BC Becky

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

Category: Opinion

  • November is writing month

    November is writing month. Before I started my PhD, I participated in NaNoWriMo – National Novel Writing Month. I sat down every morning and wrote stories relating to our Going East trip. The process itself was rewarding, but I have yet to go back to that writing and turn it into anything. Every November, I am reminded of NaNoWriMo and often reflect on that experience.

    This year, I have signed up for two different spin offs of NaNoWriMo – DigiWriMo (Digital Writing Month) and NaBloPoMo (National Blog Posting Month). I was drawn to DigiWriMo by my friends who are involved in hosting it – however, I’m not that interested in exploring alternative media for posting. I’d really like to focus more on writing. This is what drew me to NaBloPoMo. It is run by a group that I’ve been aware of for some time – BlogHer – an organization that was founded to help amplify the voices of women bloggers.

    So this November I’m going to look at NaBloPoMo. The initial message for the first week is the idea that “we are all experts”.  This is actually an important message that I emphasize in the Should I Blog course that I created. From an illness blogging perspective, everyone is an expert in their own bodies. Everyone is an expert in their personal lived experience. I just love that message!

    So with this post, I am officially launching my NaBloPoMo experience. I will likely not follow the daily prompts unless I get stuck. I feel like I have a backlog of things to write about, so hopefully that will keep me on track to create a blog post for each day in November.

    I had some trouble decided on which blog I would use for NaBloPoMo. In the end (with the twitter encouragement from @blogher), I’ve listed both of my regular blogs – this one and my academic blog. My posts will be different for each blog most of the time  – so I’m making a double commitment to write two posts per day! I do reserve the right to post the same content on both blogs when the content is appropriate for both (like this post).

    And as this is my official launch of NaBloPoMo, I’m including the Badge:

    NaBloPoMo November 2015

  • Perplexed about not recommending clinical breast exams

    It is October – Breast Cancer Awareness Month – and with that comes pink ribbons, but also a lot of blog posts and public information announcements about breast cancer. It is at this time that the American Cancer Society (ACS) announced new breast screening guidelines. The detailed recommendations are available here: http://jama.jamanetwork.com/article.aspx?articleid=2463262.

    What has me perplexed is the line “The ACS does not recommend clinical breast examination for breast cancer screening among average-risk women at any age (qualified recommendation).”

    One of the challenges with the new guidelines is that it does not make any recommendations for the average women under the age of 45. I fit into that category. I was an average women under the age of 45. I had not had a mammogram. I found a lump by routine breast self-examination. I had regular clinical exams – which helped me to learn how to do my own self-exams. I do wonder if the patient educational benefit was considered in this recommendation?

    One of the support groups that I am a part of – The Bay Area Young Survivors (BAYS) – has a statement relating to the latest guidelines that I’d like to share here (thanks Meaghan Calcari Campbell for writing this up). These speaking points reflect an ongoing discussion within the BAYS community – but I thought they were important for the wider audience (highlights are mine):

    1. re: the ACS guidelines, it’s an incredibly complex topic with bitter scientific debates. For young women in particular, however, the research and treatments are significantly underdeveloped.
    2. because BAYS is not a health-care providing organization, we encourage women to consult their physicians to understand the benefits and risks associated with mammograms and what is the right screening tool for them.
    3. and overall, we advocate for better tools to screen, diagnose, detect and monitor breast cancer for women of all ages.
    4. young women in particular face specific issues. one reason is that they often have dense breasts.
    5. 80% of young women diagnosed with breast cancer find the lump themselves, suggesting that their cancer is palpable (published in Journal of Clinical Oncology, 2009). many BAYS women have found their own lump.
    6. however, we have some women who were diagnosed with cancer, including between the ages of 40-45, through a mammogram.
    7. so if we’ve learned anything, no matter what your age, we encourage you to be your own advocate to get the healthcare you deserve

    The new guidelines do not say anything about encouraging breast self-exams. In some ways, I think this may be an area were evidence-based guidelines lead us astray. They are measuring the effectiveness of specific screening tools but they don’t account for the human element. They also don’t account for the educational benefits of the clinical exam process. Clinical breast exams may not be an effective way to screen for breast cancer (this means we need better screening tools), they are, however, a great way to educate women on how to do effective self-exams. Personally, I always worried that I was doing my self exams incorrectly (given how quickly I found my cancer, I was doing it right). My annual clinical exams helped me better understand how to do my regular self-exams. 

