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!
I know this probably isn’t news to those of you who follow me on Facebook and Twitter, but in case social media’s just not your thing, I thought I’d put an update here, too…
Monday my first post went live on the CURE Magazine’s online community! CURE Magazine is resource for cancer patients, survivors, and caregivers. You can pick up a copy in an oncologist’s office, and they offer free subscriptions if you fill out the included subscription card. I’m not in the print version (yet! One can always dream!) but they approached me a few weeks ago to contribute to the online community of writers, and I couldn’t be more thrilled. Being part of this publication means that people who truly understand my point of view or might benefit from my experiences will be the primary audience, and that’s huge! The piece that I wrote for them this week is a brand new piece– The Indignity of Breast Cancer. Though I’ve never been to New Orleans in March, it’s a little story about how I’ve earned more than 100 pair of Mardi Gras beads the good old fashioned way! (And why I’m totally ok with that.)
Wednesday I was featured on Scary Mommy, a collective blog that’s described as “A parenting website for imperfect parents” and “is intended for people who have a sense of humor, an appreciation for sarcasm, and wear panties that don’t easily get in a wad.” Sometimes irreverent but always funny, I enjoy reading so much of what they feature. They picked up my post from a couple weeks ago– “Ten Things Breast Cancer Taught Me” and republished it this week with a really cheesy stock photo of ladies wearing pink shirts. But still, they published it! Though they may not be my target cancer-y audience, they have a huge readership, so being featured on their site was super cool!
I’ve posted links on the right– the blue CURE Magazine logo will take you to my community page, so as I post more there, it should link to a list of all my articles there. And even though there’s just one Scary Mommy post, I’ll probably leave their signature crown up forever because it’s so cool! If you haven’t read them already, check them out!
It’s been a while since we had a hair post, no? Since it’s been three years this week since my diagnosis, I thought it might be fun to see how my hair has changed each October…
October 2012: That’s how my hair looked when I was diagnosed. Gorgeous, right? I know they were all just being nice, but at one point I thought I was going to cause physical harm to the super sweet nurse who must have been the twelfth medical professional that week to tell me that my hair was beautiful. It was all I could do not to remind them that I was there because I had been diagnosed with breast cancer. I mean, they all got that it was about to fall out, right?
October, 2013: Just six months of growth after chemo and it was so dark and stylish! Instead of words like beautiful, people now told me that I looked strong and fierce. Man, I loved that hair, and I loved being strong and fierce! It’s funny how people assume things about your personality because of the way you choose to wear your hair. (And I loved feeling like I could pull off such dark lipstick–that Nars 413BLKR, was a go to back then!)
October 2014: I snapped this before heading off to a conference on 3D mammography. That was admittedly the start of a rough hair year. I had to fight the weather girl vibe on a daily basis and eventually went to a flat-ironed spiky look most days to avoid the over rounded coif that my hair apparently prefers.
October 2015: The light at the end of the tunnel! I’m pretty sure I had my hair like this once on purpose! It’s still a little short to get into a ponytail without too many little clips holding in stray pieces, but it’s pretty much a normal hairstyle for me now. I don’t hate it every minute of the day, and that’s major progress. It’s lightened up, too, thanks to time spent outside with the kiddos and my running buddies.
I guess I have to count it a win that I was happy with my hair in three out of four pictures… I’m on my way back to the first ‘do. If I ever make it, please don’t tell me that it’s “so 2012.” I think my family would still love for me to get back to the old pre-cancer me for a while, and I’m finally close enough that it seems possible. I just hope they don’t totally revolt when I decide I’ve had enough of the blow outs and curling iron and chop it all off for the 2013 look. But who am I kidding? At that point, they can revolt if they want. Because the next time a huge pile of my hair ends up on the floor, it will be by my choosing, and I think I’ve earned the right to pick my own hairstyle!
