Two Years and Counting | Post-chemo Pixie Grow Out

pixie grow out run lipstick chemo

We all have dates that we remember.  Some very important, some rather mundane.  I could never remember dates for history class.  But I’ve got a slew of dates floating around in my head.  March 8– my first date with Clay.  May 1– the day I had to finally send in the acceptance to the University of Illinois (it was not my first choice for college, but I couldn’t get the scholarship support to go elsewhere.) July 18– my first best friend’s birthday, and we haven’t lived in the same town since first grade.  October 5– the day I found out I had breast cancer.  February 1– my last day of chemo.

Wow, that was a lot of writing to get to the “it’s been two years since my last day of chemo” line.  But, there you have it.  Two years from completely bald to Rapunzel-like hair.  I was shocked last week when someone compared my hair to Rapunzel’s– I was thinking of the long blond braid that reached to the base of the tower.  Apparently in Tangled, her hair is cut at the end of the movie, and as it turns out, my newest style looks very much like hers.  (Like how I tried for a concerned, wide-eyed stare just like hers?)  And here, I thought growing out my hair would take forever.  All I needed was two years to get hair just like Rapunzel’s.

On Being Med-Free | Tamoxifen and Long Term Breast Cancer Treatment

run lipstick chemo tamoxifen breast cancer

Forgive the old picture, but I don’t have any current pics of my meds.  Because I don’t have any meds.  Which is sort of a blessing and a curse.  It’s great that I don’t have to remember to fill a prescription and remember to take a daily pill.  It’s really great that I don’t have to deal with side effects.  What’s not so great, you may be wondering? I’m not actively doing anything to help prevent a recurrence.  If you know someone who’s had breast cancer and finished her treatment, odds are good that she’s taking a pill every day for the next five or ten years, and so it’s an obvious question to wonder why I’m not.

And this is where we go back to the science.  Remember when I explained about how my breast cancer is called triple negative? (Yep, if you look at that post, I used the same picture! Sorry!) Pathologists look at three main receptors when classifying breast tumors: ER, PR, and HER2.  Since my tumor didn’t have any of the three, I am considered “triple negative.” Tumors that express ER or PR are considered hormone responsive, and they make up 60-70% of newly diagnosed breast cancer cases.  These tumors use estrogen to grow, which means that shutting down their ability to use estrogen can shut down tumor growth.  No tumor growth means your tumor won’t kill you.  Obviously, hormone-targeted therapies have made a significant impact in the management of hormone responsive tumors.  There are several ways to manage hormone responsive tumors long term.  Tamoxifen is the most commonly known, and it acts as an anti-estrogen in the breast and effectively shuts down estrogen signalling.  Other drugs (raloxifene, toremifene, and fulvestrant) work in a similar manner.  Aromatase inhibitors halt the production of estrogen (letrozole, anastrazole, and exemestane) and can also be used to starve the tumor of estrogen.  (Fun fact– a woman’s body uses testosterone to make estrogen using an enzyme called an aromatase, so aromatase inhibitors prevent that conversion).  In premenopausal women, ovarian ablation (with drugs like gosserelin or leuprolide) can be used in conjunction with aromatase inhibitors, and have recently been shown to be very effective.  These treatment regimens are long term– five years used to be the standard, now some studies indicate ten years is even better– and are not always tolerated well.  Like any treatment, some women don’t have many side effects, but for some women, the treatment causes significant quality of life issues leading them to choose to stop treatment.  (This is certainly not a decision to be made without talking to your doctor! I’m just saying that it happens, good or bad…) Most women deal with some side effects that fall into the undesirable category, but are considered a reasonable trade off for the reduction in risk of recurrence.

All of that is to say that at least 60-70% of women treated for breast cancer benefit from long term hormonal treatment.  But for those of us without hormone responsive tumors, there is no reason to take the meds.  Our tumors don’t use the estrogen, so blocking it won’t help us.  And herein lies the blessing and the curse.  I don’t have to take daily meds and deal with the side effects, which is awesome.  But I’m also left in the position where there is no medication that I can take that will reduce my risk of recurrence, and that’s a little less awesome.  I’m just going to count on the fact that the chemo did its job and keep running, running, running.  (I do wish it would warm up, though.  It’s a little cold and icy to enjoy running right now!) I can’t take tamoxifen to help me, but exercise has been shown to reduce recurrence risk.  And so I will run.  As one triple-negative friend put it: “Running is my tamoxifen.”

For a more complete discussion on hormonal therapy for breast cancer, check out what this fact sheet from NCI (National Cancer Institute).  It’s complete and not overly technical.

The Great Pixie Grow Out Continues… | Hair Growth After Chemo

post chemo pixie grow out run lipstick chemo

At this point in the great pixie grow out, my hair pretty much looks different every day.  This afternoon I pulled on my trusty smartwool beanie to head to the bus stop, and I decided it looked kind of cute. I mean, if it’s good enough for Tom Brady to wear to a press conference, I should be able to leave it on inside, too.  Mine’s not quite as vintage as his stocking hat, but since it’s the hat I bought what seems like another lifetime ago as I prepared to lose my hair, we’re going to go ahead and call it vintage.  It does look a bit cuter now with some wispy hair sticking out than when I had it pulled tight over my bald head, but it served me well then, and it’s still a handy little hat.

growing out a pixie run lipstick chemo

Since it really started growing, I have been getting my hair cut every 5-6 weeks because it gets so bulky, and I’ve always wanted my haircut to look intentional.  It would be a little longer if I’d have just never cut it, but I’ve really loved a lot of the styles that I’ve had along the way, and it never looked like an awkward grow-out phase.  But when I got my haircut just before Christmas, it was starting to get long enough that it wasn’t quite as bulky, and the haircut didn’t help the shape nearly as much.  And so I did something very brave. Or very stupid. I set my next haircut for 8 weeks. (Which is two weeks away.)  Yikes. Lately, I’m wearing it straight more than I’m sporting the polished weather girl coif, and occasionally I bust out the sprouty pigtails or the trusty bandana.  I have another new style that someone compared to a Disney princess (you’ll never guess!) that I”ll have to show off next week!  Stay tuned for more fun as the great pixie grow out saga continues…

Perky or Just Dense? | Breast Density and Breast Cancer

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

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

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.

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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!

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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.