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.
I think you all know by now that I’m all about setting little goals and milestones and celebrating them in ways big and small. Some celebrations require a little more forethought, and so I’ve come up with something to celebrate three years cancer free this spring. The picture is your hint, head on over to CURE Magazine to get the details!