Saturday 20 July 2019

'Cancer patients tell us that losing their hair is worse than diagnosis...'

The physical changes that occur after cancer treatment can be devastating for patients and their families. But what about the psychological impact, and is enough being done, asks Ailin Quinlan

Naomi Fitzgibbon, Nurseline manager with the Irish Cancer Society
Naomi Fitzgibbon, Nurseline manager with the Irish Cancer Society

Ailin Quinlan

You may lose your hair, your breasts, your figure, your fertility and your job to cancer, but that's not the end of it - your self-esteem, sense of identity, sexuality and even your relationship can fall victim to the psychological impact of this disease.

You may lose your hair, your breasts, your figure, your fertility and your job to cancer, but that's not the end of it - your self-esteem, sense of identity, sexuality and even your relationship can fall victim to the psychological impact of this disease.

Many cancers have such a significant physical effect that a person's appearance can change drastically - temporarily or permanently - while the functioning of certain body parts can also be seriously affected.

All of this can have a deeply negative psychological effect on a patient's body image, says Dr Sonya Collier, a clinical psychologist specialising in psycho-oncology and principal clinical psychologist at St James' Hospital in Dublin.

"Head and neck cancer cancers can result in scarring, for example," she says.

"Some people would be on medication, which can cause them to put on a lot of weight. This can be difficult for them.

"They could have situations where they meet friends who no longer recognise them, which can be very distressing.

"Some problems are temporary, such as hair loss during chemotherapy. The hair will often grow back, but it may not be necessarily ever the same again.

"Straight hair can grow back curly and vice versa, or it can grow back in a different colour, so people can still look different to before, which can be upsetting for them."

Often a person's deep despair over losing their hair, for example, will manifest through a routine request for information, reports Naomi Fitzgibbon, Nurseline manager with the Irish Cancer Society for the past 12 years.

"You might be talking to someone looking for a booklet of information… the psychological issues will come up in terms of how they're coping or not coping."

During the course of a practical discussion about sourcing the right wig, for example, a woman can become deeply upset at the prospect of losing her hair - despite the fact that, in most cases, it will grow back again.

"It's about the psychological fear of losing your hair; it's such a visible sign that your body's going through these huge changes," says Fitzgibbon, adding that patients can also face the loss of eyebrows, eyelashes and other body hair, which can be deeply traumatic.

"Some people have told us that the loss of their hair was more devastating than the cancer diagnosis."

People can also become distressed because certain body parts are no longer functioning as they used to, Collier observes. "After head and neck cancers, people can have difficulty speaking and eating. Following ovarian cancer, patients may lose their fertility," she points out.

In the case of breast cancer, breast loss is common. Women may undergo partial, full or bilateral mastectomies, and will often experience significant issues with body image as a result, says Naomi Fitzgibbon.

However, she emphasises, huge advances in breast- reduction techniques, higher levels of expertise and more refined techniques are resulting in vastly improved outcomes:

"There have been huge advances in breast reconstruction.

The techniques are better. The procedures are more refined and are carried out with greater expertise and less scarring - there can be nipple refashioning or the nipple may be saved," she points out, adding that there is also an option for women to use skin, tissue and blood vessels from their abdomen or back in the construction.

However, says Fitzgibbon, even when treatment is finished and successful, many survivors find that 'normal life' is not what it was - it's a 'new normal,' and there is adjustment to be made to that new normal by themselves and by their families.

Sadly, in some cases, this 'new normal' can be turbulent - sexuality issues or serious relationship problems can manifest as a result of the huge physical and emotional ordeal which constitutes the cancer journey.

"Women may see themselves differently. Your confidence in your femininity and sexuality can be altered because of what you've been through - the surgery, the treatment and the psychological impact of being diagnosed with cancer."

If a woman is not in a steady relationship, she may experience difficulty in gaining the confidence to return to the dating scene where she may find herself in a position of having to tell her cancer story, says Fitzgibbon.

"It's a minefield," she comments, adding that challenges may also lie ahead for those in steady relationships.

"The woman is going through all these emotional changes and having to adjust to this new way of life, and the last thing on her mind may be sex.

