How cancer affects the families of patients

Breast cancer is the second-biggest cause of death among women in the UAE, but rarely do we consider the physical and mental toll this fatal disease takes on its victims’ loved ones. From anxiety and depression to physical ill health, the effects can be enormous, for adults and children alike. This week, Friday speaks to experts about the effects of breast cancer on the families of patients.

Loved ones are greatly affected by the cancer journey, says Dr Thoraiya Kanafani, clinical director at the Human Relations Institute and Clinics. ‘They feel completely helpless in stopping the cancer from progressing. Not only are they dealing with their own grieving process of accepting what is happening, but they also must manage the emotions of the individual suffering with breast cancer and their acceptance of their journey.’

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‘At times, loved ones neglect their health in terms of mental, emotional, and physical well-being, which not only affects them greatly but also ultimately can make the diagnosed individual feel guilty.’

It’s something that is affecting many in the UAE: According to breast cancer charity Pink Caravan UAE, one in eight women will be diagnosed with breast cancer in their lifetime, making the disease the second leading cause of death among women in the UAE and the most commonly diagnosed cancer in women. Abu Dhabi Health Authority Abu Dhabi says it is the second most common cancer in the emirate overall.

The journey of fighting breast cancer can be long and unstable, for victims and their loved ones. ‘Cancer can definitely cause an emotional roller-coaster for loved ones as they pass through stages of remission and recurrence,’ said Dr Thoraiya. Instability can be devastating. ‘They may feel hopeful when the diagnosed individual is in remission and go back to devastation when there is a recurrence. They must cycle through uncertainty and feel dejected about starting anything in their lives since the cancer can return at any time. Severe changes may also cause anxiety and depressive symptoms in loved ones.’

UAE resident Mohammad’s wife was diagnosed with breast cancer in 2009 and has since made a full recovery, though the psychological scars in many members of the family, are still fresh. With three children, then aged 2, 7 and 9, it was a tough journey for the whole family. Watching mum lose her hair and become almost recognisable as the cortisone began to balloon her normally slim, slight frame, was something confusing for the children, though they would not be told of the true reasoning.

‘My wife was diagnosed with cancer which had spread to many parts of the breast,’ he said, requesting anonymity for his family. ‘Immediately she began a rather aggressive process of treatment.’ He remembers the first two weeks as clearly today. ‘Waiting for the test results, the biopsy, is the worst time. You know something is wrong but you have no answers. It’s a waiting game and you don’t know what to do.’ The inevitable sleepless nights, comfort eating, and rocketing stress levels ensued.

According to the American Cancer Society, the five-year relative survival rate for women with stage 0 or stage I breast cancer is close to 100 per cent while for women with stage II breast cancer, the 5-year relative survival rate is about 93 per cent. This drops quite dramatically for those with stage III breast cancers to roughly 72 per cent, though often, women can be successfully treated. However, breast cancers that have spread to other parts of the body are more difficult to treat and tend to have a poorer outlook. Stage IV breast cancers have a 5-year relative survival rate of around 22 per cent.

Farah Dahabi, clinical social worker and program coordinator of Raymee Grief Center at the Lighthouse Center for Well-being in Dubai, agrees that the roller-coaster can be hugely detrimental to those on the support side. She said: ‘As families move through a cycle of tests, treatments, and more tests, they often experience an emotional cycle of hope, discouragement, and frustration.’

In turn, this can manifest in many other ways. ‘Witnessing a loved one battling cancer or any terminal illness is physically, emotionally, and spiritually exhausting. Living with the chronic uncertainty and fear over your loved one’s health can cause difficulty concentrating, fatigue, a heaviness or tightness in your chest, nausea, and a feeling of being disoriented. At times it can be difficult to maintain normal functioning when there’s a part of your life that feels like it’s falling apart.’

This is especially hard for expats when the loved one is living far away. ‘It is a common response for expats living in Dubai to feel somewhat guilty for not being closer to a loved one who is unwell, or being able to take more time off from work, throughout the duration of their loved one’s illness,’ she said.

It is vital that loved ones take care of themselves, she says. ‘This is not an act of selfishness. Taking better care of themselves with adequate sleep, nutrition, and exercise will allow them to be more present for their loved one.’

