I was introduced to a new cancer friend last week– a friend of a friend of a few different friends of mine. They all pointed her towards me because she, too, has triple negative breast cancer, and she had some more specific questions about treatment of TNBC. She had consults set up with a few different oncologists and a pretty thorough list of questions to ask them. She asked me about my treatment and what she might expect when she talked to doctors.
Of course, I told her what I’ve said thousands of time– I’m not a doctor. But I told her about the treatments that I’d had– dose dense AC followed by T. It was standard of care at the time, and it gave me the best results that one could expect– a pathological complete response (pCR). They knew where the cancer was before I was treated, and when I had surgery, the pathologist couldn’t find any cancer cells left. They were all dead. There is still debate whether pCR is a good surrogate for overall survival (OS)– whether having a pCR means anything about whether the cancer will come back and how long you will live– but it’s still taken as a good sign.
As I wrote to my new friend, I told her she might ask about the addition of a platinum to her chemo regimen. Since I’ve finished chemo, studies have been published revealing that more patients have a pCR if they receive a platinum in addition to ddAC-T, so I’d want that if I were her. I have another TNBC friend who didn’t have a pCR, so she is now on capecitabine (Xeloda) as a sort of preventative agent against a potential recurrence, so that might be a consideration for my new friend, too.
Let’s be clear, even without a platinum, I had a pCR, which is what those studies were going after anyway. And with a pCR, there was no reason for me to have any further treatment with potentially undesirable short term side effects and even more concerning, potential long term side effects. Yet I was left sitting there with a terrible case of #FOMO. Fear Of Missing Out. In the 3+ years since my diagnosis, there are different treatments. We all want the latest iPhone, the newest features on a car, and to eat at the hot, new restaurant. So of course, I want the best, newest cancer treatment. As awful as more chemo is (infusion or oral), part of me wants more. The evidence based part of me knows that I’ve done everything that has been demonstrated to be beneficial to me, and 3+ years out, I have a pretty good prognosis. But thinking about the way my treatment would be different today leaves me with some serious #cancerFOMO. Maybe it’s because I worry that one more thing might be all that’s standing between me and the gold standard of all clinical trials: OS. Overall survival is really what I’m after, because regardless what I think about cancer treatments, I know that I have major #lifeFOMO. I don’t want to miss a second.
As a scientist, publications are everything. Whoever coined the phrase “publish or perish” was not joking. Publishing a first author paper was a requirement of my graduate program, and once you get on the career path in academia, publishing papers is the way to get a grant which is the way to get tenure, which is the way to keep your job. Publications are everything.
(A little background on the publication process: In science, the order of authorship is very important, but this convention is different in other disciplines. The first author is the one who did all the work, or at least most of it, and did the bulk of the writing. That’s who really gets the credit for the publication. The other names are listed in decreasing level of contribution until the last author. The last name is the senior author– usually the one in whose lab the work was done. Scientific publications are peer reviewed, meaning experts in the field are asked to review the paper, give feedback, and decide if the study is worth of publication.)
I got the required publication in graduate school, and I quickly accepted that my days as a published author were over when I decided to leave the lab after my defense. Of course, after my cancer diagnosis, I began writing, though few things were actually “published,” at lease anywhere besides my own blog! And it turns out that self-publishing is a lot less stringent than the peer review process…
But a few weeks ago, I got to add a new line to the “peer reviewed publications” section of my CV! The FDA approves drugs for specific indications, but leaves it to oncologists to decide exactly how they are used in practice. The American Society of Clinical Oncologists (ASCO) publishes clinical guidelines for practice that inform oncologists the best practices and protocols for the treatment of cancer. I was the patient representative on one of these panels where we were reviewing the guidelines that a Canadian group had just released on the best ways to treat early breast cancer patients after their surgery. (Adjuvant therapy is the treatment that follows surgery.) You don’t have to read it– it gets a little heavy, it was meant to be read by oncologists, after all– but I was honored to be included to represent the patient voice as the oncologists in the group discussed the evidence for the best ways to treat breast cancer patients. It was a pretty straightforward discussion since the Canadian group had just reviewed all the pertinent literature. We discussed recent findings and minor clinical differences between the US and Canada, and my comments and opinions were well regarded, even solicited.
