Perky or Just Dense? | Breast Density and Breast Cancer

January 22, 2015 ~ Jamie ~ Leave a comment

I really enjoyed attending the Society for Women’s Health Research meeting on mammography last fall. Since I’m still not old enough to really need a mammogram, I never spent much time worrying about one, or wondering what it would be like or what the results might be. Of course, women will always worry about the discomfort of the procedure. And then there is the anxiety of awaiting the results. My mom gets her mammogram done at a breast center where a radiologist reads the film while you get dressed and then discusses the results with you that day. If there are any follow up procedures (ultrasound, biopsy, additional mammogram images) they’re done before you leave. That is FABULOUS. And also super rare. Usually, you get a letter in the mail a week later, and it’s not always all that easy to interpret. Depending on your state, this letter might include details on your breast density, but it doesn’t tell you what breast density means to your health. Information without context. That seems useless and entirely unfair to me.

breast density mammos — Source: American Cancer Society

The above image shows what density looks like on a mammogram. While we think of younger women having denser (or at least perkier!) breasts, that’s only partially true. You are more likely to have dense breasts if you’re younger, but there are plenty of old women who have dense breast tissue. (Perky does not equal dense.) Breasts are made up of fatty tissue and the ducts and lobules that make milk– more ducts and lobules make a breast more dense. Normal fibrous tissue also contributes to breast density. Just like an x-ray shows bones through the skin because they are so much more dense than muscle, etc., a mammogram film shows a tumor as a white mass because the tumor is more dense than the surrounding tissue. In the fatty breast (medical term, no judgments here!) you could clearly discern the white mass of a tumor, right? But on the far right in the dense breast? How can you tell what’s dense tissue and what’s a dense tumor?

The problem with dense breasts is not only that a tumor is harder to see with traditional mammography. The other problem– women with dense breasts are (very slightly, don’t panic) more likely to develop breast cancer. So, more likely to get cancer which is harder to identify with traditional screening. Not so good. Women with dense breasts are often called back after traditional mammography for an ultrasound, which is an effective way, together with the mammogram, to discern tumor from normal, dense tissue. But as I learned at the Society for Women’s Health Research meeting, the use of 3-D mammography makes a huge difference to women with dense breasts. Not only does it reduce the recall rate for additional testing, it finds more cancers. If there is a tumor, it’s more likely to find it, but it’s not likely to send you for additional tests that you don’t need. Win-win.

So the take home message? Pay attention to that line on your mammography report. Don’t worry about it, but if you are in the “dense” category, consider the 3-D mammogram next year. And if your doctor recommends that you come back for an ultrasound after a traditional mammogram because your breasts are dense, don’t worry too much about that either, it’s not likely to be anything, but will be able to tell you for sure. Just don’t let the fact that traditional mammography isn’t as effective for women with dense breasts deter you from your annual mammogram. They really do save lives, whether you are perky or not so perky, dense or fatty.

My Ambivalence of Normalcy | “Normal” After Breast Cancer

January 15, 2015 ~ Jamie ~ 4 Comments

normal

After I was diagnosed with breast cancer, I can remember that maintaining normalcy, especially for my family, was one of my main concerns. I didn’t want to hide the fact that I had breast cancer, and I knew that things would be different for everyone. But, for the most part, I wanted things to feel normal for them. I wanted to help with homework, drive to gymnastics, play games, and do Girls on the Run. But I wanted things to be normal for me, too. Not to pretend that there was no cancer, but to give me some sense of control. I wanted to be stronger than the cancer, I wanted to be my normal self in spite of the breast cancer. That’s how this blog got its name– I was determined to keep things normal by going for a run and always putting on some lipstick, even if chemo was my next stop. It did take a lot of energy to be nothing more than normal, but it was energy that I wanted to expend.

But now I have a love/hate relationship with the word normal. Exactly six weeks after my mastectomy, I went out on my first run post-surgery. That night, I was standing in the kitchen, and I remember Clay congratulating me on my first run, and he asked, “So is everything back to normal now?” I bristled. Was I supposed to be the same as before? Was he just hoping that he was off dishwasher-unloading duty? Of course, I know his question had more to do with the relief that I was healthy and cancer free– free of treatments and their restrictions and side effects– than the dishwasher.

