BC Becky

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

Category: Research

  • 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?

  • Health literacy as a patients job

    An article on Simplifying patient communication can lead to better health outcomes by Eve Becker, crossed my stream today. I was struck by this statement:

    “Enter the field of health literacy, which aims to help physicians increase patient communication, speak in plain language and write clear prescriptions with easy-to-understand instructions.”

    I found myself wondering why the field of health literacy was defined by something physicians need to, rather than something that needs a more systematic approach. I don’t think of health literacy as a physicians job, I think of it as a patients job.

    I also wonder, why don’t we teach health literacy in school? At one point or another, everyone will get a prescription from a doctor. Why don’t we teach, in health class, how to fill a prescription and what the different directions might mean?

    Patient with chronic or critical illness have special health literacy needs. Their interactions with the healthcare system are much more complex. These patients need to develop a special type of health literacy. This is what I’m trying to figure out with my dissertation. What are the things that patients of critical/chronic illness need to learn, and how do they go about it? I do not see health literacy as a physicians job, I see it as a patients.

  • Is it critical if you don’t also question the value?

    Thanks to Marie’s weekly round-up, I was lead to a post on Critical Health Literacy by the Breast Cancer Consortium. Initially, I really liked that they were tackling the idea of critical health literacy, but then as I read through the post I felt like something was off. I realized that they were defining critical in a narrow way. They linked critical health literacy directly with evidence medicine and a need for patients to understand the ways evidence-based medicine works in order to help patients make healthcare decisions. Sounds fine, except …

    The word ‘critical’ has a completely different meaning when taken in the context of social science. It isn’t about evaluating sources for their scientific merits, rather it is about critically examining sources to appreciate the biases that go into the sources – and this critical examination includes examining the biases that go into the scientific-based sources.

    Philosophically, the scientific worldview is that there is a one truth – and that it is possible to do science in an unbiased way, where in critical theory there is an appreciation that there is no such thing as unbiased. It is impossible to do things without bias, as each thing we do involves so many individual decisions, that you cannot completely remove bias.

    I’m challenged also by the different value systems at play here. One of the value systems that I am constantly fighting is the view that scientific knowledge is more value than non-scientific knowledge – you see this in medical research when you hear things like how randomized control trials (RCT) are the gold-standard. It puts a value for that type of knowledge generation which doesn’t necessarily apply to all situations. It doesn’t account for the complexity or variability of human bodies. Even in a RCT, someone gets to decide what variables are being measured. Someone gets to decided what it means to be successful. Those decisions impact the inherent biases in the RCT results.

    The scientific method attempts to take the human element out of the equation, and yet, when we are dealing with healthcare is it all about the human element. So, a narrow definition of critical health literacy that privileges scientific knowledge without questioning it, is a definition that is fundamentally missing the critical worldview.

    I think health literacy needs to look beyond what science has to offer, and needs also to look at what other social sciences and humanities can offer – health literacy should be looking at ways to improve the human condition, not just to improve some criteria that some group of people (e.g. physicians, researchers) deem to be important.

    What I’m calling for is a critical look at critical health literacy!

  • Doctors think patients … and don’t talk down to me…

    I wasn’t sure right away what didn’t feel right, but upon reflection I realize that part of my viscerally negative reaction at the Health 2.0 expo today was the number of vendors that talked down to me the minute they realized I was a patient advocate rather than a doctor or tech representative. I guess the good thing that can be said is that they didn’t assume they didn’t talk down to me as a women, rather they waited until they found out I was a patient advocate.

    Then there were other vendors that were developing applications that doctors would “prescribe” to patients in order to increase “compliance”. My challenge, when I question them, they were developing their solutions based upon what doctors thought patients needed to know. They were addressing the reasons doctors think patients aren’t complying with directions. They never thought to get together a focus group of patients and ask them. Maybe, the are afraid that they will find out that they are solving the wrong problem. That the hospitals and insurers won’t pay for a tool that patients actually need, rather they will pay for tools that doctors think patients need (that is the pessimists in me speaking).

    For one demo, to be fair the folks at the booth (CEO and CTO I think) were quite receptive to my questions and suggestions. Now in writing this post I think I might be conjoining or convoluting more than one booth – regardless my point holds.

