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Breast Density

Why You Need to Know Your Breast Density

Breast density is an essential facet of women’s health that often isn’t as widely understood or discussed as it should be. I have to admit, as a woman who was always health vigilant and went for regular mammograms, I was unfamiliar with the term. No one ever talked to me about breast density. I recall a mammogram technician saying to me one time that my breasts were “ropey” but I never knew what that meant.  Just to confuse things even more, when I was diagnosed with breast cancer and understood the implications of breast density, I inquired about my breast density. I was informed by my family doctor that I did not have particularly dense breasts. That said, the surgeon who examined me at the time of my biopsy said that my cancer was hiding under an area of density. So I remain confused and no longer have boobs so will never truly know the answer to that question. Back to the topic at hand, I also didn’t know WHY it is vitally important that women know their breast density. It is information that can save your life. So, ladies, why aren’t we all talking about it? And including our doctors?  If you were to feel a denser breast, it might not seem very different from a less dense one. That’s because breast density is not about how a breast feels but how your breast tissue appears on a mammogram. Each woman’s breasts are a distinct mix of fatty and fibroglandular tissue. Dense breasts have more fibroglandular tissue, which appears white on a mammogram. Less dense breasts, on the other hand, have more fatty tissue, which appears black. Understanding breast density is important because it can impact how breast cancer is screened and detected. Dense breast tissue can mask potential cancers on a mammogram because both dense tissue and cancer appear white, creating a ‘white-out’ effect and making the detection of breast abnormalities challenging. While mammograms are highly accurate in women with fatty breasts, their accuracy drops tremendously – to as low as 30% – in women with the densest, category D breasts. Recognizing this limitation is crucial for early detection and treatment. Breast density, I should note, is pretty common. Research indicates that more than half of women in their 40s, and over a third of women in their 50s have dense breasts. But it’s not just the prevalence that makes this a significant issue. Women with the highest breast density are 4 to 6 times more likely to develop breast cancer. That’s a statistic we simply can’t ignore! After a mammogram is performed, images are interpreted by the reading radiologist. Using the Breast Imaging Reporting and Data System (BI-RADS) a category of density is assigned ranking from from A (almost entirely fatty) to D (extremely dense). This density rating, found in the radiology report, can then be used to tailor your breast health strategy better. In the Province of Ontario Canada where I live, as of July 2023, this information must be shared with women. In April 2023 the US FDA also ruled that American women must be advised of their breast density, a ruling that goes into effect in 2024.  Why this vital information was not mandated to be shared earlier is mystifying to me. But that’s an issue for a later blog.  Women with higher breast density (categories C and D) should receive additional screening methods, such as ultrasounds or if available, an MRI, due to the reduced efficacy of mammograms alone, but unfortunately this does not always occur. Further evidence that women need to have this information to advocate for themselves. . Still, the journey to being informed and proactive about breast health doesn’t stop at understanding breast density and its implications. Women must have access to this information and be advised of their breast density, and provided the option of supplemental screening. By gaining this key piece of information, and having a clearly articulated pathway forward, women can better understand their risk profile and advocate for themselves. Sadly, doctors are still not proactively acting on this information. The onus is still on women to use this information to demand action from their doctors to be given access to supplemental screening beyond mammography. This too baffles me. Can you imagine a family practitioner not acting on abnormal bloodwork or a finding of high cholesteral?  How is this different?  As an aside: If you know you have category C or D breast density and are receiving pushback from your doctor Dense Breasts Canada provides some scripts women can use in conversation with their doctors.  The goal is not to inspire fear, but to encourage awareness and informed action among women worldwide. Primarily, it’s about arming ourselves with knowledge – the knowledge of our own bodies, the understanding of our unique risks, and the power to ensure we’re receiving the best possible care. The stakes are simply too high to settle for less.  Further dialogue and advocacy are needed to ensure every woman worldwide  knows her breast density. As I said at the opening of this piece, it is a conversation that can save lives. And sadly, we still have a long way to go before every woman is armed with this knowledge.  As a final word, remember always that breast density is an important factor, but only one of many risk factors for breast cancer. To have a truly comprehensive understanding of your risk it is recommended women perform a self-evaluation to gain a sense of their risk. And always, know your normal, do your self-checks and remain always breast aware.  Below are some excellent and credible resources that are Ellyn recommended if you want to dive more deeply into this topic.  https://densebreast-info.org https://densebreastscanada.ca https://densebreast-info.org/europe https://www.cancer.org/cancer/types/breast-cancer/screening-tests-and-early-detection/mammograms/breast-density-and-your-mammogram-report.html https://www.breastcancer.org/risk/risk-factors/dense-breasts

