Pooja Suganthan1*, Dr. Smita C. Banerjee1
1 Memorial Sloan Kettering Cancer Center
Abstract
31-60% of cancer patients, caregivers, and survivors search for cancer-related health information online. Cancer survivors share their stories on online platforms, such as blogs and social media for two-fold benefits: (1) empowerment and “cybercoping” for narrators and (2) shared insight and experiences for readers. This study aimed to examine the reasons melanoma survivors share their stories and to identify other themes that exemplify collective experiences. Themes were examined by cancer stage. A content analysis examined a sample of 100 melanoma survivor online narratives, 20 narratives per stage (0-4), from the AIM at Melanoma Foundation. Themes were created with a combination of inductive and deductive coding. Inductive coding included deriving coding categories by individually working through a subset of narratives (𝑛 =10). Deductive coding included categories from published research on online melanoma survivor experiences. Each survivor narrative was coded on 76 coding categories. Only 13% of the narrators provided their age (M (mean) = 33, 𝑆𝐷 (standard deviation) = 15.16, 𝑅𝑎𝑛𝑔𝑒 = 12 − 62 𝑦𝑒𝑎𝑟𝑠), and the majority were written by females (𝑛 = 77, 77%). Common reasons for sharing included providing treatment details (43%), catharsis (42%), treatment success (40%), giving generic advice (38%), spreading hope (34%), and sharing tanning experiences (32%). This content analysis suggests that survivors have multiple reasons for sharing their personal stories, with a number of “teachable moments.” These findings suggest that survivors’ actual experiences with melanoma can be used for harm-reduction (e.g., sun protection, tanning cessation, etc.) campaigns. It is important for healthcare providers to listen to patients to tailor treatment and services appropriately.
Author Summary
Sharing melanoma survivor stories on online platforms allows survivors to cope with their emotions and share their journey. These freely accessible narratives allow readers who may be going through similar journeys to find unity and gain insight from the narrator’s experiences. These narratives also allow narrators to share advice, such as to avoid mistakes that they may have made. This study analyzed common themes in melanoma narratives posted on the AIM at Melanoma Foundation across 100 narratives across cancer stages 0 to 4. Themes were developed by reading and identifying commonalities among a subset of 10 narratives and by identifying themes from previous research. This content analysis showed that many narrators shared their stories to provide details about their treatment, releasing emotions, sharing advice, spreading hope, and sharing tanning experiences. Overall, this study shows that cancer narratives and their “teachable moments” can be implemented in melanoma prevention campaigns.
Introduction
Patients’ stories recount individual patients’ illness experiences. These stories are widely spread on online platforms and social media (McQueen, Arnold and , 2015; et al., 2020). Patients’ narratives recount a series of connected events within a set specific to their diagnosis and treatment ( et al., 2016). These narratives can be used in health communication for teaching and initiating behavior changes in health communication ( et al., 2016). The internet is an accessible source that cancer patients, survivors, and caregivers can use to cope and seek information (Rogers et al., 2017). 31-60% of cancer patients and caregivers have searched cancer-related health information online ( et al., 2015). Cancer survivors can share their stories on online platforms, such as blogs, support groups, and social media ( et al., 2018). Posting cancer survivor stories can be beneficial to the narrator because it creates empowerment, serves as “,” and promotes emotional support ( et al., 2018). At the same time, these narratives can influence readers in two ways: 1) they can influence those engaging risky behaviors to reconsider their choices and 2) they can provide insight and hope to those undergoing similar situations ( et al., 2018). Online platforms allow for instant, easy access to narratives (American Cancer Society, 2020a). However, readers should do their research and choose their sources wisely because some findings may be inaccurate or biased (American Cancer Society, 2020a).
Previous studies show that web-based interventions on free online platforms allow patients and caregivers to access survivors’ personal expertise gained from their own lived experience (Kelly et al., 2022). An investigation of personal accounts of melanoma published on support organizations’ websites reveal key themes categorizing events across the cancer journey, medical management, and support needs ( and , 2018). This study used a qualitative analysis of patient experiences in three differentiated time periods (lead-up to diagnosis; diagnosis, treatment, and recovery; and post-treatment and recurrence) to construct a representation of a typical melanoma patient’s journey. A content analysis of online narratives shared by melanoma survivors demonstrates how online sharing of cancer narratives can benefit both the authors and the readers ( et al., 2018). These studies have identified themes among cancer narratives, such as beliefs about personal susceptibility to melanoma, impact of surgery, role of support groups ( and , 2018), identification of self-phenotype, communicator of diagnosis, and positive of attitude ( et al., 2018). Survivor narratives can be used in public health campaigns to share information through stories because they engage audiences through self-identification with the narrator (Thompson and , 2014). Evaluation of a website with multiple sclerosis narratives demonstrated that viewers perceived the content as diverse, representative of positive and negative experiences in multiple sclerosis patients, and helpful in decision-making ( et al., 2022). This current study extends work that has already been completed in this area of research. This study differentiates from past work because it uses a different source for online survivor stories, the AIM at Melanoma Foundation website. Analyzing stories from this website can help verify the validity of findings from past studies. This content analysis also includes survivor stories from all different stages of cancer. Stratifying the stories based on stage of cancer allows for the identification of stage-specific themes, which differentiates this analysis from previous works. The purpose of this content analysis was to identify why melanoma survivors shared their stories and other themes that exemplify their collective experiences.
