Online discussions of Oncotype DX testing in early-stage breast cancer

By Emily Ross, Julia Swallow, Anne Kerr and Sarah Cunningham-Burley, Universities of Edinburgh and Leeds

 

Background

Genomic and wider molecular techniques are being developed in cancer medicine with the aim of ‘personalising’ patients’ cancer care. One element of this is the use of molecular information to aid clinicians and patients in treatment decision-making using gene expression profiling techniques such as Oncotype DX. Oncotype DX was introduced into routine NHS care in 2015 (initially in England) and is sometimes used to guide chemotherapy decision-making in early stage breast cancer. Following surgery, Oncotype DX may be offered to some patients with early-stage cancer, when this has not spread to the lymph nodes. The test is used to predict the benefit of adjuvant (following surgery) chemotherapy in protecting against breast cancer recurrence.

What we did

With assistance from two breast cancer charities in the UK, we undertook a small study of women’s experiences of Oncotype DX as reported via online forums hosted by the two charities. We explored the ways in which the technique shapes and features in patient decision making with regards treatment, and the role it plays in patients’ experiences of cancer more generally. This online research took place alongside qualitative interviews for our Wellcome Trust funded research exploring experiences of genomic techniques within contemporary oncology research and practice (University of Leeds and University of Edinburgh).

 What we found

Our research found that women predominantly wrote in positive ways about Oncotype DX. Many saw the test as providing “specific” and “personalised” information about their cancer and treatment recommendations. Some contrasted this with more commonly used methods of predicting chemotherapy benefit, which were described as more “general”. Many forum users welcomed the numerical estimate of chemotherapy benefit provided by Oncotype DX testing. When they received a ‘low risk’ score, which indicated a small benefit of chemotherapy, many represented the test as determining their decision not to proceed to chemotherapy. Equally, for high scores (high risk of recurrence), some reflected that they would then “have to” undergo chemotherapy, even though they did not want to.

However, for those receiving an ‘intermediate’ score, decisions about chemotherapy could be difficult. Some called this score the “grey zone”. In these cases, forum users appealed to other women for opinions about whether to have chemotherapy, and also reported asking their doctors for advice about what they would do e.g. by imagining what they would advise if it were a family member in this position. In lots of the forum posts we analysed, the decision to proceed or not to chemotherapy was discussed as very difficult. This was because though women wanted to do “all they could” to avoid their cancer recurring in the future, they also feared chemotherapy. Many had difficult memories of family members going through the treatment, and some also discussed not wanting to become sick, which could interrupt working and family life.

Though many were positive about the availability of Oncotype DX to help chemotherapy decision-making, some users also discussed uncertainty about whether their cancer would return, something which could not be resolved by clinical care or medical tests. Women said things like, “there are no crystal balls”, suggesting a degree of uncertainty was always present. Oncotype DX did not always lessen uncertainty and anxiety for some of the women writing on these forums.  For example, some shared stories of other women who had experienced chemotherapy but gone on to have a recurrence later in life.

We concluded that though Oncotype DX was viewed very positively by many users, it did not always resolve the decisions faced by women with early-stage cancer about whether to proceed to adjuvant chemotherapy. These decisions were very difficult and emotional.  They were influenced by family members’ experiences of cancer and chemotherapy, the suffering associated with cancer treatment but also by a sense of needing to ‘fight’ cancer. For a minority of users, notably those with an ‘intermediate’ score, Oncotype DX could present even more difficulties for decision-making.

Why is the study important?

The results of this study have implications for how clinicians discuss predictive tests and techniques with patients. These results are also important for patients and their families, so that they remain informed about the benefits of novel tests, but also their limitations.