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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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This Melanoma Awareness Month, Don’t Forget Sun Safety!

Every May is not only Melanoma Awareness Month, but also the beginning of sunny weather and summer plans. This year, while we are sheltering in place, going to the park or for a walk can be a great way to improve your mood; however, it is important to make sure that you are not only socially distancing, but also taking sun safety measures. 

In 2019, the Canadian Cancer Society estimated that of the 220,400 new cancer cases in 2019, 7,800 were melanoma (p. 25). Melanoma counts for 7% of cancer diagnoses for both the youth/young adult (15-29) and adult (30-49) demographics, as per a distribution of new cancer cases (for selected cancers) by age group in Canada (excluding Quebec), in 2011-2015 (p. 14). While the incidence rates for melanoma are not as high as other types of cancer, the mortality rates are substantial: of the 82,100 projected cancer deaths in 2019, 1,300 are expected to be due to melanoma (p. 47). Therefore, it is important to be vigilant in protecting yourself when you are outside in the sun, even if it is a quick trip.

It is true that certain populations are more at risk of developing skin cancer, such as those who have skin cancer in their family, are fair-skinned, or are taking any medication that may suppress their immune system; however, anyone who had frequent or extreme sunburns in adolescence, or continues to spend prolonged, unprotected time in the sun, is dramatically increasing their risk of developing skin cancer, as every sunburn is indicative of skin damage. While some of these circumstances are unavoidable, it is possible to reduce your risk of skin cancer by taking the following precautionary measures while enjoying your time in the sun. We encourage you to share these tips with your friends and family by sharing our Sun Safety Awareness Resources page, which has links to several helpful online and print guides to sun safety and skin cancer awareness.

Prevention

The most important sun safety tip is to limit your exposure to it. Enjoy the outdoors, but take these precautions:

 

 

 

 

 

 

Sunscreen is also your ally. Here are some tips:

  • Carry a travel-sized sunscreen and an SPF lip balm with you at all times, so you are always prepared
  • Get a sunscreen that is at least SPF 30 and offers UVA and UVB protection
  • Apply your sunscreen 20 minutes before going out in the sun
  • Reapply your sunscreen every two hours
  • Cream or lotion-based sunscreens provide better coverage than sprays
  • Make a list of the places you often forget, and cover them first– often-forgotten spots include the tops of feet, backs of hands, neck and ears

 

 

 

 

 

 

 

 

 

 

 

 

 

Before going out, don’t forget to consult the UV Index rating in your area. You can also download UV Index apps such as the UV Index Widget or the Wolfram Sun Exposure Reference App. Use guide above to help you interpret UV ratings.

Detection

Throughout the year, it is important to give yourself a self skin-check once a month. If you have a partner, perform them for each other. Take photos of, or write down, any existing moles, so you have a reference in case of any changes. To ensure that you do not miss a spot, visit the Skin Cancer Foundation guide to self-exams. If you see any changes in a mole, any new growths or moles, or you develop a sore that does not heal, get in touch with your health practitioner as soon as possible– it never hurts to be cautious, and earlier detection means earlier treatment. 

When checking your own skin or that of your loved ones, keep in mind the “ABCDEFG’s” of skin checks:

  • 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 – Colour that is uneven. Shades of black, brown, and tan may be present. Areas of white, grey, 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. Is the mole harder than the surrounding skin?
  • G – Growing. Is the mole gradually getting larger?

While checking your skin for moles, you should also be keeping an eye out for actinic keratosis, also known as solar keratosis. Actinic keratosis generally develops in older people on sun-exposed areas of the skin. Actinic keratosis feels like a rough patch on the skin, and may become visible as red scaly patches; it is often confused with eczema. It may feel tender to the touch. If left untreated, actinic keratosis may develop into squamous cell carcinoma.

 

 

 

 

 

(“Actinic Keratosis.” Scars Center.)

