Being diagnosed with cancer can radically disrupt life in physical, emotional, social, practical and philosophical terms. It’s important for the (para) medical care provider to pay attention to possible complaints a man with breast cancer may experience. A tool for easily detecting and discussing problems is the Distress Thermometer (see below). A patient can fill in this short A4 questionnaire before the interview, after which the complaints can be specifically discussed during the consultation. Whether he needs additional (psychosocial) care can also be discussed.
In addition to physical complaints, a breast cancer diagnosis and treatment can often lead to emotional problems such as anxiety, insecurity, depression, anger, despair and impairment of self-esteem and control [guideline ‘Detecting the need for psychosocial care: http://www.oncoline.nl/detecteren-behoefte-psychosociale-zorg]. In addition, breast cancer in a man can evoke feelings of disbelief (‘men can’t get breast cancer, right?’) and lead to negative or stigmatising responses (‘breast cancer is a woman’s disease’), both for the patient and his loved ones. The disease and treatment can also cause shame and a negative influence on the body image. The feeling of being ‘less of a man’, or feeling less attractive, is also reported in the literature (France et al. 2000; Iredale et al. 2006; Kipling et al. 2014; Robinson et al. 2008).
Social & work
Men with breast cancer can also experience social consequences, for example when he becomes lonely and/or dependent. Some men may be closed off about their illness to others, to avoid stigma and shame (Pituskin et al. 2007). This could cause personal relationships and social activities to change. Another possible change, due to the disease or treatment, can occur in the work situation.
Being able to continue working is often experienced as important. Work can be an important source of emotional support and financial independence. Not being able to work during or after the disease process can reinforce the feeling of being ‘less of a man’. The feeling of being useless and hopeless can sometimes lead to depression (Kowalski et al. 2012). Many people with cancer experience problems with resuming work (see the Cancer and work guideline: https://www.nvab-online.nl/content/kanker-en-werk). Because problems can also occur much later after treatment, it is important for the medical professional to discuss these issues with a man with breast cancer early during the treatment (see Recovery and cancer guideline).
The confrontation with cancer can sometimes lead to an existential crisis. It raises questions as to what is important and meaningful to a man with breast cancer (see Spiritual Care guideline). Spiritual caregivers working in the hospital can help with discussing questions concerning meaning.
Even after treatment
New questions often arise, even once treatment has been completed. For example about fatigue, fear of the disease returning, work, relationships, sexuality, lifestyle and finances. It is important that the (para-)medics actively ask about this and, if necessary, refer the patient for additional care.
Signalling psychosocial problems
The burden that people with cancer and their loved ones can experience emotionally, socially, practically and philosophically as a result of the cancer disease, its treatment and the physical problems that can be associated with it, can be summarised in the term distress (NCCN 2017). A high degree of distress is seen in about a quarter of men with breast cancer (Brain et al. 2006). The (para)medics must provide the patient with basic psychosocial care. This consists of, among other things, good information, initial care in the event of bad news, support with dealing with the illness and signalling distress.
Without systematic signalling, there is a high risk of under-diagnosis of distress and under-treatment. This is worrying because it has been demonstrated that patients experiencing distress have a lower quality of life, have more difficulty making decisions about treatment, adhere less to treatment prescriptions, seek medical care more often, which equates to higher healthcare costs and are less satisfied with the medical care they receive (Kennard et al. 2004; NCCN 2017; Skarstein et al. 2000; Von Essen et al. 2002). It must therefore be signalled in time and at various times in men with breast cancer, to see whether there is a case of distress and/or a need for care.
It’s possible for a man with breast cancer to resolve any problems himself with the help of family and friends, his doctor, nurse specialist and the (oncology) nurse. It’s also possible that a man with breast cancer needs extra support during treatment or afterwards. The Distress Thermometer can help to ensure a man with breast cancer receives support at the right time from the right healthcare provider. [click here for the Distress Thermometer].
Or the online version: http://www.lastmeter.nl/
This questionnaire consists of a ‘burden thermometer’ and a problem list. The thermometer measures the severity of distress on a scale of 0-10, where zero is ‘no burden at all’ and ten ‘severe burden of problems, complaints and concerns’ (Mitchell 2007). The problem list contains at least 35 problems/ symptoms which must be answered with a ‘yes’ or ‘no’. It covers the following subjects: practical problems, family and social problems, emotional problems, religious/ spiritual problems, physical problems and possible other problems (open field). It’s then concluded with the question of whether the patient would like to talk to an expert about his problems. It’s important to realise that the Distress Thermometer, with the problem list, is only a tool to start a conversation about problems a man with breast cancer may be experiencing as a result of the disease or treatment.
In addition to the Distress Thermometer, there are other questionnaires available in Dutch, which are suitable for charting problems in a simple way, such as the European Organisation for Research and Treatment of Cancer, Quality of Life Questionnaire-C30 (EORTC QLQ-C30), BSI-18 (Brief Symptom Inventory-18), the ESAS (Edmonton Symptom Assessment System), the RSCL (Rotterdam Symptom Check List) and the Screening Inventory of Psychosocial Problems (SIPP). See also the guideline for detecting the need for psychosocial care: http://www.oncoline.nl/detecteren-behoefte-psychosociale-zorg.
Referral for professional psychosocial care
Various interventions have been shown to have a positive effect on depression, anxiety and the distress experienced by patients (Akechi et al. 2008; Osborn et al. 2006; van Weert et al. 2005). Therefore, timely recognition of problems and, if necessary, referrals to the right psychosocial and/or (para)medical care provider, can improve the quality of life of men with breast cancer, satisfaction with (medical) care and communication with primary health care providers (Velikova et al. 2008).
Extra professional support
More support may be required in addition to breast cancer treatment. For various websites with information about psychosocial support and support when returning to work, look under information for patients and loved ones.
Referral to contact with peers
Some men like to establish contact with other men who have been treated for breast cancer after being diagnosed, during treatment or in the time which follows. Family members may also have a need for contact. Contact with peers offers the possibility of sharing experiences, exchanging information and asking questions. You can read more about the opportunities for contact with peers for patients and loved ones here at the Dutch Breast Cancer Society (BVN) and Kanker.nl.
Kennard, Beth D., et al. (2004), ‘Non-adherence in Adolescent Oncology Patients: Preliminary Data on Psychological Risk Factors and Relationships to Outcome’, Journal of Clinical Psychology in Medical Settings, 11 (1), 31-39.
Mitchell, A. J. (2007), ‘Pooled results from 38 analyses of the accuracy of distress thermometer and other ultra-short methods of detecting cancer-related mood disorders’, J Clin Oncol, 25 (29), 4670-81.
Osborn, R. L., Demoncada, A. C., and Feuerstein, M. (2006), ‘Psychosocial interventions for depression, anxiety, and quality of life in cancer survivors: meta-analyses’, Int J Psychiatry Med, 36 (1), 13-34.
Skarstein, J., et al. (2000), ‘Anxiety and depression in cancer patients: relation between the Hospital Anxiety and Depression Scale and the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire’, J Psychosom Res, 49 (1), 27-34.
Von Essen, L., et al. (2002), ”Satisfaction with care’: associations with health-related quality of life and psychosocial function among Swedish patients with endocrine gastrointestinal tumours’, Eur J Cancer Care (Engl), 11 (2), 91-9.