A diagnosis of cancer is one of the most devastating things someone can hear. After such shocking news, it is normal for a new cancer patients to feel a range of emotions, ranging from severe emotional distress, to despair and to rage. But for some patients, even after the initial confusion and grief have dissipated, a serious mental health issue may develop. In some cases, symptoms like post-traumatic stress disorder have been reported. Psychosocial help may be needed for many cancer survivors.
New treatments and earlier diagnosis mean that cancer patients are surviving the disease in greater numbers and, thanks to targeted treatment, even living with cancer. This has many implications for research and public policy, which were discussed at 35th Congress of the European Society for Medical Oncology (ESMO) in Milan, Italy.
The 8th Patient Seminar, held within the ESMO Congress, brought together representatives of patient groups and health professionals to discuss the needs of cancer patients and survivors. Cancer care today focuses mainly on biomedical treatment. However, cancer patients and survivors experience a range of psychological and social problems, which cause additional suffering. Patient associations are lobbying for appropriate psychosocial care to be provided, as well as state of the art treatment.
A growing number of cancer survivors
?The good news is that cancer today does not necessarily mean death,? said Francesco De Lorenzo, cancer patient. Professor of Biochemistry and President of the Italian Federation of Volunteer based Cancer Organizations (FAVO). ?The number of survivors grows continually, but this poses new challenges. These people want to go on to lead useful lives and have the best quality of life possible. Once treatment is completed, there are still physical side-effects, but that is not all: long-term rehabilitation needs to take into account social, psychological, sexual, nutritional and other factors.?
Current targeted therapies have brought new hope, with some patients living with cancer on a long-term basis so that it can be considered a chronic illness. Prof Jean-Charles Soria, cancer specialist at the Institut Gustave Roussy, France, and spokesperson for ESMO, explained: ?During recent years, molecular targeted therapies (MTT) have yielded substantial clinical benefit in patients with advanced breast cancer, colon cancer, head and neck cancer, non-small cell lung cancer and renal cell carcinoma. Moreover, the knowledge in molecular biology has led to a new classification of cancer and the identification of promising treatment targets. For example, we cannot consider breast cancer as a homogeneous disease: breast cancers are different molecular diseases with different outcomes and different sensitivity to therapy. To treat a patient in 2010 you need to know which genes drive his cancer. This is the basis of a new strategy to treat cancer called: ?personalized medicine?. MTT will probably continue to increase the overall survival of more and more patients with advanced cancer.?
Elisabetta Iannelli, a young Italian lawyer has benefited from the progress of medical science and now lives thanks to a targeted therapy. ?For patients, life is divided in two: before and after being diagnosed with cancer. Beyond the actual treatment, many social factors help a patient live through cancer: support from family, true friends and co-workers. The possibility of continuing to work is very important. So is getting adequate psychological help. Depression is one of the worst enemies for a cancer patient, so psychosocial rehabilitation should exist from the beginning in order to ensure the best quality of life,? explained Mrs. Iannelli, who is an active member of various Italian patient groups such as AIMaC and FAVO.
?Cancer patients want more holistic approaches. Rehabilitation should consider ingredients such as social support, educational and stress management interventions. The proportion of cancer patients suffering from psychological problems is about 30%. They report clinically significant depressive symptoms, anxiety and post-traumatic stress symptoms, sexual and sleep disorders,? pointed out Dr Luigi Grassi, Professor of Psychiatry University of Ferrara, Italy and Chair of the Federation of Psycho-Oncology Societies (FIPOS). ?In my experience, patients that have finished their treatment live in a sort of limbo, with anxious preoccupation about their future, fear of recurrence of the disease and difficulties in returning to a ?normal? life that ?by definition- cannot be normal.? In Dr Grassi?s experience, the main psychological characteristics that help a patient through illness are: ?the capacity to consider stressful events controllable and not only determined by chance; the capacity to give meaning to the event, reframing it in new and more constructive terms and the capacity to express emotions and ventilate feelings.? According to Dr. Grassi, families and friends are an important source of support and patient associations have a fundamental role ?in order to create awareness that cancer is a social disease, affecting millions of people around the world,? he concluded.
?It is very important for the patient to feel he/she is not alone,? said Mrs. Iannelli. ?Joining a patient association can provide a rich network. Cancer is still a taboo and excluded from polite conversation in our society and people often find it difficult to relate to cancer patients. Patient groups can help because people feel free to speak openly about their disease and their feelings. Patient associations also provide useful information and contacts. Scientific societies can also promote full rehabilitation by supporting a holistic approach to the patient and advocating for the humanization of care.?