Melanoma Background/Statistics
Melanoma is a form of skin cancer that arises in , which are cells that produce pigment (Centers for Disease Control and Prevention, 2020). Melanoma constitutes 1% of skin cancers, but it results in the most deaths out of all skin cancers (American Cancer Society, 2022). In 2019, the age-adjusted rate of new melanoma cases in the United States was 438.6 for every 100,000 people and a total of 1,752,735 new cases were reported (U.S. Cancer Statistics Working Group, 2020). From 2001 to 2016, the average annual percent change (AAPC) of melanoma incidence rates increased by 2.2% among males and 1.9% among females (Henley et al., 2020). From 2001 to 2016, melanoma had the largest decline in death rates, a decrease of 6.1% among males and 6.3% among females (Henley et al., 2020). From 2014 to 2017, melanoma death rates decreased by 7.6% annually for males and 6.3% annually for females (Henley et al., 2020). It is estimated that there will be approximately 99,780 new melanoma diagnoses and 7,650 deaths due to melanoma in 2022 (, R.L. et al., 2022). Melanoma is categorized as a multi-factorial cancer because it is associated with both genetic and environmental risk factors ( et al., 2014). Genetic risk factors for melanoma include fair skin, freckles, red or blond hair, blue or green eyes, and an inability to tan. Environmental risk factors include ultraviolet light exposure, tanning bed use, and overexposure to sunlight (U.S. Department of Health and Human Services, 2014). Melanoma is more likely to occur in older individuals than younger individuals (American Cancer Society, 2019). However, melanoma is one of the most prevalent cancers in people under 30 years old, particularly for younger women (American Cancer Society, 2019). Overall, melanoma is more common in males (American Cancer Society, 2019). The risk of getting melanoma for White people 2.6%, for Black people 0.1%, and for Hispanic people 0.6% (American Cancer Society, 2019).
Cancer Information and the Internet
The Internet is a cancer patient’s second most trusted source of cancer information, preceded their health care provider (Shea– et al., 2014). Cancer patients may use the Internet for information about their diagnosis, advice or insight from others’ experiences, and support or social interaction (Holmes, 2019). Exposure to health information increases awareness and knowledge of health risks. For example, skin cancer information seeking had a positive association with protective behaviors, including using sunscreen and wearing protective clothing (Hay et al., 2009; and Friedman, 2016). Cancer survivors can share their stories on a variety of platforms, such as blogs, support groups, and social media (Chou et al., 2011; et al., 2018). The Internet allows for instant, easy access to information about patients’ diagnoses. It is recommended that readers do their research and choose their sources wisely because some findings may be inaccurate or biased. Online sources should not substitute advice from medical professionals (American Cancer Society, 2020a). Online support groups, mailing lists, blogs, , and survivor networks are online spaces where people can share advice and connect with others (American Cancer Society, 2020c).
Online Cancer Narratives
Online cancer narratives share a patient’s experiences throughout their cancer journey in a virtual community ( et al., 2018). These stories have been studied in previous research. Some studies focused specifically on the online cancer narratives of young adults (Kim and , 2013), while others focused on specific types of cancers, such as colon cancer (McQueen, Arnold and , 2015) or breast cancer (Keim-Malpass and , 2012). For example for melanoma patients, a meta-analysis of cancer narratives collected online was conducted to curate a framework and develop a culminating view of a patient's experience ( and , 2018).
Theoretical Perspectives
Theoretical perspectives can support the effectiveness of sharing cancer narratives ( et al., 2019). Social cognitive theory (SCT) is a learning theory that explains how individuals acquire behaviors by observing and imitating others with positive reinforcement ( and , 2014). Narratives exemplify SCT because they contain teachable personal experiences that the reader can learn from, without being in direct contact with the narrator ( and , 2014; et al., 2018). The elaboration likelihood model (ELM) suggests that when an individual receives a persuasive message, they will process the information in two ways: (1) centrally, where they will consider the arguments and decide whether they agree or disagree and (2) peripherally, where they will be influenced by external factors (Green and Brock, 2000; Lane et al., 2013). Transportation theory is the concept of being immersed or absorbed into a narrative due to engagement, emotional connections, and imagery (Green and Brock, 2000; Green and Fitzgerald, 2017). Unlike elaboration, transportation theory describes a convergent process (Green and Brock, 2000). Transported readers are more likely to accept the beliefs and ideas presented in the narrative because of mechanisms such as reduced , identification with narrator, emotional connections, mental imagery, and increased appearance of realism (Green and Brock, 2000; Green and Fitzgerald, 2017; et al., 2018).
Impact of Sharing Online Narratives
Sharing cancer narratives online has two-fold benefits. Posting cancer survivor stories can be beneficial for the narrator because it creates empowerment, serves as “,” and promotes emotional support ( et al., 2018). Online platforms allow the narrator to engage with those who have faced similar situations and access support at all times (Brady, and Sanders, 2017). Additionally, it also helps the narrator reconstruct their identity and work through concerns (Brady, and Sanders, 2017; et al., 2018). At the same time, these narratives can influence readers’ lifestyle choices, , and coping abilities ( et al., 2018). These stories can influence two types of readers: 1) readers undergoing a similar diagnosis or treatment as the narrator and 2) individuals who are engaging in risky cancer behaviors. Narratives can help readers undergoing a similar diagnosis or treatment because they provide emotional and social information that are not typically included in most resources. This further allows the reader to understand their illness, cope, and continue with their journey ( et al., 2013). Sharing survivor stories can also benefit individuals who are engaging in risky behaviors because the stories spread information about cancer prevention and early diagnosis ( et al., 2016). Further research is still necessary to determine whether survivor narratives can improve readers’ , but these narratives can be a great tool to supplement didactic information and encourage changes in behavior (Bennett, Wagner and Robb, 2015). Presenting health information through personal stories may be a potential way to accomplish public health goals ( et al., 2013). This could be an effective way to target populations with lower literacy or numeracy rates ( et al., 2013).
Methods
Content analysis was conducted to examine melanoma survivor narratives from the AIM at Melanoma Foundation website.
Sample Selection
The sample consisted of 100 melanoma survivor online narratives (20 each from stages 0 to 4), from AIM at Melanoma Foundation (https://www.aimatmelanoma.org/support-resources/survivor-stories/). This website contains a collection of melanoma survivor narratives and the first 20 stories per stage as of June 2020 were chosen.