When you are spending time outside this summer, do not forget to take sun safety precautions. Stay safe out there!

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Heather’s Story


Saskatoon, Saskatchewan

I was diagnosed with stage 4 melanoma in July 2017. In August I started nivolumab, of which I had a total of twelve treatments. After the fourth treatment the tumours expanded and caused a blockage in my bowel. I lost about 40 pounds and refused surgery, and in a week the tumour shrank. I was eating and lifting one pound weights to try to get some muscle. I continued treatment till February, when a sinus infection got out of hand and I had half a cup of black pus removed from my sinuses. At this point, I also developed macular cystoid edima in both eyes, and lost my sight. I had it treated, and my sight returned, though I need glasses. At the worst I was seeing 20/200; now I’m at 20/40.
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I had two more treatments in March, then stopped because CT scans showed that it wasn’t working. I had one more CT to give a baseline to track the progress of the cancer; that CT showed only two spots of scar tissue and no cancer. That was April 2018. My husband and I have celebrated our fortieth anniversary with our entire family, canoed, zip-lined, climbed a pyramid, gone swimming with dolphins, and attended all of the sport and music events of our grandchildren since then. Life is good, and I’m enjoying every minute of it.
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Chris’ Story

Abbotsford, B.C.

Early Signs

My story began sometime during the summer of 2017.  I had been experiencing lower back pain for a few months that nothing seem to relieve, but could, like anyone in their mid-forties, be attributed to any number of things.  Then, one Friday evening late that November, I felt an intense pain on my left side, just behind my lower ribs that dropped me to the floor.  The intense pain lasted only a few minutes, but things never felt normal after that.  I went to my GP the following Monday after being sent home from the ER that weekend with an all clear. He immediately sent me for bloodwork and an ultrasound of my gallbladder, suspecting I may have stones.

Detection

I knew something wasn’t right when the ultrasound technician asked me to roll onto my side so she could take a look at my kidneys.  She took an awful lot of pictures, and typed way too many notes for it to be a simple case of gallstones.  I was at my GP’s office at 7:30 the next morning to get the results, and the ultrasound showed 3 liver lesions and large masses on both adrenal glands.

The Diagnosis

The week before Christmas 2017, I had a biopsy done of the largest liver lesion, that to everyone’s surprise, confirmed melanoma.  I was terrified because all I knew about the disease was that it was deadly and I knew nothing about the new lifesaving immunotherapies.  Additional CT and MRI scans confirmed that the disease was very advanced and the tumor burden was intense, with many of them doubling in size since the initial ultrasound.  At one point, an oncologist said that it would be easier to list the areas not effected then to list what was.

The ER

The lower back pain began to intensify, but I had very little idea of what was going on.  My overall health was deteriorating quickly and I had started to plan for the worst.  On January 20, 2018, I had gone to bed in such pain that I could not sleep.  Just after 1:00 AM, I asked my fiancée to take me to the ER due to the intensity of the pain.  I remember walking into the ER and sitting at the triage desk when a nurse, named Grace, took one look at me and said “we need to get him to the back now”.  Next thing I remember, I am waking up on a gurney with 5 nurses trying to get my clothes off, checking my vitals and trying to start an IV. It wasn’t until I saw the saw the fear and sadness in my fiancée’s eyes that I put the situation into perspective.  It was at that point that I realized I was partially paralyzed from the waist down.  The paralysis was caused by tumor growth on my hips and pelvis that impeded both sciatic nerves simultaneously.

Things were so bad at this point, the ER doctors admitted my fiancée and put her in a bed beside me, thinking my journey was coming to an end.  They put me on steroids to reduce the inflammation, and within days I was receiving radiation treatment to my hips and pelvis to try to alleviate the pressure on my nerves.  Amazingly I was up and walking in just days, but it took a month for the full feeling to come back to my legs and groin.

