Life After Cancer

Living With Risk

Krista L. Wilkins, PhD, RN; Roberta L. Woodgate, PhD, RN

Disclosures

Cancer Nurs. 2011;34(6):487-494. 

In This Article

Methods

Research Design

An interpretive, descriptive qualitative design was used. Interpretive description is a noncategorical qualitative method that aims to capture themes and patterns within subjective perceptions.[13] This research design encourages the researcher to construct a description of a phenomenon and then move beyond the initial description, through interpretation, to inform clinical practice. Adopting an interpretive descriptive approach was appropriate to elicit a thematic description of cancer survivors' reported meanings of, and experiences with, second cancer risk.

Procedure

The study took place in an Atlantic Canadian city between July 2008 and July 2009. Permission to conduct this study was granted by local university and hospital ethical review committees. Informed consent was obtained from all participants.

Participants

In interpretive description, participant recruitment focuses on individuals living the experience under study.[13] Accordingly, the inclusion criteria were as follows: cancer survivors who were 5 or more years out from the initial cancer diagnosis, at least 19 years of age at the time of the interview, resident of the region in which interviews were being conducted, and able to speak and understand English.

Study participants were recruited from a provincial cancer registry and hospital-based database. Largely untapped as a resource for participant recruitment,[14] the provincial cancer registry was used to exclude individuals with a second cancer diagnosis, premalignant or benign tumor diagnosis, or death notified to the cancer registry. To maximize variation in the data, cancer survivors with differing cancer diagnoses and age at diagnosis were asked to participate in the study.

Twenty-two cancer survivors (16 women and 6 men) participated in the study. The mean age of the participants was 50 years (range, 19–87 years). Predominantly from urban areas, 7 survivors lived alone, and 14 lived with another family member (eg, spouse/partner, children, and parent). Most (n = 20) participants had a minimum of high school education. Fifteen participants were employed part-time or full-time, and the others were either retired or on disability. All participants were white.

The cancer history of the participants included lymphoma or leukemia (n = 6), breast cancer (n = 4), colon (n = 3), melanoma (n = 3), male or female gynecological cancer (n = 3), thyroid (n = 1), and other rare cancers (n = 2). Seven of the cancer survivors had undergone surgery, 2 received chemotherapy, and 13 received a combination of surgery, radiation therapy, and/or chemotherapy. The average age at the time of cancer diagnosis was 40 years (range, 2–78 years). At the time of the interview, participants were an average of 11 years post-cancer diagnosis and had no evidence of disease (range, 5–18 years). Two cancer survivors reported having a relapse of their first cancer.

Data Collection Methods

All data collection was performed by the first author. Participants took part in face-to-face, semistructured interviews. A total of 23 interviews were conducted. One participant was interviewed twice because the first interview ended early. An interview guide was used to help participants articulate their thoughts and feelings about their personal cancer experience and their cancer risk perceptions. The authors developed the interview guide from key themes identified in a review of the literature on second cancer risk and their experience in caring for cancer patients. Similar to the work of Apicella and colleagues,[15] cancer risk perception was measured both as an absolute risk (perceived cancer risk for self ) and as a comparative risk (perceived cancer risk for self vs cancer risk for others), and using a range of reference times (see the Table for sample interview questions).

A person-centered, open-ended interviewing approach helped elicit detailed responses and focused participants' responses onto areas previously not anticipated. The interviews generally lasted for 1 hour. Most interviews took place in the participants' homes. All interviews were digitally recorded to preserve their authenticity and to facilitate detailed analysis. Field notes were made immediately after each interview to record observations about the setting and impressions arising from the interview process (eg, participants' nonverbal behavior). All interviews and field notes were transcribed verbatim.

Data Analysis

Data analysis occurred concurrently with data collection. Immersion in the text began with the identification of words of potential interest. In keeping with interpretive description, the authors searched for and explored "features of a common issue" and rendered "an understanding of them that honors their inherent complexity."[13] The constant comparative method of data analysis was used because it produces a description and interpretation of data through the development of themes.[13] Data coding, a process of giving meaning to all units of information,[16] was an iterative process of going back to the data, comparing data with emerging codes, and clustering data into new codes. Differences and similarities between and within codes and categories were noted. Codes were refined and clustered into categories as new data emerged.[16] Data were constantly compared and contrasted within and between individual interview transcripts throughout the analysis process. In keeping with interpretive description, the researchers explored the contextual nature of the data in an iterative manner, asking repeatedly, "What is happening here?" and "What am I learning about this?"[13]

Common themes from individual interviews were abstracted and created by both researchers. Any disagreement in theme development between the 2 researchers resulted in an ongoing review and discussion of the emerging themes and supporting data until consensus was achieved. To increase the rigor of the analysis process, a number of strategies were used, including achieving data saturation, member checking of transcripts, peer review and debriefing, using direct quotes, and maintaining an audit trail of contextual information, methodological information, analytical decisions, and personal reflections.[17]

Findings

Cancer survivors' reported meanings of, and experiences with, second cancer risk were captured by the primary theme of "life after cancer—living with risk." Two themes emerged from the data that speak to how cancer survivors lived with second cancer risk: (1) thinking about second risk and (2) living with risk: a family affair. The next 3 sections describe these themes.