Coding Procedure and Inter-rater Reliability
In order to develop our , a combination of inductive and deductive coding was used. First, a sample of 10 narratives (the first 2 narratives from Stages 0 to 4) were chosen for inductive coding. The coding member read each narrative independently and identified principal themes and concepts. Then, deductive coding was utilized to incorporate additional themes based off of prior research that may possibly be mentioned during , diagnosis, treatment, or post-treatment. Interconnected themes were grouped together and summarized to form overarching themes (profession, symptoms, part of the body where the symptom first appeared, any other body part where the melanoma traveled, basic treatment modality, type of medication, symptoms after treatment, social support, and reason for sharing stories). A general coding section was created to collect the narrator’s age at the time of diagnosis, stage of melanoma, length of story, and sex of the survivor. In all, the consisted of 13 themes with 76 coding categories. 100 melanoma survivor stories (20 from each stage of cancer) were analyzed using the . All coding was completed as 0 (absent) to 1 (present), unless otherwise noted.
An inter-rater reliability (IRR) test was conducted to check the reliability of the content analysis. Another independent coder coded 10% of the narratives (10 narratives; 2 per stage 0-4) using the coding scheme and both codes were compared. The percentage agreement was 91.8%, and all disagreements were resolved through a mutual discussion facilitated by Dr. Banerjee.
Results
The data was divided into three subsections: and treatment, during diagnosis and treatment, and after diagnosis and treatment. Each subsection consisted of relevant themes that were broken down into sub-themes. General descriptive coding from the stories included information on the survivor’s age at the time of diagnosis, stage of melanoma, length of narrative, and sex. The results show themes providing a general description of the survivors, including age, stage of melanoma, length of narrative, and sex of survivor (Table 1).
Table 1. General description of melanoma survivor narrators posted on the AIM at Melanoma Foundation website
Coding Categories | Frequency, n (%) |
General Coding |
|
1. Age |
|
Mean | 33 |
Standard Deviation | 15.16 |
Range | 12-62 years |
2. Stage of Melanoma |
|
0 stage | 20 (20%) |
1st stage | 20 (20%) |
2nd stage | 20 (20%) |
3rd stage | 20 (20%) |
4th stage | 20 (20%) |
3. Length of Narrative |
|
Mean | 19.13 |
Standard Deviation | 1-80 lines |
Range | 14.49 |
4. Sex of survivor |
|
Female | 77 (77%) |
Male | 21 (21%) |
Unspecified | 2 (2%) |
Of the 100 melanoma survivor narratives, 13% of the narrators provided their age (M (mean) = 33, 𝑆𝐷 (standard deviation) = 15.16, 𝑅𝑎𝑛𝑔𝑒 = 12 − 62 𝑦𝑒𝑎𝑟𝑠), and a majority of narratives were written by females (𝑛 = 77, 77%). The narratives varied in length (M (mean) = 19.13, 𝑆𝐷 (standard deviation) = 14.79, 𝑅𝑎𝑛𝑔𝑒 = 1 − 80 lines).
Pre-diagnosis and treatment
Four themes were coded for the pre-diagnosis and treatment phase: (a) profession, (b) symptoms, (c) part of the body where the symptom first appeared, and (d) any other body part where melanoma traveled. The results show 15% of survivors mentioned the first theme, profession, in their narrative (Table 2). There was no overlap of profession, but some examples included teacher, realtor, and legal assistant. The second theme, symptoms, was divided into 6 sub-themes: (a) abnormal mole (bleeds, itches, oozes, is discolored), (b) tumor (including pain), (c) spot, (d) freckle, (e) unspecified, and (f) other. The results show 46% of survivors noted abnormal moles, 17% noted tumors, 9% noted spots, 6% noted freckles, 15% noted unspecified symptoms, and 8% noted “other” (Table 2). Examples of other symptoms included wart-like growths and unhealed sores. The third theme, part of the body where symptom first appeared, was divided into five sub-themes: (a) upper torso (neck, back, breast, shoulders, arms/armpit), (b) head area (scalp, face/cheek), (c) lower torso (legs, thigh), (d) abdomen (stomach, genitals), and (e) not specified. The results show 38% of survivors’ initial symptoms were found on their upper torso, 21% were found on their head area, 20% were found on their lower torso, 7% were found on their abdomen, and 14% were found on unspecified locations (Table 2). 37% of survivors indicated that the melanoma traveled to other body parts, such as traveling from one’s neck to their leg (Table 2).
Table 2. Themes and subthemes in melanoma survivor stories at pre-diagnosis and treatment phase
Themes & subthemes | Frequency in discussion, n (%) | Definition | Examples of supporting quotes |
Pre-Diagnosis & Treatment |
|
|
|
1. Profession | 15 (15%) | mentions career | "While serving in the US Air Force in the Philippines I woke up one morning with blood all over my bed and legs." (Male, ID 1) |
2. Symptoms |
|
|
|
2a. Abnormal mole (bleeds, itches, oozes, is discolored) | 46 (46%) | Visibly identifiable atypical mole, have irregular features, dysplastic nevus | "While serving in the US Air Force in the Philippines I woke up one morning with blood all over my bed and legs." (Male, ID 1) |
2b. Tumor (including pain) | 17 (17%) | Visibly identifiable swelling of a part of the body, generally without inflammation, caused by an abnormal growth of tissue, whether benign or malignant | "I returned back to my dermatologist, he called in his entire staff to look at my tumor." (Female, ID 73) |
2c. Spot | 9 (9%) | Visibly identifiable color that spreads from the border of a spot into surrounding skin | "Found a dark, big, flat spot on left side of my scalp in April 2006." (Female, ID 2) |
2d. Freckle | 6 (6%) | Visibly identifiable small patch of light brown color on the skin, often becoming more pronounced through exposure to the sun | "In June I noticed something different about a freckle on my inner left calf." (Female, ID 33) |
2e. Unspecified | 15 (15%) | Mentions general symptoms | "My journey begins in February 2012 when I noticed a growth in my neck area. It started small, then grew very big." (Male, ID 45) |
2f. Other | 8 (8%) | Mentions symptom(s) not listed | "For at least 2 yrs I had a raised, pink and white growth on my left elbow. It would bleed a little and looked a lot like a wart." (Female, ID 75) |
