Taking Care of Second Cancer Risk

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

Disclosures

Cancer Nurs. 2012;35(1):55-62. 

In This Article

Findings

Two themes related to cancer survivors' decision making and actions on second cancer risk emerged from the data: (1) how I take care of my second cancer risk and (2) support I need to take care of my second cancer risk. A list of the themes and subthemes is shown in Table 2.

How I Take Care of My Second Cancer Risk

All of the individuals in this study talked about the responsibility that they, and all cancer survivors, have for making a conscious effort to do something to take care of their second cancer risk. For cancer survivors, taking care of second cancer risk meant becoming highly skilled and attentive in monitoring their risk. The goals of taking care of second cancer risk were to (1) lower their risk of developing a second cancer, (2) delay the onset of a second cancer, (3) and/or prepare their body to be physically able to handle the disease and its treatment should they develop a second cancer. The prevailing norm espoused by study participants was that taking care of second cancer risk was a responsibility not to be taken lightly. Indeed, cancer survivors emphasized that it was their duty to follow the "rules of surviving cancer"—engaging in an endless process of vigilance and lifestyle modification to pursue good heath or make healthy changes. Study participants emphasized that "tempting fate" through unnecessary risk was something to be avoided.

I think you have to take care of yourself. I don't think you can do things that are going to harm you or take chances… if you were a cancer survivor and you didn't go for your tests or didn't go for your mammogram or stopped taking medications that you were supposed to be taking, that's taking chances. You've got to follow the rules. (Karen, 79-year-old survivor of breast cancer)

For cancer survivors, taking care of one's second cancer risk contributed to developing a meaningful life. The experience of being able to influence their second cancer risk created a sense of hope and expectation of progress in their cancer survivorship. Furthermore, taking care of their second cancer risk strengthened cancer survivors' self-esteem, enabling them to take further action.

I think (cancer survivors) should be carrying their health record with them. They should be going for their yearly checkups. They should be finding out if they are at risk for certain cancers. If (cancer) is in their (family) background, they should check that out. And if there are things wrong with them, it is up to them to tell their doctor. You have to take responsibility for yourself. (Anna, 65-year-old survivor of melanoma)

Despite their awareness of the benefits of taking care of second cancer risk, only a few study participants translated this awareness into action. Some cancer survivors explained that taking care of second cancer risk would not be necessary because they perceived their risk to be too low to need to do anything about it. Still others reported feeling powerless to take care of their second cancer risk because they believed that developing a second cancer was inevitable.

That being said, study participants were at ease with the fact that they could not take care of risk all the time. For cancer survivors, like Rebecca, a 31-year-old survivor of cervical cancer, taking care of second cancer risk meant taking "average precautions" but "not on an extreme scale." In this study, cancer survivors attempted to take care of their second cancer risk by (1) engaging in healthy lifestyle practices, (2) checking for a second cancer or second cancer risk, and (3) information seeking.

Engaging in Healthy Lifestyle Practices Healthy lifestyle practices are actions that cancer survivors reported engaging in to lead a healthy life, including reducing their second cancer risk. The most commonly implemented healthy lifestyle practices were (1) eating a well-balanced diet, (2) engaging in physical activity, (3) limiting exposure to things known to cause cancer, and (4) taking medications to prevent a second cancer or control their cancer risk.

Well-balanced Diet. Changes in diet since their cancer diagnosis, albeit sometimes small, were commonplace among cancer survivors because of their understanding of the role diet plays in the prevention of illnesses, including cancer. Many cancer survivors were confident that making a conscious effort to select healthy food choices, paying attention to cholesterol levels, fiber, and salt intake, would reduce their second cancer risk. Four reasons offered for poor eating habits were unfamiliarity with preparing or cooking foods, high cost of fresh produce, lack of personal motivation, and lack of family support.

Physical Activity. Study participants reported a wide range of physical activities in their current exercise patterns. Three activities that were particularly popular were walking, playing sports, and gardening. Participants were motivated to be physically active for "general well-being, and if that helps prevent (a second) cancer too, that's great" (Brian, 33-year-old survivor of thyroid cancer). Role modeling a physically active lifestyle was equally important to participants who wanted to create a positive family legacy of cancer out of a potentially negative one. Health problems arising from complications from cancer treatment (eg, lymphedema) or other health conditions emerged from the interviews as barriers to being physically active. Likewise, several of the participants spoke of a lack of time preventing them from being as active as they would like. Many of them had full and busy lives with family commitments and felt that they could not fit in any more activities.

Limiting Exposure to Things Known to Cause Cancer. Study participants did their best to limit exposures to things that are known to cause cancer, and if they could, they avoided the exposure completely. The 2 exposures most commonly discussed were ultraviolet rays from the sun and tobacco smoke. Study participants, particularly those with a history of melanoma, reported taking sun safety precautions, such as using sunscreen, wearing protective clothing (eg, hat, long-sleeved shirts), and avoiding "sun worshipping."

