With no family history it just wasn't on the radar.

But it was her diagnosis of lymphedema -  a common side effect from cancer treatments involving the lymph nodes - that she was really not prepared for.

The Dunlop woman wants better understanding, support and treatment options for what she believes is a forgotten chronic condition.

A report released today from the Breast Cancer Network Australia has revealed gaps in the the Territory's treatment for women with breast cancer.

The report showed thousands of Australians are missing out on quality care and facing huge out of pocket costs despite Australia having one of the best breast cancer survival rates in the world.

The report was conducted over 18 months and is drawn from the experiences of thousands of people living with breast cancer.

The network's CEO Kirsten Pilatti said the disparity of care in Australia could not be ignored.

"The people in this report are not just statistics. I travelled around the country and listened to thousands of women and men talk about the challenges they face accessing quality and affordable care," she said.

"What we found in the ACT was that were was some shortages with breast care nurses and the amount of time they can spend with patients," she said.

She said the ACT also had issues around follow up care and access to services for women who are diagnosed with lymphedema - a side effect of cancer treatment when lymph nodes have been removed or damaged that causes swelling of the limbs.

Ms Pilatti said the out of pocket costs for women with private health insurance were sky-rocketing, with about 25 per cent of women facing costs of more than $20,000 over the course of their treatment.

Ms Balfour underwent chemotherapy, surgery and radiation therapy which successfully treated her cancer.

A cancer nurse she was eventually able to see advised her get an appointment with a lymphedema specialist.

Within weeks of her surgery she started having symptoms of lymphedema and has had to wear expensive compression garments to help manage her mobility and swelling ever since.

She is a nurse and midwife but she's been forced to take non-clinical roles because of the hygiene issues the garments create.

Ms Balfour is a private patient and believes her out of pocket expenses could be as high as $15,000.

She struggled to see a breast care nurse in Canberra, with limited sessions available.

She said while the lymphedema clinic at Calvary was fantastic, it was stretched and has waiting times.

Specialist massage therapy - which is the most effective treatment for her - is only available in the ACT through private providers.

The report released today has called for better access to care for women with lymphedema, including by funding costly compression garments and establishing more specialist lymphedema clinics.

It has also called on the funding of more breast care nurses and reducing out-of-pocket costs for tests and scans for cancer treatment.