ASCO Clinical Guidelines | Patient Perspective on Breast Cancer Treatment

asco paper

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.

My Ambivalence of Normalcy | “Normal” After Breast Cancer


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.

Make New Friends or Just Keep the Old? | Breast Cancer Support Groups

After I was diagnosed with breast cancer, I had a huge stack of papers and pamphlets: places to go, options to consider.  My oncologist, in particular, encouraged me to join some sort of support group.  There was one that fit me perfectly– breast cancer patients with young kids, of course the pamphlet was printed on pink paper.  In retrospect, I’m not really sure why I went.  I didn’t feel like I needed any emotional support. I suppose I went because I had put it on my to-do list, and so I needed to check it off. While I was going through chemo, I generally went if I hadn’t skipped a nap that week and I didn’t have anything more fun to do.  Honestly, I didn’t feel like I got that much out of it.  I think I found it more interesting from an intellectual perspective than anything else.

I didn’t go over the summer last year– it’s tough to make even a monthly meeting over the summer with travel and kids at home.  I figured I’d go back in the fall.  If I didn’t have anything better to do.

And then a friend had a recurrence.  She’d hung out with me while I was on chemo, told me what to expect with surgery, even shown me her scars and compression gear after her final surgery.  Last fall, I was faced with the reality that my candid, funny friend could die from breast cancer.

We have the same oncologist, and she knows that we are friends.  Of course, she wouldn’t talk about my friend at my appointment, but she cautioned me that I would know “people” who had recurrences.  That meant nothing about my chances of recurrence.  She felt very optimistic about my case, and she warned me about getting too close with women with breast cancer. She knows my background and that I want to be able to use it and my experiences to help other women with cancer.  She shared with me her own struggle maintaining a professional relationship with patients when she genuinely likes them– that it is hard for her to see them die.  But that she has to have some separation.  She shared all this with me in such a genuine way– out of concern, almost as a friend. As I worried about my friend (who is on a trial and doing great, by the way), I stayed away from the support group.  Why would I want to make any more friends who are likely to die? More than that, why in the world would I want to spend time with someone who will remind me not only of my own mortality, but of the fact that I could die slowly, in pain, with my little kids looking on? I didn’t feel like I needed the group or anymore baggage, so I made up excuses not to go. Not that I gave those excuses to anyone– they never knew that I went to begin with.  I gave the excuses to myself, knowing full well that I was telling myself lies.

As I approached my six month check up appointment in the spring, I started to worry. I worried about every little headache, an achy hip, a teeny little “nodule” in my breast. Intellectually, I knew I was probably fine.  But the “what ifs” began to take over my thoughts. I felt so silly calling my doctors. I was embarrassed to bother them. (Thankfully, Clay told me that he didn’t want me to feel bad bothering them, but that he would feel better if I’d check it out. It became less about me bothering them for me, more about doing it because he wanted me to.  And somehow that made it better.)  About that time, I discovered the BCSM group on twitter and found many of them talking about “scanxiety–” the anxiety that comes as you approach a scan or doctor’s appointment.  They talked about not wanting to bother their doctors with their fears of recurrence.

I found comfort in the validation. I hated that anyone else felt like I did.  Yet it was comforting to know that someone else felt just like I did.  I headed back to support group that month.  I sat in the room of women, some a couple of years out from treatment, one past the coveted five year mark, and one who was taking a break in the middle of her chemo treatment.  Because she was giving birth the next day.  I learned two major things that day. No matter what crazy things I worry about, other people worry about them too. Also, I should stop feeling sorry for myself because someone always has it worse.  I may have some things figured out when I walk in the door, and perhaps my words could help someone else.  And because she’s already been through something I’m struggling with, her words can help me.

And so I will go to support group, and I will make new “cancer friends.” Desperately, I hope that we will all stay healthy and cancer free and die as sweet old ladies. Yet I know that I may not have gone to the last funeral celebrating the life of a woman whose life was claimed by breast cancer far too young. Even so, I am convinced that we can gain more through the sharing of our stories than the pain of loss can take away.

Routine Appointments, Compliments, and Icky Words

last day of school
The kids and their puppy on their last day of school.