Nonsmokers did everything they could to avoid cigarette smoke because they were confident that smoking causes cancer. Nonsmokers expressed that they did not take up smoking and/or avoided second cancer smoke as a way to reduce their second cancer risk. Two cancer survivors continued to smoke cigarettes after their cancer diagnosis. One explained that there was nothing cancer survivors could do about developing a second cancer so there was no reason to quit smoking. The other participant rationalized that his doctor gave him "permission" to continue smoking because his doctor told himsmoking did not contribute to the development of his first cancer.

Taking Medications. Several study participants reported using "protective medications" to take care of their second cancer risk. For example, Brenda, a 64-year-old survivor of breast cancer, was confident that letrozole (Femara) and tamoxifen offered her continuous "protection" from developing a second cancer. The competing risks of developing a second cancer versus the adverse effects of medication informed some cancer survivors' willingness to engage in taking medications. One woman discontinued taking hormone replacement therapy (HRT) because she feared the risks of developing other types of cancer associated with taking HRT more than the risks of osteoporosis associated with not taking HRT.

Checking for a Second Cancer or Second Cancer Risk Checking for a second cancer refers to the strategies that cancer survivors used to look for abnormalities that might be cancerous in its earliest stages or to identify their second cancer risk. Checking for a second cancer or second cancer risk procured a sense of peace and feeling in control that was lacking when survivors first had a diagnosis of cancer. The 2 strategies used by study participants to check for a second cancer or second cancer risk were physical examination and screening tests.

Physical Examination. Self-examination was identified as the most effective way for cancer survivors to become familiar with their bodies so as to recognize any changes. For the most part, study participants emphasized taking control of their own body through self-examination meant they did not need to rely on healthcare professionals to tell them when something was wrong with their body. Being taught techniques for performing self-examinations and success in locating past abnormalities increased study participants' confidence in their ability to find something that was different with their body.

Cancer survivors who were not confident in their ability to practice self-examination relied on a healthcare professional to conduct a physical examination because they believed that the healthcare professional would more easily detect a health problem. For example, Anna, a 65-year-old survivor of melanoma, who rarely performed self-examinations of her skin, said:

Going once a year to have (my skin) checked out and (my family physician) checks my whole body that's comforting because he knows just by looking at something. We (cancer survivors) don't know by looking at a mole whether it is dangerous or something could be wrong at all, and we can't see our backs or anything like that.

Screening Tests. Blood work was the most common procedure that cancer survivors used to monitor their second cancer risk. Study participants explained that having blood drawn did not take much effort on their part because it was ordered by a healthcare professional when they needed a new medication prescription or it was included in a health tracking system available through their workplaces. Some believed that the blood tests they had to monitor illnesses, such as diabetes, would pick up other bodily abnormalities, such as a second cancer, fairly quickly.

Cancer survivors participated in cancer screening tests, includingmammogram, colonoscopy, Papanicolaou test, and diagnostic imaging, albeit much less regularly than blood work, to attend to their immediate risk when body abnormalities presented (eg, pain, polyps) and/or to "benchmark" their future risk. Study participants were most likely to go for cancer screening if they had a family history of cancer or if such testing was recommended by a healthcare professional. Cancer survivors reported having to exert much personal effort to access cancer screening tests. For example, one woman spoke of the difficulty accessing mammograms before the age 40 years, despite the test being recommended as part of her follow-up cancer care:

I know when I went to my family doctor, she wasn't aware that maybe I should go earlier for a mammogram, so I had to be the one to bring that to his attention, and it was the nurses in the cancer centre that told me that, and they have told me over the last 18 years to make sure because obviously they see people, and they know what to tell them to look for. So yeah, sort of had to fight for it… you know this is important to me. (Kelly, 40-year old survivor of Hodgkin lymphoma)

Information Seeking Most participants were eager to seek as much second cancer risk information as was available to them through the Internet or healthcare professionals. These participants explained that second cancer risk information served to preserve hope, encourage accurate risk perceptions, minimize anxiety and hopelessness, and increase personal control over their risk.

Study participants acknowledged that their comprehension of their second cancer risk was affected by the way the second cancer risk information was presented. Frequently, information was too fragmented, inaccurate, inappropriate, or insufficient to help cancer survivors understand their second cancer risk. Information needs identified by study participants included (1) how their risk compares to others (eg, more or less at risk), (2) patterns of cancer risk among other cancer survivors and general population, (3) what kind of cancer they would be at highest risk of developing, (4) factors relevant to their second cancer risk and how to prevent exposure to them, (5) how to optimize their health, which in turn, would reduce their second cancer risk, and (6) how second cancer risk might present, including warning signs to look for and how to look for them.