    The tool allowed doctors to prescribe the avatar for certain chronic medical conditions, like diabetes or heart disease  (they didn’t have cancer yet). The patient then could interact with the avatar, asking medical questions and getting medical answers. Further, the doctor is informed of the questions the patient has. It could also be used to allow the doctor to get information from the patient such as blood pressure (assuming home monitoring via bluetooth device).  My first reaction to this was that doctors already get more information than they can deal with – adding a way to give them more doesn’t sound like it is solving a problem. But I did realize a problem that I think their avatar could help with.

    I think the chemo situation is an interesting one. We are told right away to “tell our care team” and “don’t needlessly suffer”, but then when we do tell our care team they appear to completely ignore what we are telling them. At first you report everything. Then after a while you stop. You learn that your doctor isn’t going to do anything about it, or there is nothing they can do about it, so you stop telling them. In psychology terms this is called “learned helplessness”. It can be really dangerous, especially for chemo patients, because some of the side effects are life threatening. I saw their tool and thought, if it had a way to tell the patient “I hear you” in a believable way, it might be a way to help with the learned helplessness. Sometimes all the patient needs is validation. Personally, I think this learned helplessness problem is a big problem that often gets confused with a lack of compliance.

    The conversations highlighted to me that in some cases the tech companies are trying to solve what they perceive to be a patient problem by asking what doctors think patients need, rather than asking patients what they need. They seem to miss that if the end user of their tool is a patient community, that perhaps the patient community should be consulted as the tool is being designed. I don’t mean after the fact usability testing. I mean asking patients during the early design / concept phases whether they would actually use a tool, whether the tool would help solve the problem, and what the patients see as the problem rather than what the medical team sees as the problem.

    Tech can solve many real problems, but too often tech is thrown at a problem as if it is the solution without really analyzing what the problem actually is.

    Ya, that and don’t talk down to me.

  • Snake oil and cancer care

    I have found myself reflecting a lot lately on how one can tell the difference between internet sites / social media posts that are sharing ‘snake oil’ versus those that are sharing legitimate treatment information.

    When I talk about ‘snake oil’, I’m talking about alternative treatments that are in no way proven, but more importantly are intended to generate a profit on the backs of those who are seeking hope.

    I find myself asking, what are the signs (keywords or phrases) that identify something as snake oil?

    I don’t have a clear answer for that. When I hear of alternative treatments that “have no side effects”, that in part is red flag for me. When I hear of alternative treatments that “cure cancer”, that is a red flag for me. Especially in the case of breast cancer, where the word “cure” doesn’t really make sense – we go into “remission”, we don’t get cured. We won’t know if we were cured until we die of something else – but alas, that is an aside.

    When I talk about snake oil, I’m generally not talking about ‘complementary therapies’ – generally. In many cases complementary therapies – given in conjunction with conventional medicine – are not the same as alternative therapies that are given instead of conventional medicine.

    I’m connected to a lot of people who are active on social media in the breast cancer community. I see a lot of different things cross my stream. I find myself looking at them, and often discounting them as snake oil. Things that are clearly intended to extract money from the hands of already cash strapped and desperate cancer patients. But I also see things that might actually be helpful. Things that do reduce side effects. So how do you tell them apart?

    The other challenge I have is in the desire to respect people’s decision to seek the treatment they want, at the same time as not being judgmental, especially when I see the treatments being discussed as pure snake oil. I can see something and think to myself ‘that looks like snake oil’, but I cannot always know that it is 100% true.

    I’d love to be able to teach cancer patients how to recognize the snake oil, but I’m not sure I have a way to do that. I cannot say for certain that western medicine is 100% correct – we have a lot of information that we share in support groups that help us deal with side effects that are not “proven” by western medicine. Those things are not ‘snake oil’.

    I guess for me, the biggest red flag is money. If someone is asking money for something, then it is suspect. Paying money for scans that your doctors don’t believe are necessary, or paying for expensive dietary supplements seem to me to not be authentic. They raise flags as ‘snake oil’ which can do more harm than good. But is money the only thing that triggers the red flag? What other things might be signs that the alternative treatment is bogus? What do you think?

  • Looking for theme validation help

    One of the challenges I’m having with my research is with the identification of themes within the blog posts. I’ve identified 10 key themes that I’d like use, but I’m afraid that because I’m coding my experience, I’m reading more into the blog posts than what others see. In this way, I’m too close to my data.

