When Jenny* underwent a mastectomy after being diagnosed with breast cancer, she believed that major surgery to remove her breast, although painful, had saved her life.
Describing feeling “outraged” when she had a follow-up appointment three years later, she told her surgeon, “I would probably be dead now” if she didn’t have the surgery, to which he replied, “Maybe not.”
Only then, having already undergone the life-changing surgical treatment, did Jenny learn about “overdiagnosis”.
While breast cancer screening programs are essential and save lives, sometimes they also discover lumps that may never cause harm to a woman’s life, leading to overtreatment and psychological and financial suffering.
Jenny is one of 12 women from the UK, US, Canada and Australia whose stories were published in the medical journal BMJ Open on Thursday. It is the first study to interview breast cancer patients who believe they may have received an unnecessary and harmful treatment, highlighting the impact on their lives.
“The usual storyline for breast cancer screening is ‘screening saves lives’,” said Alexandra Barratt, study author and professor of public health at the University of Sydney in Australia.
“This study tells the other side of the story – how breast cancer screening can cause harm through overdiagnosis and overtreatment.”
In Jenny’s case, she only learned from her surgeon after her mastectomy that her cancer may never have progressed to cause damage or symptoms, and that ongoing monitoring or less invasive treatments may be an option.
Overdiagnosis occurs when cancers are diagnosed correctly, but at such an early stage these cancers are unlikely to grow or spread in a person’s life, and cause no symptoms. Because of improved medical technology, they are caught more often.
This early diagnosis can sometimes be helpful for ongoing monitoring. But sometimes as a result of identification of cancer, psychological distress occurs, yet treatment is recommended by a specialist or preferred by the patient, including therapies that have risks and can be invasive. This is known as overtreatment.
Prostate cancer is another example where overdiagnosis and overtreatment is a consistent problem. However, there are some cancers, such as ovarian cancer, whose prognosis can be terrible by the time it’s diagnosed, and for which early detection is critical. Early detection and treatment of ovarian cancer is rare because cancer can travel rapidly from the fallopian tubes or the surface of the ovary and spread, making it more difficult and extremely fatal to treat.
Estimates of an overdiagnosis of breast cancer vary from 10% to 30%, depending on the study methods. A Cochrane review of mammography screening found that “for every 2,000 women invited for screening over 10 years, their lives are prolonged.”
“In addition, 10 healthy women who would not have been diagnosed without screening will be diagnosed with breast cancer and treated unnecessarily.”
Professor Chris Pike, Vice-Chancellor of the Royal Australian College of Surgeons and former Chief of Breast Surgeons of Australia and New Zealand, said the research paper should be “congratulated” by Barratt and her colleagues.
“We should all get used to the idea that every time you have a screening program for any disease at all, there will be a certain number of people diagnosed with diseases that would not have affected the person,” Pike said. “I think it is a good idea to bring the issue there for discussion.”
He said surgeons receive ongoing training about the screening, risks and benefits, and how to communicate them well. “Whether that means every breast cancer surgeon in Australia has an overdiagnosed at the forefront of their mind during the advice they are giving is another matter.”
An independent UK review on this issue concluded that out of every 10,000 women invited for screening from the age of 50, about 681 cancers would be found, of which 129 would represent an overdiagnosis, and 43 deaths from breast cancer would be prevented. They estimated that in the UK, about 3,000 women are diagnosed with breast cancer each year, and about 1,000 deaths are prevented.
“As a result of the review, over the past 10 years, women in the UK have been receiving information about the benefits of screening as well as the harms of overdiagnosis,” Barratt said. “We believe the policy should also be implemented in Australia and other countries that have screening programmes.”
The challenge is that many women will not know for sure if they are being overdiagnosed, said Christine Bellati, chief executive of the Australian Breast Cancer Network, and “we need to be very careful about the message we are sending to the public when talking about overdiagnosis.” “. And the earlier the cancer is caught, the better the chances of survival, she said, with screening programs in place as part of the reason breast cancer survival rates are so significantly improved.
“We’ve also seen a decline in breast cancer screening during the pandemic, and as a result, we’re concerned about how this, combined with ongoing stresses on health systems, can translate into later detection and treatment, and worse outcomes for women,” Bellati said. .
“But we need to move to a risk classification model where we use the latest research to identify those women who are at higher risk of developing breast cancer and have them screened specifically.”
Major cancer organizations around the world now recognize the dangers of overdiagnosis and advocate that patients be given greater information about the risks and harms of screening and treatment for a variety of cancers.
Dr. Anna Samecki, GP and medical advisor at NPS MedicineWise, said that while the BMJ Open study interviewed a small number of women, it was nonetheless an “informational qualitative study” that highlighted a “small but real” risk of overdiagnosis.
“The study highlights the importance of informed consent and the need to inform patients of the risks of the proposed procedures,” she said.
“The study found that women who became aware of overdiagnosis after breast cancer screening experienced negative psychosocial consequences including feelings of anger, regret, and loneliness.”
Sally*, an Australian woman who took part in the study, told the Guardian that when she was diagnosed with ductal carcinoma in situ, which is considered stage 1 and non-invasive breast cancer at this stage, her surgeon told her she would need a mastectomy. . Sally has no symptoms.
Sally, who has been treated successfully for a pituitary tumor in the past, raised the possibility of overdiagnosis with her first surgeon. She said she was left feeling “absolutely nurtured” with “no independence… not entitled to make any decisions about anything whatsoever.”
The surgeon she went to for a second opinion also offered only a mastectomy, but she called a third surgeon who advised a mastectomy but was willing to perform a lumpectomy, a less invasive procedure where the cancer and surrounding tissue are removed. Eight years after her lumpectomy, Sally is still healthy and cancer-free. She firmly believes that a mastectomy would have led to overtreatment and is relieved that she did not have the procedure.
She said it was “extremely difficult” to have a conversation about treatment with doctors, with one of them asking her what “bullshit” she was reading because she had decided not to have a mastectomy.
She said she understands why surgeons recommend a mastectomy. “Cancer surgeons often see very sick people and want to do everything they can to prevent that,” she said.
“There is sometimes more ambiguity to deal with when recommending other treatment options. There is a chance it could come back or get worse. But I would like more clinicians to be at least willing to have a conversation with their patients.”
*Names have been changed to protect identity