Life After Cancer—Living With Risk

After cancer, the risk of developing a second cancer is a part of everyday life for cancer survivors. All study participants reported that they were acutely aware of their second cancer risk. Second cancer risk was described in terms of possible risk factors for cancer, making it easier for cancer survivors to conceptualize the abstract nature of risk. Participants identified several known risk factors for second cancers (eg, diet, family history) and speculated about many others (eg, infection).

Living with second cancer risk influenced the self in different ways. For some, the lived reality of second cancer risk did not define who they were and had little impact on their identity. For others, living with second cancer risk was described as a state of permanent risk because "it's going to be a fact of who I am" (Kelly, 40-year-old HL survivor) or "it's always there… you are always thinking well you know (cancer) could rise again" (Matt, 37-year-old non-HL survivor).

Awareness of the physical self meant that signs and symptoms that might have been ignored in the past had a different meaning for cancer survivors. Interpreted as a potentially threatening experience, lumps or other bodily abnormalities shaped participants' sense of risk for developing cancer and their response to that risk. Common to all cancer survivors' experience of living with second cancer risk was the constant monitoring of their bodies for signs of another cancer, for months or even years following cancer treatment. Participants reported that they did not want to be "paralyzed" by worry arising from changes in their body. Indeed, a clear distinction was made between being aware of one's body and being constantly worried about every ache and pain. Accommodating their second cancer risk within their lives was a process of striking a balance between inattention to one's body and preoccupation with one's body. In this way, Theresa, a 56-year-old melanoma survivor, spoke of becoming blasé about second cancer risk:

After a while that fear abates somewhat, you're still checking. If you see something that looks a little odd, you make sure you keep an eye on it, but it's not the panic mode of the first couple of years. Once you hit a certain point, the likelihood of that cancer coming back is very, very slim so as time goes on, you sort of ease up from that panic mode. You are still concerned, but you don't panic. Since it's been more than 15 years now, I don't panic.

Thinking About Second Cancer Risk

Thinking about second cancer risk refers to the strategies that cancer survivors used to conceptualize living with their second cancer risk. Thinking about second cancer risk involved using personal experiences, knowledge of cancer risk factors, and the context of that risk, including the meaning of false alarms and personal behaviors. In this study, 4 interpretations emerged of the meaning of cancer risk: (1) risk as unpredictable or uncertain (the guessing game); (2) risk as inevitable or certain (the waiting game); (3) risk, I am no worse off than anyone else; (4) risk, I am worse off than anyone else; and (5) risk, I am better off than some.

Risk as Unpredictable or Uncertain (the Guessing Game) Risk as unpredictable or uncertain refers to the perception that second cancer risk is unknowable. Second cancer risk assessments were often prefaced with comments such as "you never know" or "you can't say, never," suggesting that thinking about second cancer risk is a "guessing game." Several participants claimed they had never considered it before participating in this research study, or they tried to not think about it much. These participants deferred to what they had been told about their second cancer risk and used qualifications such as, "they say," "they assume," or "that's what they told me." A clear message from cancer survivors was that it is impossible to predict future health, even when one perceives their second cancer risk to be high, as illustrated in the following quotation:

I don't know actually. I very well could develop another cancer, but I'm not guaranteed to. I know that I probably have a higher risk than anyone else in my family or any of my friends for that matter, but it's not so high that I'm guaranteed to get it. (Laura, 20-year-old, acute lymphoblastic leukemia [ALL]) survivor)

The most common reason for interpreting second cancer risk as unpredictable or uncertain was the perceived lack of correlation between cancer risk factors and future outcomes. Study participants recounted how they had not done anything they thought would contribute to the development of their first cancer development, yet they developed a cancer anyway.

I don't smoke, and I don't go out in the sun, so I don't think I'm at risk for like sun cancer and stuff like that. But who knows? I didn't think I was at risk to get Hodgkin disease in the first place… So, it's a possibility that it could be anything, and it can happen to anyone. And, just because I've had it, I don't want to rule out the fact that I could have it again. I was young when I had it, and who knows what's going to happen? (Julie, 19-year-old HL survivor)

Risk as Inevitable or Certain (the Waiting Game) A sense of inevitability of a second cancer diagnosis permeated some of the interviews. For some, second cancer risk was described as playing a waiting game. For example, reflecting on his second cancer risk, Sean, a 26-year-old ALL survivor, said "In my lifetime, I pretty much think I will get some other form of cancer. I just don't know which one."

