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Updates on our Support of Mental Wellness After Melanoma Diagnosis

In the summer of 2017, Save Your Skin Foundation conducted a patient survey seeking insight on the emotional and psychological impact of a melanoma diagnosis, in order to expand on our personal experiences and to learn how we may be able to help improve support systems for patients and survivors across Canada.

Since the release of the report from that survey (click here to read the report), we have developed a poster for display during our upcoming attendance at the 12th Annual Canadian Melanoma Conference (February 2018). This poster is titled:

THE AFFECTS OF MELANOMA ON THE MENTAL WELLNESS OF PATIENTS, AND THE LANDSCAPE OF MENTAL HEALTH SUPPORT IN THE CANADIAN MELANOMA COMMUNITY

We welcome the discussions that the information in this poster will inspire, and we will continue to bring voice to the challenges that are faced by those who are touched by melanoma skin cancer.

To read the poster we have created from the survey results, please click on the image below to view it in PDF format, in which you will be able to zoom in on the small text and graphs.

The survey was conducted in English using the SurveyMonkey online platform. It was also made available in French for Quebec residents. The English survey was open from August 21, 2017 to September 25, 2017; the French survey was open from August 28, 2017 to September 25, 2017. There were 28 participants in the English survey, and 19 in the French survey. French to English translations were largely performed by our in-house translator, Danika Garneau. The English and French results are combined for the purpose of this project. The poster will provide an overview of the survey results.  For any feedback or questions, please contact natalie@saveyourskin.ca.

To view the complete survey responses, please click here:
Save Your Skin Foundation Mental Health Survey 2017 – English
Sondage sur la Santé Mentale de la Fondation Sauve Ta Peau 2017 – en Francais

Stay tuned for updates on our work in mental wellness and self-care after cancer diagnosis. 

 

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Opening Our Eyes To Ocular Melanoma

Guest blog by our friend: Nigel Deacon, ocular melanoma survivor and patient advocate.

Ocular melanoma

Welcome to the Save Your Skin Foundation website. You are probably here because you or a loved one have been diagnosed with ocular melanoma. It is a big shock to get this news and you are doing well by looking for reliable, sensible, understandable information and guidance.

If you have not yet had treatment, your timing is excellent. Having good information beforehand will be very helpful to you as you discuss the disease, and your options, with your ocular oncologist.

You probably know already that this is a very rare cancer. Fewer than two hundred Canadians per year are diagnosed. It is really important to know as much as possible about how your cancer has presented. How large is the tumour in your eye? Where exactly is it? Both of these pieces of information can make a big difference to your plan. Ask for the reports that your ocular oncologist has, and keep them carefully in a file for future reference. The language is foreign at first but you will quickly learn to be proficient.

Perhaps a good thing to know, as you start the journey, is that half of the people treated for a primary tumour in the eye are then cancer free and that cancer will not spread any further. You will need continuing care of your eye by your ocular oncologist, to preserve as much vision as possible, for health, comfort, or aesthetic reasons, and to be vigilant in case the cancer returns.

(If it turns out that your cancer returns and spreads, please read the section below dedicated to providing information about that.)

As you discuss your disease with your ocular oncologist, please be fully aware that a biopsy of your tumour at the time of treatment holds the secrets to your future. You can find out whether or not your cancer is likely to spread. If you are in the happy 50%, imagine the relief. If you are in the unfortunate 50%, your care plan will be different and early detection gives you much better chances for prolonging your life. Either way you derive benefit.

Some people are frightened of the information. It seems like too much information to have and denial might seem like a better option. Please consider the benefit of having the information. If you don’t want to know, perhaps you could ask your oncologist not to share the information until you are ready, but at least you have it to use it for planning care. The biopsy cannot be performed after the treatment.

It is important to note though that the testing is not 100% accurate as yet and planning for surveillance needs to take that into account too.

For sure, consider joining other patients in a group that is in the same situation as you. There are several different groups to choose from and you should easily be able to find a group that you think is helpful to you. Your participation can vary over time. Meet your own needs for information.

Click here for a list of resources and patient groups to help you

 

Metastatic ocular melanoma

Oh dear. You are probably reading this because you have been given some very sad news. Well, we have to try and make some sense of it. Has your eye cancer (ocular melanoma) been detected in another part of your body? What do you know so far?

Here are some important questions so you can check if you have the answers:

  • Where exactly has the cancer been found?
  • Have you had a PET scan to see if cancer is in other places too?
  • Have you had an MRI (with gadolinium) of the liver to gather the best information?
  • Have you had a biopsy to confirm that it is indeed melanoma?
  • How many tumours are there?
  • What are the exact dimensions of the tumours?
  • Where exactly is each tumour located?
  • If it is in the liver (90% of metastases are found here first), what percentage of the liver is affected?
  • If it is in the liver, is there evidence of miliary disease (peppering, or spots, all over)?