The Staph Infection

Well, you guessed it, I supposedly contracted a staph infection during the week I was in the ER fighting to save my legs.  This was discovered by a blood test, but the location of the infection was never confirmed by either a transesophageal echocardiogram or a full body MRI.  But there was no taking chances, and high dose IV antibiotics started immediately.

The Game Changer

My best guess is that just weeks before the melanoma took my life, I received my 1st combination does of the lifesaving immunotherapy Opdivo (nivolumab) + Yervoy (ipilimumab).  I would be the 1st person that my oncologist knew of who would be treated for a staph infection and be given Opdivo (nivolumab) + Yervoy (ipilimumab) simultaneously.  The 1st couple weeks were a struggle and I felt like I was literally fighting for my life.  My body could not regulate its own temperature, which fluctuated between 36.2°C and 38.8°C, and the cancer was eating a hole through my sternum which hurt so much I couldn’t sit up without being in excruciating pain.  I was covered from head to toe with the itchiest rash I have ever experienced.  I was very thankful to have my brother and father by my side to wake me up every 4 hours to take pain meds and Tylenol, cool me down with cold compresses when I was too hot, and yes, to empty my home made urinal because there was no way I was making it to the bathroom.

2022 Updates

This year has been a challenging one with plenty of bumps along the way.  I have found dealing with the recurrence to be more mentally challenging than the original diagnosis.  When a successful treatment suddenly stops working, you cant help but panic, especially when the only other options are clinical trials or major surgeries.  In July 2022, I was accepted into a very promising trial run by a leading melanoma oncologist out of Princess Margaret Cancer Clinical Research Unit in Toronto.  The trial required participants to have two or more active tumours so one could be surgically harvested, sent to a lab in the USA where they rapidly reproduce the Tumour Infiltrating Lymphocytes (TIL), fly the cells back to Canada where they would be intravenously reintroduced into my body.  On August 30, 2022 I had my left adrenal gland and it’s 3 CM tumour surgically removed and sent to the newly set up lab in Texas.  The surgery was challenging due to previous radiation treatments, and although considered successful, the lab was unable to produce the cancer fighting lymphocytes.

Currently I am working with a surgical oncologist out of Vancouver who has agreed to remove my remaining adrenal gland along with its 9 CM tumour as long as there is no active disease elsewhere in my body.  She has referred me to an endocrinologist to educate me on what life may be like without functioning adrenals.  This option will only be considered as a last resort, but it seems that I am running out of other options.  I have a CT scan scheduled for February 2nd and the hope is that things have remained stable so I have time to wait for some of the new treatments or another trial to come available.

After sharing all this, I want everyone to know that my spirits are still high and am far from throwing in the towel. I will be participating in a 4th edition of A Viking’s Challenge this March 4th on Lake Winnipeg and challenge everyone else to lace up and get active to support Save Your Skin Foundation. I plan on being in Gimli for the weekend, but you can participate anywhere and any way.  I haven’t run since before my surgery and have no idea what I am capable of with my surgery related hernia, but I promise to give it my all!

 

