save Your Skin Foundation.

unBeachMantraWall_8x8

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A Thank You from Melanoma Caregiver

a_hand_of_light_in_the_dark

Written by Connie, wife and caregiver to her husband and melanoma patient, Ted.

A year ago my husband was diagnosed with Stage 4 melanoma with metastases to the lungs.  Our world suddenly and drastically changed where fear and worry took over our days.  In a whirlwind of appointments and consultations it became apparent that there would be numerous tests, scans, followup appointments and overnight trips that would take us to a specialized oncologist.  Of course there was the chemotherapy as well.  Once things became somewhat routine like, if I may be brave to say so, of just becoming a new norm the other part of life began to take over.  Suddenly, I became the main income earner for my family along with caregiver alongside being a mother.  How were we going to get through this?  Or, how was I going to get use to looking at my husband daily crying inside with the thought of losing him to this dreadful disease?  Living in a very rural and remote area I had no options for caregiver support, I had no family support and so I stood alone in my rollercoaster emotions trying to be strong and positive for my husband.  Then one day I came across the Save Your Skin Foundation and met 2 incredible people, Karran Finlay and Kathy Barnard.  These 2 people reached out to me from a distance, listened to me and in doing so I began to feel hope and renewed strength.  I suddenly felt that maybe I wasn’t alone and I continue now to feel this way as I know in my heart that they are there and will continue to be so as the journey of fighting cancer continues with my husband.

Right now there is not a lot I can do to give back to this incredible Foundation and these 2 beautiful, compassionate women, but I can write this to say THANK YOU!   To say that without them, I as a caregiver would be totally lost and in despair.  To say THANK YOU for not ignoring me, for listening everytime I email or phone, for never being too busy to open your hearts!  THANK YOU!

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