    I’m looking for a few people who would be willing to help with validation of my theme coding key. What this involves is reading how I defined the themes, and then reading 20-30 blog posts (could be less if this is too time consuming) and indicating which themes occur in the given posts. Then, we would have a conversation (Skype or Zoom, or email) to discuss any areas where you see things that I missed.

    If you are interested in helping, please leave a comment, tweet or email me.

  • Living Pathography – An Open Dissertation blog

    I have decided to brush off the domain I had originally setup for my dissertation. I have much better sense of where the project is going – so I’m using that blog as a way to share my writing as I write, and my field notes and ideas as they occur to me. It is a living blog.

    David Elpern at http://pathography.blogspot.com/ defines pathography as “a narrative that gives voice and face to the illness experience. It puts the person behind the disease in the forefront and as such is a great learning opportunity for all care givers and fellow sufferers.” I chose Living Pathography for the domain name because all the current work on pathography relates to books rather than blogs. I think of blogs as living books – ones that can be updated regularly – but also ones that contain reflections of the experience as it is happening, rather than the post-processed reflective version that is presented in book form. There are less constraints when blogging, allowing the writer to express illness in a raw and authentic way, which provides a layer of learning that can be lost when the experience is distilled into a book narrative.

    I will cross post things here that may be of interest, but also, there are things that happen on this blog that are completely unrelated to my dissertation. I’ll try to keep the academic language (like the above paragraph) to a minimum on this blog, respecting that the focus of this blog is my emotional and physical journey.  The new site will focus on my dissertation as well as other academic papers, conference presentation, or book chapters associated with health blogging.

    If you are interested in following specifically my dissertation journey, I invite you to follow me at http://livingpathography.org or on Facebook at: https://www.facebook.com/livingpathography/

  • Identity

    As part of the PhD process, I’ve been reading through my blog from the beginning. I wrote it, but I have never actually read it – at least not in this way.

    I am immediately struck by how my memory of the time doesn’t completely align with what I wrote. I know that what I wrote was a much more accurate reflection of what I was thinking than my memory of that time. There are a few places where I realize that what I wrote doesn’t even begin to capture what I was feeling – I can tell when I was holding back to help protect family members who were reading – but there were many times where I was fearful, in pain, and honest about it – that I don’t actually remember – at least until I read about it.

    I’ve also been struck by how well I managed to write through (and see) brain fog. Now I know there are additional brain fog moments – which I haven’t gotten to year – but certainly the early days of taxol, and the cognitive challenges I was facing – I wrote about in some detail. I will write more about this later, once I’ve read more, as I know that my cognitive issues continued for much longer than I realized.

    One of the themes of my posts have been my exploration around identity. Heck, the subtext of this site is “I never thought I’d want to identify as a breast cancer survivor”. I was deep into exploration of my identity when I got diagnosed, so it was definitely something that was on the forefront of my mind when I started this blog. What I find interesting now is that the things I was worried about then no longer worry me. I care a lot less about what other people think of me. I’d be naive to say I didn’t care, just that opinions of others are generally less of a concern to me now. It is less of a reason for me making the decisions that I do.

    I also wrote a lot about body image. I wrote about my concerns as I was making a decision about surgery. I remember being so opposed to and incensed by reconstruction, and then that changed – and yet the blog doesn’t even begin to express how strong my feelings were. In so many ways, in my memory of that time, I was over-amplifying my outrage in order to compensate for my true desire to reconstruct.

    Today was a bit of a landmark day – well maybe not landmark but important. Over the last few months, I have been showing a little of my naked body in the gym change room. Not usually a lot, but really, I was becoming less and less worried about putting moisturizer on my scars before putting my clothes on. In early days, I would only do this in the shower stall, where I knew I had complete privacy. Today, I chose not to worry in any way. I let my towel drop to my feet, and slowly applied moisturizer before putting clothes on. I just didn’t care anymore. I felt like I was even challenging others to ask the question. If anyone stared, it would be a great conversation starter. If someone asked about my scars or my surgery, I could explain, no this was not a cosmetic choice, rather it was cancer that forced my hand. I was OK with it before, but today, I was just a little more brash about it. I just didn’t care what other people thought.