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When it Comes to Breast Cancer Survival Rates is Five Years Enough? 

According to data from the Canadian Cancer Society and the American Cancer Society, the five-year breast cancer survival rate for women diagnosed with breast cancer is just around 90%. It means that of women diagnosed with breast cancer, 89% of us will be alive after five years. This “what is the probability of dying” question was certainly a rabbit hole I fell into when I was first diagnosed and learned the stage and type of my breast cancer. And I was told by my doctor, that if you make it to five years cancer-free, the risk of recurrence is small, and that is why you are typically transferred back to your family doctor and out of the care of an oncologist at that point. All good right?   But here’s where I get uncomfortable. I’m far from a researcher and a doctor and I may have it terribly wrong, but It feels like there is an assumption built into this five-year window that cancer is an older person’s disease. No research that I am aware of looks at survival beyond those five years, again, because it is assumed the risk of recurrence is so small.  That said, those of us who have experienced a diagnosis know that the fear of recurrence never goes away despite these reassurances. We all know people in our cancer community who have had that other shoe drop on them. We know people who are diagnosed with distant metastasis and who die of the disease. And those of us who carry on past five years are who are still on drugs experience side effects from treatment that can erode or impede our quality of life, and cause other conditions and diseases later.  Even though I feel like a youngster, I am 59, so not exactly a spring chicken. Five years of survival for me is still too little. I’ll just be 62. And I joke that I have a cruise booked for my 97th birthday, so I am hoping for a lot more time than that.  What is even more concerning is the women I know who are diagnosed at a young age. Recent research shows that the incidence of breast cancer among young women rising. I wrote about this topic here. Through the advocacy work I do these days, I have plenty of friends who are in their 40s, 30s and 20s who have experienced a breast cancer diagnosis. So, if you are a young mum of 32 diagnosed, are you ok with things going dark in terms of what survival looks like after five years?   In addition, the survival statistics that are gathered only deal with recurrence and distant metastasis leading to death. We all know in cancerland that things are not that black and white. We may not die of the disease, but it does impact our lives in many ways – physically, mentally, and emotionally. So what about that form of survivorship?   One of the projects that I am quite enthusiastic about comes from Breast Cancer Canada. The organization launched PROgress Tracker a knowledge-based research study that is collecting Patient Reported Outcomes (PRO) data through the use of questionnaires from diverse experiences of breast cancer participants from diagnosis, treatment and surveillance over time. It is a first-of-its-kind study, and the plan is to monitor Canadian women who have been diagnosed with breast cancer over a ten-year timeframe. Data will be collected into a database for researchers and clinicians to analyze large population responses and learn more about breast cancer issues and improvements from the patient’s perspective. The data collected goes well beyond the standard survivorship questions covering other aspects of well being including mental health, self-acceptance, personal relationships and so forth.  I’m participating in the study and just completed my third check-in survey (research check-ins are every three months). It is a commitment that I’ll answer these questions for ten years, but it takes just minutes to complete. I am happy to do. I created AskEllyn to provide emotional support to those who follow in my footsteps because I feel that the emotional aspects of this diagnosis are not well understood and the supports are lacking. This study is an important one and hopefully will do its part to inform and improve care in the future, while offering us all a better understanding of the timeline of survivorship. Breast Cancer Canada is still actively recruiting to the study. If you are a Canadian woman diagnosed, I encourage you to join and contribute.

