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The Endless Cycle: Recurrence, Anxiety, and Worry

Insights from Skin Cancer In America 2019

Survivors know that the physical and mental toll of skin cancer doesn’t end with treatments. We conducted our third large survey of people who live with various types of skin cancer. Here, we share what it means to face skin cancer and the anxieties that come with it.

How often do you deal with recurrences?

Of those who have had basal cell carcinoma, 35% have had 4 or more occurrences. Of those who have had melanoma, 38% had more than one occurrence, while 62% report only having it one time. Of those with squamous cell, 20% had an occurrence twice, and 27% had 4 or more occurrences. Of those with dysplastic nevus syndrome/atypical mole syndrome (while a less common form of skin cancer), 52% reported 4 or more recurrences.

SCC was most likely to have the shortest duration in between recurrences, with 37% of people with it reporting less than 6 months in between. Basal cell patients experienced a similarly short time between recurrences, with 28% reporting a recurrence within less than 6 months.

Overall, 49% of people were NED (no evidence of disease) upon taking this survey.

Skin cancer recurrence by type: basal cell carcinoma (67%) squamous cell (57%) melanoma (38%)

Anxiety and recurrence are connected

On top of coping with skin cancer, people reported other physical and mental health conditions. 23% reported an anxiety/panic disorder while 15% reported a mood disorder. On the physical side of things, 27% reported arthritis and 32% reported high blood pressure.

Recurrence is never far from one’s mind. Nearly half thought about recurrence weekly or more.

Recurrence thoughts: once day or more 23%, few times/week 25%, few times/month 24%, once/month 16%, only for checks, tests 12%

Anxiety can rear its ugly head whenever it comes time to get checked. Leading up to nearly all exams or procedures, people expressed having higher than average anxiety. Only during self-checks did folks not feel more anxiety than normal.

Anxiety reported during skin biopsies (74%), skin checks with doctor (61%) and scans (45%)

How has your lifestyle changed since diagnosis

Many people reported making lifestyle changes after their diagnosis. As you might imagine, sun avoidance played a significant role. Use of tanning beds changed drastically: 51% of people using them before diagnosis vs. 97%* of people never using them after they received their diagnosis.

A skin cancer diagnosis can change more than just your behavior, it can also change your family’s behavior. 58% of people agree or strongly agree they worry about their family’s risk of skin cancer. People on SkinCancer.net often write about using more sunscreen and sun protection on their families than they used to after their own diagnosis.

Before:after diagnosis: doctor check 8:57%, use sunscreen 7:62%, self-check 6:52%, clothing that covers 3:32%, avoid sun 3:28%

Melanoma takes its toll

In addition to fears of recurrence, people with melanoma experience a lot of emotional stress. Melanoma and its scars can be overwhelming and isolating. Others may not understand just how serious melanoma can be.

When it comes to treatment and support, the outlook is a little brighter. 71% of people with melanoma do feel that their skin cancer is controlled on their current treatment plan. Additionally, 73% of people with melanoma have someone involved in their care, most typically their spouse. (slide 14) This kind of support is crucial.

Melanoma respondents: worry about scars (51%), feel fatigued (70%), feel overwhelmed by melanoma (49%), feel isolated (31%)

Support from the inside out

A lot of people expressed the importance of having a support network who provides emotional support. In some cases this network included family and friends. 66% of people say that they were either quite a bit or very satisfied with their family’s communication around their skin cancer.

A variety of different types of support is important. Help needed spanned from emotional to financial, including: emotional support, finding coping strategies, help with household duties, and help with finances/bill paying.

95% of people get emotional support from family while 93% get support from friends.

Coping methods look different for everyone

Whether it's going for a long walk, listening to music, or eating something you love, the way that you coped with your anxiety about skin cancer was different for everyone.

Coping methods for skin cancer included: talking it out, meditation, music, eating, prayer, crying, exercise, anxiety meds

Stronger together

Skin cancer looks different for everyone, but these results speak to the universal importance of an understanding, supportive community. Whether you seek friends, family, in person meetups or online communities like ours, never hesitate to ask for what you need. The skin cancer journey can be anxiety-producing, unending, and life-threatening, but through it all, we’re stronger together.

The Skin Cancer In America online survey gathered insights from 1,013 individuals currently suffering from skin cancer to better understand their symptoms and management of this condition, as well as the impact on their lives.

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