Crucial information missing in Elle Macpherson breast cancer story, experts warn | Breast cancer

A leading breast cancer surgeon claims many media reports that the supermodel Elle Macpherson treated breast cancer with alternative therapies have left out crucial information, risking people being misinformed.

News organisations, including this publication, reported that after Macpherson was diagnosed with HER2 positive oestrogen receptive intraductal carcinoma in 2017, she decided not to follow standard medical advice from doctors.

She told the Australian Women’s Weekly magazine that she instead followed “an intuitive, heart-led, holistic approach” and rejected surgery, chemotherapy and radiation.

But Macpherson says she did undergo a lumpectomy, which is a type of surgery that involves removing a breast lump.

In itself, a lumpectomy may in some cases be an appropriate, standard medical treatment for the condition, said Prof Chris Pyke, the director of medical services at the Mater private hospitals in Brisbane.

Pyke, a cancer surgeon and breast cancer risk quantification expert, said HER2 positive oestrogen receptive intraductal carcinoma in many cases could more accurately be described as a type of non-invasive precancer that has the potential to become aggressive if left untreated.

“Intraductal means precancerous, so the cancer cells have formed but they are still housed inside the ducts in the breast,” Pyke said.

“Left to its own devices, a certain proportion of these cases will turn into invasive cancer during the next year. But the number is not high – about 5%. It’s quite possible that just removing that lump all by itself could have been sufficient treatment.”

Media reports, which are based on the Women’s Weekly’s exclusive interview with Macpherson about the launch of her new book, lack detail about the size of the precancer or the grade of the cells, or other risk factors Macpherson may or may not have had.

Guardian Australia has asked the publisher of her book, Penguin Random House, and the Women’s Weekly, if those details were asked for or provided, or if they have specific details about her treatments, both conventional and alternative.

“On top of just removing it, for this particular type of disease, sometimes radiotherapy is added and we can help guide patients on that depending on how big the area of precancerous change was, what the grade of the cells were, and sometimes there’s gene expression profiling that can be added on top of that to help make decisions and inform risk,” Pyke said.

It is unclear if Macpherson underwent gene expression profiling.

Pyke said about one-third of patients will have a mastectomy recommended at initial diagnosis, “not because it is severe” but because more than one-quarter of the breast is affected. Removing enough tissue with a lumpectomy alone in these cases could significantly distort the breast, so mastectomy and reconstruction may be offered.

It is also unclear whether Macpherson was diagnosed because she felt a lump, or because she underwent screening and the condition was detected through imaging, which may also make a difference to treatment recommendations and how important radiation, chemotherapy and mastectomy may be.

“The biggest thing for breast cancer, until we find the cause, is that early diagnosis is the most important thing,” Pyke said. “If you find breast cancer, even invasive cancer, early before you can feel it, there’s very little chance it’s going to shorten your life.”

He said for patients with the earliest forms of breast cancer, they “need to be offered every treatment option that has the same outcome”. That means if a patient has intraductal carcinoma, “they may have been offered lumpectomy by itself; lumpectomy and radiotherapy; or mastectomy as well,” Pyke said.

For early detected disease, “those three things have the same outcome, as far as preventing that type of precancer spreading anywhere”.

All options are offered because some patients may prefer a mastectomy over a lumpectomy due to fear of recurrence. While lumpectomy followed by radiation offers similar long-term survival rates to mastectomy, there is a slightly higher risk of recurrence with lumpectomy alone.

There are also drugs, including immune-modulation drugs, that may be tried, and Pyke said it is important for patients to be part of these treatment decisions. Someone who chooses more conservative treatment like lumpectomy alone might then be screened more regularly to monitor for any recurrence or spread, he said.

With growing concerns about overdiagnosis and overtreatment of some forms of non-aggressive breast cancers and precancers, some experts advocate for a more conservative treatment before undergoing surgery, with lots of monitoring and support from healthcare providers, Pyke said, and he emphasised it is OK for patients to ask questions about their treatment.

“The truth is, most people with a cancer diagnosis will do something on top of what we [medical doctors] recommend,” he said.

“Almost everyone does meditation, or takes a vitamin, and I say if it won’t interfere with the treatment, do it. And the second thing I say is that the only things which have been proven to treat cancer are surgery, radiation, chemotherapy and hormone treatments.”

Vicki Durston, the director of policy, advocacy and support services at Breast Cancer Network Australia, said providing the correct, full context to Macpherson’s treatment and her decisions “are so important to get the messaging right to alleviate fears and cut through the noise”.

She said media reports “are confusing for people that are currently in treatment” and some were now starting to question their own choices and approach.

“It’s important that when high-profile figures like Elle Macpherson share their story, they need to understand that their story has enormous impact and reach,” she said.

Dr Brooke Nickel, a National Health and Medical Research Council emerging leader research fellow with the University of Sydney who has researched media reporting of healthcare, including cancer, said Macpherson also owns a wellness company and patients should factor that in when considering her comments while also consulting doctors.

Speaking generally, Nickel added: “The public and patients alike really need to be wary of celebrities, and increasingly social media influencers, who discuss this kind of wellness or alternative therapy approach and who may be profiting from associations with brands and products.

“This wellness movement often aligns itself with the women’s health movement, which is about autonomy, empowerment and legitimate criticisms of patriarchal medical systems. This whole rise with celebrities and influencers adopting the women’s empowerment language has taken the wellness movement to the next level, and often, what they’re discussing is not based on evidence.”