Even in the absence of known cancer risk factors, many cancer survivors were willing to make firm predictions about their second cancer risk. Indeed, some study participants were adamant that they were following a certain path of high risk because of their cancer treatment or strong family cancer history. For these cancer survivors, their perceived certain high risk of developing a second cancer took precedence over statistical models that placed their risk much lower than that of the general population.

The doctor can tell me you've only got a 20% chance of developing some other type of cancer. I'm really not going to believe him…. While you respect the doctor's opinion and the medical professionals' opinion, you think you know your body better and your fatalistic in some respects about your body… if you were to say to me you know there is only a 10% chance that you are going to develop cancer again, I'd say thank you very much for that statistic… 9 out of 10, you know. (Tracey, 39-year-old endometrial cancer survivor)

One reason offered for the inevitability of a second cancer diagnosis was the perception that second cancer risk cannot be completely eliminated from their lives. Cancer survivors maintained that developing a second cancer was going to happen, and they could do nothing about it because their future was predetermined by forces beyond their control. Study participants also cautioned that healthy behaviors, such as eating properly and exercising, are not 100% effective in reducing one's second cancer risk. A sense of inevitability was evoked from the perceived powerlessness to eliminate all cancer risk factors:

I can't change what is going to happen 5 years from now. I can do steps to make myself healthier. But, something like cancer, you can't make yourself healthier against necessarily… maybe some types. Like skin cancer, you could limit your sun exposure and (exposure to) smoking. (Kelly, 40-year-old HL survivor)

Related to this sense of the inevitability of a second cancer diagnosis was cancer survivors' concern that cancer was becoming increasingly prevalent in their families and throughout society. Study participants concluded that cancer was inevitable or so highly prevalent in the general population that they would certainly get it sometime in their lifetime. As Theresa, a 56-yearold melanoma survivor, said, "There are so many people out there who have had cancer and 10, 15, 20 years later, they develop another cancer, so the odds are in favor of me developing something… some sort of cancer."

Risk, I Am No Worse than Anyone Else Another conceptualization of second cancer risk was that cancer was as likely to occur in people who have had cancer as people who never had cancer. Some study participants explained that once someone has cancer, their cancer risk reverts back their precancer risk level, such that they go back into the "general population risk pot" and assume their share of the population risk. Cancer survivors carefully linked being in good health, longer time since their original cancer diagnosis, fewer "invasive" cancer treatments, and healthy lifestyle practices to a lower second cancer risk.

I think considering the health I have now, I'm probably just thrown back into (the general population pot)I I have no more or less risk than anybody else. I don't have cancer any more. Like I said, I don't think 8½ months of chemo killed off any future little things. It just killed off what was there, but I just think I'm like anybody else now. And I'm glad to say that. I'm glad to say I'm just like everybody else because 8 years ago, I wasn't like everybody else. No, I don't think I'm more or less prone to get it than anybody else in the general public. (Carrie, 39-year-old soft-tissue sarcoma survivor)

The power of positive thinking was also used to explain why some study participants perceived their second cancer risk to be no worse than anyone's. Despite being aware that their second cancer risk cannot be completely offset by positive thoughts, some hoped that positive thinking would win out over a more realistic assessment of their second cancer risk. For example, Sarah, a 38-year-old lymphoma survivor, said, I'm hoping I'm at a lower risk… I hope to God I don't have to go through that again!" When asked to rate her second cancer risk on a scale of 0 to 10, her rating reflected her hopes as evidenced by the statement "I'm thinking 3. I'm hoping 3, really. Yeah that's what I'm hoping." Although encouraged to distinguish hopes from thoughts, these findings indicate that, for some participants, hopes and thoughts might not be distinct.

Risk, I Am Worse off than Anyone Else Some study participants stated that their cancer risk was higher than the "average" cancer risk they attributed to the general population. They perceived that their risk for lung, prostate, and breast cancer was higher than that of the general population. Perceived high risk for developing a second cancer emerged from participants' desire to be "reasonable and logical" in their risk assessments. For others, however, their cancer risk assessment was a casual choice, as in this response: "What initially popped up in my mind was 80%, but I have no idea of what that number would be comprised of" (Natalie, 58-yearold breast cancer survivor). This casual risk assessment might be a manifestation of the participants' preference to avoid detailed thinking about second cancer risk.

A salient explanation for concluding that one's cancer risk was higher than that of anyone else's was that that having cancer exploited an innate weakness in their body and demonstrated that their body had the propensity to acquire cancer. Furthermore, an increased cancer risk may result from what participants referred to as "quirks of the body" or "unique body qualities" that evolved from the cancer treatments.

