BC Becky

Never thought I'd want to be a breast cancer survivor

Category: Opinion

  • Are individual breast cancer narratives just pink ribbons?

    Are individual breast cancer narratives just pink ribbons?

    Personal breast cancer stories are one means of producing and maintaining ignorance about breast cancer.

    (Segal, 2008, p.4)

    I read an interesting article by Judy Z. Segal (2008) that argues that “ignorance about cancer is maintained, in part by the rehearsal of stories that have standard plots and features, and that suppress or displace other stories.” (p.3)

    I find this an interesting argument. In the article she argues that the standard plotlines of stories silence the counter narratives. Anyone that has experience breast cancer, might tell you of the challenge of people telling you that you need to stay positive, eat a healthy diet, get exercise, or pray. As if not doing these things is what led to the cancer, or that not doing these things will cause the cancer to come back. That is the predominant narrative and one that some cancer patients need to fight in order to stay sane.

    Much of what we are told about breast cancer is meant not simply to inform us, but also to evaluate and to govern us

    Segal, 2008, p. 6)

    I found that this quote spoke to me. It can be seen in some discussion forums – where only certain narratives are welcome. In some places, if you do not find god in your experience of breast cancer, then you are doing it wrong. In others it is about diet and exercise, or staying positive. These are all messages that often get propagated in certain online spaces but also through books about individual cancer experience. When you read pathographies (books about illness experience), they are all about the lessons of cancer. The plotlines are all about personal growth in one way or another. Does that not tell cancer patients and the wider world that cancer is a personal growth experience? That there is a right way to do cancer?

    Personal narrative is itself a pink genre; it is so welcome in part because it is unthreatening – unlike, for example, the genre of the protest rally or the diatribe. Furthermore, it is an egocentric genre: it honours the individual and neglects the collective. (p. 17)

    (Segal 2008, p.17)

    I cannot help but wonder if the blog is a genre that breaks this argument. In book length memoires, you need a beginning, middle, and end. The story needs to have a plot that comes to some kind of completion, otherwise the reader is left hanging – and yet, I wonder if that feeling of being left hanging is actually more authentic. But do blogs help? Do they allow more for the protest rally or diatribe that Segal is arguing that personal narratives don’t provide? Does the genre of personal narrative through blog change the analysis of personal narrative as pink?

    Illness narratives not only document and catalogue experience, they also reflect and reinscribe a hierarchy of values for such experience: humour is good; despair is bad; surviving is noble; dying, by implication, is not. (p. 13)

    Did my blog propagate this narrative? Was my story yet another story that served to reinscribe the values that there is a right way to do cancer?

    As readers of my blog, what do you think? Did my blog tell the standard plot/narrative, just in more detail than other tell it? Does the detail help break the standard narratives? Did you leave reading my blog thinking that there was a “right” way to do cancer?

    Reference: Segal, J. Z. (2008). Breast Cancer Narratives as Public Rhetoric: Genre Itself and the Maintenance of Ignorance. Linguistics and the Human Sciences, 3(1). doi:10.1558/lhs.v3i1.3

    Feature image by Gwen Weustink on Unsplash

  • The time has come to professionalize Peer-to-peer heathcare

    The time has come to professionalize Peer-to-peer heathcare

    Recently on Twitter, there has been chatter about the “don’t Google it” advice given to patients and the role of patient narratives in healthcare related to chronic and critical illness.

    Carolyn Thomas at Heart Sisters, recently wrote a great response to this called The questions you don’t ask your doctors.

    One of the challenges of having physicians “Direct those patients to solid information you trust, which will help to inform future doctor-patient conversations” (Carolyn Thomas), is that we are again asking the physicians who are not living with the disease to decide which sources are trustworthy. They are still not in a position to know what lived experience resources are trustworthy – that is something I believe only a patient could know.

    I think we are ready for a professionalization of peer-to-peer healthcare. We are ready to find experts who live with the disease and include them as part of the healthcare system. Certify them. Pay them. Professionalize the role of providing support with lived-experience where the primary qualification is to have that lived experience.