3. Part of the body where symptom first appeared |
|
|
|
3a. Upper Torso (Neck, Back, Breast, Shoulders, Arms/Armpit) | 38 (38%) | Symptom(s) appeared on upper torso (Neck, Back, Breast, Shoulders, Arms/Armpit) | "Seven months later, I returned with another suspicious lesion, this time on my back" (Female, ID 82) |
3b. Head area (Scalp, Face/Cheek) | 21 (21%) | Symptom(s) appeared on head area (Scalp, Face/Cheek) | "They used a skin graft from my chest to close the primary spot on my cheek." (Female, ID 9) |
3c. Lower Torso (Legs, Thigh) | 20 (20%) | Symptom(s) appeared on lower torso (Legs, Thigh) | "When I was 27 I noticed a mole on my thigh that had started to bleed and scab." (Female 92) |
3d. Abdomen (Stomach, Genitals) | 7 (7%) | Symptom(s) appeared on abdomen (Stomach, Genitals) | "I had a mole above my belly button that I had been monitoring for about 4 years prior to getting this first diagnosis." (Female, ID 16) |
3e. Not specified | 14 (14%) | Narrator did not mention location of symptom(s) |
|
4. Any other body part where melanoma traveled? | 37 (37%) | Metastasis, spread of melanoma | "It spread down to my left arm and spread up to the left side of my left neck." (Female, ID 66) |
During diagnosis and treatment
The during diagnosis and treatment phase was divided into four sub-themes: (a) basic treatment modality, (b) type of medication, (c) symptoms after treatment, and (d) social support. Basic treatment modality was broken down into six sub-themes: (a) surgery/excision, (b) , (c) radiation, (d) interferon, (e) chemotherapy, and (f) other. The results show a majority of narrators, 94%, underwent surgery/excision, 18% underwent , 11% underwent radiation, 7% underwent interferon, 4% underwent chemotherapy, and 9% underwent other types of treatment (Table 3). Some examples of other treatments included and infusions. Many patients reported more than one modality of treatment throughout their cancer journey. The second theme coded for the type of medication that the narrator took. This theme was divided into four sub-themes: (a) , (b) , (c), and (d) other. There was not an overwhelming majority for any specific type of medication. The results show 6% of narrators took , 6% took , 5% took , and 16% mentioned other types of medication (Table 3). Some examples of other types of medication include liquid nitrogen sprays and / treatment. Some patients mentioned taking more than one type of medication. The third theme, symptoms after treatment, was divided into 12 sub-themes: (a) regrowth of tumor/fear of recurrence, (b) scarring, (c) bad side effects (vague, without specifications), (d) anxiety, (e) pain, (f) fatigue, (g) walking difficulty, (h) , (i) dizziness, (j) vision loss/impairment, (j) hair loss, and (k) other. The three most common symptoms included regrowth of tumor/fear of recurrence (24% of survivors), scarring (12% of survivors), and vague bad side effects (10% of survivors) (Table 3). Each of the other sub-themes consisted of less than 10% of survivors (Table 3). 18% of survivors experienced other symptoms that were not listed as sub-themes, such as hearing loss and weight loss (Table 3). Many patients experienced more than one type of symptom after treatment. The fourth theme categorized under during diagnosis and treatment was social support. This theme was divided into 9 sub-themes: (a) spouse/partner, (b) family, (c) health care providers, (d) religious support, (e) friends, (f) children, (g) online support, (h) therapist, and (i) other. The results show 18% of narrators reported support from their spouse/partner, 16% reported support from family, 13% reported support from health care providers, 11% reported support from religion, 9% reported support from friends, 7% reported support from children, 4% reported support from online, 4% reported support from therapists, and 6% reported other (Table 3). Some examples of other social support systems include life coaching, exercise, and support groups. In some cases, the survivor mentioned more than one social support system or emphasized the lack of support from particular groups.
Table 3. Themes and subthemes in melanoma survivor stories at the “during diagnosis and treatment” phase.
Themes & subthemes | Frequency in discussion, n (%) | Definition | Examples of supporting quotes | |
During Diagnosis & Treatment |
|
|
| |
1. Basic treatment modality |
|
|
| |
Surgery/excision | 94 (94%) | A procedure in which a surgeon removes cancer from the patient's body | "He said it needed to be removed and performed the excision at that visit in his office." (Female, ID 90) | |
Immunotherapy | 18 (18%) | A type of therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection, and other diseases. | "After biopsy verification, I started treatment which consisted of 19 immune therapy treatments." (Female, ID 53) | |
Radiation | 11 (11%) | A cancer treatment that uses high doses of radiation to kill cancer cells and shrink tumors
| "I was able to do 2 of 3 rounds, followed by high output radiation in Houston." (Male, ID 51)
| |
Interferon | 7 (7%) | Interferon is an adjuvant-cancer therapy. It targets any lingering melanoma cells and prevents them from spreading and growing. The treatment works by: Stimulating the immune system to develop T cells (a type of white blood cell that fights disease and infection) to attack melanoma cells. | "This was followed over the next 10 months with IV treatments with interferon and other drugs." (Male, ID 94) | |
Chemotherapy | 4 (4%) | Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, or infusion, or on the skin, depending on the type and stage of the cancer being treated. | "In 2005 I was diagnosed with Non-Hodgkin’s lymphoma & treated with a typical course of chemotherapy (called CHOP)" (Male, ID 93) | |
Other | 9 (9%) | A type of treatment that is not listed above | "So the fear sets in. I was treated in late June 2017 with brachytherapy which involves surgically affixing a plaque to the eye that houses radiation beads and delivers targeted radiation to the tumor for a period of 1 week, then surgically removing the plaque." (Female, ID 36) | |
2. Type of medication |
|
|
| |