But back to normal? No. Of course, physically, I don’t have any more restrictions. I can reach what I want, lift what I want. I don’t take any medications. (More on that in a future post, if you’re curious.) But seatbelts still irritate me. My hair is growing out and driving. me. crazy. I have scars and tattoos. I have worries that no elementary school mom should have. So maybe a new normal, then? Lots of people love that phrase. I am not one of them, for the record. I guess technically I have a new set of things that are part of my “normal” everyday life. But to embrace the phrase new normal seems to acknowledge the fact that there’s no going back to the old normal, there’s no going back to that girl. The girl with long hair who blamed headaches on PMS. The girl who went for a run because she wanted to lose ten pounds and be healthier, not because she feels like she’s inviting a cancer recurrence with her couch potato ways. The girl who bemoaned having to wear her cute little balconette push-up bra. She’s gone, and sometimes it makes me sad.

Of course, there are a lot of good things about the word normal. In fact, when I enter the auspices of Virginia Hospital Center, I crave the word. My MRI? The PET scan? Normal. Blissfully normal. All my genes? Plain old vanilla normal. At support group? It is so reassuring to hear that what I’m feeling is completely normal. Normal is good. Normal is just, well, so normal.

And so I find myself walking a very fine line. Between loving and hating the word normal. But I continually strive spend more time considering the good, plain old vanilla type normal than mourning the old normal that is gone.

Genetic Testing for Breast Cancer | Beyond BRCA

January 12, 2015 ~ Jamie ~ 4 Comments

I mentioned before that early on, I went through genetic testing for BRCA1 and BRCA2. This genetic testing is only recommended for women with a strong family history of breast and ovarian cancer, and by those standards, I would not be a candidate. However, women with mutated BRCA genes do tend to develop breast cancer at a much earlier age, so my surgeon recommended I undergo testing. While Angelina Jolie has certainly raised awareness not only about the existence of BRCA genes but also the option of prophylactic surgery to reduce cancer risk, and Mary Claire King, who discovered that BRCA1 and BRCA2 mutations play a pivotal role in many families with hereditary breast and ovarian cancer has suggested universal testing for all women at age 30, I feel strongly that any genetic testing should be done only after a visit with a genetic counselor. (And, incidentally, I don’t agree with universal BRCA testing.)

Since my diagnosis, genetic testing has come a long way. Science and technology move so quickly, and only two years really does make a huge difference. I tested negative for BRCA mutations, and while that was a relief, it wasn’t a shock. But in my semi-annual check up with my oncologist this fall, she shared with me that there are more expanded gene panel screens available now that might be worth exploring.

I set up an appointment with the genetic counselor and gathered my family history. You need to be prepared for these meetings, the more information you have about your extended family, the better assessment the counselor can give. Not surprisingly, after a quick chat, she set to drawing this pedigree– I’m the black circle in the middle with the arrow. Anyone who had cancer got filled in black. A quick glance shows that there is a decent amount of cancer in my family, though several were in much older relatives and most were GI cancers. So while that doesn’t put me in the high risk category for hereditary breast and ovarian cancer, it does suggest that there may be a familial gene playing a part in the cancer incidence in my family.

The genetic counselor who I saw did a good job of communicating with me. Obviously, finding some sort of mutation would change nothing about my breast cancer, it had already been diagnosed and treated aggressively with a good outcome. A positive finding may indicate more screening for me– perhaps more colonoscopies, starting at an earlier age. It would also indicate genetic testing for my kids and my brother to see if they should undergo more frequent cancer screenings.

She also made sure that I understood that the findings. These types of screens give more than a mutation/ no mutation finding. Some mutations are clearly linked with familial cancer syndromes, but even those just indicate more frequent screenings– BRCA mutations lead many to opt for surgery to remove their breasts or ovaries, but most organs can’t just be removed to reduce a cancer risk. The testing could also reveal some mutations that aren’t linked with anything particular– so while the gene is technically mutated, the impact of that mutation wouldn’t be known. The third outcome would be the identification of a genetic variant. This would mean that my gene would not technically have the “normal” sequence, but it was one of a number of already identified sequences that while not identical to normal, presented as normal. And of course, there is always the possibility that a gene’s sequence could be identified as normal with no mutations or variations.

