ANAHEIM, Calif.—Sexuality is important to cancer patients, and there is a professional and ethical obligation to address it with patients. That was the message from Anne Katz, RN, PhD, Clinical Nurse Specialist and Sexuality Counselor at CancerCare Manitoba, speaking here at the Oncology Nursing Society Annual Congress.
Sexuality is embedded in part in who we are as individuals, and also in who we are as couples in our relationships, Katz explained. And if couples are not talking about changes in sexual health during and after cancer—and not trying to resolve potential problems—all of that can affect the relationship and affect quality of life.
“Cancer introduces the need for pills and potions and lotions and devices, and it sometimes requires couples to do things differently. All treatments affect anatomy and physiology—and sexuality is affected even if cancer is not of the sexual organs.”
For example, she said, during radical prostatectomy, even if the nerves are “theoretically” spared, there is traction—pushing and pulling. During surgery for colorectal cancer, blood flow and nerves are impacted. And patients are also affected psychologically by treatments. “Radiation to the anal area can be devastating psychologically.... The patient is extremely vulnerable and extremely exposed—lying in lithotomy position on a table.”
The reality is, though, that talking about sexual health with cancer patients too often does not happen.
‘Valley of Silence’
Katz cited a survey of 819 cancer survivors (including male and female patients, with a variety of cancer types) that found that only 45 percent of patients reported receiving information from an oncology provider about how cancer or its treatment could affect their sex life (Psycho-oncology 2012;21:594-601). Yet according to those findings, 78 percent of those patients reported that they thought it was important to have discussions with health care professionals about their sexual health problems.
“Can you imagine if half of our patients getting chemotherapy were not told about the risk of nausea or neutropenia?” Katz said. “So how come it's acceptable to not talk about sexuality?”
Some health care providers skip the discussion because they see the topic as more of “a novelty”—not a life-or-death issue for patients, she noted. Others avoid asking an opening question or ignore patients' attempts to start the conversation. Studies have shown, however, that even though many oncology nurses agree that sexual health concerns are an important part of cancer care, they often go unaddressed because of: nurses' own lack of knowledge; incorrect assumptions about patients' sexual preferences—based on factors such as age, disease stage, or sexual orientation; or sometimes because of the health care providers' fears of the reactions from their colleagues as being identified as talking about sexuality with patients (Supportive Care in Cancer 2009;17:479-501).
“Talking about sexuality is where talking about death and dying was 20 or 30 years ago—and we need to break out of that valley of silence,” Katz said. “When we don't give permission for patients to talk about this, we give the message that this is a taboo. And when we don't introduce the topic, we imply that it is not important.”
How Patients Prioritize Sexual Health Needs
A recent survey of 113 women with gynecologic cancer found that patients reported sexual health needs were among their top unmet supportive care needs (Oncology Nursing Forum 2014;41:297-306). Women in the study were given a list of 67 supportive care needs and asked to rate their level of difficulty with each. As the study's lead author, Megan McCallum, PhD, a recent graduate of the Clinical Psychology doctoral program at the University of Ottawa, explained in a phone interview, both “changes in the ability to have sex” and “changes in sexual feelings” ranked among the top 10 unmet needs.
“That answered the question of whether sexual health difficulties were as prominent as some of the other supportive care needs,” McCallum said. “Yes—certainly these needs are very present.”
The surveys also asked women to report whether or not they wanted help addressing those concerns. Whether or not such symptoms are causing patients distress, and whether or not they desire a “fix” for these symptoms are important factors to understand—because they will affect how well interventions will work and how patient-provider discussions about these issues should be handled, McCallum added.
Of the women who reported having difficulty with their ability to have sex, 46 percent wanted help (42% were uncertain). And of the women who experienced difficulty with changes in sexual feelings, 45 percent wanted help (50% were uncertain).
“While a majority of sexually active women experiencing sexual health difficulties reported they were bothered by their symptoms, some indicated they were not—which emphasizes that individual factors contribute to distress and the need for help,” McCallum said.
When asked specifically about their sexual health needs and changes, 67 percent of the participants reported having at least one sexual difficulty—40 percent reported feeling worried about their sex life, and 76 percent reported having low or no sexual interest.
“These results are telling health care providers that they shouldn't just be asking about whether patients experience symptoms. They need to be asking ‘is this a problem for you?’ before assuming that they should be offering resources.”