    I actually seem to have much less of a concern about what the future may hold. If things don’t go well with our green card application, and we end up moving back to Canada sooner than planned, I’m much less worried about it. I used to worry about having to let go of my doctors – not that I’d want to – but now, I know that I’d be ok with going with the flow. Sure I wouldn’t be happy about it – I don’t want any external factors forcing my decisions, but I also know that I’d manage to do OK regardless of the circumstances.

    Today, I’m 3 years older than when I was diagnosed. I’m looking forward to celebrating many more birthdays. Who knows where (or who) I’ll be at this time next year!

  • Health (illness) bloggers

    Health (illness) bloggers

    In my literature review for my research I came across a great article (Keating & Rains, 2015) on the social support health (illness) bloggers receive. The article does a good job looking at social support of bloggers over a three year period.

    One of the things that came clear in the article is the use of the term health blog rather than the term illness blog. It has really got me thinking. A lot of bloggers shy away from the term illness blog because of the negative connotation around it. My immediate thought was the opposite of illness blog is wellness blog, but the term wellness blog is already used for those who are promoting wellness (e.g. diets, exercise routines, etc). Although the health (illness) blogs are written by someone who is experiencing illness, the focus of the blog is often the personal journey – and that journey is someone trying to figure out what health looks like for themselves. I do like the more positive connotation that health blog implies.

    I pulled out the following findings from the article:

    “The results indicated that changes in support available from blog readers and from family and friends over the course of 3 years were significant predictors of changes in bloggers’ well-being. Increased support availability from bloggers’ family and friends was associated with a decrease in bloggers’ feelings of loneliness and an increase in their feelings of health self-efficacy” (Keating & Rains, 2015, p.1454)

    The article makes mention of the idea of strong-ties and weak-ties. Strong-ties would be those with close family and friends. These are the people you can call anytime. They are your primary support. Weak-ties are those of acquaintances. They are not necessarily your close friends, but they still provide support through your experience. In this case, bloggers often have weak-ties with other bloggers. These weak-ties also help in increasing the feeling of support and decrease feelings of loneliness. I think we need both.

    “The results also demonstrate the benefits of blog reader support and suggest that this type of support can serve as a unique resource about and beyond strong ties. After we controlled for changes in support available from family and friends, change in blog reader support was associated with decreased health-related uncertainty. Bloggers who reported an increase in support from blog readers across the two measurement periods also felt that their health condition was less unpredictable” (Keating & Rains, 2015, p. 1454)

    What really resonated with me here is the idea that reading blogs helped to make my experience with breast cancer treatment less unpredictable. I was able to read a lot about people who had experienced the same surgery and breast reconstruction – so I better understood what my experience might be like. You cannot fully predict your experience as each journey is individual, but it really does help to have some general ideas of what you might experience as well as some tips on how to better cope.

    “In addition, the findings suggested that bloggers who perceived themselves as being in better health at the first time point were less likely to continue blogging over an extended period of time. It could be the case that those who evaluated themselves as being in better health were less likely to perceive value in continuing to document their experiences” (Keating & Rains, 2015, p. 1455)

    The idea that we blog less when we are healthy is something that I’ve definitely seen and experienced. We often feel like when things are going right we have nothing to say. A blog post that says “today was normal” does not feel that interesting, and yet, it is an important thing to say. It is really important to celebrate the good days, so that the blog is also providing encouragement to other patients. When cancer bloggers stop blogging we assume one of two things (1) they are healthy and don’t think they have anything interesting to say, or (2) they have died.

    “Through connecting authors with individuals who are coping or have coped with a similar condition, blogs appear to be a particularly useful resource for helping individuals to better understand their illness experiences” (Keating & Rains, 2015, p.1455)

    As a blogger, and one who reads blogs, I completely agree. Reading other blogs did help me better understand my experience. Overall, I did find that this particular study aligned with my experience as someone who both authored and followed breast cancer blogs. Now I just need to get into the habit of using the term health blogger rather than illness blogger.

    Reference

    Keating, D. M., & Rains, S. A. (2015). Health Blogging and Social Support: A 3-Year Panel Study. Journal of Health Communication, 20(12), 1449-1457. doi:10.1080/10810730.2015.1033119

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