Cells are cells, and it doesn't matter if it's in my body or someone on the street's body. But, I just feel that because I've had it once… that I did develop cancer already… there is just something in me… I think that when you are vulnerable to it once you have a susceptibility to be vulnerable to it again. I just feel that if it is going to strike, it is going to strike me better or quicker than the person, or it will strike me sooner just because I've had it once. I can't explain to you why that is, it just is. (Tracey, 39-year-old endometrial cancer survivor)

Among the many known risk factors for cancer, treatment-related risk factors were most commonly used to support participants' perceived high cancer risk. One participant, who was treated with chemotherapy and radiation, recognized that "when you get chemo, you have a slightly higher risk of developing I think it is of leukemia" (Carrie, 39-year-old soft-tissue sarcoma survivor). Another participant explained that she was at higher risk of developing cancer because "radiation is maybe a good thing to treat the cancer at the time, but long-term exposure to radiation is not a good thing" (Kelly, 40-year-old HL survivor). Still other participants were not confident in the effectiveness of their cancer treatment and believed that cancer cells still linger in their body.

Risk, I Am Better off than Some Second cancer risk was also conceptualized as much lower than that of others because "some people have stronger bodies than others" (Karen, 79-year-old breast cancer survivor). On the grounds of probability, some participants explained that they had a better chance of not getting another cancer compared with people who have never had cancer. The logic behind this assertion was that cancer survivors did not think their second cancer risk could be so high that they would develop cancer twice before someone else got it once. One participant compared second cancer risk to a lightning strike, saying "(Second cancer risk) is… like getting struck by lightning you don't think you are going to get it twice" (Matt, 37-year-old non-HL survivor).

In comparing themselves to other cancer survivors, study participants drew on observations of "suffering" from invasive cancer treatments. Participants associated more invasive cancer treatments with higher second cancer risk. Indeed, some cancer survivors were almost apologetic when describing their second cancer risk because they believed their own cancer was a "nonevent."

I don't necessarily think of myself as a cancer survivor… like to me, a cancer survivor is somebody who has gone through radiation or chemotherapy or whose had a struggle with it. It really wasn't a struggle for me because… you have a Pap and a biopsy… and then have surgery, and you are told that everything is fine now. So, I don't think of myself as being any higher risk than someone else. Maybe, someone who has gone through a lot more of a process of fighting cancer may look at it differently because of their experience with it. (Rebecca, 31-year-old cervical cancer survivor)

Living With Risk: A Family Affair

Living with second cancer risk is a family affair in the sense that a family member's cancer diagnosis leaves a cancer risk legacy for other family members (past, present, and future). In this study, cancer survivors described their cancer legacy as (1) shared risk and (2) family empowerment.

Shared Risk Cancer survivors judged their second cancer risk against the prevalence of cancer in their family. The absence of cancer among family members was used to conceptualize one's second cancer risk as low. Study participants with no family history of cancer were able to distance themselves from the possibility of developing a second cancer.

Among families with a history of cancer, family membership served to position cancer survivors at a specific and very real risk for developing a second cancer because of their cancerous genes. These cancer survivors used cancer in their family to construct themselves as individuals at a much higher risk of developing cancer than individuals with no family history. One participant with a strong family history of cancer explained:

If you were to put 2 people, myself and another lady next to each other with the same circumstances and the same type of cancer, I'd probably say I'd get it quicker, or I would get it more so than she would just because of heredity. I feel that heredity, whether it is correct or not, had such a big part to play. (Tracey, 39-year-old endometrial cancer survivor)

Reaching a critical family age when family members developed cancer was an important consideration in determining one's second cancer risk. One participant explained that her risk of developing colon cancer was low because at 65 years of age she was older than her mother who succumbed to colon cancer at age 42 years.

Family Empowerment The hope of cancer survivors was that they could create a positive family cancer legacy out of a potentially negative one. They explained that they wanted to arm family members with knowledge of their shared cancer risk so as to empower their family members to change the family legacy. One young mother, a cervical cancer survivor, plans to have her daughter vaccinated against the human papillomavirus to reduce her daughter's risk of developing cervical cancer. Another participant advised his daughters to go for colon cancer screening earlier than they might otherwise have done because both he and his mother had colon cancer.

When family members did not engage in activities to modify their family cancer legacy, cancer survivors described their family members as selfish or irresponsible, leading to strained relationships and communication difficulties. Theresa, a melanoma survivor who has a sister diagnosed with colorectal cancer, spoke of the communication she has had with her sisters and mother about their family legacy of cancer:

I had a colonoscopy done last fall… my mother and another sister have been tested (for colon cancer) because we know the risk is there…. I see one of my sisters come in, and she is as red as a beet because she's been out all day gardening or at the beach laying out. I try to tell her, "No, don't do that, you're still at risk (for skin cancer). Your risk might be 10%, but now it is 50% simply because I've had it."

Comments

3090D553-9492-4563-8681-AD288FA52ACE
Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.

processing....