Support I Need to Take Care of My Second Cancer Risk

Study participants offered many recommendations on how healthcare professionals can best support cancer survivors in taking care of their second cancer risk. This category describes the responsibilities of nurses and other healthcare professionals in helping cancer survivors take care of risk. Study participants suggested that healthcare professionals involved in providing survivorship care should make every effort to be (1) proactive, (2) honest, (3) informative, and (3) respectful.

Being Proactive A common message from cancer survivors was that healthcare professionals need to encourage, but should not expect, survivors to manage their long-term health on their own. Initiated by the healthcare professional, a proactive approach to survivorship care is recommended. As described by study participants, proactive care includes a plan for the prevention and surveillance of new cancers based on risks associated with survivors' cancer history, genetic predispositions, lifestyle behaviors, and comorbid health conditions. Healthcare professionals are proactive when they recommend the most appropriate cancer screening tests for the cancer survivor and make arrangements for such testing.

For healthcare professionals to be proactive, cancer survivors emphasized that changes within the healthcare system are needed. Cancer survivors advocated for healthcare resources that focus on promoting wellness in survivorship care, rather than reacting to illnesses, including second cancers. A strong message from cancer survivors is that there needs to be appropriate use of healthcare facilities for both people who are being treated for active cancer and those have survived cancer.

Continuity of follow-up cancer care is needed. Study participants were conflicted about who was the most appropriate healthcare professional to provide survivorship care—family physician or oncologist. Some did not know which healthcare professional they should consult for routine follow-up visits or if any health problems arose. Not knowing who to turn to left cancer survivors "in limbo," resulting in feelings of frustration and isolation. Study participants recommended that access to lifelong follow-up care could be achieved either through collaborative care between their family physicians and oncologists, or healthcare professionals dedicated solely to delivering survivorship cancer (eg, nurse practitioners).

Being Honest Common to many survivors' accounts of taking care of second cancer risk were assertions of a lack of satisfactory dialogue about second cancer risk with healthcare professionals. Honest communication about second cancer risk was highly valued by study participants as it served as the foundation of a trusting relationship between cancer survivors and healthcare professionals. Survivors who had trusting relationships with healthcare professionals reported feeling a sense of control over their second cancer risk.

Being Informative Information about second cancer risk is a prerequisite for making decisions about how to take care of that risk. Important to information sharing is what Tracey, a 39-year-old survivor of endometrial cancer, described as the "push and pull of information." The push of information refers to healthcare professionals' sharing of risk information about second cancer risk with cancer survivors. The pull of information is cancer survivors' ability to use such second cancer risk information, if they want it. This finding suggests that healthcare professionals need to consider survivors' readiness and desire for second cancer risk information and enable survivors to take as much or as little information as they wish.

In this study, most survivors wanted to know that they are more or less at risk for developing a second cancer or they may potentially develop a second cancer, rather than second cancer risk statistics. Study participants cautioned that statistics about second cancer risk should be used sparingly for 3 reasons: (1) risks statistics are difficult to understand; (2) risk statistics are not trustworthy because cancer is unpredictable, and there are too many factors to consider in predicting the likelihood of getting cancer again; and (3) risk statistics may generate unnecessary worry if the information does not change that risk. Regardless of how second cancer risk is framed, what is most important for study participants is that the determination of their second cancer risk is supported by evidence.

Healthcare professionals need resources to promote information sharing on second cancer risk. Study participants suggested that appointment reminders and automated visits may be effective as an "extended warranty" in the event of a second cancer diagnosis. Navigating the current healthcare system requires an educated and empowered cancer survivor. Of particular importance to study participants was meeting other people who have survived cancer, identified as a way of finding out what other cancer survivors do to manage their risk of developing a second cancer. Cancer prevention messages, particularly those with testimonials from cancer survivors, are helpful because "regardless of whether you've had cancer or not, you still have to take care and try to do what you can to not make yourself vulnerable to cancer of various types" (Tracey, 39-year-old survivor of endometrial cancer).

Being Respectful Being respectful involves careful consideration of a person's cancer history in providing care. Cancer survivors reported that some healthcare professionals treated them in a way that implied that the cancer experience was long over and that the disease was successfully treated. Thus, when cancer survivors went for a checkup or presented with vague symptoms, these healthcare professionals minimized the likelihood of current or future problems. Study participants emphasized that they are neither "cancer hypochondriacs" nor paranoid about future second cancer risks. No matter how long a person has survived, cancer survivors' health needs and concerns need to be taken seriously, not dismissed lightly. Thus, healthcare professionals should avoid what study participants called "tunnel thinking"—thinking that a person can have only 1 cancer.

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