 

If you know the answer to some or all of the questions, you are ready to read on. If the cancer is in the liver (most likely) it is important to focus on liver directed treatment first. Is your oncologist offering radioembolization, immunoembolization or chemoembolization? In rare cases, surgery may be an option. It is possible to have systemic treatment (see below) at the same time as liver directed treatment if your body is well enough. Focussing on the liver is most important though as liver disease is life threatening.

If the cancer is outside the liver, is your oncologist offering you immunotherapy? This is considered a systemic treatment.  There are several variations of this offered in Canada. You can read about which variation is most effective and why. If you are being offered chemotherapy, be very wary. For more than 30 years, patients have been offered dacarbazine as first line therapy and it is clearly proven to be ineffective for ocular melanoma. Treatment options have increased greatly.

If you are in a part of Canada where it is difficult to get treatment for this rare disease, will your oncologist refer you to a larger centre? You may have to fight for this.

Can your oncologist help you enrol in a clinical trial? There are several promising clinical trials recruiting but it is hard for Canadians to get into them. You can enrol if you try really hard. Timing is very important. Sometimes, the window of opportunity closes quickly. You also need to ask whether this particular treatment can bar you from others down the line.

Nigel at the Boston Finish

 

 

Reach out to others who know about the disease or are living with it. We are not alone.

Consider making other changes in your life that help all cancer patients. Sort through your priorities and focus on what is most important. Reflect on your diet and lifestyle and see if you want to make changes there. Diet will not cure cancer but it can certainly help you feel better and stronger.  Try to spend as much time in nature as you can.  Do what makes you happy.  Avoid pursuits that bring unhappiness. Know yourself and what is important to you.  Lean on good friends.  These are just sensible changes to consider.

 

More resources and support: Ocumel Canada, an initiative of Save Your Skin Foundation

 

 

 

NOTE – August 22, 2018: 

Save Your Skin Foundation is looking to improve and increase support of Canadians experiencing diagnosis of primary and/or metastatic ocular melanoma. To this end, in Feb-2018 we launched a survey to be shared across Canada, hoping to reach as many as possible.  The survey is now closed, and we appreciate all of the responses we received, and all of the sharing that our readers did to spread the word about the survey.  We have now completed the report and are working on next steps.  Please click here to read the survey report:  Save Your Skin Foundation Patient Survey: Understanding Ocular Melanoma in Canada

 

Thank you

 

 

The information in this blog is not intended to replace the medical advice of a doctor or healthcare provider.  The content in this blog is based on Nigel’s personal experience and extensive research in Canada and abroad.  If you have any questions about what you have read here please do not hesitate to ask your doctor, and/or you can contact us and we will help to connect you to further information. 

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Melanoma Patient Support Group Webinars

All patients, survivors, family members, and caregivers are invited to join these informal monthly webinars to connect with other patients and survivors across Canada.        Join one or all three:
Thurs, February 1, 2018
Thurs, March 1, 2018
Thurs, April 5, 2018

5pm PST | 8pm EST

We know the importance of having a good support network during difficult times. This is why we decided to organize a recurring support group by Webinar. Although melanoma patients and survivors are scattered all over Canada, these webinars will allow them to talk to others going through similar experiences from the comfort of their own home.  Founder Kathy Barnard will be in attendance, along with other members of the SYSF team. Whether you’re a patient or a caregiver, we hope that you will take part in this virtual discussion around melanoma, treatments, and hope.

CLICK HERE TO REGISTER

Within 48 hours of registering for this webinar, you will receive an email from natalie@saveyourskin.ca providing you with the link and dial-in details for this group call in gotoMeeting. You will be able to choose if you wish to share your webcam with all participants, or participate in call-in mode only.

Thank you, and hope to chat with you soon!

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Giving Hope Gala & Auction, May 10th, 2018, Toronto

You can support the work of the foundation and help provide emotional and financial support to Canadian melanoma patients in need by attending our Giving Hope Gala & Auction.

 

Enjoy buffet-style tapas and served hor d’oeuvres, while sipping on cocktails and nibbling decadent desserts – all while supporting an important cause. The fun will include an interactive photo booth, music, press corner, informative placards, printed takeaways, a goodie bag, and the debut of our new 2018 patient fundraising video.

This one-evening event in Toronto will provide up-to-the-minute information on melanoma statistics in Canada, a recap of sun safety and skin cancer prevention methods and initiatives with our founder Kathy Barnard, the Save Your Skin team, and local stakeholders including physicians, patients, supporters and partners.

 

 

This year, over 1,200 Canadians will lose their lives to melanoma skin cancer.  

With incidences of this disease on the rise, awareness, education, and patient support are more crucial than ever.