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Tanya’s Story

St. Albert, AB

In June 2016 I went to get a mole on right shoulder checked, as it had been rubbing on my sports bra and was becoming irritating. I was a newly certified fitness instructor, and I was on top of the world.
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The same day that I went to get my stitches from the mole surgery removed, my doctor had the results: the mole was malignant melanoma. The next month, I had my first meeting with Dr Salopek, a melanoma specialist. He recommended a wide excision and a sentinel lymph node biopsy, which I received in August 2016, however, only tissue was actually obtained in the biopsy, and no lymph nodes were actually taken. The results came back undetermined.
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In March 2017, I had an ultrasound, followed by a biopsy three days later. After these tests, it was determined that my melanoma was stage III. At this point, I needed a radical lymph node dissection. I took 25 days off from teaching fitness, and went back to the gym as soon as my drains were removed. The test proved that 3 of my lymph nodes were metastatic, however that was only 3/30 so 97% came back clean!
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This diagnosis meant that I would need to begin treatment in the form of a clinical trial with Dr. Symlie. In December 2017, I was taken off this trial after it was deemed ineffective for me. I then had one treatment of Nivolumab, however my scans following that treatment revealed that the nodules in my lungs had started to grow, moving my melanoma into stage IV. I then had a lung biopsy. Two weeks later, I began Keytruda, and continued to take classes and teach fitness while I was on the trial. Shortly into beginning treatment, my doctors also discovered that the treatment had destroyed my endocrine system, and I would need ongoing medication for it.
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Around this time, the meningioma that had been in my brain started to change and cause swelling. I lost consciousness during a fitness class on April 25 2018, and had a complete craniotomy on May 5. The surgery took place the day before my son’s ninth birthday, so I was even more determined to pull through. The craniotomy revealed that there was a hemangioblastoma growing at the bottom of my brain stem, and a cyst growing around it. As much as I wanted to go back to the gym two days later, I stayed in Glenrose Rehabilitation for five weeks to relearn how to use my right side, a side effect of my brain injury. And then I drove home!
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Now, it’s September 2018, and I am still fighting. Sometimes I want to scream, sometimes I want to cry, sometimes I want to give up, but I am getting stronger every day and have faith that my scans are going to come back clear. If I can go through this year of hell and still find the positives in life, I think anyone can— whether it’s getting a good parking spot at the hospital, warm blankets, or friendly nurses. Some days its horrible, but the only way to not get sucked into the viciousness of this disease is to dry our tears and rise above it.

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Best of ASCO: Montréal!

Updated 3-August-2018: Click HERE to find our full report from ASCO 2018!

 

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While we’re finishing up our report on the ASCO Annual Meeting 2018 in Chicago, we’d like to share with you some resources about trials that were discussed at an ASCO satellite meeting: Best of ASCO 2018 Montréal, which took place in Montréal, QC on June 19th, 2018. From 7:50-8:20 pm, Dr. Wilson Miller (McGill) gave a talk entitled “Best of Melanoma,” which highlighted some of the notable melanoma studies discussed at the ASCO annual meeting.

For those interested in more ASCO recaps, Oncology Education has posted video resources, including Dr. Jeffrey Weber (NYU) discussing Checkmate 238, Dr. Max Madu (Netherlands Cancer Institute) on the 8th AJCC melanoma staging system, and a roundtable discussion of ASCO highlights with Dr. Marcus Butler (Princess Margaret Cancer Centre), Dr. John Walker (Alberta Cancer Centre), and Dr. Jason Luke (University of Chicago). These videos are available here, though you will need to register for the Oncology Education website to view them.

Below is a list of some of the trials Dr. Miller presented, with links to the ASCO abstracts for further reading:

 

Abstract number 9501: “Final analysis of DeCOG-SLT trial: Survival outcomes of complete lymph node dissection in melanoma patients with positive sentinel node.”

Presented at ASCO Annual Meeting, Chicago, in the Melanoma/Skin Cancers Oral Abstract Session (Monday, June 4, 8:00-11:00 AM).

Authors: Ulrike M. Leiter et al.

Retrieved from: http://abstracts.asco.org/214/AbstView_214_216115.html

The DeCOG-SLT trial assessed whether complete lymph node dissection can result in increased survival compared with observation in patients with positive sentinel node biopsy in a randomized phase III trial. The update presented at ASCO 2018 comes three years after the inclusion of the last patient. After the median 72-month follow-up time, there seemed to be no survival benefit in patients with positive sentinel node biopsy with complete lymph node dissection, compared to observation. More information about the methods and results of the study can be found at the link above.

 

Abstract number 9503: “4-year Survival and Outcomes After Cessation of Pembrolizumab (pembro) after 2-years in Patients (pts) with Ipilimumab (ipi)-naive Advanced Melanoma in KEYNOTE-006 [NCT01866319]”

Presented at ASCO Annual Meeting, Chicago, in the Melanoma/Skin Cancers Oral Abstract Session (Monday, June 4, 8:00-11:00 AM).