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Victoria McGlone and DIEP Flap

My Journey to DIEP Flap

A guest post by Victoria McGlone One of the first things that crossed my mind as soon as I heard the dreaded four words “you have breast cancer” at the age of 37 was “I want a double mastectomy and I want these breasts removed from my body immediately.”  It’s interesting how different women in the cancer world feel very differently about their breasts at the time of diagnosis. For me, I wanted them gone the second I knew that one of them was trying to kill me. I had never heard of the term DIEP Flap, but I was soon to learn all about it. As it happened, I wasn’t a candidate for a lumpectomy. I could only feel my primary tumour at the time of my diagnosis (a 3cm large-sized lump sitting in my right breast), but upon further imaging from an MRI, it was confirmed there were four other smaller tumours sitting in each quadrant of my breast. That ruled out the possibility of a lumpectomy. When I learned that a single mastectomy was required, my first question for my surgeon was “can you take the other one as well?” Now onto the next part of the equation – reconstruction. At the same appointment when we agreed that I would have a double mastectomy, the next sentence was “let’s discuss reconstruction options.” Initially I had thought I would remain flat. As a fan of oversized, baggy clothes since I gave birth to my children, I hadn’t really thought about reconstruction as a priority. I mentioned to my surgeon that I was happy to stay flat and she seemed surprised. She proceeded to explain to me that due to my age, she feared I may regret that decision down the line. She highly encouraged me to consider reconstruction. In hindsight, one year later, I am so glad she did!  She then explained that there were two options… implants or natural tissue reconstruction using fat from my stomach. I had never even heard of this but I was intrigued.  For me, the idea of implants didn’t sit too well. I think they can look great on younger women who have slimmer bodies than me, however for my shape and frame, I was worried they were going to look too “fake.” I also wasn’t keen on the idea of replacing implants every 15-20 years, or having them potentially being rejected by my body. I asked more questions about the natural tissue option, and that was the first time I heard the term DIEP flap.  My surgeon explained that “if I was a candidate and had enough spare tissue on my stomach” (spoiler, I have birthed two children and my stomach was far from flat which would certainly make me a candidate), then this is a highly specialized, microscopic surgery, where they harvest living tissue from my stomach and essentially sew it up into my breast area. My first question was “will my stomach look flatter afterwards?” and my surgeon gently smiled and said, “Many women say the results feel like a mini tummy tuck.” With that I was sold! I won’t lie, the Diep flap surgery itself was big. It was complex, long and very hard on my body. Whilst I made light of the situation and was secretly excited for my new body, it was explained to me that the recovery from a Diep flap procedure would take months, not weeks, and the toll it would take on my body would be extreme. My surgeon tried to prepare me for it, but in reality, I don’t think I was fully prepared. The scar on my abdomen after surgery was 20 inches long and very sore. Not to mention I had both breasts reconstructed at the same time with scars and stitches. It felt like I had been hit by a bus! I was in hospital for five days after the procedure to ensure that the tissue they harvested (also known as the flap), had blood flow and had settled in its new location. The pain was strong. I was unable to sleep in my bed for several weeks and found that an armchair was the most comfortable. I had four drains that stayed in for a week after the procedure. They made it difficult to shower and get dressed. I tried not to complain, but secretly I asked myself “What have I done?” many times. I also suffered from necrosis of my breast tissue. That was tough to handle as it occurred a couple of weeks into my recovery.  Up to that point, I felt I was making good progress. Essentially the new tissue that they sewed up into my breasts had started to come apart at the incision. It meant I needed daily wound care for several weeks. Although the procedure didn’t hurt much (I didn’t have much feeling in my new breasts at the time, thankfully) the mental aspect of knowing my recovery had stalled and that I needed daily medical care again took its toll on me. I began thinking implants may have been the better option. All that to say….four months after surgery, my new breasts finally felt comfortable (and natural). My stomach is flatter than it ever was before I had children, and my new fake belly button makes me smile every time I look at it. When people ask whether I would recommend the DIEP flap procedure, I always say… “put it this way, it is not for the faint of heart. I am delighted I did it but I would never do it again!”  I also got a laugh out of looking in the mirror for the first time at the work of my plastic surgeon and realizing the old tattoo on my hip (a wise decision from my 19-year-old self) had disappeared. I guess it was on the part he removed from my stomach and overnight, it’s gone! I had to chuckle when I then looked at my breast area to see if it had been sewn up there… thankfully it hadn’t. Victoria McGlone is a sales leader and growth consultant, CEO and Founder of Three Cliffs, a Forty Under 40 Recipient, Author of the Children’s Book The Good Cancer, and a Breast Cancer Survivor.

