Lymphoma

Hairloss and body image

Many people expect and fear hair loss from chemotherapy. One woman said that it was the first question she asked her consultant. Not all chemotherapies cause hair loss but many people do lose hair from their head, face and body. Some people's hair just thins while others lose it all. Several people said the process of losing hair was worse than having lost it. For people who considered their hair an important part of their image its loss was deeply upsetting, although one woman also said it was interesting and strangely liberating.

Men and women sometimes chose to cut their hair short before treatment so it would be less traumatic for them (or their children) when it fell out. Wisps of hair often remained so people commonly shaved their heads. One man said his wife liked his shaven look. Friends or partners sometimes supportively offered to shave their head at the same time - a woman said this had been a bonding experience with her husband who had felt anguished that he could do nothing to help her. One man wished he had shaved his beard off in advance as bits dropped into his food. Some women were offered a 'cold cap' to try to prevent hair loss. 

Several people felt self-conscious and embarrassed about their baldness and were aware of people looking at them. Some considered hair loss a visible sign of the illness, although one man pointed out that it is an effect of treatment. A woman who had lost no hair said this meant she hadn't had to tell people about her illness. Some people had worried about how friends and colleagues would react to their changed appearance when returning to work or school. Women often realised that their bald appearance could shock people who weren't expecting it. Some people dealt with hair loss by making fun of it. A young man enjoyed wearing flamboyant wigs that his children bought him from a joke shop.

Most men who lost hair went bare-headed but sometimes wore a hat in the cold or in the sun. Some women went bare-headed at home but most wore hats, scarves or wigs outdoors. Wigs were available through the NHS but outpatients had to contribute to the cost, which put some people off. One woman had been horrified after going into hospital with a full head of hair to be faced with samples and catalogues of wigs. Some women bought wigs privately; some chose several in different styles or colours. Wigs can be styled to suit the person and can look natural and stylish. Some people liked their wigs, others wore them only occasionally because they found them hot or uncomfortable, were afraid they would come off, or felt it 'wasn't them'. 

Men suspected that hair loss was worse for women, yet several had found it upsetting. A young man had thought about getting a wig but then decided his baldness was an important part of his identity and saw no point in hiding it. 

Chemotherapy can affect all body hair and for some people the loss of eyelashes and eyebrows made the face blank and unrecognisable. One woman was more distressed about losing her lashes and brows than the hair on her head because she couldn't hide it. Eyelashes serve a purpose - people found they got more dust in their eyes when their lashes had gone. Some men said that not having to shave their chins for several months was one small bonus - a couple of women said the same about shaving their legs. 

One young woman kept her hair throughout treatment but lost a lot of it afterwards when she got shingles and scabs on her head and neck became infected. She needed skin grafts and still has some bald patches. She wore a wig and felt unable to live a normal teenage life, certainly not considering herself 'girlfriend material'. Another teenager who considered herself slightly overweight said she now felt 'fat, bald and ugly' so wouldn't consider having a relationship at that time. However, one young man did start a new relationship during chemotherapy. For more about relationships see 'Roles, relationships and sexuality'

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On regrowth, hair was sometimes curlier or a different colour. Some men suspected they had not regained the amount of hair they had before because of a family history of baldness. A man whose hair never grew back thought he might have started a fashion for bald or shaven heads. Although hair loss upset some people it was usually temporary and seen as a small price for successful treatment. 

Some people were affected by changes in their appearance other than hair loss, such as central lines, scars and weight changes. Having a central line in the chest for chemotherapy for several months (see 'Chemotherapy') made some women feel de-feminised and unattractive. People sometimes surprised themselves with what they could tolerate - a woman who thought she would have been squeamish about looking after her central line said she just got used to it and it 'became a part of me for 8 months'. 

Many people had small scars on the neck from having lumps biopsied but these were so tiny that they weren't considered a problem. An elderly man who had one of a pair of dewlaps (loose folds of skin on the throat) removed with his neck lump wished they had taken the other one too. A woman who had her spleen removed had a large scar across her abdomen from the operation; she wasn't worried about it as it was rarely on view, but she could feel a gap where her enlarged spleen had been.

People who had taken steroids as part of their chemotherapy had developed a characteristic 'moon' face. One woman said she looked 'absolutely dreadful' having a swollen face, no eyebrows, thin eyelashes and very short hair. By contrast, one young woman who vomited a lot as a result of her chemotherapy lost weight and didn't mind briefly resembling a supermodel when she returned to university after treatment.

A woman in her twenties said that even though during treatment she had felt as if she had lost everything that made her feel like a woman - her hair, her body weight, her periods - two years after diagnosis she felt 'absolutely fine. I feel healthy, I feel normal'. For more about sexuality see 'Roles, relationships and sexuality'.

Last reviewed February 2016.

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