    In Carolyn’s post, she mentioned Nancy Stordahl’s blog Nancy’s Point as a great resource for breast cancer patients. I couldn’t agree more. When I was ready to start reading blogs – which wasn’t right away – initially I wrote but didn’t read, instead my husband did the reading and finding of great blogs – Nancy’s blog was one that I read regularly. It helped me know that I was not alone in my experiences – but also helped me learn a lot about what I might come to expect. Another great blog is Marie Ennis O’Connor’s Journeying Beyond Breast Cancer.

    In addition to blogs, I also found a lot of support in Facebook Groups. I still find support in Facebook groups. When I thought I wasn’t going to reconstruct I joined a group called Flat and Fabulous. That was an amazing community of women supporting one another. I ended up choosing reconstruction, at which time I changed to a different Facebook group – one that supported others going through the same type of reconstruction. For me, the Facebook groups were a place to reach out and get an immediate question to whether a symptom was “normal”, something I could wait and tell my doc at the next appointment, or something that I should call immediately about. Since the group has an international presence, I could get answers to my questions at any time of day. That goes a long way to reducing anxiety and ensuring that I am getting the best healthcare I can.

    I go back to my point above. I think it is time that we start looking at professional ePatients – those with lived experience who choose to be guides and advocates for others living with critical or chronic illness. We are a huge untapped resource that should be part of the healthcare system.

    The professionalization of this role would also help to address the income gap for those with critical and chronic illness. Not everyone wants to be a professional ePatient – but there are people who do. People who live with there diagnosis, share their experiences, and learn a heck of a lot about the disease. They are experts. It is time we started including them into the system as the experts that they are.

    Do you think we should look at creating a professional ePatient role that is embedded within the healthcare system? What would skills and competencies would that person need to have?

    Feature image by Christina Morillo via Pexels.

  • Privilege and equity in healthcare

    I shared the other day the idea the for the privileged equity feels like oppression.

    It occurred to me that this is in part why I am scared at the idea of moving back to Canada and relying on the Canadian healthcare system. The Canadian system is a good one. It is mostly equitable. It suffers from the same issues as most, in that people in rural areas don’t get as good care as those who live closer to major medical centres. That issue exists in the US too.

    But, at the moment, I’m extremely privileged when it comes to healthcare. I have good insurance. For the most part, I have access to excellent doctors, and I can afford my medicines. I have learned to use my privilege to get good healthcare.

    I feel like moving back to Canada, I won’t get as good of care. I likely won’t have access to a PCP that I don’t have to wait for, but also one that I can ask unlimited questions in a single visit. I likely won’t get to choose my specialists. Actually, as an empowered patient, I know that the key to getting good healthcare in Canada is finding the right PCP (Family Doctor). I would need to find one that would be willing to work with me on my healthcare, rather than one that expects me to simply “comply”. A PCP that would allow me to choose which specialists I’m referred to. I cannot help but think that I would be a nightmare patient for any Canadian Family Doctor, and that is part of what scares me.

    I realize now that a large part of my fear of going back to Canada is that it means a loss in the privilege that I currently have. It means that I will become equal to anyone else in the system, and that is a loss to me.

    This is causing me to really question my values. I struggle because it is easy to say that I value equity, but when it comes to my healthcare, I am thankful that I am currently in a place of privilege – and it is something that I don’t want to let go of. I am afraid of losing the privilege. I am afraid that it will lead to suffering – and yet – I think that everyone is entitled to good healthcare and that means that I need to let go of the privilege that I have in order to allow for equality. I’m not willing to let go of it just yet …

  • Self-awareness as health literacy

    I was walking with my friend Lori today and among the many things we chatted about, one of them was health literacy – the topic for my PhD dissertation. I had talked a bit about how health literacy isn’t just a skill but rather it is a practice. I read an article by Uta Papen that talked about health literacy as social practice.

