Living with Osteosarcoma Cancer: Emotional and Physical Care

Treatment for this condition – using surgery and chemotherapy – means families quickly realise that surviving cancer is much more than just the medical care provided. Day-to-day life during treatment is very different from how it was; visits to hospital, the consequences of treatment, and emotional strain are things people must now adjust to. Most families are unprepared for the prolonged effort cancer treatment requires. 

Osteosarcoma affects entire families, and not only the person who is ill, and so creates emotional and practical problems that continue long after the final course of chemotherapy. Understanding both the needs of physical health and the psychological effects enables families to devise ways of supporting patients throughout treatment, and into the future. 

Emotional Impact on Children and Adolescents Undergoing Treatment 

Teenagers with cancer experience the illness differently from younger children; they are aware of death, but lack the emotional maturity to process the intensely frightening anxieties it causes. They understand osteosarcoma threatens life, can lead to severe disfigurement, and will prevent them from experiencing the normal developmental stages their friends are enjoying. This understanding causes worry, anger and sadness - feelings which younger children may not at first fully grasp. 

A substantial issue is the loss of control, as treatment dictates when and what they can do, and even what their bodies can do. As teenagers increasingly want to be independent, being obliged to depend on parents and their medical team is particularly frustrating. Some become withdrawn and silent, others are angry with family members because they cannot restore things to how they were. 

Concerns about appearance also become much more acute in adolescence, when peer acceptance and physical presentation are so vital. Hair loss from chemotherapy, surgical scars, having an altered limb, and weight gain or loss all affect a patient’s self-image. 

Supporting Parents and Siblings Through Prolonged Difficulty 

Mothers and fathers frequently suppress their own feelings as they devote all their energy to their ill child or children, gradually exhausting themselves to the point of being unable to cope. The pressure of needing to be optimistic, organising things and making crucial decisions about treatment, alongside fear, creates immense stress. Marital relationships can suffer if partners react differently to events, or if they stop communicating as the anxiety continues. 

Brothers and sisters do not receive the attention they deserve, because parents understandably give all their time to the sick child, or children, who require so much care. The youngest may not understand why family life has altered so greatly, though older ones sometimes take on inappropriate caring roles. Resentment, guilt about feeling resentful, and fear of a sibling’s death create complex emotions which families struggle to resolve whilst the illness is being actively treated. 

Professional counselling is beneficial for many families, helping them to deal with their emotions constructively, rather than letting unexpressed problems cause long-term damage to those involved. Some people find it more helpful to be in support groups with families experiencing the same difficulties, than to have one-to-one therapy.  

Managing Physical Side Effects in Daily Life 

Osteosarcoma chemotherapy causes predictable side effects, and families become accustomed to what to anticipate – and how to manage it – as treatments are repeated. Nausea is often at its worst two or three days after receiving the drugs, but then gradually improves until the next treatment. Being aware of this allows people to schedule activities for when they are likely to feel well, but to be ready for poor days by not having too much arranged. 

When white blood cell counts fall to dangerously low levels – neutropenia – the risk of infection greatly increases, so activity must be restricted and strict hygiene is essential. Simple things – washing your hands, avoiding crowds, and taking temperatures – will turn into daily routines. 

A temperature with neutropenia is a medical problem and should be checked in hospital, whatever the time. Families find tiredness more difficult to manage than they expected; it reduces energy even when treatment isn’t happening. This isn’t tiredness that sleep can fix; fatigue from cancer continues even with rest. 

School Return and Social Contacts 

Long times off school disturb learning and the friendships that are vital to teenagers’ self-image. Though students may have lessons at home, many still fall behind with schoolwork – as this isn’t really the same as being in the classroom. Schools will adapt to help with physical problems, thinking difficulties from treatment, or tiredness that makes it hard to focus.  

Returning to social life is usually more difficult than catching up with school, because friends are still maturing, but those who are unwell are concentrating on recovery. Friends may not understand how to discuss cancer, and so may not speak or avoid the person. Some friendships strengthen when someone is seriously ill, but others end as people no longer share interests. 

Changes to PE allow participation while protecting areas that have had surgery, or artificial limbs, from injury. Certain students who’ve had cancer would like sports courses made for cancer survivors, instead of usual lessons changed. 

Body Image and Identity Changes After Treatment 

The clear effects of treatment – like changes to limbs, scars, hair, and weight – affect how patients think about themselves, and what they believe others think of them. Teenagers are frequently already insecure about their bodies, and changes from cancer make that worse. In time, these changes do become part of who people are, although people deal with them in very different ways. 

Artificial limbs or aids to movement attract attention, which some patients don’t mind, but others find very shaming. Getting used to people looking or asking about these things helps patients to feel more relaxed in public. A few welcome visible differences as proof of having survived cancer, but others prefer not to be seen, and so use clothing or posture to lower attention. 

Comprehensive care plans at centres like Fortis Hospital, Kalyan, Mumbai, combine emotional support with medical treatment; tackling worries about body image at the same time as becoming physically well. These groups of experts from different parts of medicine know that being well really means emotional as well as physical recovery. 

Money and Practical Issues Affecting Families 

Even with insurance, treatment costs quickly rise, and expenses like copayments, travel, accommodation, food, and time off work from jobs make money tight for families. As a result of the stress this causes, some parents reduce their working hours, or stop work altogether to manage the needs of the person they are looking after; which makes the family’s financial position worse. 

Financial problems from treatment are a real result of the illness that cancer doctors are beginning to see more of, and are trying to assist with. Social workers help families to get financial help, benefits from disability allowances, and donations from charities to lessen the costs. Many hospitals have emergency funds to pay for urgent things – such as parking, food, or short-term housing. 

Support from Others Who Have Had the Same Disease and Community Help 

Contact with other families who have had osteosarcoma gives a kind of validation that doctors cannot always offer. What is experienced together makes the sense that friends – who have not had cancer – with the best of intentions, cannot give. Hospitals have support groups locally; and nationally, organisations connect families with each other using the internet. Schemes which match families recently told their child has osteosarcoma, with families further into treatment or in remission, exist.