Living with cancer

Can you continue working and studying despite having cancer? – “Yes, this is possible with many types of cancer. There are only a few treatments or severe disease courses where we recommend complete sick leave,” says Prof. Florian Lordick. “Here in Leipzig, we have many patients who want to continue working or pursue their studies – and with our support, they often can.”

In principle, however, each patient must also decide for themselves how much they can take on. Illness and treatment place significant demands on both body and mind. “But I generally advise that the essential things that belong to a person’s life should be continued,” says Prof. Lordick. “Many people define themselves through their work, need the challenges or the sense of achievement in their job. That is why they want to remain professionally active. Or young people who are diagnosed with cancer in the middle of their studies: they often want to continue – as far as possible – to stay active and keep learning. If the motivation is there and there are no medical obstacles, I agree with that. Work and study provide stability, give structure to the day, and add meaningful content to life.”

Prof. Anja Mehnert-Theuerkauf recommends finding solutions together with supervisors and works councils so that work or study can continue despite cancer treatment. Solutions can certainly be found that allow temporary breaks or a gradual return – during therapy, for example, so that important exams can be taken, or in professional life or studies, so that necessary treatment steps can be carried out. A severe disability card strengthens the patient’s rights; for example, an employer may then not dismiss a cancer patient. Also important are offers for medical-vocational rehabilitation and comprehensive counseling services within oncological rehabilitation, which many patients find helpful.

“Work or study help with coping with the illness,” says Prof. Mehnert. “Because a network consisting of family members and friends, as well as colleagues, is important for the patient. It helps if existing social contacts can be maintained.” In addition, the psychologist advises talking with other affected individuals, seeking information, and exchanging experiences. Among peers, there is good advice, shared experiences, and practical solutions. “You are not alone with your very specific problem – and that is important,” she emphasizes.

Even if work or study cannot always be combined with the strains of illness and therapy: “Many cancer patients are highly motivated to return to work after treatment,” says Prof. Lordick. “This means that patient, employer, and treating physician must carefully plan what happens after cancer. What impact will the treatment have? What kind of work can the person do? How should possible limitations and changes be communicated? These decisions must be considered very carefully. But our physicians and counselors at the cancer center also have experience with this kind of forward planning, which is very useful for patients.”​

Cancer patients may develop severe physical and mental exhaustion during the course of their illness and treatment. “This exhaustion syndrome, which we refer to as tumor-related fatigue, is unfortunately one of the common side effects of cancer and its therapy,” says Prof. Lordick. “A general lack of drive, constant difficulties with concentration, fatigue and weakness that cannot be compensated by sleep and rest – this results in significant limitations for patients in their work and family life.”

Physicians and psychologists at the University Cancer Center Leipzig attempt to address this exhaustion syndrome medically. “First, we must rule out that the fatigue has organic causes. A dysfunction of glandular tissue, such as an underactive thyroid, could be responsible for the state of exhaustion,” explains Prof. Lordick. “We may also need to modify the cancer therapy, or depression may be the underlying cause.”

“Fatigue is usually a multifactorial condition that is not easy to treat,” says Prof. Mehnert-Theuerkauf. “Because during treatment, patients constantly compare their physical condition with how they were before the illness. This can lead to a negative perception that becomes depressive.” It is therefore important to set realistic goals in the treatment plan and to create phases of recovery.

In addition to medication – and often even more important than medication – physical activity and psychological support can help. “In the past, the advice was: rest, rest, rest. Today we know that moderate exercise is better for the body and mind of cancer patients,” emphasizes Prof. Lordick. “For example, many patients have a disturbed sleep-wake rhythm. A structured exercise program can help restore healthy sleep. Ultimately, movement changes blood circulation and heart rate, and also activates the autonomic nervous system. All of this is good for the body and also lifts the mood.”​

“If the person with cancer has a partner, that partner is, of course, included in our care,” says Prof. Lordick. “Because we know: the partner is also burdened by the serious illness. On the other hand, the patient is not left alone; the burden is shared.”

Partners often come along to consultations at the University Cancer Center Leipzig. “This stabilizes the patient, gives strength and confidence. It also ensures that the patient does not have to make important decisions alone,” says the Leipzig oncologist.