Keytruda | 6 (6%) | A drug that binds to the protein PD-1 to help immune cells kill cancer cells better and is used to treat many different types of cancer. | "Started on Keytruda and while on it I had good results for that area of my neck." (Female, ID 2) | |
Opdivo | 6 (6%) | (or nivolumab) A prescription drug that binds to the protein PD-1 to help immune cells kill cancer cells better and is used to treat many different types of cancer. | "I started immunotherapy of opdivo and yervoy in May 2018." (Female, ID 21) | |
Yervoy | 5 (5%) | A drug that binds to the protein CTLA-4 to help immune cells kill cancer cells better and is used to treat many different types of cancer. | "We elected to do both Opdivo, and Yervoy at the same time." (Male, ID 44) | |
Other | 16 (16%) |
| For my last regular check up I left with three biopsies, and four liquid nitrogen sprays. (Female, ID 98) | |
3. Symptoms after treatment |
|
|
| |
Regrowth of tumor/fear of recurrence | 24 (24%) | Side effect of tumor regrowth or fear of regrowth | "A year and a half later, it was back and stronger than before." (Female, ID 25) | |
Scarring | 12 (12%) | Side effect of scarring | "Since that the area has healed over but I have a huge scar on my face and have lost some of the function of the left side of my mouth." (Female, ID 38) | |
Bad side effects (vague, without specifications) | 10 (10%) | Patient reports unspecific side effects | "Tried those for about 8 months with bad side effects so now on Mektovi and Braftovi which I still have side effects, but taking 10mg of Prednisone to help." (Female, ID 2) | |
Anxiety | 9 (9%) | Side effect of anxiety, or a feeling of worry or unease | "the anxiety that comes from doctors appointments and tests has lessened over the years, but it never completely goes away" (Female, ID 57) | |
Pain | 6 (6%) | Side effect of physical suffering or discomfort | "It hurt worse than the first time because the site was still raw and the incision was larger." (Female, ID 35) | |
Fatigue | 5 (5%) | Side effect of extreme tiredness | "Only a splitting headache, fatigue and a little dizziness." (Female, ID 26) | |
Walking difficulty | 4 (4%) | Side effect of walking difficulty | "A thousand stitches and skin grafts held my leg together till I was able to walk again." (Male, ID 1) | |
Lymphedema | 3 (3%) | Side effect of localized swelling of the body caused by an abnormal accumulation of lymph | "I had another surgery which caused permanent lymphedema in my right leg." (Female, ID 25) | |
Dizziness | 3 (3%) | Side effect of feeling faint, woozy, weak or unsteady | "Only a splitting headache, fatigue and a little dizziness." (Female, ID 26) | |
Vision loss/impairment | 3 (3%) | Side effect of a decreased ability to see to a degree that causes problems not fixable by usual means | "After 2nd treatment I lost vision in my left eye. Immediately received treatment of steroid injection in left eye from Tara McCannel at UCLA. Vision slowly came back." (Female, ID 21) | |
Hair loss | 3 (3%) | Side effect of thinning of hair on the scalp; alopecia | "A month after treatment was finished, my hair started falling out, a little at a time, the worst day coming at a college football game with our in-state rival, whose quarterback was Eli Manning." (Female, ID 71) | |
Other | 18 (18%) | Symptom not listed above | "Lost 70 lbs. but was alive and starving." (Male, ID 44) | |
4. Social support |
|
|
| |
Spouse/partner | 18 (18%) | Support from spouse/partner | "I am so lucky to have such a huge support system, which has been key in my recovery. My husband, parents, family, and friends have made a world of difference in helping me stay emotionally strong." (Female, ID 49) | |
Family | 16 (16%) | Support from family | "My mother has been my rock researching treatments and side effects so I know what to expect. She calls me daily and helps me in everything I need" (Female, ID 21) | |
Health Care Providers | 13 (13%) | Support from health care providers | "We are so thankful to our family, friends and medical team (who are like family to us) for the exceptional care they have provided" (Male, ID 7) | |
Religious support | 11 (11%) | Support from religion | "Through this journey, we have learned what’s important and what’s not. Put it in God’s hands and let it go! We hope our journey will help others with their journey as we feel God has given us the opportunity to share our story." (Male, ID 7) | |
Friends | 9 (9%) | Support from friends | "My Friends were a gift beyond measure at this time in my life." (Female, ID 22) | |
Children | 7 (7%) | Support from children | "My daughter became my bank of research, my interceder with my doctor, my driver and cook." (Female, ID 71) | |
Online support | 4 (4%) | Support from online | "I would love to hear from any of you at any time. This is just crazy. I never thought I would be diagnosed." (Female, ID 58) | |
Therapist | 4 (4%) | Support from therapist | "Luckily, after finding an angel of a therapist and I stopped reading the horror stories of melanoma, my anxiety is now under control and I have been NED since June 2019." (Female, ID 14) | |
Other | 6 (6%) | Social support system not listed above | "I used life coaching and exercise to help me cope." (Female, ID 33) | |
After diagnosis and treatment
The after diagnosis and treatment phase consisted of one theme: (a) reason for sharing stories. This theme was divided into 13 sub-themes: (a) sharing treatment details and waiting, (b) sharing for catharsis, (c) sharing treatment success, (d) giving advice generic, (e) hope, (f) tanning experience, (g) expressing gratitude/thankfulness, (h) awareness to others, (i) melanoma kills, (j) giving advice trust your intuition, (k) giving advice seek early treatment; don’t wait, (l) death warrant, if not caught early, and (m) other. The results show 43% of survivors shared their story to share treatment details and waiting, 42% shared for catharsis, 40% shared treatment success, 38% gave generic advice, 34% spread hope, 32% mentioned a tanning experience or regret, and 30% expressed gratitude and/or thankfulness (Table 4). Less than 30% of survivors shared their story for the remaining sub-themes (Table 4). Many of the sub-themes overlapped.
Table 4. Themes and subthemes in melanoma survivor stories at the “after diagnosis and treatment” phase.