All of that is to say, the results of this genetic panel were likely to contain very little actionable data. But given the prevalence and variety of cancer in my family, I let them draw two tubes of blood to send off to GeneDx for the Comprehensive Cancer Panel. I doubted that it would give me any information that really made a difference for me or my family, but it’s better just to know, right? This panel sequences 29 genes whose mutation are known to carry some increased risk of cancer. Given my personal and family history of cancer, this test was covered by insurance, but I should point out that “covered” does not mean “free.” Sequencing that many genes is a big job, and so it’s a justifiably spendy test. What was left after my insurance paid was still not an insignificant amount, but most of the companies doing this sort of testing will work with patients to reduce their cost or set up a payment plan, so it’s worth asking.

I suppose I should insert the drum roll here… All twenty-nine of my genes were completely normal. No bad mutations, no poorly understood mutations, no interesting variants. Just plain old vanilla normal. Given that any other results could have had ramifications on others in my family, I am especially grateful. I’m so glad that my genetic counselor explained well the reasons behind testing and the meaning of all the possible outcomes. But mostly, I’m glad to have just one more medical professional tell me that everything looks normal.

Happy New Year!

January 5, 2015 ~ Jamie ~ 3 Comments

Ah, a new year. The gyms fill up, diet plan commercials fill the screen, and lists are made. I wanted a fancy pen for Christmas this year, and I was delighted by the inscription on the box– “she writes to-do lists for her to-do lists.” Yes, yes I do.

In all fairness, I don’t reserve my list-making for the new year. But I did find myself sitting down with a notebook any my pretty new pen to plan out the week. Of course, a kiddo whose birthday is the first week back complicates things, so my list is super long, filled with shopping trips, party planning, and baking, baking, baking. But this little old blog made the list in a couple of places, too. I hadn’t intended to take such a hiatus as the year wrapped up. Let me assure you, I am healthy. Just busy and worn out like any other mom out there.

So in true-to-myself form, on today’s list was to make another list. Post ideas for this spot. Several of the ideas on that list have been floating around in my head for a while. I’ve gotten a few questions lately, either in person or in the comments on a post, and that has left me thinking that I should have a series of post based on reader’s questions. While there are already a few in my queue, I’d love to know what you want to know. I’ve said it before, you can’t embarrass me with your questions, so ask away!

Happy new year to you all. I hope you enjoy settling into a routine after a break as much as I do. And stay tuned, because though I’m not much of the resolution making sort, I resolve to get back into a routine here on the blog, too.

Post Chemo Pixie Grow Out | Nineteen Months and Counting

October 27, 2014 ~ Jamie ~ Leave a comment

So we are now approaching nineteen months after my last chemo. I’ve just had another haircut, and Dragan warned me that I’m getting to a difficult stage. “But you’re doing a great job faking it,” he reassured me. We talked about the growing out process. He conceded that I could have just let it grow instead of coming to him faithfully every five or six weeks. That may have been a little quicker to shoulder length, but I know I’d have hated every minute of it. This way, I’ve had a lot of different hairstyles, but they’ve all looked intentional. Intentional. That one word makes a world of difference to me. As soon as it was long enough to get cut, I never again looked like a cancer patient growing out her hair, I looked like a woman who had chosen to have a short hair cut. (Of course, I only looked like I had made the choice, in reality, it had been made for me.) Dragan’s encouraged me to really play with my hair and see what I can do– see how I like it. The bottom two pics are my normal looks– more rock and roll on the left and smooth, tucked behind the ears weather girl style on the right. I tried out the rocker style last week when I was headed into Turner’s classroom, and upon my entry, he loudly exclaimed, “It looks like you have bed head!” Um, mommy’s trying something new, sweetie. Thanks for noticing.