It is even more necessary after a loss, though not everyone can afford the luxury of counselling. The Raymee Grief Centre is the only such centre in the Gulf that provides free-of-cost individual and group support sessions. It is a service that can prove a lifesaver for many left behind. ‘While not everyone requires professional support after loss, it is important to understand what to expect from grief, how to heal through it, and know where to find additional support if you need it,’ she said.

Dr Thoraiya says many can suffer with what has been termed ‘survivors’ guilt’. Even understanding how to treat those suffering is vital, says Farah: ‘It is important to remember that when someone you love is dying, that they are still living. Continue to speak to them in a dignified manner with empathy, love, and respect.’

Dr Thoraiya agrees, saying many relationship dynamics can change dramatically. ‘Obviously, a diagnosis of breast cancer can be extremely scary and life-changing, not only for the individual diagnosed but also for their family and loved ones.

‘Each individual will respond differently to the diagnosis. However, more often than not, there appears to be a pattern of effect on family and loved ones of someone diagnosed with breast cancer. In terms of partners, there seems to be a change in the dynamic of the relationship and individual roles are adjusted. There are many different ways a partner may respond. Some partners feel the need to know everything and put pressure on the diagnosed partner. Others become overprotective and somewhat parental. Additionally, some partners try to remain overly positive, making it difficult for their diagnosed partner to share negative feelings about the treatment. Others find it hard to adjust to the changes in lifestyle or do not change anything at all, hence minimizing the seriousness of it. Regardless of the response, these are examples of how the partner may behave due to feelings of fear and feelings of helplessness to the diagnosis and life change.’

While Mohammad chose not to seek help, he says for many, it’s vital. ‘Knowing how to cope with things to be the best support you can be is very important. The morale of the patient is as important as any of the treatment so helping keep that high, knowing how to speak to them, how to act, what to say, it’s all so important. For many couples this really takes a toll on their relationship. We know people who have divorced since the wife recovered as she felt so unsupported during the process. For us we are lucky, as it brought us closer together, but not everyone is as lucky.’

Young children can become confused and even clingy, while teenagers can feel scared and helpless, resulting in them distancing themselves from home or the diagnosed parent, while older children may even become protective and parental, says Dr Thoraiya. For Mohammad’s eldest daughter, the scars are still very much raw. Now 17, being apart from her mother as she travels to university, is already taking its toll. ‘The separation anxiety is huge,’ said Mohammed. ‘She has always been extremely worried whenever either of us has anything wrong, and she is very anxious to even leave her mother now. She is afraid that if she is away, something will happen and she won’t be there.’

The relationships affected go far beyond the immediate family. ‘Extended family and friends may feel left out and confused of how to behave. They may want to spend time with the individual but do not want to contribute to exhausting them or taking them away from their partner or children. Feelings of anxiety, fear, and helplessness emerge as well.”

Dr Joyce Habib, oncologist at HealthBay Polyclinic, says families can often be ‘forgotten’ along the way after a diagnosis. She said: ‘We offer support to women as they go through their diagnosis and treatment, however we sometimes forget their families. Because our main focus becomes treating the cancer itself, we sometimes fail to address the broader context of family-level impact and coping.

‘Powerlessness and ambivalence are dominant feelings experienced by family members and loved ones throughout the disease, whether it’s during the initial diagnostic phase, throughout the treatment period, at the time of recurrence or during the palliation phase if the disease becomes advanced.’

She said many family members may hide their own emotions due to the guilt. ‘They tend to think that because they are not the ones who are sick, their sole focus should be to support their loved one and suffer quietly,’ she said. ‘Children may not be able to express these feelings at all and their anxiety may manifest itself through changes in behaviour, like acting out or becoming distant.’

These effects are not exclusive to breast cancer, of course. ‘As a patient, you feel like you’re losing control over your life. You have no control over how you’ll respond to the treatment, whether you’ll positively take to it or struggle with cancer-related side effects. It feels like your body and life have been hijacked by the disease. Everything else has been put on hold. It’s an emotional roller-coaster every step of the way. It is important to be mindful of the psychological impact cancer can have on a patient and their family. This is why psychological support should be an integral component of oncology care.’