    So I am left perplexed about the new ACS breast cancer screening guidelines. They do not say anything about screening for women under 45 at average risk. Per my earlier post, the risk is still significant for women under 45:

    Age 30 . . . . . . 0.44 percent (or 1 in 227)
    Age 40 . . . . . . 1.47 percent (or 1 in 68)

    If we aren’t doing clinical exams, and aren’t doing mammograms for those under 45, how are we supposed to catch the cancer?

     

     

     

  • Lifetime risks of breast cancer

    Ever wonder why, if one in eight women are at lifetime risk of getting breast cancer, that you don’t know that many women with breast cancer? Unless, of course you are a survivor yourself, or have a family history of breast cancer – in that case, you probably know a disproportionate number of women who have had breast cancer. But you are the exception not the rule.

    Before my diagnosis, I knew of only a couple of people who have had breast cancer. I didn’t know anyone who had breast cancer as a young person (in breast cancer terms, anyone diagnosed under 45 is considered ‘young’). If one in eight women gets breast cancer, why didn’t I know more women? In part because the one in eight statistic is a lifetime risk statistic.

    Ever since I first say a post on this topic, I’ve wanted to write about it – but I couldn’t find the original post that I read. So today, when Brandie of A Journey of 1000 Stitches posted the numbers to Facebook, I was able to ask her about the numbers. She wrote about the numbers in a post back in November last year title Um, say what? Following the trail a little further back, I found the post that I originally read, from AnneMarie at Chemo Brain… In the fog, which was published last October titled One in Eight, Sounds Great.

    Thanks to Brandie, I have the original data from the NIH National Cancer Institute – http://www.cancer.gov/types/breast/risk-fact-sheet

    So here is how it all works when you do the breakdown by age (from the NIH site):

    According to the current report, the risk that a woman will be diagnosed with breast cancer during the next 10 years, starting at the following ages, is as follows:

    Age 30 . . . . . . 0.44 percent (or 1 in 227)
    Age 40 . . . . . . 1.47 percent (or 1 in 68)
    Age 50 . . . . . . 2.38 percent (or 1 in 42)
    Age 60 . . . . . . 3.56 percent (or 1 in 28)
    Age 70 . . . . . . 3.82 percent (or 1 in 26)

    These probabilities are averages for the whole population. An individual woman’s breast cancer risk may be higher or lower depending on a number of known factors and on factors that are not yet fully understood.

    So, of all the women in my age range, the likelihood of one of them having breast cancer was only 1 in 68 (I drew the unlucky straw there).

    I blog a little bit about why these numbers matter when I talk about the 30% to 1/3 inflation of the metastasis statics. Anytime a number is used as a scare tactic, to try to get people to take action (in this case to donate to often dubious breast cancer charities), they have a negative impact on the people who are living with breast cancer. The numbers increase our anxiety – and frankly, many of us already have more anxiety than we can cope with, we don’t need any more. So, before you throw out a statistic that is inflated as a means to scare people into donating money, please consider also the people who are on the other side of that statistic. We don’t need any unnecessary anxiety in our lives!

  • Decide who you trust

    A friend (Marie Ennis O’Connor) has asked me to blog about something that I’ve learned through my experiences with breast cancer. I went back through my blogs, looking for this story, and realized that I did not tell it. Perhaps it is because it is a learning through reflection, rather than an in-the-moment type story.  An aside – perhaps it is this type of after the fact reflection that makes books about illness different from blogs about illness?

    When I think back about one thing that I’ve learned, it is that treatments change over time but advice is full of ‘old wives tales’ which are often based upon older treatments. This was never more poignant than during my last round of AC chemotherapy. Throughout AC chemo, I had been suffering from nausea. I new from support group that people who tolerated it well only had nausea for three to five days. I had nausea for at least eight days. Given I was on a 13-day cycle, this meant more days with nausea then without. Now, my nausea was never really bad. When I complained to my oncologist, he asked me “when was the last time you threw up?”. Never. My nausea was never that bad, it just lingered.