"The loss of that to the relationship is huge for the couple, and can be a cause of great sadness for the woman and her partner."

However, a sexual relationship may also become so altered as a result of the after-effects of having had cancer, that it may never be the same again.

"The couple's relationship can be altered. A man may not want to look at his wife, can't take it or can't cope with it - and may even leave.

"Cancer is a huge trauma and, for some people, the whole dynamic overturns their relationship upside down and the fall out can be too much to bear."

However, body image issues are not just confined to female cancer patients - they're just as likely to have a significant impact on men, particularly younger men, who tend to be more concerned with their appearance than previous generations, says Dr Paul D'Alton, head of the Department of Psycho- oncology at St Vincent's, and president of the Psychological Society of Ireland.

"The impact of cancer has a similar impact on men.

"Some of the facial cancers or skin cancers, for example, can have a huge impact on men's self-esteem and on how they feel about themselves when it comes to their sexual relationships.

"A part of their body has been removed or mutilated and the psychological impact of this has a huge effect on their sexual functioning, on their sense of themselves as attractive, and often on their sense of themselves as strong and resilient. This is a huge challenge, emotionally and psychologically."

Yet, he warns, it's a difficult one to tackle in the context of men's traditional reluctance to seek help or even talk about their feelings - and points out that many psychological services are tailored to the needs of women.

"I think we need to be creative about the kinds of therapy we offer," says D'Alton, who with the Bray Cancer Support Centre, set up a successful allotment project for men with cancer in the town nine years ago.

"Men often find emotional conversation very threatening, so the idea was to have conversation based around an activity so that the men converse when they're doing something like weeding or planting vegetables or digging.

"Men have had a lot of training over the years that emotion equals weakness. They'd run a million mills from group therapy," he says.

Yet, he points out, research shows that between 30pc and 40pc of cancer patients will experience significant anxiety or depression related to readjustment to life following treatment - and male survivors are no exception.

Despite this, says D'Alton, just two of our eight acute cancer hospitals have dedicated psychological services, despite the fact that it was recommended as far back as 1999 that the emotional and psychological care of cancer patients was an essential element of their treatment programme.

"The failure to implement any of the recommendations about the emotional care of cancer patients, going back as far as 1999, is simply not good enough, and as a result, we are failing cancer patients and their families in this country," says D'Alton.

"Failure to care for the emotional needs of people with cancer is neglectful."

It's important to understand, however, that although a negative body image as a result of cancer often causes distress, says Dr Collier, it is "on a continuum".

"For some, it is an inconvenience, while for a small number of people, it can lead to more serious problems such as depression.

"For many people, time will help them adjust, or maybe they finish their course of medication and return to normal body size, or their hair grows back or as they get used to their new appearance.

"It is a hugely individual experience and there is a very wide variety of coping styles," says Collier.

The psychological impact of the disease is often linked to the inner meaning that people place on physical changes, she says - for some, their scars may be an inspiring reminder of having survived something, while others can become very focused on what they have lost.

When it comes to intervention, she says, the level of distress being experienced must be matched by the appropriate level of intervention:

"For some people, support groups can be helpful.

"For others, reading up on information or talking to friends and family can be helpful, and for others, psychological therapy can be beneficial," she says, adding that it is important to come to some level of acceptance.

"People with mild distress will not need much more than talking to a good friend, and some time, but people with more severe level of distress may need psychological treatment such as talking therapy or CBT," she says.

She adds that she has found that some survivors find it helpful to consider the story of Angelina Jolie, who underwent a preventative double mastectomy and the removal of her ovaries and fallopian tubes because of her high risk of cancer.

The Irish Cancer Society offers a counselling services and also provides patients with the opportunity to speak with somebody who has gone through a similar experience to them and whose recovery is well advanced.

But for men, many of the available services are simply unsuitable, says Dr D'Alton.

"Men are very slow to ask for help and a lot of services that do exist are tailored to women.

"Men don't want to have a conversation face-to-face with someone, so the services and the environments that exist are often not suited to men and that's something that has to change," he says, adding that he believes the emotional needs of men with cancer have often been ignored or minimised.

Irish Independent

Editors Choice

Also in Life