The emotional burden on relatives – and especially on the partner – is often even higher than that on the patient, emphasizes Prof. Mehnert-Theuerkauf, and explains why: “The patient is, of course, the main focus of treatment. In this situation, the partner must, in addition to worrying about the patient, take on many extra responsibilities. These include assuming the functions of the person who is ill in everyday life, organizing many things, seeking information about the disease and treatment options, usually maintaining external contacts alone, and often caring for the children alone. That is a lot to carry.”

Psycho-oncologists support relatives in not overwhelming themselves completely with these new tasks. “The partner also needs opportunities to replenish their energy reserves. Many relatives overextend themselves in this situation – often out of love and care for the patient – without thinking about themselves. This can lead to an extremely high burden on relatives. That is why it is important to recognize one’s own limits and seek support.”

Partnership and sexuality belong together for many people – even in times of serious illness. Of course, desire is affected by treatment, and possible physical limitations can intensify the problems that may arise. Stable partnerships can withstand these strains; nevertheless, joint psychological counseling can be useful in some relationships and can promote closeness and openness, say Prof. Lordick and Prof. Mehnert-Theuerkauf.

Both partners know that they are experiencing an exceptional situation and can only overcome it together. Of course, sexuality and intimacy can change due to the illness, for example because of functional limitations or the feeling of no longer being attractive, which is often a burden for both partners.

Sometimes this creates a vicious cycle. The ill partner feels ashamed of their perceived inadequacies and therefore withdraws from the healthy partner. The healthy partner, in turn, thinks the patient needs a lot of rest and does not want to impose. “As a result, each withdraws into themselves – and in the end, they live side by side rather than together. When the illness is over, it is difficult to move toward each other again. Therefore my advice: talk to each other, also share your concerns, your fears, and your worries. A partnership is not only for sunny days, but also for difficult times. And: overcoming a threat together can incredibly strengthen a partnership,” says Prof. Mehnert-Theuerkauf.​

“The diagnosis of cancer comes as a complete shock to most people,” says Prof. Dr. Florian Lordick, Director of the University Cancer Center Leipzig (UCCL). “Of course, everyone has dealt with the topic before when it concerned relatives, colleagues, or friends. But when you are affected yourself – it really hits you.” For the treating physician, the first priority is a thorough assessment of the situation and the medical facts. This means establishing an exact diagnosis of the type of disease and its extent. Only then is meaningful therapy planning possible.

“At the cancer center, we try to explain the entire process to patients in detail,” emphasizes oncologist Prof. Lordick. “We know that delivering the diagnosis is a special situation. Therefore, we talk not only about the current status, but also about the next steps, in order to draw attention to the light at the end of the tunnel. After all, we can completely cure more than 50 percent of our patients.”

Those affected experience many fears and feel great uncertainty, confirms Prof. Anja Mehnert-Theuerkauf, Head of the Department of Medical Psychology and Medical Sociology at the University Hospital Leipzig. “That is why it is very important to build a relationship of trust between the patient and the treatment team. At the beginning, the person concerned will need time to get used to a thought that no one ever wants to get used to. Initially, many simple practical questions often need to be clarified, from sick leave to who will take care of the cat while one is in the hospital. As time goes on, these also become questions about how to cope with the illness and the many psychosocial burdens that go along with it. That is also why constant communication with relatives is important. When the family stands together, many things become easier.”

Speaking of communication: it is important that patients understand their doctor. When Latin terms are flying around the room – who, as a patient, likes to admit that they do not understand a word? “Communication training is playing an increasingly important role in medical education,” says Prof. Lordick. For this purpose, a newly developed national training curriculum exists. At Leipzig University, Prof. Mehnert has been implementing a very innovative communication training program for physicians in cancer medicine for quite some time. Patients at the UCCL can be confident that their treating physicians always try to switch as quickly as possible from professional medical language to patient-friendly language.

“We psycho-oncologists hold consultation hours twice a week at the UCCL, and one of my colleagues is always available on the wards,” says Prof. Mehnert-Theuerkauf. “This means that any patient who wishes to take advantage of our offer always has a trained and qualified professional at their side who can talk and explain, but also listen and provide counseling. That is part of a certified cancer center like the UCCL.”​