    The article mentions a different frame of reference for defining health literacy – specifically:

    The study was grounded in a view of health literacy as social practice. Accordingly, we talked about health literacy ‘practices’ rather than health literacy ‘skills’. Setting aside the notion of skills, we were able to explore what people do with reading and writing rather than to ‘assess’ how good (or bad) they are at what they are doing. This is not to say, however, that we were not interested in people’s abilities. But we did not define these as narrow skills. Rather we conceptualised them as context-bound and changing competencies, some of which, as I will show below, were not located in individuals but in groups and social networks. (Papen, 2009, p.21-22).

    One thing that came up in our conversation was the importance of self-awareness and body-awareness as a health literacy. Both Lori and I are very aware of our bodies – sometimes this can be rather uncanny. Lori has felt her cancer growing (she has metastatic breast cancer), and has noticed tumors growing before they show up on scans. She is highly aware of when things are not right. This often reminds me of the multiple intelligences theory – and how one of the intelligences surrounds body awareness, but I don’t completely buy it, as I do think that to at least some extent this awareness can be learned.

    Our discussion turned towards health literacy, and I found myself asking, is this sense of body awareness or self-awareness a health literacy? Is this something that patients (or people in general) should consider developing – a broader awareness of what is happening within their bodies, but also learning how to express those changes in language that others understand?

    And now that gets me thinking about communications issues between patients and doctors (or other healthcare providers). I can recall several times when I have described what I am feeling in a way that has been misinterpretted by healthcare practitioners. Or when I hear them use a term and I think I know what it means, and so I use it to describe what is happening to me, and that description then leads us down a wrong path … so that maybe my awareness was actually a problem.

    Hmmm… I’m not sure anymore.

    Should people be more aware of what is happening in their bodies? Or is perhaps, willful ignorance also a strategy?

    In that very same article, I also wrote myself a note that ‘Passivity could be an intentional expression of self advocacy‘. I’m pretty sure I’ve talked about this idea before. If you are intentionally abdicating decision making, then that can be seen as self-advocacy, as it is in an intentional choice. Abdicating decision making is only a problem when it is not intentional.

    What is amusing is that this blog post has meandered from one thought to another, loosely connected and yet somewhat disconnected. This is exactly how my conversations with Lori go … we walk and we talk … we have some good ideas, and not so good ideas … either way, it is a great way to spend an afternoon.

     

  • Experience, expression, and meaning making

    I’m finding myself in a bit of a challenging position right now. I don’t know if it is a funk – or just kind of stuck. Typically, when this happens I go for a nice long hike and sort it out while I walk and commune with nature. However, after recent toe surgery (which is healing nicely), I cannot yet walk – and so, I’m going to try to express some of my thoughts in writing.

    One of my research questions is “What was my lived experience as a breast cancer blogger?” I realize that even with my narrative chapter – written in the form of blog posts from my time in treatment for breast cancer, I’m not really answering the question. In part, I don’t talk to the blogging aspect of the question at all, but also, how can one express lived experience? I think I have asked an unanswerable question – which is written a little in academic-ese – as the term “lived experience” is something meaningful to academics and signifies that what I’m answering is an ethnography.

    In the book Networked Cancer: Affect, Narrative, and Measurement (Stage, 2017), the author asks “Should [illness] narratives be understood as expressing life with an illness”? The question here is that of expression rather than experience. Narratives are necessarily only part of the story. Some narrative embellish, while others gloss over. There is always a reason or purpose behind the narrative. The narrative can never be the experience. In that way, I’m not asked “What was my lived experience”, so much is “how might my breast cancer treatment experience be expressed as a blog-formatted narrative?” That, indeed, is the question that chapter 4 of my dissertation answers. Maybe, part of my challenge is that I’m struggling with a nebulous question, which then makes it more difficult to defend the answer.