Please help us make a difference.

 

 

For 2018 Giving Hope Gala & Auction sponsorship inquiries, tickets or questions, please contact Natalie at natalie@saveyourskin.ca or call 1-800-460-5832

 

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Webinar: About BioSimilars

As a kick-off to our 2018 webinar series, Save Your Skin Foundation presents:

About Biosimilars: What We Know and What We Want to Know

Friday, January 19, 2018 at 1pm – 2pm EST | 10am-11am PST

Presenters: Louise Binder, SYSF Health Policy, Cathy Parker, Director Policy and International Collaboration – Health Canada, and Helen Mai, Policy and Strategy Advisor, CADTH.

This webinar will be a panel discussion on Biosimilars in oncology, the approval process, and the potential policy position for oncology drug reimbursement. Discussion Points will include Health Canada’s review and approval for sale, CADTH’S role in this area and their involvement with pCPA, and potential policy objectives and position for oncology drug reimbursement.

Updated January 23, 2018:

Missed the webinar?  Listen to a recording of the presentation here, or view it on our youTube channel here.  Also please click here for a page of Resources regarding Biosimilars.

 

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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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Holiday Melanoma Patient Support Webinar

Join our Holiday Patient Support Webinar on Thursday, Dec 28, 2017 at 1pm PST | 4pm EST.

All patients, family members, and caregivers are invited to join this informal, free webinar to share and connect with patients and survivors across Canada.

Click HERE to register

Save Your Skin Foundation knows the importance of having a good support network during difficult times. This is why we had the idea to organize a support group by Webinar. Since we are scattered all over Canada, we thought it would be a good idea to be able to talk to people and hear them, but in the comfort of your own home. Founder Kathy Barnard will be available to discuss, along with other members of the SYSF team. Whether you’re a patient or a caregiver, we hope that you will take part in this virtual discussion around melanoma, treatments, and hope.

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The Save Your Skin Foundation Story – A Niece’s Perspective

You may have read the Save Your Skin Foundation’s story on the Foundation’s website here…but, as you probably know, everyone has their own story – and Founder and President, Kathleen Barnard’s niece has kindly shared one of her own. Thank you for your inspiring and beautiful story Taylor!

“In May of 2003, I wanted to be an astronaut; a pretty common dream for a child of ten. A less common aspect of my “studying” to be an astronaut was that it was all practical. On any given night you could find myself and Kathleen Barnard – my aunt, neighbour, and favourite person in the world – on her back deck, drinking hot chocolate while I pointed out constellations to her. Also in May of 2003, Kathleen was diagnosed with stage three malignant melanoma.

Melanoma is the most aggressive form of skin cancer, the result of a life spent outdoors. For Kath, this was often on a baseball diamond, either playing or coaching the team of myself or one of her two sons. The cancer manifested itself in a tumour on Kath’s arm, the size of which my family (myself excluded, as I was ten and oblivious) had been watching anxiously. Upon hearing the news, I can assume that Kath was as flawlessly optimistic as she has been every day since. I can confidently say that the only hope or happiness any of us had in that time was in watching Kath’s determination to beat the disease, and her strength has inspired all of us to be stronger in our own lives.

The first form of treatment Kath would undergo was Interferon, which involves a self-injection three nights a week for a year, accompanied by the side effects of hair and weight loss, and flu-like symptoms. Not a process for the faint of heart. Here, I should mention that I was only told about Kath’s illness after she had begun receiving treatments, when her physical changes were going to become too obvious to ignore; the fact that I had no idea that this was going on before she told me, demonstrates how strong she was, continuing to live her normal life by going to work and continuing to coach my softball team for as long as she could. After her year of treatment, we received the news that she was cancer free, and all of us, Kath especially, looked forward to resuming our normal lives.

A year later, in the May of 2005, one of Kath’s checkups revealed a tumour on her lung. Not only had the cancer returned, but had advanced to stage four: the most aggressive stage. This time, Kath underwent Chemotherapy. I was growing older and more terrified at the prospect of losing my aunt, and my life essentially consisted of crying in bed, then crying in my mom’s bed, then getting up and crying at school. Kath’s attitude, however, juxtaposed all of ours; she hosted family dinners and trips to Whistler, getting us all together as much as she could. She would always have some surprise up her sleeve, such as bringing a collection of children’s musical instruments to make a family band (I’m not joking), or Christmas crafts for us to do in Whistler. Even while there was talk of removing her entire lung as the tumour grew, and as her cancer metastasized to her kidney, liver, bones and ribs, she never lost her smile, or showed us how exhausted she must have been.