I was chatting with a short-haired friend who lamented at how long my hair is getting– she really loved it short. I told her I was growing it out, mostly for my family. As we chatted, I had to admit that pre-cancer, I would have considered Clay’s opinion of my hair but would have likened letting the kids have a say in my hairstyle to letting them eat cookies for breakfast. Sure, sometimes they want something, but kids don’t always make the best decisions. I’m the adult. It’s really only because of the cancer that I’m making that concession. I want to be able to give them the “normal” they remember– the wife and mom with long flowing locks who didn’t have cancer. Of course, it will be years before I have those same long locks, and by then I’ll be over forty and probably due for the “I’m getting to old for this” chopping of the hair. But it wasn’t until this weekend that it dawned on me– I’ll grow it as long as I can, but the next time I end up with a pixie or a faux-hawk, it will be my choice– not a necessity brought on by cancer. And somehow, I think that small distinction will make all the difference.

We Heart a Great Fit | Nordstrom and the Young Survival Coalition

October 23, 2014 ~ Jamie ~ Leave a comment

nordstom ysc we heart a good fit

It’s no surprise to most of you that I’m quite a fan of Nordstrom. Their customer service, for one, is top notch, and that’s a big deal to me. I’ll never forget the time that the gentleman in the shoe section was tracking down a pair of shoes for me at another store since he didn’t have my size. It was taking a long time, so Sally and I wandered over to the lingerie section and were shopping there when he finally got it all taken care of. He came over and found me and placed my order right there, at the “unmentionables counter.” (bonus points if you can name the movie reference for that one.)

Needless to say, after my first trip to the unmentionables counter at Nordstrom, I was a convert, never to return to the land of Victoria and her secret. The women at Nordstrom know what they’re doing, and they will make sure to get you into a bra that fits you. This weekend, they are partnering with the Young Survival Coalition for a fitting event, and will donate a portion of the sale of certain brands (I can’t remember now, but there are several– it’s not like you have to buy that one outrageously pink bra if you want to be part of the event!) to the Young Survival Coalition, which addresses the unique needs of women who are diagnosed with breast cancer before the age of 35. (I was barely 35 at diagnosis, but apparently, I make the cut!)

I’m pleased to be a part of the campaign for a bit on Friday morning, and will be at the Nordstrom in Tyson’s Corner. I’ll talk to the staff there and probably stick around and answer any questions that they or any shoppers might have. I can see where having a pink-hued bra fitting event for breast cancer might seem like just another Pinkwashing kind of thing. But, I have learned that the “pink” opens some doors, and so it would be silly of me not to seize that teachable moment to encourage women to make smart health choices and have a better understanding of breast cancer.

So for the details: the event runs this Friday and Saturday, October 24-25. I’ll be at the Tyson’s Corner Nordstrom starting at 10am. Not sure how long I’ll be there, if you might stop by, let me know!

The DC Ladies Interview

October 13, 2014 ~ Jamie ~ Leave a comment

Do you read the DC Ladies? It’s a fun lifestyle blog for women, by women, in the DC area. I love their tagline: the most fabulous women in the most powerful city. So I feel just a little fabulous today to be featured on their site. It’s my first online interview, and I think they did a great job with it. Shelley’s questions pushed me to think about things in a different way, so even faithful readers here will probably learn something new, and it is such a privilege to share my story with a new group of readers. Check it out, and enjoy your holiday Monday!