    The next part of my dissertation looks at what knowledges I shared on my blog, looking at the question “What knowledges did I share through blogging about my breast cancer experience?” My blog itself (http://bcbecky.com) is the data source (not to be confused with the blog-formatted narrative). More specifically, I’m using the blog posts from June 14, 2014 through February 3, 2015 – all 237 of them! as data. I’m looking at what types of things I shared on the blog – what things that could be considered forms of knowledge. Now, one could devolve very quickly into a philosophical question of – what is knowledge – which frankly, would cause me to have my eyes gloss over and make me question why I’m doing this whole PhD thing anyways – but to get it back on track, I asked myself the question – “what types of things did I share on my blog?”, leaving the definition of “thing” rather loose – looking more for patterns than anything else.

    This is how I came to the major categories in my theme research – which I then looked at each theme in more depth and drilled down again – looking at subthemes.

    The problem I’m challenged with now, is looking at the data and analyzing it as if I were not the person who lived the expressed experience in the first place. I listen to other’s comments on some of my posts and am fascinated by how much they see in my posts – but then I realize what they are seeing is not what I was expressing – nor does it have any meaning for me. It is an attempt at making meaning from the text that is written, when what I’m trying to do is make meaning out of the experience I lived – and I’m not sure those two things align – maybe they do – maybe, I’ll think though it and push through the resistance I’m feeling, and it will all click together – it has happened before!

    The sentence that really sticks out is this “it is an attempt at making meaning from the text, rather than making meaning from the experience“. Perhaps, I’m coming back to an impossible question – just like it is impossible to answer “what is my lived-experience”, it may also be impossible for me to make meaning from the text – frankly, I always hated that part of English class, where we attempted to analyze novels and such – attempting to derive some deep meaning from a written text, when each person interprets the text differently (and I didn’t ever really clue in that the goal in school was to figure out what the teacher interpreted from the text, because it was never really my interpretation that was being solicited – but that is an aside).

    The question I have now to answer is, where it is that I’m trying to find meaning in this process? My supervisors tell me that I have to not just present the data/results, I also need to explain what those results mean to me – I need to describe the meaning. It is OK for others to see meaning in my text that is different than the meaning I see. When I doubt myself, it is often because I am doubting that I can ever see the same meaning as someone else is seeing – but I am realizing as I type, that I do not need to see the same meaning. That doubt (and impostor syndrome) comes from misunderstanding – it comes from a voice in the back of my head that is telling me that I’m missing the meaning that others see, and that somehow, the meaning that I see is less worthy / less valuable than the meaning that others see – when really, the goal is not to find “the meaning the teacher wants me to find” like back in high school, but rather to find my own meaning in the data. I need to ask what does this data mean to me, and then explain what that meaning is and why I find it meaning that – I don’t need to be deheartened because I don’t see the meaning that others see.

    Now, I just need to figure out – what is my meaning – when I find themes and subthemes, I need to ask the question – what does this theme mean to me? Not what does this theme mean in general. However, I need to write it as if I’m answering the question “what does this mean (in general)” – because I’m writing the results of something that is supposed to be some form of “this is what I found, this is what it means” … and the formalized research report format leaves out the “to me” in the way it is written (and hence leads people to believe the data is less biased then it really is) … but that is another issue … so my next step is asking, what does this mean … and being OK if it means less or different things to me then it does to others who are reading my dissertation … because, the goal is my meaning making …

     

  • Just talking

    I had a great conversation the other day, which was recorded for the Just Talking podcast – https://justtalkingpodcast.com/2018/01/09/with-rebecca-hogue/

    What do you think?

  • Reflections on – When breath becomes air

    I just finished reading When Breath Becomes Air by Paul Kalanithi. I’m glad that Lucy Kalanithi was speaking at an event with a friend of mine, Kelsey Crowe who wrote the book There is No Good Card For This (highly recommended), as I otherwise may not have added When Breath Becomes Air to my reading list. I’m glad that I did. There were some interesting observations and that I made whilst reading the book that I thought I’d share with you.