    The folks at support group (especially those a year or so ahead of me) would talk about different nausea meds. The meds I was on were not the meds that everyone was talking about. I found myself wondering if I should be on different meds? In my mind, a change of meds would mean less nausea. I would tolerate the chemotherapy side effects so much better.

    What I didn’t realize was that these different nausea meds were the old school meds. The meds my oncologist had me on were the new ones. People in support groups, and some of the older chemo nurses, were not familiar with the new meds. The recommendations I was getting about ‘what works’ were ‘old wives tales’, and I bought into them instead of trusting my oncologist.

    For my last bout of AC chemo, I tried a different combination of anti-nausea meds. My oncologist was away, so his nurse practitioner changed my meds (in part because I asked for it). I’m sure that if my oncologist was there, he would have explained that I was on the new meds, but also that they were doing their job. I didn’t know the other option was the older option. I didn’t realize that the folk lore about the effectiveness was in part just because it was the older meds. The new meds had not been around long enough to be part of the lore. With the change my nausea was no better, but the side effects of the meds were much worse. I ended up with terrible mouth sores (so bad I needed liquid morphine to manage the pain). One of my biggest regrets regarding my treatment was that I changed anti-nausea meds for the last cycle of AC chemo.  I had forgotten my own advice. I had forgotten who I had decided to trust (my oncologist), and let the ‘lore’ effect my treatment.

    This tale is meant to be a cautionary one. Not so much about seeking advice, but about remembering that people who have followed this path before you did so at a different time. The treatment options (and side effect management options) available to you today may not be the same ones that were available for someone else a year ago. Although older treatments may work, chances are the newer ones are better. Before changing treatment plans based upon what you are hearing on the net or in support groups, ask yourself ‘is this a old tale’? And finally, decide who you are going to trust, and trust them.

  • Patients 2.0 at #health2con

    Yesterday I did a short presentation for a conference session titled Patients 2.0, which is part of the Health 2.0 conference. Since I wasn’t given a lot of notice, I threw together a presentation relating to my rant about the diagnostic process for celiac disease – loosely based on my blog post. The question each speaker was asked is “if you had a magic wand and could change anything about healthcare (except making it free), what would it be?”  Given the short notice, I expected a more informal session. It turned out I was on a stage talking behind a podium. Fortunately, I’ve done this enough lately, that I’m comfortable with it. I also have enough passion about my topic that I can speak mostly coherently about it.

    The key take away from my presentation is that I’d like to see diagnostic processes that account for the whole patient story, rather than processes that are based on protocols that don’t see the patient as a person.

    Screen Shot 2015-10-05 at 8.40.33 AM

    Tal Givoly (of Medivizor fame), who I met for the first time during the break, kindly took a few photos of me presenting:

    This conference is drastically different then Medicine X, and yet has a vary similar audience. They are both conferences about the intersection of healthcare and technology. Both conferences also have a strong patient presence. They just take very different approaches to how they include patients into the discussion.

    After the patient / caregiver panel (which is the one I was on), there was another panel on patient innovators. It was really powerful to hear people speak about their personal patient experiences, and how those experiences drove them to innovate in the healthcare space. The speakers were strong advocates and spoke with passion.

    One such speaker was Brian King who created an App to help others with CF navigate healthcare (see https://itunes.apple.com/us/app/my-fight-against-cystic-fibrosis/id918730808?mt=8).

    Another was Roger Holzberg who spoke about creating an Infusionarium – a pediatric infusion center that allowed kids to have meaningful experiences while undergoing treatment. He mentioned that in there needs analysis / exploration stage they discovered that young boys want to learn more about space exploration and girls want to connect with the ocean. What I found interesting with that is that my ‘happy place’ was snorkeling in Hawaii. So, even adult girls find happiness and connection with the ocean! I loved how the infusionarium not only provided an entertainment space, it also provided connections – they had real Nasa scientists talking to the kids in the infusion center. That was pretty cool.