I had my annual OB/GYN exam last month in the flurry of  “appointments before school gets out.”  I really like my doctor, he was there when I went in to labor with Emma Clare, and he delivered Turner. He has the greatest bedside manner.  He’s a runner, so we’ve talked barefoot running versus cushiony shoes.  He was the first one to hear I had breast cancer– my surgeon found out when she was at a conference and was hoping that he could give me the news in person as he was seeing me that day. (Only I had already seen him when she called.) When I called his office a week later to see if I could get out of a routine post-op appointment to check that my teeny incision since I was immersed in cancer related doctor visits, he called me back right away. Of course I could skip the appointment, and he spoke to me with such compassion about my diagnosis, making sure I’d been able to secure all the appointments I needed and that I was in the care of the best physicians.

As she and I were trying to squeeze in one last “the kids are still in school” outing, I was telling Sally I had the appointment and called him my OB.  He was there when I had my babies, so that’s how I think of him.  She pointed out that I am not pregnant, nor do I plan to be, and so I should start calling  him my gyno. ??? Besides the fact that it makes me feel old, that is such an icky word. Gyno.  Ick.  And this from a woman who cringes every time I say the word “moist.” Not that I would ever say “moist” in her presence just for fun. And I would certainly never do it over and over again.

Anyway, this year when I headed into his office, he did the same exam as always, but he stopped when he got to the breast exam. “Wow,” he said. He asked about my plastic surgeon. “He did a really great job. I mean, I don’t want to be weird, but wow.” Kind of makes a gal feel good when a doctor who sees a lot of, uh, women in my situation, can be so complimentary.  (You didn’t think I was going to say “women in my situation,” did you?) He told me how happy it made him to see me looking so great– having come out on the other side of breast cancer so well.  I told him I might just need him to follow me around to say nice things.  And babies or not, I’m not calling him my gyno.

Surgery Wrap Up

The view from the exam table at my plastic surgeon's office
At the plastic surgeon’s office. Yep, that’s an implant on the sink. Because you know you want to touch it.

One week after surgery I headed back in for my post-op appointment. The one week appointment isn’t too eventful.  I won’t go through my whole outfit, but you need to be sure to dig out those good panties again.  Bonus points if you have two good pair, just in case the doctor remembers that you were wearing that same pair before.  And don’t forget, if you’re wearing spanx for compression, you need to toss those panties in your bag because you’ll have to ditch the spanx when you put on the paper gown so that the doc can check the liposuction incisions, and I’m betting that you’d rather not stand open-gowned to be examined– and have a full conversation– commando. (Which reminds me, I need to dig those panties back out of my purse so I don’t accidentally fling them out when I’m pulling out my wallet at Target…)

OK, now that we have the panties situation out of the way, on to the appointment.  My surgeon was pleased with the results so far.  The places he put the fat look much better.  He was very optimistic, though cautiously– but that’s just his character.  He’s a very conservative doctor, but he gets great results. He warned me that we can’t really judge until all the swelling goes down.  The six week appointment (the camera comes back out for that one, so all the panties and grooming talk applies again) will give us a very good idea, but he reserves all judgment for the three month follow up.  By that time, all the swelling and bruising should be completely gone.

And now for the big news: I still had good fat in my flanks! He was so sure that I wouldn’t, he made incisions in my abdomen and prepped it for liposuction before he started suctioning my legs. As it turns out, though, I’ve got some quality fat in my thighs. I’m so proud. He decided not to take any fat from my abdomen after all. Because he thought we should save it. In case I need it later. I wonder if anyone else has ever decided that they should save their fat for later?  I think he thought I’d be disappointed. But after three or four days above ninety degrees, my only thought was to ask whether I could ditch the super high waisted spanx. The prep work could leave me with some abdominal swelling, so he said I should stick it out for another week, but I’m thrilled to be able to switch to the low waist girdle in a few days. Plus, I got to keep my belly fat in case I need it later.  A win-win, right?