Themes & subthemes | Frequency in discussion, n (%) | Definition | Examples of supporting quotes |
After Diagnosis & Treatment |
|
| |
1. Reason for sharing stories |
|
| |
Sharing treatment details and waiting… | 43 (43%) | Sharing story to describe treatment details and/or explain further waiting | "I will be starting Nivolumab sometime soon." (Female, ID 61) |
Sharing for catharsis (e.g., “Here to tell my story”) | 42 (42%) | Sharing story to release repressed emotions and gain relief | "Thanks for reading and I actually gained a little relief putting it all on the table. I normally don’t talk about it as I tend to get very upset." (Female, ID 50). |
Sharing treatment success (e.g., good news, survivor, etc.) | 40 (40%) | Sharing story to express good news, emphasize surviving, treatment success, etc. | "It is now a little over a year later and I am still cancer free and have a healthy nine-month-old little girl." (Female, ID 70) |
Giving advice (generic) | 38 (38%) | Sharing story to share unspecific or generic advice | "My advice to all high-risk people like me is to remain vigilant! Keep your appointments and never let down your guard." (Female, ID 12) |
Hope | 34 (34%) | Sharing story to spread hope | "Use my life coaching skills to fill their lives with a positivity and hope like it did for me." (Female, ID 33) |
Tanning experience (e.g., tanning bed, a lot of time in sun, tanning regrets, don’t tan) | 32 (32%) | Sharing to mention voluntary exposure to UV radiation from tanning experiences (e.g., in a tanning bed, in the sun, tanning regrets, spread awareness) | "I had a fierce sunburn as a teenager, and used tanning booths so I would be “pre-tan” for a vacation trip" (Female, ID 82) |
Gratitude/thankful | 30 (30%) | Sharing to express gratitude and thankfulness | "I am so grateful that I have peace of mind and committed to keeping a close watch on my skin, and loved ones skin." (Female, ID 85) |
Awareness to others | 29 (29%) | Sharing to raise awareness | "Take your own stand, won’t you? May is Melanoma Awareness Month. To observe it: If you lie in the sun or use tanning beds, stop. Purchase sunscreen with an SPF of at least 30, and apply it as part of your morning routine." (Female, ID 39) |
Melanoma kills | 21 (21%) | Sharing to express the deadliness and seriousness of melanoma | "Melanoma kills. It is a silent death warrant if not caught early. I was lucky but many have died from it." (Male, ID 1) |
Giving advice - trust your intuition | 10 (10%) | Sharing to give advice (Specifically, trust your intuition); don't doubt yourself; get it checked | "The best advice I can give is to JUST HAVE THE MOLE REMOVED!! Doctors will never be certain what you have until they have it looked at under a microscope! BE YOUR OWN ADVOCATE!!!" (Female, ID 86) |
Giving advice – seek early treatment; don’t wait | 7 (7%) | Sharing to give advice (specifically, seek early treatment; don't wait) | "I believe I survived this scare because I took strong action quickly. My advice to anyone reading this is to make an appointment for a mole check with a dermatologist." (Female, ID 85) |
Death warrant, if not caught early | 7 (7%) | Sharing to express deadliness of melanoma if diagnosis is delayed | "Had I not brought it up to my doctor the ending of my story could have been very different." (Female, ID 38) |
Other | 6 (6%) | A reason for sharing that is not listed above | "I have an article that I was featured in and can share with you – it explains the treatment much better than I can." (Female, ID 41) |
Discussion
The purpose of this study was to identify why melanoma survivors shared their stories and other themes that exemplify their collective experiences across cancer stages. In this study, a content analysis of melanoma survivor narratives from the AIM at Melanoma Foundation website was conducted and key themes were identified. The data was divided into three subsections: and treatment, during diagnosis and treatment, and after diagnosis and treatment. Each subsection consisted of relevant themes that were broken down into sub-themes. The general coding category collected information on the narrator’s age, stage of melanoma, length of narrative, and sex. The and treatment was divided into four themes: (a) profession, (b) symptoms, (c) part of the body where the symptom first appeared, and (d) any other body part where melanoma traveled. The during diagnosis and treatment phase was divided into four themes: (a) basic treatment modality, (b) type of medication, (c) symptoms after treatment, and (d) social support. The after diagnosis and treatment phase consisted of one theme: (a) reason for sharing stories.
This study adds onto the body of literature on what motivates cancer survivors to share their journeys. This study showed that a prevalent theme among melanoma survivors’ was mention of reason for sharing, which is similar to Banerjee et al.’s findings from melanoma survivor narratives shared online. The most common reasons for sharing stories included sharing treatment details and waiting (43%), sharing for catharsis (42%), and sharing treatment success (40%). These reasons demonstrate the author’s interest in presenting their experiences to readers in a positive manner. Readers undergoing similar experiences may connect to the writer’s narrative and feel a sense of togetherness, hope, and optimism.
Additionally, these narratives often acknowledged a support system, which is similar to Henderson et al.’s findings among African American women coping with breast cancer (2003). Overall, these results are in tandem to research that has been conducted in the past. One reason that has not been reported in the past is an expansion of the various support systems that narrators have used. Some newly mentioned examples include healthcare providers and therapists. This study also adds an increasing understanding of the types of advice shared by narrators. Advice was grouped into three individual : (a) general, (b) trust your intuition, and (c) seek early treatment, don’t wait.
Many of the narratives reflected on the importance of behavior, specifically cautioning against tanning. These narrators referenced their own tanning experience, such as their use of tanning beds, time spent in the sun, and tanning regrets. Many used this as an opportunity to advise against tanning and spread awareness of its risks. This is important because many people engage in a lot of risk taking behavior at early ages and/or without understanding the long-term risks. this reason, it is recommended that skin cancer prevention needs to start early. Prevention campaigns should talk to children in school at early ages. According to the Centers for Disease Control & Prevention, some methods to protect skin from the sun include staying in the shade, wearing protective clothing, and putting on sunscreen that blocks UVA and UVB rays with an SPF of 15 or higher. Aside from increasing shade and promoting sun-safe behaviors, schools can implement skin cancer prevention interventions and educational programs (Centers for Disease Control and Prevention, 2021). The National Cancer Institute (NCI) compiled a list of sun-safety evidence based programs that schools can reference (Division of Cancer Control and Population Science at the National Cancer Institute).
