Limited support for advanced breast cancer sufferers

The effect of a second diagnosis can be like a bereavement

Fri, Oct 4, 2013, 22:32

“I went to anything available, but it seemed all advice was geared to people with a primary diagnosis. The focus was on getting through treatment and getting on with your life. I left very alone and upset after these meetings, and I was reluctant to ask questions because I didn’t want to frighten people with primary cancer.”

Newly published international research appears to bear out her experience. Two-thirds of women with advanced breast cancer who were surveyed in 12 countries felt that no one knows what they are going through, three in four said they actively seek information, yet more than half said the information they find does not address their needs as it is usually applicable to early stage breast cancer. Some 41 per cent reported that support from family and friends wanes over time.

Overwhelmed by fear

Ireland did not participate in the global survey but an assessment by the Irish Cancer Society of its Living Life programme for people with advanced cancer came to similar conclusions. It found that women with advanced breast cancer are often overwhelmed by feelings of fear, anxiety, sadness and anger. They can feel isolated and alone trying to cope with psychological and social problems and need special support in dealing with family and especially children.

There is also an urgency to increase knowledge of drugs and often women are “a drug ahead” of their oncologist in the quest to buy more time.

The development of new treatments has given hope by ensuring that people with advanced cancer live longer but huge ethical issues sometimes arise. Nally, for example, participated in an early trial using the wonder drug Herceptin, but had the misfortune to be in the control group who were given existing treatment. She believes that her cancer would not have recurred if she had received the drug at the time.

Today, she’s on a targeted therapy of Herceptin and another drug and realises that, nine years after her diagnosis, “I’ve done very well”. That there are now supports for advanced cases is in part thanks to Nally, who has trained as a peer supporter, advising women in the same position as herself. “As time goes by, you deal with it better. The supports are there now, but you have to seek them out.”

The National Cancer Helpline, Freefone 1800-200700, can arrange for a person to talk to another person with advanced cancer.
The Irish Cancer Society regularly runs Living Life programmes for people with advanced cancer. The society can also arrange an appointment with a counsellor in one of its support centres.