What to Wear | Surgery Day

what to wear surgery

Today’s the big day– hopefully the last surgery day.  And you know me– what I’m wearing is deliberate and planned out.  Of course, I need the maxi skirt for the compression gear that comes later.  This hoodie has become a surgery staple for me.  When you’re having breast surgery, you aren’t allowed to raise your arms over your head, so something that buttons or zips up is a necessity.  This one is great because it’s light weight and loose fitting. Flip flops are easy, and the glasses (ugh) are a must.  I think I need some new glasses.

surgery bag

I’ve got my bag all packed too.  Less is more.  I might add a book or single magazine, or maybe my little computer.  But really, there are so many people coming and going, asking your birth date and why you are having surgery in your own words.  (Maybe I’ll have to be creative on that one!)  But there isn’t a lot of free time, so you don’t need a lot to fill it.  But with surgery at 2pm and no food after midnight, I’m already starving, so I hit up the Rite Aid this morning so that I had a couple of favorite treats waiting for me as soon as I get the green light.  (Will update on my facebook page this evening.)

Sometimes You Just Have To Be A Mom


It’s so funny, when you are pregnant (and have only had good pregnancies), the opportunity to have an ultrasound is so exciting. But one bad experience, and seeing a machine like this loses all its fun. Excitement is replaced with anxiety. The ultrasound machine is also a staple for breast imaging, but since there’s no hope of getting an early glimpse of a precious, tiny baby, it’s no fun. When your best hope is to see a cyst or a glob of fat, it’s easy to loathe the sight of this machine.

Last week, a very tiny nodule that I’d been trying to ignore for a week or so finally reached a critical level for me. They say you should wait for any symptom to continue for two weeks before reporting it, so I’d been trying to put it out of my mind to see if it would resolve. But after two weeks, the nodule (I refuse to call it a lump because it’s so tiny, and somehow it helps me emotionally not to have to say I have another lump in my breast) was still there, though still as tiny as a piece of orzo.  In the mean time, I’d managed to find another nodule, maybe the size of a half grain of rice, just adjacent to it.

I hated to call my surgeon, knowing that it’s probably nothing. I hate to be an annoying patient. Yet, I know that being observant and quick to act worked to my advantage before, so I can’t quite accept my own half hearted assurance that it’s probably nothing. I called and they couldn’t see me until mid-July. This made me realize how my original cancer diagnosis really was an answer to an unprayed prayer. I called about that lump and was able to be seen the next morning.  Now, as an established patient with a history of cancer, calling about a lump on the same side as the original cancer, I had to wait six weeks for an appointment. I took that appointment, but knew that I’d be seeing my plastic surgeon later that morning.  He felt what I had, and assured me that it was likely an artifact of healing after surgery, but that I should have my surgical oncologist check it out. When I mentioned that I had an appointment in July, he said he’d send her an email.  I was rescheduled that afternoon and had an appointment in two days.  (Love my doctors!)

It wasn’t a great appointment time for me, I had to miss the first grade play and would be late to the bus stop. But I needed to take it, and I need to do all the mom duties, too.  So I saw the dress rehearsal of the play and got a friend to cover for me at the bus stop. My surgeon applauded my self-examination skills (I think she was shocked that I’d found such tiny bumps, it took her a little bit of effort to find them!) and was able to find them quickly with the ultrasound. They looked like little fat globs on ultrasound, so my options were “watch and wait” or biopsy. At this point in my life, with my history and personality, I can tell you that “watch and wait” will almost never be an acceptable solution to me. So we headed over to the procedure room and prepped for a biopsy.

I thought of the last time I lay on that table. And then I forced myself not to think of the last time.  She was able to aspirate the area, and thankfully that meant I wouldn’t need to have a core biopsy.  She assured me that it was nothing.  She would “eat her hat” if pathology revealed anything abnormal.  I have this crazy response to physiological stress– my teeth chatter.  It’s worse if I’m cold, but it doesn’t happen because I’m cold.  I remember it happening after at least one of my kids was born, and it’s happened after most procedures I’ve had during the whole cancer thing. Once again, I put my shirt back on and fought to keep my teeth from chattering audibly as I left the office.  And because I’m a mom, I hopped in the car and headed to the bus stop, hoping the chattering would stop before I arrived.  I left the air conditioning off and the windows rolled up, and the warmth of a car in June helped calm my chattering teeth just in time. I parked (illegally), hugged the kids, and sat to chat with the crew.  I could worry about that pathology later. But right then, I just needed to be a mom.

(Just got back from the bus stop, where I heard from the doctor’s office– the cyst she aspirated was benign.  So I guess she won’t have to eat her hat after all.)