    It occurred to me that my relationship with statistics changed as soon as I became one.
    …
    What patients seek is not scientific knowledge that doctors hide but existential authenticity each person must find on her own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability. (p.83-84)

    I had said this myself early on – when I talk about the only statistic that mattered was one – the one that I was. I later came to learn that statistics were helpful in making treatment decisions (the unknown future), but there were not helpful after I had made a decision (the known past). Once the decision was made and the treatment was done, the statistic no longer had any value to me. It no longer mattered because I could not change the past – only the future. Although statistics look at past events, they are only useful when helping make decisions about future ones.

    “Will having a newborn distract from the time we have together?” she asked.

    “Don’t you think saying goodbye to your child will make your death more painful?”

    “Wouldn’t it be great if it did?” I said.

    Lucy and I both felt that life wasn’t about avoiding suffering. Years ago, it had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving. Describing life otherwise was like painting a tiger without stripes. After so many years of living with death, I’d come to understand that the easiest death wasn’t necessarily the best. (p.89)

    In reading this I had a bit of an epiphany. I had never really understood the idea from Buddhism that life was about suffering, but I had taken suffering to be about agony, and not discomfort or pain. When I hike and I’m pushing up a hill, and I’m breathing hard, I’m not comfortable. I’m pushing through the discomfort because I know that when I get to the top I will feel a euphoria. There will be a reward. I will be happy for having put in the effort. It is that type of suffering that is good suffering. It is the type of suffering that leads to happiness. I do not think we need agony to appreciate happiness, but we need some suffering. That was my ah-ha moment.

    In reading the book, I also found myself reflecting on the different lenses associated with decision making. More specifically the ways things change when dealing with critical illness.

    “Okay. But there’s one thing.” She paused. “I’m totally happy for us to make your medical plan together; obviously, you’re a doctor, you know what you’re talking about, and it’s your life. But if you ever want me to just be the doctor, I’m happy to do that, too.”

    I hadn’t ever considered that I could release myself from the responsibility of my own medical care. I’d just assumed all patients became experts at their own diseases. I remembered how, as a green medical student, knowing nothing, I would often end up asking patients to explain their diseases and treatments to me, their blue toes and pink pills. But as a doctor, I never expected patients to make decisions alone; I bore responsibility for the patient. And I realized I was trying to do the same thing now, my doctor-self remaining responsible for my patient-self. Maybe I’d been cursed by a Greek god, but abdicating control seemed irresponsible, if not impossible. (p.112)

    There is so much to unpack in this part of the story. Let’s start with the role of the oncologist. In this case, the doctor sounds absolutely amazing. She appreciates that at different times in treatment, the patient needs different things. With the “expert” patient early on, the doctor is a consultant – providing her expertise on the disease. The patient is the one making the decisions about which treatment path to take. The doctor steps back and has the conversation with the patient as partners in determining a care plan. However, the doctor is also aware that there will come a time when what the patient needs most is for someone else to take charge. She is letting the patient know that when he is ready to let go, she is there to take the reigns and make the decisions that need to be made.

    Then there is the doctor-patient (the author) – that is, the patient who is also a doctor. He talks about his time as a junior doctor, willing to learn from the patient. I actually wrote about that from the patient perspective for In-Training magazine: Sometimes the patient is the teacher. The exception I take to his statement is that the author is assuming that all patients of critical or chronic illness are experts in their disease. Not all patients, even the educated ones, want to be experts in their diseases.

    The idea that the author never considered the idea of releasing responsibility for his own care may speak to the culture of the US healthcare system – or maybe it is just a Stanford thing? In my experience at Stanford, I had to be the continuity of my care. I had to be the one that knew which doctors to see for which ailments, but also, I had to brief my doctors on what the other doctors where doing and saying. I am the one who knows the whole picture of my care. I do not have a single doctor that can do that for me.