Asking the Right Questions
The message from health care providers about patients' sexual health concerns should be that it is important to talk about them and that resources are available to help patients meet those needs, Katz said. “Ask them if they need help. Ask them if they're having issues. Assess what they know and what their current sexual functioning is.”
It is the responsibility of providers to help find solutions to patients' problems, she added—and if needed to arrange for referrals or follow-up.
“Patients trust us, and they want to talk about it,” Katz said. “We have a very real role to play in raising this topic with our patients. Tell the patient that you will find resources for them if you don't know the answer to the question. Invite and assure the patient that you will talk about sexual side effects just like you talk about everything else.”
How to Have the Sex Talk with Patients
In her talk, Anne Katz, RN, PhD, noted that although health care providers may not be able to answer every question from patients' about his or her sexual health concerns, they do have an obligation to be able to refer patients to the resources they need. For example:
- Talk about it during prehabilitiation: “Prehabilitiation”—the time between diagnosis and the start of treatment when providers should be assessing patients physically and psychologically to prepare patients for their treatments ahead—is getting more attention of late (OT 10/10/13 issue). And, it's an ideal time to talk about sexual health concerns, Katz noted—“because we can talk about what healthy sexual function is and get an understanding about what our patients understand about how their treatment is going to change their sex lives and their relationship. We can start some anticipatory guidance and education.”
She also pointed to these two strategies for having a productive conversation with patients about their sexual health concerns to both assess needs and provide useful feedback:
- The BETTER Model: A seven-step nursing model that can serve as a stepwise approach to talking about sexuality with patients (Clinical Journal of Oncology Nursing 2003;8:84-86). The key message is to give patients permission first to talk about sexuality and then give information at a level they can understand.
- The PLISSIT Model: A shorter, psychology-based model for facilitating the discussion about sexual health concerns with patients (Annon J: The Behavioral Treatment of Sexual Problems, 1974). Patients want validation that what they are experiencing is not uncommon, Katz explained. Offer “limited” information—enough to address their concern—but in a way that does not overwhelm the patient. Then make a specific suggestion for a referral to someone with the needed expertise if the need is outside your scope of practice—perhaps a gynecologist or urologist—so the patient can get the therapy he or she needs. “Inherent in this process is to reflect and review,” Katz noted. “Ask the patient to repeat back what was just explained to help assess their understanding.”
Discussing Fertility and Cancer
Another under-discussed topic addressed at the meeting were patient concerns about fertility and parenthood after cancer treatment.
“Studies focused on young cancer survivors indicate that they want to be parents after treatment—but many do not recall being told of their risk of infertility or about options for fertility preservation,” Joanne Kelvin Frankel, RN, MSN, AOCN, Clinical Nurse Specialist at Memorial Sloan Kettering Cancer Center, said during the meeting's Clinical Lecture, “Parenthood after Cancer Treatment: Discussing Fertility with Your Patients.”
“Many patients are completely overwhelmed by their diagnosis—and it may not even have occurred to them that their treatment could impair their fertility. I cannot emphasize enough the need for health care providers to initiate this discussion.”
- A recent prospective multicenter study that surveyed 620 women with early-stage breast cancer who were 40 or younger, found that 57 percent reported being concerned about fertility at the time of diagnosis, and that one third of the patients did not recall discussing the impact of their cancer treatment on their fertility with their health care provider (JCO 2014;32:1151-1156).
There is no way to predict with certainty whether any one individual's fertility will be impaired after cancer treatment, but there are many resources available to categorize risk as high, intermediate, or low, Frankel said. Even for patients scheduled for surgeries or treatments that pose no risk of infertility, additional adjuvant chemotherapy may pose fertility risks; or disease relapse that necessitates more toxic treatment in the future also has the potential to impair fertility. “Not everyone wants to, or should, undergo fertility preservation—but everybody has the right to hear about their risks and options so they can make an informed decision,” she said.
- The most recently updated guidelines from the American Society of Clinical Oncology, Frankel noted, emphasize that it is the responsibility of all health care providers—including oncology nurses—to discuss fertility with cancer patients (OT 7/10/13 issue).
Frankel provided an overview of the effects of cancer treatment on reproductive health and options for patients to preserve fertility before cancer treatment. And, for more information for providers and to refer to patients, Frankel recommended these resources:
- Livestrong Fertility (livestong.org/we-can-help/fertility-services);
- Heart Beat (ferringfertility.com/savings/heartbeat);
- American Society for Reproductive Medicine (asrm.org); and
- Society for Assisted Reproductive Technology (sart.org).