Breast Cancer Awareness at the Pentagon | Recap #2

October 10, 2014 ~ Jamie ~ Leave a comment

After the morning’s fun un-run, I headed to the Pentagon Athletic Center with a big crew from the clinic to shower and get ready to face the day. I just love the camaraderie of a bunch of women getting ready together. There are no pretenses– everyone can complain about their hair as they blow it out, there’s always someone with an eyebrow pencil if you’ve forgotten yours… After a quick breakfast and a little break, we headed over to the Pentagon Conference Center where I gave my first talk of the day. Of course, getting my talk from the laptop (which is maybe the oldest laptop I’ve ever seen!) to the screen was a bit of a challenge. I think it took five of us to figure it out, and the conference center tech guy basically gave up and left us to our own devices before we figured it out. Somehow it wouldn’t be a power point presentation if there wasn’t a problem with the projector. (Those who know me well might know that I have a bit of a thing with fonts, so of course they were carefully chosen. And of course the super old computer didn’t have the same font set, so I ended up with a few things in a rather pirate-y font. Awesome. I’m sure I didn’t obsess over that and mention it in my talk at least four or five times.) Once we got it going and I got over the pirate font, it went well. The talk was open to anyone at the Pentagon, and I was privileged to have the senior staff from the clinic and the head of the Breast Care Center at Fort Belvoir and her chief nurse in the audience, too. It was a diverse audience, but I think I managed to keep everyone engaged, and there was a great discussion afterwards.

In the break before heading out to the courtyard, I had lunch with the ladies from the Breast Care Center at Fort Belvoir. It was so interesting to share perspectives on patient care, and it was a unique dynamic– since she wasn’t my breast surgeon, I enjoyed being able to talk to Dr. Williams as more of a colleague than in the normal doctor/patient relationship.

The courtyard event was fun, it was filled with people in pink who were eager to share their own stories. It was a privilege to speak with so many men and women.

And then I see this picture. That’s me, standing on the stage in the courtyard of the Pentagon, being introduced to the crowd by the director of the clinic. Craziness. I don’t get nervous, and feel like I’m taking it all in stride, but then sometimes I just realize– this is a big deal!

I gave a quick talk, a little about me and a little about how to reduce your risk of breast cancer where you can and the importance of regular screenings before encouraging everyone to join me for a walk or head out on the three mile run that we skipped that morning.

We encouraged everyone to walk for twenty minutes. You know, for their health. We’ll just not talk about the fact that each lap went through the designated smoking area. Little victories, you know? 😉

Oh, and did I forget to mention that I got a major award? OK, that might be overselling it a tad, but I did get a lovely framed certificate lauding my contribution the the Pentagon’s Second Annual Breast Cancer Awareness Campaign and a commander’s coin from COL Pina. Very cool. If I ever get a real job with a real office, you can be sure that bad boy is going on the wall!

DSC_0084 (3)

But really the best part of the day? I got to know some great people. The clinic staff were such lovely hosts and made me feel like a VIP and part of the crew at the same time. I spoke with several women who either were going through treatment for breast cancer or who had faced it in their past. We traded stories and bonded in a way that’s becoming so familiar to me. Karen tells me that she’s gotten great feedback since the event, and one of the women we talked to has even already stopped by the Fit to Win program at the clinic to start on a more proactive survivorship wellness plan.

It was such a privilege to get to be a part of a breast cancer awareness campaign that I truly felt made a difference. There was pink, yes, but I really feel like there was a conscious effort to embrace the teachable moment that the pink provided. I was able to share some proactive steps a woman can take to reduce her risk of breast cancer, and I was able to incorporate some of the recent data that mammograms are catching cancers earlier. But I was also able to use my time to remind everyone that there are no guarantees, and despite all the talk of risk reduction, early detection, and even my smile and healthy appearance, nearly 40,000 women will die of breast cancer this year. With so many healthy survivors, it can be easy to gloss over the fact that breast cancer is a serious disease. And while October, in all its pink glory, can get a bad reputation for ignoring the hard parts of breast cancer– the suffering through treatment, what it’s like to live with metastatic disease, the lives it claims– I felt like my October day at the Pentagon was well spent.

Thanks to Natalie at the clinic for the images of the day’s events.

Cancer Vixen | Breast Cancer Book Review

October 8, 2014 ~ Jamie ~ 1 Comment

cancer vixen

When I was diagnosed with breast cancer, several well meaning friends and family members gave me breast cancer books. They were such thoughtful gifts, and I really did appreciate each one. They were mostly the kind of books that had soft images of flowers on the front, they were probably really touching, inspirational, and encouraging. I’m not sure because I only read (most of) one of them. Somehow they didn’t scream “entertainment,” and that’s a pretty important component of any book that’s going to hold my attention long enough to finish it.