Being a part of such a prestigious group is a distinct honor. As a patient advocate, representing the patient voice in such an important forum is a responsibility I don’t take lightly. But as a scientist, having another peer reviewed publication is super cool. I mean, I’m one step closer to tenure! ::fighting the urge to insert winky-face emoji here!::
If you want to check out the publication, start with the abstract. The full text is a little heavier, but available here.
I definitely enjoyed being back on campus at the University of Illinois, seeing all the familiar sites and eating Papa Del’s pizza, reliving my glory days! But of course, that wasn’t the reason for the trip. Zeynep and Erik Nelson are undertaking the task of starting a research advocacy group as part of the Cancer Community @ Illinois, and I was thrilled not only with their enthusiasm, but with the support they are getting from director of the Cancer Community, Rohit Bhargava. It was a pleasure to spend time with them, learning about their hopes for the new Cancer Community that will be a part of the new medical school on the UIUC campus.
They had a full trip planned for me, starting with an informal graduate student and post doc seminar where I talked a little about myself and what I do as a research advocate. Mostly, though, they asked questions. Most of them weren’t familiar with the concept of research advocacy, and so they had lots of questions about how they could incorporate the perspective a research advocate into their projects.
Probably the best exercise for me was the talk that I gave after lunch to a group of faculty. When Zeynep said that she’d like me to give a 40-45 minute talk, I initially panicked, not sure what I would have to say to fill that much time! Yet I took a deep breath, did my wonderwoman pose, and started planning a talk. I figured once I had it planned, I could bulk it up to fill the time. And yet, when I was done, I found that it was actually a few minutes too long! So I made it a little more concise and smooth and finished it in 42 minutes– perfect. Part of what made me a little apprehensive, though, was not so much the length– I can always find something to talk about! I’ve given a lot of thought to what a research advocate should do and why an investigator should include them as part of the team, but planning this talk forced me to really organize my thoughts into a concise delivery. Before I had even realized it, I had a polished presentation explaining what a research advocate does, what we don’t do (just as important!), where to find a research advocate, and how to work together as part of a mutually beneficial team. I also got to spend time with some of the key stakeholders in what will become the new Cancer Research Advocacy Group, and sat in on a graduate level class. Zeynep asked her students to explain their research in a way that would be understandable to an advocate– training that few scientists ever receive! They did great, and I enjoyed the discussions that resulted after their presentations.
It was such a fun trip on so many levels. But most of all, it was such a privilege to be involved in the earliest stages of the formation of a group that I think will be such an asset to the research community in a place that is so near and dear to my heart. I can’t wait to see what kinds of ideas will result from the collaboration of biologists, research advocates, and the brilliant engineering minds for which the University of Illinois is known.
I just got back from the coolest trip. I met Zeynep Madak-Erdogan on twitter a year or so ago (thank you #bcsm!), and when I saw that she was a breast cancer researcher at the University of Illinois, we quickly bonded as I told her about my time there. In the months since, she has asked me to work with her on a few different projects, and she even invited me to come to campus as the Cancer Community @ Illinois starts a new cancer research advocacy group!
I’m going to get some of the “official photos” soon and I’ll share a little of the more science-y stuff I did there, but until then, the fun stuff! Zeynep and the rest of the cancer working group set up a great itinerary for me, but she was sure to ask if I wanted her to arrange any specific meetings. My only request was dinner at Papa Del’s, which apparently made me one of the cooler campus visitors and showed my UIUCroots to anyone who hadn’t already heard I was an alum. We drove around campus, and seeing the buildup of research park on the south farms where there used to be nothing but sheep was probably the biggest change. Fortunately (or unfortunately?) there are still some farms on the other side of First Street, so I immediately recognized the familiar smell of spring on the South Farms.
My other request was a slightly later start on the second day so that I could get in a run to visit some of my old haunts. Of course, as a student, I wasn’t a runner, so roller blading or taking the Red bus would have been more accurately nostalgic way to get around campus, but I enjoyed taking my new habit to my old stomping grounds.