    This concept of patient being responsible for care is one that was foreign to me before I got here. I was taught that I brought concerns to my doctor, and my doctor (my primary care physician or family doctor), was the one who was responsible for my continuity of care. She was the doctor who had the ‘entire’ picture of my medical history (one huge paper file). I had no concept that I would be the one to maintain the file and that continuity of care until I moved to the US and had to take on that responsibility myself. I had to learn that through immersion into the system that was foreign to me.

    Then there is the issue of responsibility “But as a doctor, I never expected patients to make decisions alone; I bore responsibility for the patient”. This statement bothered me, in part because as a doctor you may make certain decisions about my care, but I’m the one that has to live with those decisions. What you take as responsibility, I need to live with. The statement feels a little patronizing to me, and yet, as I read the book and got to know the author through his writing, I felt that he was anything but patronizing. He was all about helping patients come to understanding their values and how those values helped guide treatment.

    One of the bits of advice that I received early on, and regularly talk about is ‘decide who you trust, and trust them’. This is the essence of being able to receive care. Part of that trust is partnership with physicians when it is appropriate to partner, but as a patient also letting go of the need to control things and trusting the physician to take care of you. We do this with surgeons when we go in for an operation. We cede our ability to care for ourselves while we are under anesthesia. We trust that the surgeon we chose will do what is best for us, based upon what they know of our values but also what we know about their skill.

    There was also an incident in the emergency room with a resident, that also speaks to how he knew of the inter-workings of the hospital system, and yet was still challenged with getting the care he believed was necessary at the time. Through illness, he was required to cede control of his care to the resident who was on duty that evening.

    Overall, I think this book would make for a great read and a great discussion on the role of the physician and the role of the patient. I think there are so many layers to the discussion.

    Have you read the book? What did you think? Any insights?

     

     

     

     

  • Recurrence and hormone therapy

    Even since Cancer Research UK posted an article reporting on a research report by Pan et al (2017), I have seen a lot of discussion on the topic of hormone positive breast cancer prognosis and hormone therapy.

    The article itself caused a lot of concern surrounding two key things: (1) the continued risk of recurrence through 20 years, and (2) anti-hormone therapy treatments. I want to talk about the second issue first.

    The inclusion criteria for the Pan et al (2017) research (that is, the women who were counted in the study) were those who were “scheduled to receive endocrine therapy for 5 years then stop, regardless of actual adherence” (p.1837). What this means is that the research study itself can in no way make any comment about the efficacy of endocrine therapy (also known as anti-hormone therapy such as tamoxifen or aromatase inhibitors).

    Confusion around anti-hormone therapy stemmed from this quote in the Cancer Research UK article:

    Gray said that the study shows it’s important for women with ER+ breast cancer to continue with their anti-oestrogen therapy for longer than the recommended five years. He hopes that these results will motivate women who are experiencing side-effects while on this treatment to persevere with it.

    The problem is, that the research report by Pan et al (2017) does not speak to the efficacy of hormone therapies. In the discussion section (this is where the researchers look at the literature and their research and interpret what it might mean), it says:

    Although reliable trials evidence is not yet available on the long-term effects of extending endocrine therapy for 5 additional years on mortality, an absolute reduction of a few percentage points in the risk of distant metastases over the next 15 years might well be possible even for such low-risk women, with correspondingly greater absolute benefits for women with larger tumors or node-positive diseases (p. 1844)

    The area of specific interest to me in the above statement is that there is no evidence yet on the long-term effects of extending endocrine therapy. It does no good to cure cancer if the cure itself kills you from heart disease or makes your bones crumble from osteoporosis. Endocrine therapy is not without risks, and often involves horrible quality of life issues.

    I want to talk more about what the Pan et al (2017) says. The research applies to easily stage survivors who were diagnosed under the age of 75 who has either stage 1 or stage 2 cancer with less then 10 lymph nodes involved. In addition, to be included in the study, patients had to be disease free after 5 years. The study looked at recurrence rates at the 5-20 year interval.