The NCI describes from the day you were diagnosed. The cancer control continuum is a framework that uses evidence-based interventions for cancer etiology, prevention, early detection, diagnosis, treatment, , and palliative care (David B. Abrams, 2020). This study demonstrates that patients battling cancer have different needs during different phases of their journey. These needs can affect patients physically, socially, emotionally, and/or spiritually. Therefore, medical institutions should have support services, such as counseling, educational, spiritual, and group support. Experts that can provide these services include psychiatrists, psychologists, social workers, psychiatric clinical nurse specialists or nurse practitioners, licensed counselors, or pastoral counselors (American Cancer Society, 2020c). Sharing narratives online could serve as an additional way to support cancer survivors.
There are some limitations to this study. First, the sample of narratives used in this study arose from one website and consisted of 100 stories. Other websites also share survivor narratives. This limits the of this study. Second, this study identified and analyzed 13 overarching themes with 76 coding categories. There may have been some themes that were missed during content analysis because they were not apparent during inductive and deductive coding methods. Third, this research was conducted on data submitted during times. Data from post-pandemic times may show different themes. Future studies may focus on identifying themes shared in melanoma survivor stories during the pandemic. This can provide insight on whether changes in lifestyle impacted survivors’ shared experiences or reasons for sharing stories. Future studies can also analyze content from other online platforms, specifically social media. The types of posts may vary across social media platform, but the content can provide greater insight into survivors’ shared experiences.
Although the internet can serve as a useful tool for sharing and reading cancer experiences, previous studies show that health disparities exist in use of this technology. Findings show that certain are more likely to take advantage of health information posted on online platforms, such as those of younger age, higher education level, higher socioeconomic status, and better internet skills (Jacobs, and , 2017). These findings show the importance of implementing interventions to increase access and education of digitally acquired health information. conclusion, this study aims to augment previous studies to identify why melanoma survivors shared their stories and other themes that exemplify their collective experiences. Melanoma survivor stories posted on online platforms provide a means of and emotional support for the narrator. At the same time, these narratives serve as tools for individuals engaging in risky behaviors or undergoing a diagnosis. Analysis of themes demonstrates that many narrators wrote to share their experiences, treatments, and successes. Further studies are necessary to determine accessibility of online survivor stories.
Acknowledgements
This research was supported by the Memorial Sloan Kettering Cancer Center’s Summer Clinical Oncology Research Experience (SCORE). We would like to thank Director of the SCORE program Dr. Laura , Program Manager Leticia Mercado, and Teaching Fellow Rachel Lee-Carey for guidance and assistance with this project. We would also like to thank Arielle Brutus for assistance with the inter-rater reliability (IRR) test.
References
American Cancer Society (2019) Melanoma Skin Cancer Risk Factors | Melanoma Risk Factors. Available at: https://www.cancer.org/cancer/melanoma-skin-cancer/causes-risks-prevention/risk-factors.html
American Cancer Society (2020a) Cancer Information on the Internet. Available at: https://www.cancer.org/cancer/cancer-basics/cancer-information-on-the-internet.html
American Cancer Society (2020b) Key Statistics for Melanoma Skin Cancer. Available at: https://www.cancer.org/cancer/melanoma-skin-cancer/about/key-statistics.html
American Cancer Society (2020c) Psychosocial Support Options for People with Cancer. Available at: https://www.cancer.org/treatment/survivorship-during-and-after-treatment/coping/understanding-psychosocial-support-services.html
American Cancer Society (2022) Cancer Facts & Figures 2022.Available at: https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2022.html
Banerjee, S.C. et al. (2018) ‘“It’s Not JUST Skin Cancer”: Understanding Their Cancer Experience From Melanoma Survivor Narratives Shared Online’, Health Communication, 33(2),pp. 188–201. doi:10.1080/10410236.2016.1250707.
Bekker, H.L. et al. (2013) ‘Do personal stories make patient decision aids more effective? A critical review of theory and evidence’, BMC Medical Informatics and Decision Making, 13(Suppl 2), p. S9. doi:10.1186/1472-6947-13-S2-S9.
Bennett, K.F., von Wagner, C. and Robb, K.A. (2015) ‘Supplementing factual information with patient narratives in the cancer screening context: a qualitative study of acceptability and preferences’, Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 18(6), pp. 2032–2041. doi:10.1111/hex.12357.
Brady, E., Segar, J. and Sanders, C. (2017) ‘Accessing support and empowerment online: The experiences of individuals with diabetes’, Health Expectations : An International Journal of Public Participation in Health Care and Health Policy, 20(5), pp. 1088–1095. doi:10.1111/hex.12552.
Briant, K.J. et al. (2016) ‘The Power of Digital Storytelling as a Culturally Relevant Health Promotion Tool’, Health promotion practice, 17(6), pp. 793–801. doi:10.1177/1524839916658023.
Centers for Disease Control and Prevention (2020) What Is Skin Cancer? Available at: https://www.cdc.gov/cancer/skin/basic_info/what-is-skin-cancer.htm
Centers for Disease Control and Prevention (2021) Sun Safety. Available at: https://www.cdc.gov/cancer/skin/basic_info/sun-safety.htm
Chou, W.-Y.S. et al. (2011) ‘Cancer Survivorship in the Age of YouTube and Social Media: A Narrative Analysis’, Journal of Medical Internet Research, 13(1). doi:10.2196/jmir.1569.
Abrams, D.B. (2020) Cancer Control Continuum, National Cancer Institute. Available at: https://cancercontrol.cancer.gov/about-dccps/about-cc/cancer-control-continuum
Division of Cancer Control and Population Science at the National Cancer Institute (n.d) Sun Safety Evidence-Based Programs Listing | Evidence-Based Cancer Control Programs (EBCCP). Available at: https://ebccp.cancercontrol.cancer.gov/topicPrograms.do?topicId=102269&choice=default
Drewniak, D. et al. (2020) ‘Risks and Benefits of Web-Based Patient Narratives: Systematic Review’, Journal of Medical Internet Research, 22(3), p. e15772. doi:10.2196/15772.
Fadlallah, R. et al. (2019) ‘Using narratives to impact health policy-making: a systematic review’, Health Research Policy and Systems, 17. doi:10.1186/s12961-019-0423-4.
