Our Facebook Group Head & Neck Cancer Support

Coping with Cancer

As we prepare to hear another talk about the psychological aspects of head and neck cancer on 2 July, it is worth republishing this excellent talk by Sandy Carell. 

What are the  psychological effects of head and neck cancer?

We were privileged to hear a talk by Sandy Cavell, then of CMDHB on 4 June, 2015. 

Sandy Cavell, health psychologist at the ORL module at the Manukau Superclinic, was our speaker today. Sandy has conducted a lot of research into the psychological effects of this cancer, including into “unmet needs” and “benefit findings”. Sandy barely got through her slideshow by 11.45 because there were so many questions and comments.

There is no dedicated psychologist for head and neck patients at Auckland Hospital. Counties Manukau is fortunate to have Sandy. One bright light is that all hospitals will be audited in future against the new National Standards for Head and Neck Cancer. The Ministry of Health will have to provide funding for more psychologists. We should have one at the Multi-Disciplinary Meeting. (At this point in time (July 2017, Sandy is no longer at CMDH and I don’t think there is a psychologist at the MDMs.)

We discussed the tendency of patients to get depressed six months or a year after treatment. The attention is off you and you realise this is how it’s going to be. Another factor is social isolation.

If partners are also given attention, patients do better. People can go through the grief cycle after diagnosis but when you get to acceptance, coping is easier. Acceptance is a powerful position to be in. Sandy is setting up an Acceptance Commitment Therapy group at the Manukau Superclinic.

“Benefit finding” is a concept that drew some gasps of disbelief. How can you get any benefit from having this cancer? However a number of people say it’s made them a better person; they’ve realised the importance of relationships; they’re more patient. One of our group said that cancer is “a filter of things that are important and things that are not”. Sandy has had one of her articles about this published in a medical journal. Here is a link to the abstract: http://www.ncbi.nlm.nih.gov/pubmed/25634065.

(Thesis findings in an Auckland Head and Neck Outpatient Clinic in 2009 showed that 90% experience some benefit and 60% more than three benefits. It is related to active coping and optimism. You can still experience negative effects.)

What about anti-depressants? Sandy said that people need to be monitored from diagnosis and through treatment. Medication is useful.

Why does head and neck cancer have higher distress rates than other cancers? It’s more visible. When speaking is a problem it’s hard to vocalise your feelings. The social side is also important and as mentioned before, people can become isolated. We are social animals. We need to SCHEDULE social activities. It’s very hard to explain what is wrong to a stranger but each individual has to find a way to tell people what has happened to them.

Quality of life is an interesting issue. The definition of QoL is “a state of complete physical, mental and social wellbeing not merely the absence of disease or infirmity” so is not directly related to physical health and function. There is often an improvement in QoL one year post- treatment and a decline after 10 years. This could be because of the long term side effects of radiotherapy. QoL twelve months post treatment is associated with survival.

Forty percent of patients show signs of depression/anxiety with anxiety more common before treatment and depression after it.

High rates of fear of recurrence have been reported in studies. High fear of recurrence causes increased distress and hypervigilance. There is a difference between awareness and checking yourself and this extreme fear. Unfortunately getting to five years is no guarantee of a cure. Statistically five years might indicate that the cancer is unlikely to come back but individuals can experience a recurrence after five years. Belonging to a support group can release some of this stress.

What are the best coping strategies? Most effective is active engagement not avoidance and denial. “Active coping” is related to higher QoL. “Denial coping” is a strong predictor of future health anxiety. More effective coping is related to lower depression and anxiety, higher benefit finding and better health status. Active coping means active engagement with the problem. “Dispositional optimism” comes in handy here as well. We didn’t have time to discuss this. Something to think about.

Perceptions of the illness can be inaccurate and affect active coping. Self-blame is not helpful either because life is very much random. Denial on the other hand can lead people back to smoking and drinking. “Mindfulness” is a useful idea: being fully in the present.

Patients from some cultures believe they have to be staunch, adding more stress. Pain is also a stressor but can be dealt with. Even a patient who does not have a limited life expectancy can be referred to palliative services for pain relief.

Studies show that patients might need psychological support twenty years after diagnosis.

Summary

• The strong need for psychological support for patients and families is becoming more recognised.

• Functional deficits and long term effects of radiotherapy adversely affect social interaction and lower a patient's mood.

• Increased research is being done into the psychosocial effects of head and neck cancer.

 

Diana Ayling

Coping with Cancer

A series of articles providing support for those coping with cancer. Many thanks to Amy Richardson for making these materials available from her PhD research.