    Note also that in order to get 20 year data, it means that some of those who were included in the study were treated 20 years ago. Chemotherapy regimes and practices have changed, as have surgery techniques, since the time of diagnosis. The study anticipates that those who are diagnosed today will have statistically better outcomes than those represented in the study.

    In reading the article I was put at ease a little by seeing this image.

    screen-shot-2017-11-13-at-2-59-01-pm

    Although the risk of recurrence doesn’t stop over the 5-15 year period, it helped me to understand that my 20-year absolute risk isn’t my year-over-year risk. What I mean by that is, looking at the bottom yellow line, that if my 20-year risk is 15 percent, that doesn’t mean that each year my risk is 15 percent, rather at 5 years my risk is 3%, at 10 years it is 8%, etc. That actually made me feel better. For some reason, I had in my head that if I’m at a 30% risk, that I am always at a 30% risk – such that for any given day, I had a 30% chance of learning that my cancer had come back. That isn’t right thinking at all. The picture helped me realize how the statistics actually worked. It helped me feel less worried about where I am today. (note this is just one picture, there are a bunch of others in the report).

    It is still a bit of a blow to think that regardless of how long I live, I will have a risk of recurrence. I knew it, but it didn’t really sink in until I saw the graphs. What this also made me think is that because of my young age at diagnosis, the longer I live, the more likely the cancer will come back (assuming the slope of the graph follows as it has the first 20 years).

    There were some specific predictors mentioned in the report that I thought were of interest:

    Although all the women had been clinically disease-free for many years, the original tumor diameter and especially the original nodal status remained powerful determinants of late distant recurrence, even during the second decade after diagnosis. Within each TN-status category, distant recurrences continued to occur steadily throughout the person from 5 to 20 years. (p.1840)

    This is encouraging for me because my nodes where negative.

    Tumor grade and the presences of Ki-67 antibody…were important independent factors of prognostic value during the first 5 years but were of only moderate relevance thereafter. (p.1841)

    This is also interesting, as it says that the grade of the tumor (how fast it was growing) is a predictor for the first 5 years but less important after 5 years (still relevant, but only moderately so).

    And finally:

    The prognosis for women in particular TN categories has somewhat improved owning to earlier diagnosis, more accurate tumor staging, and better surgical, radiation, and systemic therapies.

    …

    In conclusion, even after 5 years of adjuvant endocrine therapy, women with ER-positive , early stage breast cancer still had a persistent risk of recurrence and death from breast cancer for at least 20 years aft er the original diagnosis. (p.1845)

    Reference

    Pan, H., Gray, R., Braybrooke, J., Davies, C., Taylor, C., McGale, P., . . . EBCTCG. (2017). 20-Year Risks of Breast-Cancer Recurrence after Stopping Endocrine Therapy at 5 Years. N Engl J Med, 377(19), 1836-1846. doi:10.1056/NEJMoa1701830

    If you want to read the full article and are unable to access it, leave me a message and I’ll email it to you.

  • Critical health literacy, statistics, and treatment decisions

    I was asked to choose between ACT chemotherapy and TC chemotherapy. Both were shown to be as effective, so the decision was mine. In making the decision, I looked at the potential side effects of each, as well as what the standard of care would be in Canada. Further, I looked at the literature and saw that there was more data on the ACT regime. I used that information together with knowledge of how my body reacts to things and my gut-feelings to decide on the ACT chemotherapy. The medical oncologist confirmed my decision by saying that 80% of women who need chemotherapy for hormone positive breast cancer get ACT chemo.

    Now that I am much further out from the decision, I can see the problem with this statistic and some of the other data I used to make the decision. At the time, I felt comforted by knowing that this was a chemotherapy regime that was used in other places, and that it was common. If 80% of others were getting it, then it had to be the best choice right?

