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.
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 just found that they weren’t leaving an opening for me to decide for myself. I thought it was pretty crazy for them to not allow me to decide what I wanted for my body.
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.
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 so long for, I had the surgery in March and then the pathology didn’t come back until weeks later.
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 surgeon and I’m glad she did because I was given 5 minutes to decide what I wanted my treatment to be and it that was overwhelming.
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 cancer, you are looking forward to starting the treatment. The wait is infernal. And then I decided to have my tests in the private clinic, the CT scan*(Computerized Axial Tomography Scan) , both CT scans, abdominal and thoracic, because to wait till November 20, I couldn’t take it psychologically. So I refused.
* CT scan: Body scan that produces cross section images of the body’s internal structures.
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.
Interviewer: So when your cancer came back you didn’t have chemo and radiation as well?
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.
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.
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.
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 0.02 off of being considered HER2-positive and so again, I had to push because again you need to know about the sensitivity of how these tests are done and it wasn’t a hard stretch to say “What harm will it do to give a very healthy woman like Herceptin or a HER2 agent?” And so, then I pushed to have HER2 Herceptin, for my HER2 and did that for 18 sessions which took about a year and 3 months and then again with HER2 or Herceptin, I should say and a lot of the agents that are used when you’re HER2-positive they can cause cardiovascular issues.
And that was the other thing is that, there’s two different tests that you can have to test your heart functions. One’s a MUGA* (Multi Gated Acquisition Scan) and it’s used with radioisotopes and the other one is just an imaging like an ultrasound. They had done a MUGA which is the one with the…They inject dye into you and that one had said one number and then the other procedure a little later on had shown that my heart function had dropped. And so the heart function they say is or they utilize the term ejection fraction and if you drop more than 20% on your ejection fraction you need basically, to stop the drug. But again my oncologist wanted to take me completely off of it and not restart me and I had only had 5-6 treatments. In everything I had read if you can get the full treatment it’s better for you. Again I had to go back to the Internet. I actually had to pull the Herceptin guidelines, Canadian Herceptin Guidelines and show them to her which is if you have somebody whose heart function drops then you have to stop them for 6 weeks and then reinitiate them. That’s the protocol. If I wouldn’t have pushed for that I wouldn’t have had the full dose of Herceptin. Would it have made a difference now that I’m metastatic, I don’t know but the fact is that we know that it could have made a lot, I mean I think, I personally believe it would have been a lot worse if I didn’t get the full dose. But again having the knowledge and not being afraid to stand up for what you want and that’s basically what I did is I went toe-to-toe to the Head Oncologist when I went in for Herceptin and he was going to deny it for me and so I, again, it was a fight but was it a valid fight, yes.
So again I think huge learnings for healthcare people. It’s all about cost but I think it’s something that needs to be pushed. I think as a patient you need to be aware of some of these options that you can track and not to be so trusting in everything that they say. I don’t mean to be sceptical or cynical it’s just that they’re people who put their pants on one leg at a time and they can make mistakes too and you’re the only person who’s going to look after you. I find here in the province we don’t have many options. We can’t really go to another cancer agency, we have one, so sometimes you need to fight the system more than you need to do anything else.
* HER2: A gene present in cells that, in some breast cancer cases has a mutation. This mutation causes the HER2 gene to be overproduced in breast cells, causing the cells to divide uncontrollably.
* MUGA scan: Scan that creates video imagery of the hearts ventricles to check for abnormalities and to ensure that they are pumping blood properly.
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.”
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.
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 heart. Well a MUGA scan is an injected dye, it’s a nuclear medicine test, so for someone who gets a blood test all the time and who gets intravenous chemotherapy signing up for a MUGA scan after you’ve had a bone scan too is not something that you want to do. I decided I wanted to have echocardiogram, which is a non-invasive ultrasound of the heart. So I got scolded by a cardiologist because the error bar around the ejection fraction that’s determined from an echocardiogram is probably bigger, is bigger than the change that they’re trying to detect. But I accept that as okay, I know it’s not precise enough but I don’t want another test and I don’t want another needle and I need for you to respect that, right. I understand that I’ve given up precision but what I’ve gained is I don’t have to have nuclear dye in my veins every 3 months, right.
So they have to kind of understand where people are coming from on that even though I know the precision isn’t there, right. So it’s not a good serial follow-up, I know. I made that decision thank you.
No he was upset with me and he continued to say “You shouldn’t be doing this” I’m like “I know you’re not going to see a 2% change you can only see a 5% change I’m willing to accept that, right.” Because the biggest changes are coming usually in elderly women, usually in people with pre-existing conditions. I don’t have any of those so the so-called risk to me of the test is bigger than the lack of precision by the choice that I made in my view. And he, that’s my viewpoint on it and it’s not an unformed viewpoint, it is a lay viewpoint but it’s not an uninformed viewpoint and it is a valid viewpoint.
* MUGA scan: Scan that creates video imagery of the hearts ventricles to check for abnormalities and to ensure that they are pumping blood properly.
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
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 was going to get mesh in my body. I think that was … the reason I opted for the TRAM flap*(Transverse Rectus Abdominis Muscle Flap) surgery was because I didn’t want foreign material in my body. I thought this would be my breasts built from my own body rather than anything foreign put in there. So that was a huge thing on my part, that I should have really researched this more. So I would say that do your research, look at different sites, talk to different people. I had talked to one woman who had the TRAM flap done and she was very happy with what had happened.
Now another thing also, I forgot to mention, I said I had decided to do this because I didn’t want any foreign products in my body but when I went back for the second surgery my breasts were not, the right breast was wonderful it looks real, it feels real it’s perfect. The left breast was just a little lump and I said to the, this is done in Toronto, and I said to the doctor there, that well," But they’re so different. I mean they’re not this isn’t breasts, this isn’t a breast.” She said “We can make the other one smaller or we can make the left one to match the right one. I said well I want breasts, I don’t want little lumps. I didn’t go through all this to have little lumps.” And she says “Well the only way we can give you a left breast is to put in an implant.” So here I resisted or I should say here I was trying to think, trying to or thinking that my breast would be built from my own body and now I have an implant anyway because they, they, she said there was no other way to give me a left breast. And I think they should have been told to me right away. I don’t think that it should have been an afterthought and when she put the implant in first of all, it was too big and she put it too high. So then I had to go back so that she could lower the implant. I kind a got fooled on that one because I said “Now I have, I have mesh in my body plus I have an implant in my body and that’s not what I was expecting.”
* TRAM flap: A section of the lower belly containing blood vessels, skin, fat and muscle is cut and used for breast reconstruction.
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 of patients. You need to be responsible for your care.