    This was me at this time last year:
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    It actually made me see another opportunity for patent empowerment – the time spent in the infusion center can be wasted time. If you are well enough, then the time could be used to do something rather than passively waste away hours. It is a balance. I spent a lot of my infusion time working, writing, researching … although I also spent a fair bit of it watching TV. I was just lucky that they had really awesome Internet connections in the infusion center. I could be connected and work as much as I felt able to.

    One thing I’m struggling with at this conference is the need for better business cards. At Ed Tech conferences and even at MedX, we used twitter as a way to connect. Twitter is less prevalent at this conference (and it is more difficult to tweet as there are no tables in the session rooms). However, for this conference I’m much more interested in exploring the Exhibits. I’m less interested in the sessions. I actually want to spent some time walking through the exhibit hall, talking to people, and seeing what innovation in healthcare looks like.

     

  • Giving blood … one small vial at a time

    During the Medicine X conference, the twitter stream lit up with calls to give blood. This is always a bit of a frustrating feeling – knowing you want to give blood, but also knowing that you are not able to.

    But what I can do, and I am doing today, is to give a couple small vials of my blood for scientific research. A couple of weeks ago I received an email from Army of Women looking for breast cancer survivors in my area to donate blood for a cancer study. Interestingly, this study was funded by Avon – so those of you who donated to support my Avon walk, this study is one of the studies your donations went to fund. The details of the study itself don’t really matter to me. What I know is that someone researching breast cancer can use my blood to help further knowledge about this horrible disease. That is one small way I can help further research. It was easy to decide to do.

    So, if I cannot give blood to help someone in need, I can do my part by giving blood to support research.

    How about you?

  • “we are all patients” … NOT #medx

    One of the comments that was made, and repeated several times on the first day of the Medicine X Ed conference I attended last week was “we are all patients”.

    This caused me to tweet out:

    I had not really thought about the problem with this rhetoric before, but when I heard the statement I felt it. The emotional me recoiled at the statement. I felt that my experiences as someone who has undergone diagnosis and treatment for breast cancer, and someone who is figuring out how to navigate hormone therapy and celiac disease, who has spent the better part of the last year and half attending to two or more healthcare related appointments each week, was discounted as “normal”. My experience was in no way unique or special. Saying that “we are all patients” is saying that the patient experience is something that is normal.

    Carolyn Thomas of @heartsisters explains it well in her post: “We are all patients.” No you’re not.

    What really struck me though, was that my response to the statement was an emotional one. It wasn’t rational Becky disagreeing with the statement. It was emotional Becky feeling like my experience as a patient had been silenced and discounted. That my story was no longer an important story to be told. I was no longer an epatient ‘expert’.

    Of course, academic me knows better. Academic me heard it and saw a parallel to the ‘all lives matter’ argument that is sometimes used to silence the #blacklivesmatter movement. If you are not familiar with what is wrong with the ‘All lives matter’ argument, please read this great article by David Bedrick – What’s the Matter with ‘All Lives Matter’.  It is, perhaps, because I had read that article that I saw the parallel in what was happening at Medicine X Ed.

    I’m kind of sad that my tweet didn’t get more favorites or retweets. I think it is important that we stop saying ‘we are all patients’ at medical conferences and within medical education. Unless you’ve experience critical/chronic illness, you cannot even begin to imagine what it means to be a patient.

  • Virtually Connecting at QUB ePatient Conference (#qubept)

    After all the excited from the ALTC Conference in Manchester, I flew back to Belfast to attend a conference on ePatient – The medical, ethical and legal repercussions of blogging and micro-blogging experiences of illness and disease (#qubept). It was a small conference of about 30 attendees. You would not have known how small it was by the very active twitter backchannel – which Marie Ennis O’Connor has storified here: Day 1 Storify, Day 2 Storify.

    For Virtually Connecting, this conference represented our first experience outside of Educational Technology. Personally, I think the area of patient engagement is one that could benefit a lot from this type of short but powerful conversation. We did two hangouts, one at the beginning of the conference and another at the end.

