Perspectives on treatment pathways
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.
Because of her weakened immune system Tina decided against chemotherapy. Her intuition helped guide her decision-making.
The process was fine because I knew what I had to do for me. I find that some of them are very, very pushy that you need to do this, this, and this and this and it leaves you with nowhere to go for yourself. Like I find that, I […]
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.
When Amanda heard she needed to undergo chemotherapy, she had to decide within a day with regards to egg conserving therapy.
That was like a whole, after finally, so what was it January, February, March 21st I had the surgery and then four weeks later I was in Ottawa for an egg retrieval. And that was, so much had to come together during that four week period. Because we were waiting for […]
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.
Susanne was treated rapidly and had a period of 5 minutes to decide whether she wanted to do a lumpectomy and chemotherapy.
So then I went there but in the, that afternoon I had an appointment with the Women’s Outreach worker from the community and for issues not relating to my health but right at that point she said “Well I’m going with you.” So she came with me to see the […]
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.
Unable to wait, Malika decided to pay for tests in the private sector.
In September, yeah I had… I was diagnosed at the beginning of September. On the 6th I had my result, the 5th, I had the test, the ultrasound and the biopsy. So it was the wait to do all the tests, to have the appointments in time. When you have […]
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.
Kathryn realized how attached she was to her breasts and how this might be different for doctors who are mostly concerned about saving your life.
Interviewer: So when your cancer came back you didn’t have chemo and radiation as well? No they just took the whole breast off. I said forget it this, I should have done it in 2003. All those four surgeries, I should have listened and I should have taken the whole thing […]
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.
Melissa thinks it is important to give patients choices where preferences might matter.
I think giving patients a choice goes a long way. So even if it’s not, not necessarily a yes or no choice but in certain circumstances that’s not always the case. Sometimes with children, they just need to know that they can make a decision and you don’t ask them […]
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.
Debbra describes moments where she had to fight for care based on her own decisions.
Okay HER2 *(Human Epidermal Growth Factor Receptor-2) is an elevated protein that usually means that the cancer is a little bit more aggressive and there’s a drug called Herceptin and now there’s a whole bunch of other drugs that are available for HER2-positive patients. So I pushed because I was […]
A test to measure the tumour markers caused so much stress that May-Lie asked for it to stop.
Ok, at one point when I saw the oncologist at the hospital, he was talking about the margins. The tumeral margins are high. I had called Info Cancer – we have an anonymous line Info Cancer. “Don’t worry you just finished your chemotherapy. Don’t worry, it’s ok, it’s normal. It goes with it, they will lower.” Well! But as always, it plays a little. I didn’t get back to normal like most people. I was between 4, 4.2, 4.5. At one point I had a resident who went to get the oncologist that I saw. Yeah, but I said: “The margins were never normal!” He told me: “You can have another blood work tomorrow and it can be different.” So, since I had talked about the margins, from this point on they weren’t assessed anymore. It caused me a lot of stress. But now they analyse the liver, the kidneys, the hemoglobin, the platelets, all that, but the margins are not assessed. The tumeral margins in breast cancer – I called Info Cancer and talked with a nurse who told me: “Usually, it is to show that something is not totally normal. It is only an indication. It is not a guarantee that it is going well, and it is not a guarantee that it is not going well either.”
‘I am their patient but it’s my treatment’ – this approach helped Melissa to communicate her treatment preferences to the professionals.
So like I said, my mom, because of the success that my mom had had, she was almost 10 years cancer free before she was diagnosed with a recurrence. I felt like, that maybe, it was a bit excessive to do that. And so, in my discussions with my physician […]
Isla was not ready for the health risks of a certain test and requested a different kind of testing even though her health professional disagreed.
What else, I would say that sometimes the protocol that’s in place, I’ll give you an example. So women who take Herceptin they’re supposed to get MUGA scans* (Multi Gated Acquisition Scan) every 3 months while they’re on it to monitor the ejection fraction from the left ventricle of the […]
Lorna’s surgeon had left extra skin on her chest with the assumption she wanted a reconstruction.
Interviewer: When you had the mastectomy did you have your reconstruction straightaway or was it after?
No I didn’t want it. I didn’t want it and it’s funny because the doctor left a lot of tissue thinking that I would so it’s not the prettiest sight, but it doesn’t bother (my husband) any and that’s all that matters, right? Yeah, So this side (of the chest) there’s nothing, this side there’s some tissue.
And he said “Oh, I thought for sure you’d want to have reconstructive surgery.” I said “no way I don’t want to go, I don’t want to be put to sleep again ever, ever, ever.” So he just said “well I could clean it all up and make it all the same.” I said “no, I’m fine I’ll just deal with it, yeah.”
Interviewer: Did you try a prosthesis?
I have yeah.
Interviewer: Did you feel comfortable?
Yep, Oh yeah
Sirkka didn’t want foreign materials in her body but didn’t realize that her choice of reconstruction included a piece of mesh left in place.
It would have been good if I had, if I’d had the knowledge. A little bit more knowledge about mesh, how mesh works in your body. I guess really, I should have researched it more, but actually at the time that I went down there, I wasn’t aware that I […]
Patients do have the right to refuse treatment and Patricia thinks that it is important for the health professional to provide the patient with all the information they need to decide.
I’m, it’s not all of them for sure and not all oncologists for sure and not all nurses, but it’s a, it requires a huge culture change and it doesn’t just require a culture change on the part of the healthcare provider, it requires a culture change on the part […]
Review date: 2018-04