I need to start with a disclaimer. This chapter represents one patient’s view on psycho-oncology. I am a stage IV metastatic melanoma patient, president and founder of the Melanoma Independent Community Advisory Board, a pilot project of the European Cancer Patient Coalition (ECPC, Brussels). I am also a psychologist and an academic living in Brussels. I started writing this chapter 1 week after my latest PET-CT scan showed again continued progressive disease. My objective here is to illustrate how my psycho-oncological needs have greatly varied throughout the different stages––Ib to IVc––and describe how I responded to those needs as a function of the psychosocial care that was available to me in my path.

Psycho-oncology was suggested to me when the first tears welled up during one of my early diagnosis consults in 2008. After an early stage Ib “caught in time” melanoma I had progressed to a stage IIIc by March 2009. I sat in that small stuffy room while my husband told me it would be fine, and the dermatologists and an intern were telling me they would help me take care of it, while the nurse was changing the dressing on it. Like in a bad B movie time stood still and we all did our best to play according to the scripted roles. The hope we all had was that a psycho-oncologist referral would take care of the emotional distress part, which clearly seemed a separate section of cancer care. It was also the one part of my care that we were all the most uncomfortable with. In retrospect, psycho-oncology was presented as a different chapter––if not a different volume––of my cancer story. I did not know at the time that psycho-oncology was in fact a subspecialty of oncology with its own body of knowledge contributing to cancer care. I now know research in this area addresses both (a) patients’ psychological reactions to cancer and (b) the psychosocial and behavioral factors that may lead to cancer (Holland 2001). As a patient I have high expectations about (a); and as a researcher I remain skeptical but curious about (b).

I was trained as an experimental social psychologist at the University of Queensland in Australia, and I did a Ph.D. in the area of cognitive appraisal theories of emotion at the University of Geneva in Switzerland. When I became “the patient experiencing emotional distress” because of cancer I must confess I initially amused myself by applying well-known stress theories to myself (especially the model of Lazarus and Folkman 1984). I noted the different appraisals that would drive my new cancer emotional landscape including emotions such as numbing fear, anxiety, sadness and despair, and anger and hostility. In fact my Ph.D. thesis was about how our social identities (group memberships) can affect our appraisals and emotions (Garcia-Prieto 2004). I have often used social identity theory strategies (Tajfel and Turner 1986) to counter social identity-threats. For example by creatively redefining my cancer social identity in counter stereotypical ways, or by bringing attention to my professor dimension and away from the patient dimension during an interaction with a doctor, or by engaging in cancer patient advocacy and activism, just to see what would change in me and others. I just have fun with this. After all, even today the cancer social identity remains highly stigmatized by our society and the discrimination one may experience because of the cancer membership can actually lead to increased levels of stress and damage health even more. In a way, with cancer it feels like you have to pay your bill twice as you have to deal with the cancer and you have to deal with the stigma of cancer! So many of my multiple group identities (being an academic, a psychology professor, trained as an experimentalist, working in an economics and business school, codirector of a research center, etc.) represent a great psychosocial resource on which I draw when I am confronted with any hint of discriminatory behavior due to cancer. Of course, the stereotyping of cancer patients is not just done by others (she is a young mother fighting cancer for her children, she is a terminal patient, she is a difficult patient) but also by ourselves (I am an activist battling tooth and nail to join a trial, or I am a resilient cancer patient, I am cancer patient who believes in euthanasia, etc.). There is enough research on how social identities and all the stereotyping and intergroup-related processes can positively and negatively affect health (Hardwood and Sparks 2003). For me it has become an art form to strategically negotiate my way through the many available cancer social identities.

In response to stressful cancer-related situations I have used both problem-focused coping (navigated my care across the best specialties in five hospitals, researching the potential clinical trials I could access before going for my appointments, enquiring about my health rights as a EU citizen, etc.) and emotion-focused coping (binging on dark Belgian chocolate when I would have thoughts of recurrence, purchasing a very expensive leather jacket right after a “bad” PET-CT scan). Truth be told, in that first year after the diagnosis I naïvely thought I knew enough about the psychological aspects of distress to go at it alone. Until the day came that I physically collapsed on the floor in front of my two young kids, exhausted from the interferon injections, and trying to keep up being an academic, mother, wife, and “know it all of the psychology of cancer” patient. I accepted that I was strong enough to search for my first psycho-oncological consultation.

Luzia Travado (current treasurer of International Psycho-Oncology Society (IPOS)) has reported that there is a great variation in access to psychological services in oncological centers in Europe: if you look at national cancer plans only 19 countries have psycho-oncological services (Beishom 2011). I live in Brussels and thanks to the work of Prof. Darius Razavi the “tracks” of psycho-oncology in Belgium are well defined. I found a great psycho-oncologist and felt comforted by familiar methodologies set clinical goals and experienced results quickly. I wanted a cognitive-behavioral perspective. I did not want a group therapy, I did not want a psychiatrist. I wanted to feel in control, to know the independent variables, mediators, and dependent variables of “my experiment of one”. Part of me believed that the psycho-oncological intervention in combination with a good anticancer diet and attitude (Servan-Schreiber 2007) could actually reduce my chances of relapse. At the very least I hoped it would prevent some sort of posttraumatic stress or depression. I did well for a beginner I guess. I knew the cognitive-behavioral approach was sound and evidence-based, proven to be just as good as antidepressants and I felt it worked at least for a while. I then started finding the relief of “relapse-anxiety” would only last the time between consults, and I did not like the feeling of being dependent on the psychologist and on the occasional low-dose Xanax my oncologist could prescribe. Interestingly, like the rest of my medical team (surgeon, dermatologist, oncologist, and nurses) I too perceived my psychological needs as a separate issue, the side dish or dessert, but clearly not as the sauce of the main course! Now I can look back and say without a doubt: psychosocial issues in cancer are grossly underestimated.