    Wondering what ePatients are? Watch the first video and learn a bit about what the conference was all about. The discussion included mentions about the need for improved digital literacy skills, which is something I try to address in my ShouldIBlog.org free course (which was mentioned a few times during the conference).

    In the hangout, AnneMarie Cunningham mentions Liz O’riordan’s blog: Breast Surgeon with Breast Cancer.

    The pre-conference hangout stars:

    Onsite: Rebecca Hogue, AnneMarie Cunningham, and Steven Wilson
    Online: Autumm Caines, Kate Bowles, Marie Ennis O’Connor, and Terri Coutee

    In the post-conference hangout we talked about the idea of needing to make a change from Patient-centered care to Patient networked care – and idea that was brought up during the second keynote by Julie Kennedy. In the after show (after the onsite folks left) Stacey Tinianov highlights the gap in patient voices, specifically those who are not digitally connected.

    Watch the post conference hangout, starring:

    Online: Suzan Koseoglu, Marie Ennis O’Connor, Stacey Tinianov, Alene Nitzky, and Annette McKinnon
    Onsite:Rebecca Hogue, Cathy Ure, and AnneMarie Cunningham

    What this experience has taught us is that Virtually Connecting has value outside of Educational Technology conferences. It has also help to point out a need within the ePatient community to help foster connections between ePatients. It also has highlighted the desire to connect patients to clinicians (e.g. physicians, nurses, etc).

    I’m not sure yet what the next steps will be for Virtually Connecting within the ePatient space. I’m open to suggestions. Please leave a comment with your ideas.

  • There is harm in giving false numbers

    This week, Ann did the footwork (thank you) and posted about a false statistics that has been made very popular within the breast cancer blogosphere. I must confess, that I am guilty of using this false statistic. But worse, this false statistic has caused me great amount of unnecessary stress and emotional harm.

    What is this statistics? It is the “30% of early stage breast cancers go on to metastasize at some point”. I’ve seen many different articles that talk about how “early detection” doesn’t necessarily save lives, because we do not know what is causing metastasis, and some people who do everything right still get metastatic disease. However, saying that this will be true for 30% of us is just plane scary. It adds to the fear mongering that is all too present in our culture today.

    One of the biggest challenges of being a part of the blogging community is that of critically assessing anything that is posted on blogs. It is something that I often do, but for this one statistic, I did not. I found it ever pervasive, and thought that someone must have come up with that number some how. It is also too easy of a statistic to use. It is useful when trying to make a point. But, it also does a lot of harm – and that harm is mostly to those of us who have undergone treatment for early stage disease and are trying to get on with our lives. We don’t need that extra fear of 30%, especially when the number might actually be much lower for a given person.

    If there is no national register for metastatic disease, and no data on how many people progress to metastatic breast cancer, then how the heck could one even come to that number in the first place? There would be no way to know that information.

    So, now I need to reprogram my brain. I need to remind myself that the number is a false one. My chances of survival are much greater than 70% (or truly, since I had three primary tumors – .7*.7*.7 = 34% – yikes). The reality is that I did catch it early, and I did treat it aggressively. I have no idea what my prognosis is, but my care team are certainly not treating it like 34% …

    This got me looking. According to the Komen website, someone in my age rage with ER+ breast cancer has a 94% survival rate. Since I had three cancers, one might wish to multiply this so (.94*.94*.94 = 86%) – which is a far cry from the false statistic above.

    The other challenge with the current statistics is that there have been significant advances in the treatment of HER2+ breast cancer (not the kind I have). So, women with HER2+ cancers who would have had a significantly poorer prognosis 10 years ago are expected to live cancer free for a lot longer. In this case not enough time has passed – not enough people who had HER2+ cancer, and received the targeted therapies, have died of natural causes yet – they are still alive. So the whole statistic in this area is hugely unknown.

    As a survivor, the only statistic that really matters is 1 – that is, it really doesn’t matter what the numbers fall out to be because you already drew the unlucky straw, and as my oncologist is want to say “it is what it is”. However, propagating a false statistic in order to try to encourage people to donate more money to research (or funnel more money into metastatic research), does not serve our community well. It only causes to feed the flames of fear of recurrence and progress – flames that most of us do not need fed. We’ve been fighting the fire long enough, we need to put it out and move on with our lives.