The day I had my head shaved, I first met the woman I consider my “cancer mentor.” She had finished treatment about six months before, and had tips, advice, and could commiserate over pretty much anything I wanted to discuss. She has a great sense of humor, so when she suggested a book, I was all in. Cancer Vixen didn’t disappoint. It’s hilarious, a little irreverent, and so very true. Any time a book has a magnification of little green cancer cells giving you the finger and mentions several new MAC lipstick shades I need to try, I think it’s a win. There were so many things to which I could relate. It’s like it’s the book I would have written. If I were an artist. A funny artist. A funny artist living a fabulous life in New York City.

I didn’t really want to read anything insightful, heartfelt, or inspiring. I wanted to commiserate with a funny friend who knew just what I was going through. Plus, anytime I can think of myself as some sort of super hero, and a vixen to boot, well, that’s a good thing.

Lessons Learned at North Parking | Breast Cancer Awareness at the Pentagon

October 5, 2014 ~ Jamie ~ Leave a comment

pentagon breast cancer awareness run lipstick chemo jamie holloway — Early morning PT, that’s the Pentagon behind the group to the left.

When I got a call the last week in August from my friend, Karen, she had just started as Nurse Educator with the Fit to Win program at the Pentagon health clinic, and she had just over a month to help put together a breast cancer awareness event. It has been a work in progress for most of the month, but I consider myself an easy going person, so I’m fine to go with the flow if the details change. (foreshadowing alert!) The whole day was a great experience, but I’m waiting on pictures from Natalie, the day’s official photographer, so we’ll start the recaps with the early morning fitness routine, since I managed to grab a quick photo of that.

The general premise of the day had always been perfect for me. I would join the clinic staff for their monthly RUN, head inside the Pentagon Athletic Center to shower and put on some LIPSTICK, and then give a couple of talks about breast cancer and CHEMO. Run, lipstick, chemo. Like the day was made for me.

After agreeing enthusiastically, I got a little nervous. I was intimidated to run with all those military types– I run, but I’m not fast. Karen reassured me, it’s just a three mile run to the Lincoln Memorial and back, and the first half they run all together at a 12 minute pace. I can do that. I was ready.

Imagine my surprise (shock, horror?) when the gentleman in charge of the o-dark thirty festivities, whose arms and legs resembled tree trunks, announced that we would not be running. Instead we would do something “fun.” Twenty minutes of army PT followed by fun relays. Gulp. I was a good sport, managed not to totally humiliate myself, and was, quite frankly, thankful for having had a mastectomy, which gave me an easy out from all the push ups. Man, they do a LOT of push ups. I decided to do sit ups instead to show that I was a “team player,” but did opt out of the bear crawl relay with a few others recovering from recent surgeries. It was fun, and I even learned a few things:

They do a LOT of push ups.
Sit ups on an asphalt parking lot hurt. If you position your spine along the parking space stripe, it’s not quite as uncomfortable.
Running short distance relays where you turn and go back (suicide style, at least that’s what we called it in middle school) works out a totally different group of muscles than “normal” running or body pump classes.
Doing upwards of 200 sit ups on an asphalt parking lot (even on the stripes) will leave you with bruises along your spine. You may wonder if you should blog this, not wanting any of the push uppers to make fun of you later. Secretly, though, you may consider your bruised spine a badge of honor.
Did I mention they do a LOT of push ups?
Being a VIP has its privileges– when they picked teams for the relays, I got picked first!
Most sets consist of ten of each exercise, and as they count off, after nine comes not ten, but one-zero.
Sometimes they do more than “one-zero,” in which case everyone (except the random civilian) knows to stop because of the tone of Mr. Tree Trunk’s voice. Said random civilian gets an extra workout by doing two extra jumping jacks before stopping like everyone else.

Intimidating as it seemed, I know that they were taking it easy on me. (I was a lot more sore from the body pump class full of ladies that I took earlier in the week!) But they didn’t act like they were taking it easy on me, they let me feel like I was totally hanging with them, and they had great team spirit– lots of cheering on those relays for everyone. They made me feel completely welcome and it was a pleasure spending the day with them. And stay tuned, there are more stories to tell!