Birth of a better health ... Researchers are looking into rare diseases in pregnancy.

Birth of a better health ... Researchers are looking into rare diseases in pregnancy.

Tanya Woodard had spent her professional life working in health and had never encountered gestational breast cancer - until she was diagnosed with the disease.

"I was considered quite unique," the 39-year-old nurse said of her diagnosis.

Two weeks after giving birth to her daughter, she underwent chemotherapy followed by radiotherapy and more surgery 

While breast cancer affects one in nine Australian women, breast cancer in pregnancy is rare, with fewer than 200 cases diagnosed each year, according to research from the University of Western Australia.

The Sun Herald. PICTURED: Tanya & daughter, Sadie Woodard. Thursday 17 May, 2012. (Photo: Stefan Gosatti)

Recovery ... Tanya Woodard, who had gestational breast cancer, and her daughter Sadie, 3. Photo: Stefan Gosatti

Mrs Woodard was 35 weeks' pregnant with her second child when she discovered a lump in her breast three years ago.

"It came as a shock," Mrs Woodard, from Perth, said. "I was young and there was no history of breast cancer in the family. I … just assumed I had a blocked milk duct. I didn't think much of it."

The lump turned out to be a tumour which was removed in the final weeks of her pregnancy. Two weeks after giving birth to her daughter, she underwent chemotherapy followed by radiotherapy and more surgery.

Mrs Woodard, who has made a complete recovery, is taking part in an international research project into rare obstetric conditions.

The Australasian Maternity Outcomes Surveillance Systems project (AMOSS) is linked with similar research projects around the world. The aim is to gather data about rare diseases and provide information and support for affected women.

Using data from 300 hospitals across Australia, the research team based at the University of NSW has already looked at eclampsia, placenta accreta, peripartum hysterectomy, extreme morbid obesity in pregnancy and influenza in pregnancy.

Researchers are studying amniotic fluid embolism and antenatal pulmonary embolism, with plans to examine rheumatic heart disease in pregnancy and gestational breast cancer from July.

The project's consumer representative, Debbie Slater, said the diseases generally affected fewer than one in 1000 women, and global information sharing was necessary.

"Because they are so rare, there's not a lot of data around them," she said. "The idea is to look at the conditions to provide more insight into them, primarily from a clinical focus.

"With some of those conditions, clinicians may only see one or two instances in a lifetime. The role of AMOSS is to collect data around these conditions and disseminate best practice and new findings within the international clinical community. We shouldn't need to reinvent stuff when we can share information."

Ultimately, the research team would like to create an online community for women affected by the diseases to given them practical advice and emotional support.

Ms Slater said a woman facing any of those conditions would be unlikely to meet anyone else who has experienced the same problem.

"We would like to enable women to get in touch with other women who have experienced it,'' she said. ''AMOSS has done a lot of the research around these conditions."

Rare diseases in pregnancy

  • Amniotic fluid embolism
  • Antenatal pulmonary embolism
  • Eclampsia
  • Extrememorbid obesity
  • Gestational breast cancer
  • Influenza in pregnancy
  • Placenta accreta
  • Peripartum hysterectomy
  • Rheumatic heart disease in pregnancy