  • 15 Random things about me

    In a post last week, Nancy challenged fellow cancer bloggers to write 15 random things about themselves. I think this is such a great way to help demonstrate how cancer bloggers are not just about the disease – we are people too – but also it provides a great way for us to connect on a more personal level. It allows us to see what other things we might have in common. I have thoroughly enjoyed reading the random things about Nancy, Elissa, Beth, Marie, Rebecca

    1. My closest online friend is someone I have never (not yet at least) met in person – but I’ll get a chance to meet her when we both attend a conference in Manchester UK in September. She was the first friend I told about my diagnosis. She has been one of my best confidants throughout this experience.

    2. I’m a bit of an exercise junkie, but you would never know it to look at me 🙁 … I don’t look like someone who is fit … but I do love to ride long distances …

    3. I’m an extrovert but I love working from home. I love the social aspects of being in an office, but I hate the constraints of 9-to-5 and the noise/disruption means I find it difficult to do any meaningful work.

    4. I sucked at English in school. It was by far my worst subject. I find this particularly amusing as I have since worked professionally as a technical writer (and I’m pretty good at it!).

    5. I actively blog on three different blogs – here, my academic blog (http://rjh.goingeast.ca) and my travel blog (http://goingeast.ca).

    6. I’ve travelled around the world twice – first as a business trip back in the days when Nortel made money. In my first career, as a project manager at Nortel I delivered a sales training in Maidenhead UK, Beijing China, then Sydney Australia. That was back in the day when high tech companies paid for business class seats on airplanes! I spent my weeks teaching and my weekends on planes. I was exhausted when I got home after three weeks. My second trip around the world involved no airplanes, and much of it was done on a recumbent bicycle – it was also were I started blogging more seriously – http://goingeast.ca/blog

    7. I have crossed the three major oceans (Atlantic, Indian, and Pacific) as a passenger on a container ship. I’d love to do this again one day (assuming my health allows for it). It was a great way to cross the ocean and rest up before hitting the open road again.

    8. I started my undergrad as a physics major. I somehow ended up starting university without knowing what an engineer was! In my world, and engineer was the person who ran the engine room on a ship (more like a mechanic for boats). I had no idea that engineering as a career was the practical leg of physics.

    9. I have a completely irrational fear of accidentally jumping off of bridges. Not falling off, jumping off. Like something will happen in the sudden moment as I cross a bridge that will cause me to jump off when I didn’t mean to.

    10. I grew up in a small town that doesn’t exist anymore – see https://en.wikipedia.org/wiki/Kemano – it was perhaps one the prettiest places on earth.

    11. I love being out in nature – I’m not sure if I could live in nature unless it had a high speed internet connection – but being out in nature and especially places with big trees, recharges me.

    12. I identify as a Unitarian Universalist. I was quite active in the First Unitarian Congregation of Ottawa for about 10 years. We haven’t really been able to find a spiritual home here in California, but I still identify as a UU, even if I don’t actively go to a UU church.

    13. I love to cook and entertain. One of the things I miss the most about being in this small apartment in California is that I cannot have people over for dinner (we don’t have the space to host more than one person). I used to love hosting dinner parties – cooking for many people. We used to do a Turkish Breakfast fundraiser, where I’d make a whole bunch of different treats from my travels to the Middle East. Wish I could do that again.

    14. I love being a traveller rather than a tourist. I’m not fussy on all those touristy type things. I’m so glad that when I go to the UK in September, I’m going to be staying in a couple of people’s homes – not just hotels. Seeing how people live really helps to better appreciate the culture they live in.

    15. I never thought I’d ever go on a 10 mile hike, never mind walk 32.5 miles in two days! I’m so looking forward to being able to do more long walks (once my shin splints heal). This opens up the door to so many more places where I could hike!

    16. (one more) … I love taking selfies. I’ve even contemplated getting a selfie stick. I, apparently, even enjoyed taking selfies when I was a child! Check this one out:

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    This has been a fun post … I encourage any of my readers to jump and join the 15 random things about yourself challenge!

     

     

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