Kate Jones1
(1)
Faculty of Health and Social Care, Edge Hill University, Ormskirk, Lancashire, England, UK
Kate Jones
Email: kate.jones@edgehill.ac.uk
Head and neck cancer contains oral, pharyngeal, and laryngeal cancers. In the Western world, they represent 3 % of adult cancers with a 5-year survival rate in the 45–70 % range. About two-thirds of these cancers happen in males (because of the strong connection to alcohol and smoking).
At the time of diagnosis, patients are justifiably concerned about their survival and about the best potential outcome that can be offered to increase their life span. Subsequently, the quality-of-life indicators discussed are focused on the immediate physical challenges that may be experienced as part of the treatment rather than long-term psychosocial concerns. For the professionals, disfigurement is probably the main quality-of-life indicator that is explored as part of the buildup to treatment, as professionals recognize the psychosocial risk and its links to depression, feelings of isolation, and potential relationship breakdown.
As nowadays patients are presenting at a younger age and with the potential to survive past the 5-year life expectancy for head and neck cancer, the issue of sexuality takes on greater importance. There are several opportunities throughout the patient’s journey where patients and their partners could be supported. The first phase is during the discussion about the diagnosis and treatment expectations. Alongside the potential physical challenges come the emotional adjustments and relationship challenges [1]. Identifying if a patient is single or in a relationship (and in what kind of relationship) is key to understanding the potential challenges they may face.
Having an appreciation of how the foundations for an intimate relationship are developed, assists professionals to recognize the challenges a person may face when undergoing radical treatment for head and neck cancer. There are a number of values that people place on a relationship, usually with clear differences between female and male.
From a female perspective, the foundations are relatively more built on trust, emotional security, and perceived desirability. Women value their ability to communicate their emotions and desires when building a relationship and place emphasis on the level of emotional connection achieved within a relationship. The greater the emotional stability observed, the more trust that is perceived to exist within the relationship and the stronger the relationship is seen to be. For many women, their physical appearance plays a significant role when building this emotional security, and so a change in appearance can have a devastating impact not only on their desire to initiate or respond to sexual contact but also on future intimate relations.
In contrast, men relate more easily to intimacy as a physical union, preferring to display their feelings rather than describe them. Emotional displays such as ongoing virility, physical strength, continuation of their role as a provider are examples of this. If this emotional stability is undermined within a relationship, a resolution is necessary if the relationship is to survive. Those with a strong sense of self-awareness often confront the changes head-on and adapt their emotional connections to rebuild their relationships; others may seek support to make these adjustments, while some will simply choose to dissolve the relationship [2]. Having an understanding of the complexity of individual relationships can help to determine the cause of a patient’s concern and assist the potential offer of support. If the impact is one of physical appearance, reassurance regarding post-treatment cosmetic improvements (e.g., orthodontic reconstructions and cosmetic implants) should be explored with the patient.
When clarifying the extent and position of the patient’s head and neck cancer, clinicians are also able to determine which functional deficits are likely. When identifying these risks, it should also be apparent that these deficits will have the potential to impact on a patient’s intimate relationship.
For example, if the cancer is located within the oral cavity, the patient will be made aware of the risk of losing salivary glands, a loss of sensation inside the mouth, and altered function which could impact on eating and swallowing. In addition, the patient should also be made aware of the impact that a dry mouth and loss of sensation will have on the function and sensation of kissing and oral sex. If the cancer requires the removal of bone and teeth, the change in shape of the mouth and lower jaw will also require patients to adapt their kissing technique [3]. If part or all of the tongue is to be removed, sexual desire can be impaired significantly, and patients need to be aware that sensation, confidence, and willingness to resume their intimate relations with loved ones may become a real concern post treatment. The disturbance will be bigger in the relationships where the partner was used to receiving oral sexual stimulation. In some cultures, up to a quarter of women rely on such stimulation to achieve orgasm. Among homosexual men, oral sex is the number one sexual interaction.