Of course I had to snap a quick picture with the Alma Mater and on the Quad, which like the Union and much of campus, were as I remembered them. (My apologies if this one is upside down. WordPress and I can not agree on how to make it right side up on all devices. Agh!) At one point, we were noticing all the new hipster food trucks near the Beckman Institute and I commented that the only food truck in my day was the weird smelling silver truck outside Noyes Lab. When we walked past that spot moments later, Derald’s Catering Truck was still there, as if it had never moved, save to get a snazzy new paint job on one side!)
This is the entrance to one of the new buildings on campus– the Carl Woese Institute of Genomic Biology. Besides the cutting edge science that goes on inside the building, the art of science is prominently featured throughout the building with temporary themed exhibits. These three sculptures outside the building show tRNA at three different stages.
Green Street looked different, too, with many high rise buildings towering up over the familiar streetfront stores and restaurants. But IGB is probably one of the shortest new buildings on campus, built only a few stories high because of its proximity to the Morrow Plots– the oldest continuously planted experimental cornfield in the United States. And as all my fellow Illini friends know, you can’t throw shade on the corn! (OK, it’s a long video, but gives you the whole story of the Morrow Plots and why the Undergrad Library is underground. The song starts at around 8:30.)
I had a great visit and especially enjoyed my run down memory lane. Stay tuned for some pictures of me dressed like a grown up and being all professional and everything to find out why I was actually there!
I know it’s a little overdue, but I thought I should show you how I spent at least the first few hours of my NED-iversary. Since Emma Clare had to be in Leesburg super early for a gymnastics competition, as soon as I fixed her hair, I kissed everyone goodbye and headed to take the metro downtown. It was a great day for running, and I was expecting lots of music and mayehm along the course. The Rock ‘n Roll series didn’t disappoint– bands most every mile and lots of people cheering, some from their stoops while drinking their (morning) beer! Besides all the water stops, there were plenty of people handing out water, champagne, beer, and even barbecue! But what really distinguished this half from the Nike half I did two years ago was the hills. Oh, the hills. The Nike course was so flat that the slight, barely distinguishable incline was the only “hill” I can remember. This course, on the other hand, had not only a steep hill that was over a half mile long, but lots of other decent hills, too. And of course, that one just before the finish. Awesome. But I ran this one without having to give myself any pep talks, and even made it up all those wretched hills, finishing two minutes faster than the last (much flatter!) half, so we’ll count that a win!
I even got my first real medal! I love the Tiffany necklace I earned at the last race, but there is something pretty cool about a big, heavy medal!
Not to be outdone, the rest of my family had a pretty good weekend, too! Emma Clare came home with four medals from her gymnastics competition, Turner finished out the basketball season with a celebratory medal, and Clay earned a special achievement medal at work on Friday! What a wonderful weekend for our family.
According to the website, as I sit and type, there are just over 4 days and 9 hours until the Rock and Roll Half Marathon for which I am registered. I can hardly believe it was six whole months ago that the idea to run this race was hatched as I ran with a friend through the district on a lovely, warm Columbus Day. As we talked it out, I went from a little ambivalent about the prospects to downright convinced that I should register for this race. Held on March 12, the race is just one day short of marking three years since I had my bilateral mastectomy. Though technically, the chemo had already killed the cancer in my breast, we didn’t know for sure, so that is the day that I officially consider myself to be cancer-free. Now here’s a little cancer speak technicality for you. People really “in the know” don’t like the phrase cancer free. Because really, you can never know. If you would have given me a form to fill out on September 15, 2012 and asked me to describe myself as either a cancer patient or cancer free, of course I’d have picked the latter. In fact, that wouldn’t have been accurate, I just didn’t know.
So in the cancer world, my status is technically NED for three years– No Evidence of Disease. There’s probably no cancer there, but we don’t know for sure– it could just be too small to detect. But as far as we can tell, there is no evidence of cancer. Which makes March 13 my NED-iversary. Catchy.