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Better business person

Why Cancer Made Me A Better Business Person

I’ve been in business for 30+ years, a VP of Marketing and an entrepreneur for sixteen years at the helm of my own marketing communications firm, and a mentor to tech startups for the same length of time. I thought I understood what it takes to make it in business. That said, going through a breast cancer experience has made me a better business person.  Who knew? It turns out that all the skills you need to muster to get through cancer are equally valuable to be successful in your work life.  Here are just a handful of the characteristics that are highly valued in business and in entrepreneurship that also happen to be part of the tool kit for navigating cancer. Resilience When I first heard the words cancer, I was shocked, terrified and anxious. It was truly one of the worst times of my life. The four-week wait between hearing of my diagnosis and my biopsy were some of the worst in my life. I was numb. Panicked. Horribly anxious. I am typically a pretty resilient person but gosh, I felt it was escaping me. I had to learn new skills to get me through that time. I worked with a therapist. I learned deep breathing techniques. I practiced meditation and embraced gentle movement. I also exercised like mad, walking miles and doing shadowboxing to release the pent-up anxiety. I also advocated for myself, with my doctor who prescribed some anxiety medication (go figure I’ve been high-functioning anxious all my life – untreated), and went for regular massages.  Then, a few months later, shortly after starting chemotherapy I met with my doctor to hear the results of my full body CT and bone scan. The findings were worrying, they saw some spots on my liver and my lung and ordered an MRI on the liver to investigate. And yet, as awful as that sounds, and believe me I took a day to digest and feel sorry for myself, I quickly talked myself into a better head space, took a long, fast walk and faced this next hurdle head-on. Good news – it was nothing. The point is, that in the words of my daughter, “mum you are bouncing back faster and faster.” Resilience is a critical quality in business. It can help you rebound from obstacles and disappointments and manage stress. But to practice resilience in business you need to trust in yourself and others, engage in self-care, and deal with issues proactively. Sound familiar?  Self-acceptance I have always been a rather self-conscious woman. A little down on myself to be honest. Worried what others think of me. Never slender enough, or pretty enough or accomplished enough. Stupid self-talk. Then along came breast cancer and with it, took away every bit of female identity I “thought” was important. I lost my breasts, my hair, my eyelashes, my eyebrows. And yet, throughout the experience, I felt quite beautiful.  I learned to accept that there is tremendous beauty in bravery.  Self-acceptance as a business quality means that you have the maturity to recognize that you may not have all the answers — and that’s ok. You understand that life is a journey of learning and discovery. It allows you to move forward and engage with confidence. A self-accepting leader will openly admit they need the strengths and talent of others to succeed and know that the sum is greater than the individual parts.  Authenticity As I became more self-accepting, I also became more authentic. I love my body and its flaws. It’s far from perfect but I admire its strength and power. I am grateful for movement each day.  I am absolutely imperfect now with two large scars arcing across my chest. However I see them as badges of honor and show them off proudly (yes even to the world in People Magazine).  I don’t hide from the fact that I do not have breasts anymore. I wear clothing that clearly reveals that fact, and have leaned into it, buying backless dresses, plunging necklines, halters and items with spaghetti straps. When my hair grew in salt and pepper, I embraced it and my new chemo curls. I’ll never colour it again. And those who follow me on my Instagram account, FlatPlease, you’ll often see me posting from my bathrobe, curls askew, wearing zero makeup.  I used to say “I love you” to others a lot but never to myself. And now I authentically do. And once and a while, I say no. I’m here on this planet to enjoy each day, not to serve or please others, unless it pleases me as well. I’m true to myself.  Authentic business leaders are humble. They are driven by purpose and passion. They have and are connected to their values, and ensure that those values guide every decision. They recognize that perfection is something to strive for, but it is rarely the end state. They practice and express authentic gratitude and kindness toward others. They know that learning comes from failure, and openly and generously share their learnings with others.  