There is a great deal of variation in the treatment pathways experienced by different women with breast cancer. Women we interviewed were sometimes surprised about differences in types and timing of care experienced by friends, family members or co-workers with breast cancer. Although sometimes the case, variation itself does not necessarily mean that women were getting worse or better care, as treatments are based on many different factors – the cancer disease itself, family history, women’s preferences and choices, and the availability of different services. In this topic page, we present women’s views about these variations, their choices and reflections on their pathway. Some women highlighted the need to explore the reasons for variation and be more aware of the choices available.
Variation in treatment pathways
Many women described personal conditions that affected their treatment pathway. For example, Christine has type 1 diabetes and this affected her response to chemotherapy. Christa was pregnant when she was diagnosed; she had to balance priorities between protecting the fetus and her treatments.
Key findings from tests were important factors in determining which treatments were indicated – for example, chemotherapy was recommended when cancer was found in the lymph nodes, a lumpectomy was typically recommended in lower risk cancer, and a bilateral mastectomy was rarely recommended in cases with high risk of developing breast cancer (for example women who carried the breast cancer gene BRCA1 or BRCA2).
Debbra and Donna both said that it would have been very useful to have had some kind of ‘roadmap’ so that they could understand where they were in the process and what might be next. Christine was given a protocol that indicated when it was time to make decisions; she found this very useful.
Points of decision-making
Women described several points in their treatment when specific decisions would influence their pathway, quality of life, or chances for survival. Their approach to decision-making depended on factors such as: preferences, expectations and personal considerations, how much choice and involvement they had in the decision-making, and their illness status. Joanne, for instance, in knowing her doctor, was able to prepare well in advance with her own research so that she was ready for the quick decision she had to make at her appointment. To read more about decisions about specific treatments, you can visit surgery, radio therapy, reconstruction surgery, chemotherapy, endocrine (hormone) therapy.
Some situations required an urgent decision. Young women for example, had to rapidly decide, before chemotherapy started, whether or not they wanted to have their eggs extracted and frozen for future implantation because of the effects of chemotherapy on fertility. Please visit talking to children about cancer to read more about this subject.
The need for rapid decision-making was also described around options for surgery for a lumpectomy, single or bilateral mastectomy, you can read more about this in surgery. Some women also had the option to decide whether they wanted immediate reconstruction during their surgery or not. You can read more about this in reconstruction surgery.
Several women described struggling with the waiting time before treatment could start. Amanda was asked to take her time for the decision making but at the same time she felt that it was risky to wait while the cancer was advancing. Some decided on private care for tests to reduce the waiting period.
The women we spoke with said that things seemed to stabilize once a plan was in place with their team, and that they felt able to start collecting more targeted information.
Decisions related to increased survivorship
Women told us about decisions related to survivorship (e.g. chemotherapy, surgery and radiation) being different than decisions that were important to them for personal reasons, such as egg conserving interventions or breast reconstruction. For example, when it was explained that undergoing chemotherapy and hormone therapy would reduce her risk of recurrence by 7%, Christa felt it was the right decision. Other women, such as Isla, talk about weighing the advantages and disadvantages of options such as breast conserving surgery and the alternatives (you can read more about this in reconstruction surgery). Different women offer different types of advice based on their experience.
Most decisions along the treatment pathway were final in the sense that the women could not go back to the previous situation afterwards (as in the examples of reconstruction and chemotherapy). Other decisions were more flexible and reversible, for example Julia tried hormone therapy twice but experienced too many side effects and decided to stop.
Patient involvement in decision-making
Women described very different levels of personal involvement in decision-making about their care at various points – some taken by them alone, others as shared decisions, and some made by the professional. There were variations in comfort levels with these arrangements. Isla said: “My oncologist said ‘you’re not going to be in control of some of these decisions because I’m going to make them for you’ and I’m like good because I don’t want to make the ones that you really need to make.” Going to appointments together with a family member or friend was helpful to remember what was said and make sure all the questions were asked. (You can read more about this in relating to health care professionals).
Jeanette told her doctor that she just wanted to know what was next and that was all. Jocelyn said: “You do have choices. They ask you and you give consent on what you want to do. I trusted the doctors because they know better than I do…. They’re not doing it to hurt me they’re doing it because it’s whatever is proven best at that time.” Other women also spoke about trusting their doctors and being involved in decision-making. Nalie for example describes how they answered all her questions about the risks related to a lumpectomy or mastectomy. Melissa and Donna on the other hand felt that the oncologist had already made all the decisions for them at their first appointment; both asked for more time to reflect.
Women provided examples of requesting changes in their treatment, such as in the medication dose, in the treatment protocol or in refusing certain tests. Debbra and Shelley requested additional testing for their peace of mind. Debbra was able to suggest another drug, which, with her pharmaceutical background, she knew would protect her stomach better.