That’s all background for the question I have to pose. Back in October, I was stopped in my tracks by the option to personalize my bib. The only thing that fit in the character limitations that marked such a celebration was “cancer free.” But even without the hangup of cancer free vs. NED, I didn’t have the confidence to put that on a bib I wouldn’t be wearing for another six months. A lot can happen in six months. But nothing happened! I’m still just as NED as I was in October. Back then, I decided not to personalize it, leaving myself the option for a custom job with a Sharpie on race day. So, friends, help a girl out. What should my bib say? I’m leaning toward (NED)3, but knowing that people sometimes cheer for you based on the name on your bib, I’m not sure I want to be known as Ned. Makes me think of Ned Flanders, and then words like okely-dokely start popping in my head… Comment here or on Facebook, all reasonable (family friendly!) options will be considered! And the countdown is on– 4 days, 9 hours, one minute…
I won’t rewrite the whole post here, but be sure to check out my new post on the Cure Community page. It’s a little bit about running, but a lot about the realities of being a mom with cancer, all inspired by the Melissa Etheridge song, I Run for Life, which randomly popped up on a Spotify playlist a few years ago. (Kleenex alert: Mom, you might want to skip this one. You know, the realities of having a child with cancer and all…)
Well, isn’t that cool. It seems like I’ve had a lot of surreal experiences lately– and I’m still new enough at all this to think it’s pretty cool. That’s my face on the home page for the Army CDMRP— Congressionally Directed Medical Research Programs. It feels like kind of a big deal to me! (Of course, I’ve been a bit of a slacker, or rather I’ve been totally overrun by my kids’ activities, so I’m now the fifth slide to load on the page. Be patient if you want to check it out!)
I’ve talked about the DOD Breast Cancer Research Program before, it’s a congressionally funded research program that is administrated by the army, the army is NOT using their budget to fund breast cancer research. This program is very forward thinking both in the design of the awards, which are created to fund high risk/high reward projects and early career investigators, and in the inclusion of “consumers” (patient advocates!) on the peer review panel.
I was asked to share my story as both an awardee and now a consumer reviewer for the BCRP. I won’t rewrite it here, but suffice it to say, I was honored to be asked. As a first time consumer reviewer, I had worried that the scientists on the panel might not value my input, but have always been impressed by the way the scientists give value to our comments and help us understand the tricky, science-y parts of the applications. I can’t say enough good things about this program, please head over and read my consumer story!
Last fall when I sent the kids back to school, I took a little time to jump into the mammogram debate. A paper had just come out in the journal Cancer indicating that looking at a preponderance of data with the proper statistical analysis showed that mammograms do, in fact save lives. Worth reading if you’re new to RLC or just don’t remember, like me. I re-read it in preparation for writing this post. Loved the prophetic foreshadowing near the end: Somehow, I doubt this will be the last word in the great mammogram debate.
Not the last word, indeed. Just over a year later, the Journal of the American Medical Association published a new paper on mammograms, leading the American Cancer Society (who publishes the journal, Cancer, referenced in that last post, by the way) to change their recommendations for mammography. For a quick and easy overview, JAMA made this video. It is definitely worth the four and a half minutes it takes to watch it, and be sure to watch it with the narration, too.
This debate is a tough one, and I feel like everyone and their brother has already weighed in. The JAMA piece points out that the decision of who gets mammograms and how often involves the delicate balancing of benefits and harms, not unlike most medical diagnostics and treatments. They boiled down the significant potential harms to two categories: anxiety of false positives and overdiagnosis/overtreatment.
The Washington Post published an excellent opinion piece on the first issue. The title read simply: Don’t worry your pretty little head about breast cancer. That pretty much says it all– Marissa Bellack eloquently and with historical references pointed out the fallacy that has existed throughout time that women are too fragile to handle such anxiety and would somehow be better off not knowing about an actual life threatening diagnosis if it meant avoiding the anxiety of awaiting results that might come back with no evidence of cancer. The “don’t worry your pretty little head” line is perfect, exposing the ridiculous notion that avoiding worry is a valid reason to forgo screening that has been demonstrated to prolong life.