Grit Boy, do you have to connect with grit when they tell you that you have cancer. No one volunteers to get cancer or to give up close to a year of their life to fighting a disease with surgery, chemotherapy and radiation. I remember vividly giving myself a pep talk every morning when I’d wake up feeling like I was in a daytime nightmare. I used to say “put your feet on the floor Ellyn and keep going. The only way around this is through it.”  I had to muster every ounce of grit to push down my fears, show up at appointments informed and ready to engage. I needed to have open scary conversations with others about their journey so I could better arm myself. I needed to hear bad news and worst-case scenarios shared me by my doctors and then, persist to find a way forward. I needed to train my body so it was the best possible condition to recover from surgery and to endure treatments. And even to this day, when my joints hurt and I feel like the Tin Man the morning, I still keep exercising and moving. Ok maybe I’m not engaging in jump back planks and burpees these days because my toes are creaky, but dammit I’m still slogging.  Grit in business allows entrepreneurs and founders to grind away at building a business and to realize their dreams. I see this all the time in the startup founders I mentor. It is a quality I greatly admire. They have a vivid picture of how the world should be and the problem they want to solve. Building a business from scratch, with huge headwinds and no money is really hard. You make huge sacrifices financially, personally to make it happen. But with focus, deep commitment and perseverance, it can happen. I’m taking every lesson about grit I learned from the founders I have coached and I am now putting it all into practice as I build out the AskEllyn brand and my new non-profit The Lyndall Project. Tenacity Cancer people are some of the toughest, most tenacious and most badass humans I know. They don’t do this by choice, but it takes guts to show up for doctors appointments, and chemotherapy sessions, fight through side effects and overcome the associated trauma that surrounds the whole ordeal. They not only have to motivate themselves, but they cheerlead for others around them. And every cancer patient I know has a clear goal – to get through this mess and get on with life.  Tenacity in business is characterized by all the same qualities. It is that ability to stick with something even if it hard or a project has gone off the rails. It is digging in to find answers to tough problems. It means sticking up for yourself and your ideas. And it means setting goals, achieving those goals, and then setting new ones.  Courage It is stating the obvious to say that it takes courage to get through a cancer diagnosis. As I’ve already said here, hearing and digesting the news, and submitting to procedures that are painful, traumatic and that have lingering side effects or cause permanent damage is hard. You need to consistently pull yourself up by the bootstraps because no one else can do it for you. It depends on the person. Some balk at the idea of being called brave. And its true, we aren’t brave. We didn’t choose this pathway. We’re scared pretty much shitless every step of the way. But we continue forward and we walk across the bed of fire because we have no other choice. That to me is courageous.  Courage in business means having the presence of mind and self-confidence to stand up for your rights and say no when something challenges your values. It means persevering when things get hard.  It allows people to set boundaries for themselves. Courage is about being vulnerable, admitting a weakness or a lack of knowledge and its about asking for help.  Purpose And finally, this brings me to purpose. I will assure you, I didn’t wake up from surgery thinking “let’s become an advocate and help others with cancer, Ellyn.” Hardly. But this cancer journey has led me to an unexpected place and pathway forward. I feel that the universe had its purpose and intention when it had cancer choose me. I feel more alive, and more purposeful now than I ever have. I can see the world I want to create for others with incredible clarity now and that is tremendously fulfilling.  Purpose in business is our mission, our why, our north star. It’s about finding meaning in what you do. It propels you forward. It allows you to connect with that grit and tenacity we talked about earlier and the courage to do the hard things. And it’s about making a difference in the world for yourself and for others.  When I was diagnosed, a friend of mine gifted me the book The Daily Stoic. Immediately the principal Amor Fati resonated with me. So much so, I bought a coin with the saying on it and carried it everywhere and to every appointment. It means love your fate.  Life is short, do the thing. And do it now. Because we don’t know what tomorrow holds. 