Quality of Life
Sanja Rozman, representing EuropaDonna, the European Breast Cancer Coalition, also feels that the ?prejudice that cancer was a deadly disease meant that if you were lucky enough to survive, your quality of life was not supposed to matter. Also health professionals were often overburdened with ?fighting in the first lines? and lacking in resources to pursue other aspects of cancer rehabilitation. Now it is considered an exciting whole new world of knowledge, which is beginning to be included in National Cancer Plans. When I speak at seminars what I want to tell experts is: ?you are not treating cancers, you are treating me! Money is definitely a barrier, but the cost-effectiveness of rehabilitation is very favorable to investment in holistic care. Patients who receive psychosocial support spend less days in hospital and return to work faster.?
Kevin Stein, psychologist and Director of Quality of Life and Survivorship at the American Cancer Society (ACS) agreed: ?Support is extremely important and even more so when patients move from inpatient to outpatient care and have to rely on informal caregivers such as family members. It is important for patients to have help, but also to identify what type of support they can expect from whom. Some people will provide emotional support (good listeners) others will be eager to provide tangible support: helping with meals, shopping and other chores or activities. Today we also see the growing importance of online support. Due to the emergence of social networking, cancer patients and survivors can join online communities to find the peer to peer support they need.?
Awareness that rehabilitation for cancer patients goes beyond the physical is not the same everywhere. ?As more and more patients survive cancer in Western Europe, and due to the weight that cancer patients associations have achieved, there is a widespread interest in rehabilitation. Unfortunately, new members of the EU are still dealing with problems related to diagnosis and availability of treatment,? said Prof De Lorenzo.
Stella Hanusz, President of the Romanian Cancer Association, ?Common Destiny?, pointed out that in her country the priority is dealing with the physical aspect of the disease. ?There is a medical follow-up that lasts five years after treatment, but this only concerns physical recovery. Unfortunately, the emotional condition of patients in all phases (diagnosis, treatment and post treatment) is not considered. Psychological rehabilitation is completely forgotten because the old health system still prevails. Mentalities also need to change because in our society cancer diagnosis may still be associated with death.? Mrs. Hanusz also believes in the importance of patients joining associations that can offer a range of programs to ease re-integration into society. ?Scientific societies also make a substantial difference: by publishing and promoting the positive results in the battle against cancer, they can educate and influence public opinion?, she said.
Kevin Stein thinks that a huge shift in attitude towards the disease has taken place in the United States in the last 20 years. ?Before, cancer was considered a death sentence. With more than 2/3 of patients -from all cancers combined- surviving for 5 or more years adding to a total of about 12 million survivors in America today survivorship care has become an important subject of research. The field of psycho-oncology has grown rapidly with sophisticated literature and important studies being published. Two reports have had a big impact on care for patients who are leaving or have left the healthcare setting. One is: ?From cancer patient to cancer survivor: Lost in Transition? and the other is: ?Cancer Care for the Whole Patient?. These reports have helped create awareness among the medical community for the need to care for the whole patient, meeting psychosocial as well as health needs.?
Dr. Stein said that following the longitudinal and cross-section studies carried out in the US, more intervention studies are now needed. ?We need to assess the situation, but we also need to learn how to intervene to help people. The creation of the ?Office of Cancer Survivorship? (OCS) by the US government is a step in the right direction.?
?Up to date information on long survivorship in Europe and data on the relative service capacity demanded are lacking? explained Dr Andrea Micheli, Project Leader of the European Cancer Health Indicator Project (EUROCHIP). ?A great deal remains to be done. National Health Services should start by including the PREVALENCE indicator (population-based frequency of people who have experienced a cancer diagnosis) among the measures for assessing the problem of cancer. Due to the growing number of survivors, new professional roles need to be created (social workers and counselling on many issues related to life quality, diet, physical activity and psychological support). The barrier is of course the allocation of funds. Without the support of legislation, the less advantaged in our societies will continue to experience the worse scenarios?.
Prof De Lorenzo pointed out that in Italy alone, there are over 1.700.000 people who have or have had cancer and 250.000 people are newly diagnosed with the disease every year. He believes the full integration of cancer patients is crucial to all of society. ?Most cancer patients want to continue working and should be allowed to do so. Laws must be put in place to help people work part-time during treatment and to go back to work once they have recovered. Working is essential to psychological wellbeing and it is also important for a country?s economy. Efforts to create awareness that cancer is a curable disease must continue, so that cancer patients are not discriminated or pitied, for this communication is very important. Lastly, as the cancer patient population grows all over the world, strategies for comprehensive rehabilitation: physical, psychological and social, from the moment of diagnosis, need to be put in place, to ensure equal access to the best quality of life.?
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– Maggie Watson. Psychsocial issues in cancer (2001)