Authors: Georgina V. Long et al.

Retrieved from: http://abstracts.asco.org/214/AbstView_214_222303.html.

The KEYNOTE-006, or NTO1866319, sought to establish the efficacy of pembrolizumab over ipilimumab in advanced melanoma. The data includes four year outcomes, long term data for patients who have completed two years of pembro, and data for second course. The results suggest that pembrolizumab can provide durable anti-tumour activity in treatment-naive or previously treated patients. 86% of the patients who had completed two years of pembro were progression free at 20 months. The data suggests that pembro is safe, and can be used as a second-course treatment to provide additional anti-tumour activity. For more information, see the link above.

 

Abstract number 9594: “Assessing the Value of Nivolumab (NIVO) versus Placebo (PBO) and Ipilimumab (IPI) as Adjuvant Therapy for Resected Melanoma [EORTC 18071]”

Presented at ASCO Annual Meeting, Chicago, in the Melanoma/Skin Cancers Oral Abstract Session (Monday, June 4, 8:00-11:00 AM).

Authors: Morganna Louise Freeman et al.

Retrieved from: http://abstracts.asco.org/214/AbstView_214_220221.html.

This study assessed the cost of cancer therapies in the context of clinical benefits. Data from CheckMate 238 and EORTC 18071 (nivolumab) was compared to placebo and ipilimumab in the adjuvant setting for patients with resected melanoma was used to consider the cost for each recurrence-free life month (RFLM) and associated medical costs. They found that nivo has a lower medical cost per RFLM than both placebo and ipi in patients with resected IIIB and IIIC cutaneous melanoma, and has superior drug costs per RFLM relative to placebo and ipi over eighteen months. Data suggests that follow-up will continue to determine the cost-effectiveness of adjuvant NIVO. For methods, results, and outcome measures, see the link above.

 

Abstract number 9502: “Adjuvant Therapy with Nivolumab (NIVO) versus Ipilimumab (IPI) After Complete Resection of Stage III/IV Melanoma: Updated Results from a Phase III Trial (CheckMate 238)”

Presented at ASCO Annual Meeting, Chicago, in the Melanoma/Skin Cancers Oral Abstract Session (Monday, June 4, 8:00-11:00 AM).

Authors: Jeffrey S. Weber et al.

Retrieved from: http://abstracts.asco.org/214/AbstView_214_214567.html.

With a minimum follow-up of 18 months, the initial report data from the CheckMate 238 trial demonstrated that nivolumab had longer recurrence-free survival over ipilimumab in patients with resected stage III or IV melanoma. At ASCO, phase III data with an additional six months of follow-up was reported. With this extended follow-up, nivo continued to demonstrated a sustained benefit versus ipi for patients with resected stage III/IV melanoma at a high risk of recurrence, PD-L1 expression, or BRAF mutation. More information can be retrieved at the link above.

 

Abstract number 9514: “Phase II Trial of Pembrolizumab (pembro) plus 1 mg/kg Ipilimumab (ipi) Immediately Following Progression on Anti-PD-1 Ab in Melanoma (mel)”

Presented at the ASCO Annual Meeting 2018, Chicago, in the Melanoma/Skin Cancer Poster Session (Monday, June 4, 1:15-4:45 PM).

Authors: Daniel Olsen et al.

Retrieved from: http://abstracts.asco.org/214/AbstView_214_215997.html.

This study sought to examine the role of the immunotherapy anti-PD-1 + CTLA-4 combination after the first line anti-PD-1. They are reporting the first potential data examining pembrolizumab + low dose ipilimumab following progression on anti-PD-1. The results suggest that low dose ipi + pembro is tolerable and has anti-tumour activity in melanoma patients who have progressed on an anti-PD-1 immediately prior. For more information on this abstract and ongoing trial, see the link above.