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When it comes to breast cancer screening guidelines – not all research is equal

Guest Post by Natalie Kwadrans As I sat at home this weekend, knowing the hearing at the Canadian House of Commons was starting today regarding the newly proposed Canadian Breast Cancer Screening Guidelines, I felt the need to tangibly highlight to others why I feel these guidelines fail women in this country. So, I did what any other bored de novo stage 4 breast cancer patient would do. I decided to read through and compare the Canadian Task Force on Preventative Health Care’s 2024 Proposed Breast Cancer Screening Guidelines scientific references to the newly revised US Task Force on Preventative Services’ 2024 Breast Cancer Screening Guidelines and its scientific bibliography. For background, the Canadian Task Force has resisted calls for change, with its draft recommendations holding firm that routine breast screening should not begin until age 50 in Canada. I was curious to dig deeper because the US felt there was enough new evidence to change their breast cancer screening guidelines to start at 40 instead of 50. Ten of the thirteen Canadian jurisdictions also felt the same, and changed their guidelines to begin screening at 40, with the exception of Alberta, which dropped their screening age to 45. So, what did the US and then of the thirteen Canadian jurisdictions know that the Canadian Task Force didn’t? I figured the answers would lie in the research they used to inform each Task Force’s recommendations. I was right. It was disheartening and downright maddening.  I created a spreadsheet to compare the sources each Task Force used and did a high-level analysis of the research simply by reviewing the titles. Therefore, it’s not a perfect analysis. I was trying to see what new research was being used by the Canadian Task Force. I was extremely disappointed and let down by the content, as what the Canadian Task Force used wasn’t reflective the scientific evidence that is currently available. And that lack of attention to recent research will, in my opinion, come at the expense of Canadian women’s lives. Based on this Twitter post from July 31, 2023, The Canadian Task Force preferred to ask “the masses” do the legwork for them. I’m not sure why the Federal Government paid $500,000 of tax payer money to expedite the guidelines. What I determined from my analysis is that 41% of the Task Force sources cited in the draft recommendtions included data from before the year 2000! The image in this blog shows a quick side-by-side comparison between the two Task Forces’ bibliography. It is clear that not all research is equal. After doing this analysis, three things stand out to me Do you want to see the two bibliographies for yourself? Here is a link to my spreadsheet, as well as a short video that explains my document. About the author Natalie Kwadrans has been an advocate for cancer patients since she was diagnosed with de novo, triple-positive breast cancer in 2019. She is a patient advocate with Dense Breasts Canada, a patient partner with the Canadian Society of Breast Imaging and a Terry Fox Ambassador and a Patient Representative for Marathon of Hope Cancer Centre’s Network (MOHCCN). Natalie completed a BSc, though she altered course to compete as a snowboard racer for Team Canada. She then pursued graduate-level studies in business and, over her two-decade long career, broke down cross-organizational silos to implement customer-centric strategies. She was a sessional Bachelor of Business (BBA) instructor at three universities and holds Project Management Professional, Certified Public Accountant and Certified Management Accountant designations. Halfway through her MSc from HEC Paris she was diagnosed with cancer. Her ongoing palliative treatments forced Natalie to quit her career and studies.