For those considering aggressive chemoradiotherapy treatments for advanced head and neck cancer diagnoses where long-term survival outcomes remain poor, this should be a particular concern, as the quality-of-life outcomes may help to determine the type of treatment taken up.
From a laryngeal perspective, the altered airway can lead to a fear of suffocation and can impact on the buildup of mucus and the range of noises emanating from the stoma before, during, or after any intimate activity [4]. The buildup of mucus and the cacophony of sounds emitted from the stoma can be both distressing and embarrassing, and can lead to the avoidance of further intimate contact if not managed effectively. Strategies such as the use of music to act as a distraction can be a simple but effective way to overcome this. Ongoing discussion during treatment to determine the range of treatment burdens the individual and their partner are facing can help to determine the type of psychosocial support/advice needed.
During treatment, the change in relationship status from partner to carer and the shift from independence to dependence for the patient becomes more notable. Radical treatment can have a considerable impact on a person’s ability to communicate, eat, drink, and maintain physical intimacy. In addition, patients regularly experience severe episodes of lethargy. This increased tiredness and loss of familiar social activities can precipitate a momentous shift in lifestyle for patients and partners [5]. While this change can bring some people closer together, for others, it leads to a notable rift in their relationship. The offer of trained therapist support to explore options for sharing intimacy through touch could be significant for these couples. Couples who are able to remain sexually active during treatment should be made aware of the need to use protection during chemoradiotherapy treatment, as partners could be subject to a risk of exposure through vaginal fluids or semen otherwise [6].
Post treatment is often the time most couples will look to adjust their lifestyles to accommodate their new circumstances. Appropriate advice at this point can be instrumental in supporting a couple to reinstate their sexual relations.
For many, the ability to consider sexual activity as a natural and spontaneous event can be lost, as the changes to the mouth or airway require intimate exchanges to be planned and prepared for. Patients may need to perform suction to reduce the risk of mucus buildup, those with a dry mouth will want to moisten their mouths, and others may need to secure tubes (tracheostomy/gastrostomy) for comfort and stability. Saliva-based products are, for many, considered unhelpful as they have an unpleasant after-taste, and cold water remains the most acceptable lubricant as it is fresh plain and reduces the risk of a coughing fit that flavored drinks/lubricants can cause.
In addition, the actual act of sex may require partners to reconsider if their former sexual practices are still feasible or if they now need to rethink their routines. Practical sexual advice should be available as part of the post-treatment phase to allay patients’ fears and promote their recovery, if possible, both verbally in the clinical context, and also in the department’s information leaflet and website.
In more severe cases, the ability to reach a climax during sex can become an issue. The treatment burdens brought on by surgery and/or chemoradiotherapy are numerous, and while practitioners are comfortable considering the issues of lethargy, nausea, and vomiting, radiotherapy burns and hair loss, the discussion around reduced libido and erectile dysfunction remains unmentioned [7].
Changes in erectile function can become more noticeable for men already in their 40s. Although the desire to enjoy sex may be unaltered, the physiological process of building up an erection becomes less reliable. Long periods of lethargy and inactivity can reduce not only sexual desire but also impair the physiology of erection. If patients are aware that this could be a risk, more patients may be willing to disclose such a concern, as it would be viewed as a treatment burden rather than a weakness on the patients’ behalf. With PDE5-inhibitors (sildenafil, vardenafil, or tadalafil), part of the disturbed erection physiology can be restored and erectile dysfunction averted.
Similarly, women have the same potential loss of sexual desire; however the resolution for this is less clear. A combination of therapy and sometimes hormones may be more appropriate in these circumstances [8].
The diagnosis of a head and neck cancer and subsequent treatment challenges should expand on both the physical and psychosocial risks as part of the debate to build a realistic picture about their potential treatment choices. As treatment burdens occur, effective support strategies should be explored to promote an acceptable quality of life for those recovering from head and neck cancer.
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