The second issue, overtreatment and overdiagnosis, is the only real consideration in my mind. It is the notion that mammography is so good that it finds tumors that are so slow growing and indolent that they would never spread to threaten the woman’s life. This is not a failure on the part of mammograms, rather, it is a failure on the part of research. Increasing research is focused on distinguishing which tumors will be the aggressive, progressive, life threatening tumors, and which would stay tiny and live happily contained to a woman’s breast until she dies of something else as a very old lady. The ACS conclusion is that biennial (every two years) screening after 55 will combat this problem, so that mammograms will note the difference in the fast growing tumors. Even though this recommendation is supported by data, it makes me pretty nervous. This is a place where I think bench and clinical research are going to need to step up, research is going to be our only way to really conquer the problem of overtreatment in early cancer or even pre-cancerous breast lesions like DCIS.
So what to do, my friends? To all my young friends who have asked, I refer you to my reflections from the Society of Women’s Health Research Meeting I attended where I learned so much about 3D mammography. I don’t disagree with the data presented by the JAMA paper (or the data collected by the USPTF, which doesn’t recommend mammography until age 50) that show little benefit in the youngest population of currently screened women. They have amassed and evaluated a huge collection of data to reach these conclusions. BUT this huge collection of data obviously took a lot of time to collect, which means that it is made up almost entirely of patients receiving traditional mammograms (and many of them even the old school film variety, at that). What I learned at the SWHR meeting taught me that 3D mammograms do a much better job of finding tumors often missed by traditional mammography in women with dense breasts, which are more likely to be found in younger women. I think once there is a large data cohort of young women analyzed exclusively with 3D mammography, we will find benefit in screening that population as well. Incidentally, 3D mammography also reduced the call backs for additional diagnostics, thus reducing all the worry form those ladies’ pretty little heads about something that ends up not being cancer. So, young friends, I say pay your fifty bucks and keep on getting your 3D mammograms.
Yes, I think looking at the data is a good idea. But one must realize that the limitations of the data (not looking at 3D mammos in young women) and realizing that overly paternalistic (don’t worry your pretty little head) conclusions can not only lead to significant confusion, but also to the missed diagnosis of significant disease. Yes, I’ve had young friends– at least two just this month– who have gone through the stress of a false positive from a routine mammogram. But I also have young friends who are alive to raise their children because an aggressive tumor was treated after discovery on a routine mammogram. Anxiety while awaiting the results of what turns out to be nothing sucks. Know what sucks worse? Dying too young of something that could have been treated if anyone knew it was there in time.
*I forgot to even mention the clinical exam guideline. That got dropped from most recommendations a while ago because there was not clinical evidence to show its benefit. That said, I think most docs are still going to do it at your annual OB/GYN exam because they keep talking about the other stuff they’re supposed to cover while they’re doing it. I don’t consider it to be a big issue, except perhaps a sad commentary on the fact that doctors have so little time for patients that they can’t spend the extra 30 seconds on that kind of exam…
So apparently my sweet girl and some of her friends decided that they would all wear pink today. Because breast cancer.
Probably everyone reading this knows I’m not much into pink for the sake of pink. Another thing I’m not into? Crushing the good intentions of an eleven year old with my anti-pinkwashing angst.
And so (I hope) I made the best of the situation and explained awareness without action is a little empty once everyone is already aware. Since middle schoolers don’t need to head out for an annual mammogram, we decided to look for something that middle schoolers could do. We brainstormed some ideas of things kids could do if they knew someone with breast cancer or if a friend’s mom had breast cancer. We talked about it Wednesday, but then I didn’t prompt at all when she was making the poster last night. Things like “bring them dinner,” “watch their kids” and “talk about things you would normally talk about” were on her list of how to be a good friend in a tough time. Part of me hated helping her make that giant pink ribbon. But if I learned one thing last October, it’s that the pink is already there, I might as well make it work. So today, bedecked in the fluffy pink skirt that I made for her years ago along with pink leggings and pink fringe boots, she shared a poster with her homeroom class to help them understand how to help a friend whose family has been affected by cancer. And I couldn’t be prouder.