After extensive and desperate google searches, my cousin found a Doctor in Edmonton who was running a trial drug called Interleukin. The drug had showed positive results in 16% of trial subjects at that point, and no one had yet survived the entire treatment. The trial required Kath (and another member of our family-her husband, one of her sons, or my mom) to fly to Edmonton every second week to spend the full week in intensive care, receiving the drug though an IV every eight hours. While I never went with Kath (though I donated all my pocket money to her flights!), I gathered that the side effects of this treatment included nausea, weight gain, a rash, and low blood pressure. To help herself persevere through the treatment, Kath would write something on each bag to inspire her: things like the names of her family, friends, the girls on my softball team, future vacation destinations. She never complained; on her tongue instead were a million reasons her fight was worthwhile.

After four rounds of Interleukin, Kath was finally declared to be in remission. However, instead of trying to push the thought of cancer out of her mind, Kath and her amazing sister (and my mom) Rosemary decided to start the Save Your Skin Foundation. The fact that you are reading this anecdote right now proves that Kath’s enthusiasm paid off, and the foundation is successful. The Save Your Skin foundation seeks to promote the prevention of skin cancers, such as melanoma, via education and awareness. It also helps provide families struggling with the disease with personal and financial support in finding trial drugs. In short, the Foundation tries to prevent other families from going through what our own family did.

Unfortunately, the struggle was not over for Kath. In 2007, a CT scan showed the presence of a tumour in her small intestine. It was stage four malignant melanoma again, and Kath was immediately hospitalized and given an invasive surgery to relieve the pressure on her intestine. Her surgery and re-starting treatments did nothing but increase Kath’s drive to make sure the Save Your Skin Foundation was a success. She began putting together a Save Your Skin booth at local events, run by our family and friends, to get the Foundation out there as much as possible.

By February of 2008, Kath was flying back and forth between Edmonton and Vancouver again, but this time every twenty-one days and to receive the new trial immunotherapy Yervoy. She had been given four rounds of Yervoy when a new tumour was discovered in her kidney – an organ that she had to have removed in January 2009. After countless late night tea and creamsicle runs, it was over. That surgery, and January 2009, marks the date when Kath’s real remission began, and she has been cancer free ever since.

Since 2006, Kath has worked tirelessly to help the Save Your Skin Foundation grow, and I am pleased to report that it is now an international organization. Along the way, Kath and Save Your Skin have helped so many families who are lost upon receiving their diagnosis. A look at the ‘Survivor Stories’ and ‘Memory of our Friends’ section of the SYS website demonstrates how much amazing work Kath and Save Your Skin has done. I have truly never seen someone so passionate about their work, which is even more impressive when this person should be exhausted.

I am so honoured to be involved in such an important organization, so proud of my aunt, and so endlessly thankful that she’s still here with us. Though I no longer want to travel to space, I’m very grateful that Kath and I are still able to drink hot chocolate on the back deck and look at the stars.”

Thank you again for your story Taylor!

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I’m Living Proof Connects Melanoma Patients and Survivors

When Save Your Skin Founder Kathy Barnard was diagnosed with Metastatic Malignant Melanoma in 2003, the first thing she did was look to the internet for anything that would inspire optimism for her prognosis; hopeful news, survivors, or treatment options. She didn’t find much.

From this experience was created the “I’m Living Proof” initiative and website, intended to provide a wealth of information, resources, and support to those touched by cancer, while also connecting patients and their families to a community of survivors who have shared their stories. This initiative was borne from Kathy’s desire to ensure that those diagnosed with melanoma know that surviving melanoma is possible –“I’m Living Proof”.

Visitors to the site are encouraged to read participating patients’ stories, and they are given the option to connect with these patients via a secure form privately shared between the Save Your Skin Foundation team in collaboration with the person wishing to connect with other patients or survivors.

An interactive map serves as a method for patients and survivors to reach people across Canada and around the world.

 

On the map we use stars to represent survivors; we do this to inspire everyone already diagnosed, and those who will be diagnosed, to reach for the stars because there is hope for survival. Those of us surviving melanoma today are living proof of that. We also hold stars close to our heart as we remember those we’ve loved and lost to melanoma. These individuals are our stars in the sky, which is why Save Your Skin donates an actual star to the family of every melanoma patient we lose with a connection to the foundation.

To give you a bigger and better interactive map for which to connect with other patients, we have moved the former I’m Living Proof website to be housed right here under our very own SYSF site. Click HERE to see the map!

 

Please feel free to check out our map and click on the stars in locations across Canada to read the stories and see videos of fellow melanoma survivors.  If you feel you would like to speak with one of these folks, you can fill out a quick form and we will send your request to the person you wish to meet via email.

If you would like to share your story and join our support community via a star on the map or otherwise, you can click here to fill out a quick form to let us know you’d like to be in touch.

Tell us a little about yourself!  And what you think about this program.  We are here to help: Hand in hand we fight melanoma together. 

Welcome!

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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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