 

Abstract number 9542: “BRAF/MEK Inhibition in Melanoma Patients with Rare BRAF Mutations”

Presented at the ASCO Annual Meeting 2018, Chicago, in the Melanoma/Skin Cancer Poster Session (Monday, June 4, 1:15-4:45 PM).

Authors: Jessica Cecile Hassel et al.

Retrieved from: http://abstracts.asco.org/214/AbstView_214_226845.html.

This study uncovered efficacy data for BRAF/MEK inhibition, which is standard care for patients with BRAF V600E/K mutated melanoma. The results suggest that patients with tate BRAF mutations often respond to targeted therapy. Less likely to respond to BRAFi monotherapy are patients with non-V600 mutations, but MEKi as monotherapy or combined with BRAFi seems more promising for these patients. For more information, including a data breakdown, see the link above.

 

We hope this information was interesting and helpful– stay tuned to our social media channels for study news, and our upcoming ASCO Annual Meeting 2018 report!

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American Society of Clinical Oncology Annual Meeting 2018!

Once again, Save Your Skin attended the American Society of Clinical Oncology (ASCO) annual meeting, which took place from June 1-5 at McCormick Place in Chicago. The meeting brought together physicians and oncologists, pharmaceuticals, and patient advocates from all cancer types. ASCO, as an organization and at the conference, creates a space for advocacy networking and education, including spaces for advocates to meet, presentations, and a panel track devoted to patient and survivor care. You can read more about ASCO’s interest in patient education here, and visit cancer.net for ASCO’s resources for patient education. These patient and survivor care panels, alongside the melanoma and developmental therapeutics offerings, kept us busy throughout the conference.

While we are working on a more extensive ASCO report, we’d like to share some of the highlights from our social media feed and from the ASCO daily news. Stay tuned for more updates, and more detailed descriptions of the panels we attended.

 

https://www.instagram.com/p/Bjh9PdlnmvL/?taken-by=saveyourskinfdn

 

 

 

 

 

More highlights to be posted over social media and report to come soon! Stay tuned!

 

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Barbara’s Story

Toronto, ON

In February 1981, a Clark’s level II-III malignant melanoma was discovered on my right knee, which was excised widely. In August 1985, I noticed a small nodule just above the primary site. It was excised and was positive for malignant melanoma. In July 1986, a second recurrence in the same area was excised and was once again positive for melanoma. In November 1986, I developed a right groin node. It was excised and again proven recurrent disease. In that December, I had a CAT scan which showed internal and external iliac node involvement bilaterally and a right pelvic side wall mass. I started chemotherapy (DTIC combined with Tamoxifen) in February 1987 in Toronto, which ended on November 11, 1991. Yes: I was in treatment for almost five years. I started with Dr. Michael Baker at Toronto General Hospital and eventually we moved to Princess Margaret Hospital. To this day, I see Dr. Baker annually. Twenty six years after finishing chemotherapy, to what do I accredit my survival? So many things. When I was told that I had a 20% chance of survival just before starting chemotherapy, I told my oncologist that I would prove him wrong. I got involved in every aspect of my treatment and care, questioning everybody and everything. By doing so, I gained the respect of my oncologist and chemotherapy team. Now, I am thinking positively and setting goals.

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Melanoma Survivorship

“I have mixed emotions on a regular basis. On one hand, I’m so happy and grateful because I found a treatment that is working, but on the other hand I have to live with the fear and anxiety for the rest of my life. It’s always in the back of my mind.”— Danika

While most people understand that being diagnosed with and receiving treatments for cancer is a terrifying ordeal, even if they have not experienced it themselves, many people tend to think that these struggles fade as patients finish their treatments and move into remission. This is not the case; cancer survivors and long-term treatment patients, especially those that have battled melanoma, experience unique challenges. I make this distinction between those who have fought melanoma and those who have fought other cancers because they are a relatively new population: over the past fifteen years, survival melanoma rates have risen considerably due to the advent of biological and immune system repression therapies, or immunotherapies. Whichever medication sees a patient through their treatment process, the end of their battle with cancer does not coincide with the end of their treatment. Depending on their comfort level and the kind of cancer diagnosis, patients undergo check-in tests once every six months, or yearly, for the rest of their lives. Their cancer, and the potential of its return, is a constant shadow.

