Shame, fear, cultural conditioning, ignorance of nomenclature, not to mention the pervasive sense of discomfiture, can make patients literally shut down with the perception that they will be embarrassed—or worse, criticized for even thinking about sex.
In the initial (private) patient-navigator dialogue, it is constructive to identify the issues we can assist with as we tuck sexuality needs/issues into the conversation along with more predictable necessities of living. This allows the patient to understand we can offer guidance in the unchartered journey the patient is involuntarily encountering.
A diagnosis of cancer confers an entirely new and foreign somatic concept upon an individual as he or she traverses the cancer journey. Surgery, chemotherapy, and radiation as well as the many supportive care therapies all impact a patient’s psyche and self-esteem. This easily creates a sense of profound grief and loss. Patients wonder about resuming sexual activity (if at all) during and after treatment. Many factors contribute to the patient’s sense of self, and it does not take much to alter that concept. Changes occur due to surgery and its sequelae because there are alterations in the function of structures important to sexual function, hormonal shifts, infertility, and impotence. These are overwhelming emotionally for most patients and caregivers and all too easily result in intense stress.
We know that stress is a mighty saboteur; it increases production of insulin and cortisol and shuts down our parasympathetic nervous system, which secretes our calming and somatically nourishing endorphins. The activity taking place in the limbic lobe of the brain, most prominently that tiny structure known as the amygdala, creates the physical and emotional reality of PTSD-induced stress where the hypothalamus/anterior pituitary/adrenal cortex all contribute to our elaboration of “sex hormones.”
Hence our patients need a GPS guide back to themselves.
As Ann Katz, PhD, RN, author of many excellent sexuality textbooks famously said, “Sexuality is much more than what we do in bed (or in the kitchen or on the living room floor). How we see ourselves as men and women is an integral part of who we are as sexual beings.” As navigators, we are positioned to assist our patients to regain a concept of self—to be able to find that place within themselves unmarked by pain where they can experience being at home within their sensual self. Recognizing that only a small percentage of patients describe a clinician-initiated mention of sex—and then only relatively brief and superficial, dwelling on side effect caveats—this is our preamble to a valuable interaction to guide that frazzled limbic system to a more successful self-paradigm.
There are many practical conversation models, such as the PLISSIT model of sex therapy and the Beiter Sexual Intimacy Indicator, that provide scripted tools, and in institutions with music therapists there is an opportunity to initiate conversations based on the experience of music as sensory input. Many of us have created our own personal “sexuality theme song,” so this is a good conversation starter. Remember sexuality is more than the physical act of intercourse. Speaking with patients about intimacy, touching, hand holding, and talking are all ways to help get back that sexual feeling without the physical act of intercourse.
The National Cancer Institute, along with the American Cancer Society, offers excellent online and printed material that provides a private tutorial encounter. After patients have had time to view, read, and absorb this information is an opportune moment to solicit their feedback, ask open-ended questions regarding their response to the materials and also ask direct questions such as, “Many patients being treated for cancer notice new problems in their sex lives. Would you like to talk about anything while it’s just you and me talking?” It’s amazing how many patients will see this as a moment to ask their questions, share their thoughts, or maybe simply cry and share their fears and frustrations, which gives the navigator insight into what type of follow-up intervention they may benefit most from.
Many myths are ubiquitous and very crippling to personal interactions and relationships, and navigators report calls from spouses asking if they can sleep in the same bed, use the same bathroom, and have sexual intercourse during treatment, and questions have been posed asking if the partner can “catch the cancer,” so open conversation is always to be encouraged for clarification and for reassurance. The distinctive and personal relationship developed between patient and navigator is an optimal setting for a successful channel of communication.
Tactile experience as well as use of the senses is quite therapeutic as well. At many institutions, therapy dogs are invaluable for not only their presence but also the physical palpability of a well-trained, gentle dog.
We are aware of the distinct hospital smells, and bringing a small lavender aromatherapy device is noticeably calming and creates a more relaxed atmosphere for meaningful conversation.
We are all familiar with survivorship care plans, which are crucial, but we must not forget activity care plans that will bring pleasure, relaxation, and sensory experiences as a couple. Giving patients a list of suggested activities utilizing your area’s resources, such as Laughter Yoga, Drum Circles, Labyrinth, and even couple-specific counseling sessions, can direct individuals toward thoughts of shared sensual enjoyment to indulge in together.
Cancer changes a life forever. As oncology navigators, we are positioned to connect with patients exactly where they are, support them, and offer positive choices even as we validate and normalize their personal experiences and help them prepare for their future, which, with our guidance, can facilitate their awareness of their sensual selves.
Following are 2 examples in which navigators are instrumental in starting the conversation:
- The nurse navigator is assessing a newly diagnosed 22-year-old female with nasopharyngeal cancer. As part of the pretreatment workup, the navigator asks if anyone has discussed fertility preservation with her, and she says no. The navigator then has a discussion with the patient regarding options, and she agrees to meet with reproductive medicine to discuss her options for fertility preservation.
- An 80-year-old male who is 18 months postsurgery for prostate cancer is having difficulty with hot flashes and erectile dysfunction. The patient asks his navigator to help with a urology appointment. In talking with the patient, she finds out multiple issues related to his sense of sexual well-being. They have a frank discussion about his concerns and develop a plan to move forward. The patient tells his navigator how grateful he was for her being open to talk with to him.