Limited support for advanced breast cancer sufferers

Just weeks after completing a year of tough and invasive treatment for primary breast cancer, Rhona Nally received the distressing news which every person with the disease fears – the cancer had spread to her bones in multiple sites.

“It was like a bereavement,” she recalls today, happily a full nine years after that devastating diagnosis, “You lose your health, your work, your hopes, everything people take for granted.”

The narrative of most cancer treatment these days is an encouraging one – new drugs, improved results, longer survival, better services. But for Nally and an estimated 3,000 women in Ireland who have advanced breast cancer, the situation is altogether less sanguine. Their world is marked by isolation from the mainstream breast cancer community, which is more geared to women with a diagnosis of primary breast cancer and the greater chances of a successful treatment that this involves.

“The initial diagnosis of cancer comes as a great shock, but you’re put on a very well-defined path,” says Nally, a 58-year-old mother of three from Knocklyon in south Dublin. “You get support, a breast cancer nurse, access to multidisciplinary teams. You know what treatment you’ll have and when. It’s not something you want to happen but there is, hopefully, light at the end of the tunnel.”

With a secondary diagnosis, she says “there’s none of that. There is no defined path. You play it by ear. Treatments are tried, but they may or may not work. And, generally, it’s terminal.”

Treatment for primary cancer is invariably aggressive, as doctors try to root out the cause of the disease for good. With advanced cases, it’s more about palliative care and quality of life. Advanced breast cancer includes metastatic breast cancer (stage IV) which is the most serious form of the disease and occurs when the cancer has spread to other parts of the body such as the bones, liver or lungs.

'Breast cancer community'
It also includes locally advanced breast cancer (stage III) when the cancer has spread to the lymph nodes or other tissue in the area of the breast but not to the distant sites in the body. It is estimated that about 700 women present with advanced breast cancer every year.

Áine Melinn, a psychologist and Irish Cancer Society facilitator, describes how women, when first diagnosed with breast cancer, are "instantly part of a vibrant breast cancer community. But when their cancer spreads or if they are first diagnosed with advanced breast cancer, it is no longer about becoming a survivor, it's about surviving."

Nally recalls her upset on receiving a diagnosis of secondary cancer and the lack of supports that existed in 2004. She gave up her teaching job and tried to arm herself with knowledge.

“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.