“I remember not being able to physically climb stairs, but today, after treatment, things are getting better and easier to navigate. I can’t always see what is around the corner, down below or what will be there when I reach the top, but I still take the steps to get there. One step at a time, one day at a time. I feel like every day since my diagnosis four years ago, I still consciously, every day, make the decision to take ‘the steps to get there.’”—Natalie

While life ostensibly begins to return to normal once treatments are finished, this is simply not the case. Reconciling returning to work, if this is even possible, and resuming ‘normal’ relationships with friends and family is difficult when patients have a stretch of time in their memory that is indescribable to those who have not experienced something similar. The anxiety surrounding the return to regularity is exacerbated by these intermittent appointments, which interrupt the progress of rebuilding a ‘normal’ life. As a diagnosis of cancer increases the likelihood that it will return, the fear of recurrence is present in the anticipation of every appointment, and everything else. Life is forever changed.

“Sometimes no matter how tough the journey, there were beautiful days. No cars on the road, and a clear sky. This is how I felt later on in my journey. I started seeing that there is hope.”—Mike

While a cancer diagnosis is never desirable, some good may come out of these experiences. On May 10th, in the midst of Melanoma Awareness Month, Save Your Skin hosted the Giving Hope Gala & Auction. While the evening was a wonderful success, the one of the highlights was Mike, quoted above, colluding with Natalie, also above, to surprise Kathleen Barnard, Founder of Save Your Skin, at the event. The three are close friends, two are colleagues, and all three are melanoma survivors. They met through their diagnoses. They support each other, and create a space where they can talk about their experiences with others who understand. Further, they act as a voice of hope for current melanoma patients. Through our I’m Living Proof initiative, and other programs like it, melanoma survivors are given the opportunity to connect with patients in any stage of their melanoma journey. They are able to mutually support, advise, and give hope to each other. While melanoma survivors may never return to their life exactly as it was before, part of their new lives, hopefully, can be the mutual support of each other and support of patients currently battling melanoma. This Melanoma Awareness Month, we would like to remind you that the melanoma journey doesn’t end for survivors, and that their life after treatment is often vastly different than it was before. They are a valuable population in the melanoma community, and one that is worthy of our continued support.

 

Mike, Kathleen, and Natalie; Save Your Skin Giving Hope Gala & Auction, 10 May 2018.

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Don’t Forget: Prevention and Detection!

May is melanoma month, and it’s starting to warm up out there! Take a moment to remind yourself of some skin cancer prevention and detection tips before you head outside to enjoy the weather.

While you may think that skin cancer isn’t a frequently occurring disease, or that you aren’t at risk if you don’t live in a tropical country, that is unfortunately not the case. It is estimated that in 2017, 7, 200 Canadians will be diagnosed with melanoma skin cancer and 74, 000 cases of non-melanoma skin cancer (Canadian Cancer Society; Canadian Skin Patient Alliance).

It is true that certain populations are more at risk of developing skin cancer, such as those who have skin cancer in their family, are fair-skinned, or are taking any medication that may suppress their immune system. However, anyone who had frequent or extreme sunburns in adolescence, or continues to spend prolonged, unprotected time in the sun, is dramatically increasing their risk of developing skin cancer.

While some of these circumstances are unavoidable, it is possible to reduce your risk of skin cancer by taking some simple precautionary measures while enjoying your time in the sun.