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patient

I am impatient about the word patient

Patient advocacy is a thing in cancer land y’all.  That said,I have some very strong opinions on one critical element; the use of the term patient itself.  William Osler (revered as one of the four founders of modern medicine) once preached “see the person, not the patient,” but not everyone in medicine or in the world of cancer research got the message. Patients for too long had been regarded as walking diseases and conditions to be examined, patched up and discharged. We were (and in some cases still are) a thing.  The concept of patient advocacy and engagement has matured over the last decade or so. Most pharmaceuticals now have heads of patient engagement, responsible for infusing the voice of the patient into research work and decision-making. There are consulting firms that specialize and advise healthcare providers, payers and manufacturers on best practices surrounding patient engagement and who rally the patient troops to render their opinions in an organized way. Patient advocates are invited to medical and research conferences, asked to sit on panels, judge, and even in some cases, submit posters.  In the spirit of cooperation, I will play this game. If it means moving the needle even a little bit I will happily do all the things outlined above. It is a good thing that providers, payers and manufacturers want to hear what we have to say, and I am especially enthusiastic if our input drives actual change for the better.  But here it is. I hate the use of the term patient. Here’s why.  I am a writer and a word nerd. As a good friend and colleague of mine likes to say, “Words create worlds.” So I like to dig into the definition and derivation of a word when I am trying to find the right fit and meaning. The English noun patient is derived from the Latin word patiens. By definition, it means “one who suffers.”  Now, certainly, those who are in active care for whatever – a car accident, a heart attack, or a cancer diagnosis – do their share of suffering. However, among the community of people openly share their experience, who have chosen to speak up and to do advocacy work, I see little suffering. Heck no. These people are quite the opposite. They are resilient, hard-working, persistent, active champions and motivated change makers.  I was a patient for 265 days from the time I was diagnosed with breast cancer through to the time when I finished radiation and banged the gong. I am occasionally a patient again when I return to hospital for a day for my oncology check-up and my Zometa infusion. Even today, post-treatment I only take two medications. I feel and I am healthy as a horse. The majority of my days I am Ellyn. I am not a patient. I am not suffering. Ok, maybe a bit after a day in high heels but that is another matter entirely.  I am not alone in my thinking by the way. Not everyone is comfortable with the use of the word patient — even for those individuals in active care. Here’s a piece that talks to that discomfort. Patient, by definition, also means able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious. Um, isn’t that the exact opposite of what we are doing as advocates?  Hence the other big problem I have with the word patient as a label for those who give their time and energy to do advocacy work. It creates a power imbalance. I was at a research conference recently. I was invited to attend in the capacity of a patient advocate. The executive director in his closing remarks paid tribute to myself and the other “patients” in the room by exclaiming in wonder “Who knew? Patients are smart people!”  I know it was expressed with the best of intentions and as an expression of gratitude. But seriously, good grief. One in two of us will get cancer in our lifetime. I am pretty sure smart people don’t get a hall pass. The power imbalance is already a very real thing in the doctor/patient relationship. You don’t typically dare to call your physician by their first name. I tried with my oncologist. Let’s just say it didn’t go over well. Women and individuals from traditional cultures feel this power imbalance even more acutely. We are conditioned in life to not challenge or question authority. Unfortunately, some doctors can and do take advantage of that power position.  The term “patient” applied to those who do advocacy work is not only a misnomer. I feel it maintains that us vs them power dynamic where those from the healthcare and research world are somehow superior to those who have been at some point a patient. It is as if we are weakened by the disease that picked us. Now, I will tell you it is quite the opposite. Cancer people are some of the toughest, most resilient, darkly funny badasses I know. We have picked ourselves off the floor after moments of tremendous despair, we jettison body parts to cut out and off disease (hi, boobless over here), we have nurses wearing hazmat suits inject poison into our veins, and we proudly go about our days rocking the bald.  I don’t know what the right word is for what I and others like me are doing. But I will say don’t settle. Don’t accept token gestures around patient advocacy. Don’t be forced into a mold someone else has built for you. Don’t allow others to put you on a lower rung. The healthcare system needs our unadulterated voices. They need to hear from health rebels who dare to say, “The way you are doing things is wrong. It doesn’t serve us.  They don’t need patients. They need impatient partners.   And by the way, we aren’t suffering and we sure as hell aren’t tolerant.

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