Three years ago, I went from being a scientist and stay at home mom to a breast cancer patient in what seemed like a heartbeat. Chemo and a double mastectomy with reconstruction have taught me a few things that doctors never could. If I could go back three years, this is what I’d tell newly-diagnosed me…
You will get over your modesty very quickly. I’ve never been part of a flash mob, but I’ve definitely flashed enough people to constitute a mob! Best estimates are that I’ve flashed well over 100 people since I was diagnosed. (Yes, I counted.) My body went through so many changes during my treatment for me to share with professionals and curious friends alike. There was the port– the weird alien-like device implanted under my skin to deliver my chemo meds, my mastectomy scars and drains, final implants and even my first tattoos— trompe l’oeil nipples!
You will be in awe of how much you are loved. Your family, close friends, friends you haven’t seen in years, people you don’t even know will rally to support you in ways you could never imagine. They’ll bring you meals and watch your kids.You’ll return home to find cupcakes and magazines with thoughtful notes on your doorstep. Your days will be filled with coffee dates, and your friends will fight for the opportunity to join you at a four hour chemo appointment. Your out of state mom will send you a fabulous pair of flats to wear to chemo because she knows your love language is shoes. You will be overwhelmed with gratitude.
You will see breast cancer everywhere you look. Remember when you were pregnant and it seemed like every woman you saw was pregnant, too? Especially if you share my extreme misfortune and are diagnosed in October amidst breast cancer awareness month, you will see pink ribbons everywhere. At the grocery store, they’ll ask if you want to round up to donate for breast cancer. You will fight the urge to tell them that you gave at the office. Or that you’re giving two breasts and a full head of hair. You’ll keep your forty-two cents, thank you very much. Instead, you’ll probably just smile and say, “Thanks, not today.”
You will learn that immediate reconstruction is not immediate. I remember thinking how great it was that surgeons could completely reconstruct a woman’s breasts at the time of a mastectomy. I didn’t realize that “immediate reconstruction” actually means “starts at time of mastectomy and finishes with at least one more surgery sometime in the next year or so.”
You will become obsessed with other women’s breasts. Once you’ve had a breast surgery or two, you kind of forget what normal breasts look like. What you see in the mirror is not necessarily bad, in fact it may be great. But it’s not normal. You will begin to examine other women to see how your breasts compare to theirs. (You will hope they don’t notice this.)
You will talk about things like drains, mouth sores and nipple tattoos all the time and in the strangest places. Like new moms form an instant bond discussing the trials and triumphs of new motherhood, you have an immediate connection with anyone who’s been through a breast cancer diagnosis. You will also have these chats with everyone from your neighbor to your dental hygienist to an elderly stranger at Starbucks, because when you’re bald, these kind of things just come up.
You’ll wish you had more pictures. No, really. Nothing reminds you of how far you’ve come than seeing where you started and where you’ve been. Plus, pictures smiling with your kiddos, spouse, or friends are a great reminder of how much you’re loved.
You will find that you didn’t realize how important breasts really are, even if you’re done using them to feed babies. Your surgeon will tell you early on that you won’t have any sensation and you will nod, thinking of nothing but getting rid of the cancer. You won’t realize the significance of losing sensation. Not so bad not to feel the needles of the tattoo artist recreating your nipple. Sometimes devastating not to feel the gentle touch of a husband’s hand or a child’s nuzzle.
You won’t need to wear a bra! You may think you will anyway, but since it’s tough to find one that fits, you will likely get used to going braless pretty quickly. Your BFF will probably insist that you try on every strapless and backless top that you see when you’re shopping “because you can.” (And you will totally rock them!)
You may never again have “just a headache.” Every little ache and pain will make you think your cancer is back. Hip pain? Cancer. Menstrual cycle two days short? Cancer. Forehead pimple? Obviously cancer. BUT, you will get used to it. You will be surprised when you go an entire day without thinking about cancer, or when you forget to mention to a new doctor that your nipples aren’t real. Yes, you will be different, but you will get used to the person that you are.
The most sobering thing I learned is that roughly 30% of women diagnosed with early stage breast cancer will develop a recurrence– metastatic disease– that will ultimately claim their lives. While women with breast cancer are living longer and stronger, 108 women still die of breast cancer EVERY. SINGLE. DAY. The patient in me wants you to understand the personal side of the disease, but the scientist in me wants you to know that women with metastatic disease are depending on the breakthroughs that medical research provides to keep their lives from being cut tragically short.