Prevention

The most important sun safety tip is to limit your exposure to it. Enjoy the outdoors, but take these first precautions:

  • Limit sun exposure between 10am-4pm
  • Cover up as much as possible with light pants or a light, long-sleeved shirt
  • Seek shade whenever possible!
  • Do not use tanning beds

 

Another important sun safety tool at your disposal is sunscreen. Whether you are spending a day at the beach, eating lunch outside, or just running errands, it is important that you apply a sunscreen of at least SPF 30 and that is broad spectrum (if you are in Canada), which will protect you against both UVA and UVB rays. When you apply sunscreen, try to do so 20 minutes before going outside, and use approximately an ounce during each application. Reapply your sunscreen at least once an hour, more frequently if you are sweating or swimming.

Other sunscreen tips include:

  • Carry a travel-sized sunscreen with you at all times, so you are always prepared!
  • Cream or lotion-based sunscreens provide better coverage than sprays.
  • Make a list of the places you often forget, and cover them first– often-forgotten spots include the tops of feet, backs of hands, neck and ears.
  • Don’t forget to wear sunscreen if you’re up the mountain in the winter– snow is reflective, and can increase risk of sunburns!
  • Wear a lip balm with at least SPF 15

 

Detection

Skin cancer has many appearances, and can manifest anywhere on the skin– even under the surface. It is important to know what to look for, and when to seek the advice of a medical professional. Generally, skin cancers are categorized as either melanomas, which in 2017 made up 3.9% of cancers diagnosed in males, and  3.2% of cancers diagnosed in females, or non-melanoma skin cancers, which are recognized to be the most commonly diagnosed cancer among Canadians (Canadian Cancer Society). The most common non-melanoma skin cancers are basal cell carcinoma and squamous cell carcinoma. Both of these, and melanoma, can manifest in the epidermis, the outermost layer of skin. More information about what these moles may look like can be found further along in this blog post, with the “ABCDEFG”s of skin checks.

Assessing a lesion takes less than five minutes, so if you see something new, or an old spot that is changing, see your doctor. Many non-melanoma skin cancers are easily removed or treated.

While checking your skin for moles, you should also be keeping an eye out for actinic keratosis, also known as solar keratosis. Actinic keratosis generally develops in older people on sun-exposed areas of the skin. Actinic keratosis feels like a rough patch on the skin, and may become visible as red scaly patches; it is often confused with eczema. It may feel tender to the touch. If left untreated, actinic keratosis may develop into squamous cell carcinoma.

(“Actinic Keratosis.” Scars Center.)

It is important to know your own skin, so you can be aware of any changes. We would recommend marking your calendar once a month to check your skin, and your loved ones, using the skin-check guide below. 

Steps of a Skin Cancer Self-Exam:

  • Using a mirror in a well-lit room, check the front of your body -face, neck, shoulders, arms, chest, abdomen, thighs and lower legs.
  • Turn sideways, raise your arms and look carefully at the right and left sides of your body, including the underarm area.
  • With a hand-held mirror, check your upper back, neck and scalp. Next, examine your lower back, buttocks, backs of thighs and calves.
  • Examine your forearms, palms, back of the hands, fingernails and in between each finger.
  • Finally, check your feet – the tops, soles, toenails, toes and spaces in between.

(Canadian Dermatology Association, patient handout “Melanoma Skin Cancer: Know the Signs, Save a Life” 2009.)

 

When checking your own skin or that of your loved ones, keep in mind the “ABCDE’s of skin checks.”

  • 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 – Colour that is uneven. Shades of black, brown, and tan may be present. Areas of white, grey, 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. Is the mole harder than the surrounding skin?
  • G – Growing. Is the mole gradually getting larger? 

 

If you see any of these signs, see your doctor. Having a lesion assessed takes very little time, and earlier detection means easier treatment.

This melanoma month, don’t forget to practice sun safety, check your skin and your loved ones, and join the fight against skin cancer by supporting patient groups.

 

 

 

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