Green, M.C. and Brock, T.C. (2000) ‘The role of transportation in the persuasiveness of public narratives’, Journal of Personality and Social Psychology, 79(5), pp. 701–721. doi:10.1037/0022-3514.79.5.701.
Green, M.C. and Fitzgerald, K. (2017) ‘Transportation Theory Applied to Health and Risk Messaging’, Oxford Research Encyclopedia of Communication. doi:10.1093/acrefore/9780190228613.013.261.
Hay, J. et al. (2009) ‘Exposure to mass media health information, skin cancer beliefs, and sun protection behaviors in a United States probability sample’, Journal of the American Academy of Dermatology, 61(5), pp. 783–792. doi:10.1016/j.jaad.2009.04.023.
Henderson, V. et al. (2021) ‘Development of a culturally sensitive narrative intervention to promote genetic counseling among African American women at risk for hereditary breast cancer’, Cancer, 127(14), pp. 2535–2544. doi:10.1002/cncr.33525.
Henley, S.J. et al. (2020) ‘Annual report to the nation on the status of cancer, part I: National cancer statistics’, Cancer, 126(10), pp. 2225–2249. doi:10.1002/cncr.32802.
Holmes, M.M. (2019) ‘Why People Living With and Beyond Cancer Use the Internet’, Integrative Cancer Therapies, 18, p. 1534735419829830. doi:10.1177/1534735419829830.
Jacobs, W., Amuta, A.O. and Jeon, K.C. (2017) ‘Health information seeking in the digital age: An analysis of health information seeking behavior among US adults’, Cogent Social Sciences. Edited by C. Alvares, 3(1), p. 1302785. doi:10.1080/23311886.2017.1302785.
Keim-Malpass, J. and Steeves, R.H. (2012) ‘Talking with death at a diner: young women’s online narratives of cancer’, Oncology Nursing Forum, pp. 373-.
Kelly, R. et al. (2022) ‘Availability and use of web-based interventions for patients with head and neck cancer: a scoping review | EndNote Click’, Journal of Cancer Survivorship [Preprint]. doi:https://doi.org/10.1007/s11764-022-01168-1.
Kim, B. and Gillham, D.M. (2013) ‘The Experience of Young Adult Cancer Patients Described Through Online Narratives’, Cancer Nursing, 36(5), pp. 377–384. doi:10.1097/NCC.0b013e318291b4e9.
Lamprell, K. and Braithwaite, J. (2018) ‘When Patients Tell Their Own Stories: A Meta-Narrative Study of Web-Based Personalized Texts of 214 Melanoma Patients’ Journeys in Four Countries’, Qualitative Health Research, 28(10), pp. 1564–1583. doi:10.1177/1049732317742623.
Lane, R. et al. (2013) ‘An Examination of the Narrative Persuasion with Epilogue through the Lens of the Elaboration Likelihood Model’, Communication Quarterly, 61(4), pp. 431–445. doi:10.1080/01463373.2013.799510.
McQueen, A., Arnold, L.D. and Baltes, M. (2015) ‘Characterizing Online Narratives About Colonoscopy Experiences: Comparing Colon Cancer “Screeners” Versus “Survivors”’, Journal of Health Communication, 20(8), pp. 958–968. doi:10.1080/10810730.2015.1018606.
Rastrelli, M. et al. (2014) ‘Melanoma: Epidemiology, Risk Factors, Pathogenesis, Diagnosis and Classification’, In Vivo, 28(6), pp. 1005–1011.
Rogers, M.A. et al. (2017) ‘Internet-Delivered Health Interventions That Work: Systematic Review of Meta-Analyses and Evaluation of Website Availability’, Journal of Medical Internet Research, 19(3), p. e7111. doi:10.2196/jmir.7111.
Shea–Budgell, M.A. et al. (2014) ‘Information needs and sources of information for patients during cancer follow-up’, Current Oncology, 21(4), pp. 165–173. doi:10.3747/co.21.1932.
Shen, M.J. et al. (2015) ‘Cancer-related internet information communication between oncologists and patients with breast cancer: a qualitative study’, Psycho-oncology, 24(11), pp. 1439–1447. doi:10.1002/pon.3752.
Siegel, R.L. et al. (2022) ‘Cancer statistics, 2022’, CA: A Cancer Journal for Clinicians, 72(1), pp. 7–33. doi:10.3322/caac.21708.
Sippel, A. et al. (2022) ‘Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study’, BMC Neurology, 22(1), p. 146. doi:10.1186/s12883-022-02663-9.
Thompson, T. and Kreuter, M.W. (2014) ‘Using Written Narratives in Public Health Practice: A Creative Writing Perspective’, Preventing Chronic Disease, 11. doi:10.5888/pcd11.130402.
Tripp, M.K. et al. (2016) ‘State of the Science on Prevention and Screening to Reduce Melanoma Incidence and Mortality: The Time is Now’, CA: a cancer journal for clinicians, 66(6), pp. 460–480. doi:10.3322/caac.21352.
U.S. Cancer Statistics Working Group (2020) U.S. Cancer Statistics Data Visualizations Tool, based on 2019 submission data (1999-2017), Centers for Disease Control and Prevention. Available at: https://gis.cdc.gov/grasp/USCS/DataViz.html
U.S. Department of Health and Human Services (2014) The Surgeon General’s Call to Action to Prevent Skin Cancer, Washington, DC: U.S. Dept of Health and Human Services, Office of the Surgeon General.
Wigfall, L.T. and Friedman, D.B. (2016) ‘Cancer information seeking and cancer-related health outcomes: a scoping review of the Health Information National Trends Survey literature’, Journal of health communication, 21(9), pp. 989–1005. doi:10.1080/10810730.2016.1184358.
Yoon, H.-J. and Tourassi, G. (2014) ‘Analysis of Online Social Networks to Understand Information Sharing Behaviors Through Social Cognitive Theory’, Annual ORNL Biomedical Science and Engineering Center Conference ORNL Biomedical Science and Engineering Center Conference, 2014, pp. 1–4.