    The problem is that the statistic is skewed by time. The longer a treatment is available, the higher the statistic will be. In addition, the longer a treatment option is available the more 5 year and long-term survival data there is (academic measures of treatment used in evidence-based medicine). Once a treatment becomes standard of care internationally, the number of people that get that treatment becomes much higher than other options. It means that newer treatments will always have lower numbers – at least until they are proven to be more effective and take over as standard of care. So, the percentage of other people who have had that treatment isn’t necessarily a useful number when it is used to make the treatment decision. Further, the older a treatment is, the more likely there is long-term survival data on that treatment. It doesn’t mean the treatment is better, it just means there is more data about it!

    I also did not appreciate that looking to the standard of care decision was also not the best information for making my decision. It was comforting to know, but I didn’t appreciate that newer treatments take time to become the standard of care. So the newer treatment might actually be a better choice, but the statistics and standard of care data are not data that would support choosing the newer treatment options.

    This is one place where the practice of “evidence-based medicine” can fall apart when it comes to decisions in care. The evidence will almost always suggest the older treatment options. There is a bias towards the older and better understood option. That is a nuance that was not appreciated by me, an academic, when I was in the position to have to make the treatment decision. It was not something that anyone pointed out to me.

    I think this might also be an important factor when promoting clinical trials. In order to advance care, clinical trials are important, and often provide better treatment options – or at least that is their goal. However, patients can shy away from them in part because of a misunderstanding of the data, and not appreciating the biases associated with the current standard of care.

    Another non-medical place where I see this bias is on YouTube – I have been using YouTube for years to provide how-to tutorials for technology. My most viewed video is an old one. But because it has been there for years, it has a much higher view count than newer and better versions of the same tutorial. The higher hit count of the older one causes more people to watch the older one, which in turn increases the hit count more. The newer one cannot catch up. There is a bias towards the older one because it has a history. It has been available longer and therefore has had more time to get hits. I see this bias all over the internet. Whenever an already known entity needs to compete with something new – the older known entity goes into the competition with a bias because of its history.

    I think this is another way in which we can look at health literacy from a critical perspective – what are the biases in the data itself?

  • Blogs, Bikes, and Breast Cancer

    Blogs, Bikes, and Breast Cancer

    Many of my readers know that in a previous life – 9 years ago now – my husband and I took 16-months off and road our bikes around the world. It was this adventure where I started to blog seriously for the first time. It is also where the domain name Going East came from – we left from Ottawa and went east until we got back home – hence going east.

    In addition to blogging, I also started following blogs. I read them obsessively to help prepare for the trip and during our trip. We had guidebooks and maps for the places we visited, but they were of limited use. Guidebooks were often years out of date and not bicycle touring specific. Maps showed major roads, but not the good roads for cycling. When crossing international borders, we also needed to know what the current visa situation was – something that guidebooks cannot keep up with, and even government websites aren’t always current. We did, however, find that we could following bloggers who were a few weeks ahead of us, following a similar path, and use their experience as a way to help guide us. The information they provided was both bicycle touring specific and current. In addition, we could reach out to those who were a couple weeks ahead of us and ask them specific questions. They often were happy to share their experiences, and if our paths crossed we even met up in person.

    It occurred to me that this is very much like academic literature and blogs for breast cancer treatment. The academic literature is well researched, but also years old (it takes years to get published) and only provides the perspective that the scientists/clinicians care about, not the information that patients care about. The academic literature is the ‘guidebook’ for breast cancer. Where breast cancer blogs, and other social media, provide more specific information, and often more current information. They share what the patient is experiencing, often as they are experiencing it. In addition, many breast cancer bloggers are happy to share their experience with anyone who sends them a note. I know that I am. I know that several of the bloggers who I follow were happy to talk to me when I needed it.

    My point is that guidebooks and academic literature provided well researched information that is of general interest to a target audience. The cycle tourist and patient experiences are specific audiences that are not the target of guidebooks and academic literature. If you want more current information, and you want more specific information, then blogs (and other social media like Twitter chats and Facebook Groups) can fill that gap. It is not just that social media help provide information and context on what it means to actually live with illness, it is also that they provide more current information and information that is of specific interest to patients.

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