Thursday, September 13, 2012

Ummmm. What just happened?

I don't usually have a very good memory for ordinary, mundane details (which is one of the major reasons why I blog) so it's strange to me that I remember the conversation that I had with my doctor 2.5 years ago -- the first time she told me to schedule a mammogram -- so well. I was 37, Caroline was two and a half, and I was there for my annual checkup:

Dr. K: So, any more babies?
C: Ha! Hahahaha. Um, no.
Dr. K: Okay, in that case, I'll see you next year. Go ahead and schedule a mammogram when you make the appointment.
C: A mammogram! Seriously? I thought I didn't start getting those until 40. You're making me feel old, Dr. K.
Dr. K: Every woman needs one baseline mammogram done sometime between ages 35 and 40. And then you'll start getting them annually at 40. Since you are done with kids, this is a good time to go ahead and get your baseline.
C: Sigh. Okay.

When age 38 rolled around, I scheduled my annual appointment and dutifully scheduled the mammogram at the same time. I remember walking into the office suite to get the mammogram. It was the same place I went for all of the ultrasounds I had with my three kids. Those were happy appointments -- heartbeats, little hands and feet, finding out whether we'd be having a boy or a girl -- appointments filled with hope and excitement and the promise of youth. And now I was there for the "mature woman" appointment, which was sort of bumming me out. Because back then, my biggest worry was getting old.

I promptly forgot about the mammogram right after I had it, and a week or so later I got a card in the mail telling me that my mammogram was normal. Of course it was. I was 38. I didn't have a strong family history. I ran half marathons. I breastfed three kids for 12+ months each {breastfeeding lowers your risk of breast cancer}. I had my first kid at age 29 {having your first baby before age 30 lowers your risk of breast cancer}. I ate a diet rich in antioxidants. I was pretty much the lowest of the low risk for breast cancer.

When age 39 rolled around, I called to schedule my annual checkup, and my doctor's office scheduled me for a mammogram along with the appointment. I vaguely remember thinking that I didn't think I was supposed to get another one until age 40, but I didn't say anything to the scheduling nurse -- I just figured maybe they changed the guidelines or something. So I went for the mammogram and promptly forgot about it.

And a week or so later I got a phone call from my doctor's nurse telling me that some "suspicious microcalcifications" showed up on my mammogram and that I'd need to come back in for a "magnification mammogram." I was concerned, but not overly so. Several people told me that they'd had, or knew people who'd had, those before and they turned out to be nothing. Also: any word starting with the Greek prefix "micro" just does not sound that menacing. According to Dr. Google, most of these microcalcifications are benign -- but if it was cancerous, it was probably a kind of cancer that did not have the ability to spread.

Within a couple of days of learning that I needed additional tests, I got a bill from my doctor's office for the cost of the mammogram. Blue Cross Blue Shield denied coverage because, as it turned out, I was not supposed to have a mammogram this year. I later talked to my doctor and confirmed that her office scheduled the mammogram by mistake. I feel like saying it again because it still overwhelms me when I think about it: her office scheduled the mammogram by mistake. The office made a scheduling error, and I was not supposed to have another mammogram until next year.

The magnification mammogram led to a biopsy. When I met with the surgeon who would do the biopsy, I asked him if what I read was true and that most microcalcifications, if they are cancerous, are just that non-invasive type. He said not always, but that 85% of these biopsies come back benign. He did not seem worried at all.

I went in for the biopsy on a Wednesday. The doctor told me that he'd have the results by Friday, and that Katie, his nurse, would call if they were benign, but if "we had something to talk about," he would call. After the biopsy was over, he put his hand on my shoulder and said "this is going to come back fine." And I said: "how do you know that?" I thought that maybe he saw something under the microscope that suggested fineness. And he replied: "Oh, just statistically. Remember how we talked about how at least 85% of these come back benign?" Oh. Okay. So I guess I felt at least 85% encouraged walking out of there.

I think about the state of my life before that mammogram. Married to a great, involved husband and father. Three amazing kids. A job with people I like and the flexibility to be home with my kids after school. Oh, but we were busy. So many things going on at school, so many after school activities. Homework. My job, which is technically part-time, had become more than full-time because of one particular case; I was really enjoying my work on the case, but I didn't have a full-time infrastructure in place to work the hours that I was working, so I'd leave work to pick up the kids in the afternoon and then go back into the office after they went to bed. I felt like I was perpetually scrambling. I felt like things were slacking at home. But the kids were getting taken care of and the work was getting done. So really, the only problem was that I didn't have time to declutter the closets. And that -- no time to declutter -- was pretty much the biggest stress in my life on July 12.

On Friday, July 13, we took Jacob to Six Flags in Atlanta for his birthday. We had a full car-- Elizabeth, David's mom, my niece and my sister-in-law. My parents stayed behind to keep Caroline, who didn't want to come because she was afraid that she would run into large costumed characters. We had a cheerful two hour drive to the park, and right when we pulled into a parking space, my phone rang.

It was the doctor.

Dr. L: Cathy? I have your biopsy results. Do you have a minute to talk? Remember how we talked about how there are two kinds of cancer we see typically with these things, the non-invasive kind and the invasive kind? You have the invasive kind.


I felt a huge surge of adrenaline. My heart started racing and I felt like I was floating. I proceeded to have the most surreal conversation of my life in the Flash Gordon section of the parking lot at Six Flags.

C: What?! What does that mean? Am I going to die? I have three kids to raise!
Dr. L: No, no, no. I think this is early. What we want to do is get you in here for an MRI to get a better sense of what we're dealing with and make sure the nodes look . . .
C: Hang on, I can't hear you, the Scream Machine is passing by.
Dr. L: Make sure the nodes look clear. Based on how small this appears to be, I fully expect that they will be clear. I want to test you for the BRCA gene, because when women your age get this it is more likely that the gene is present. Blah blah blah (surgical options) blah blah blah (treatment options).

David walked over by that point. I'm sure it was obvious that I wasn't 5 minutes into a "it's benign!" conversation. The doctor had assured me that this was not an emergency and that there was no need to leave Six Flags to come see him this afternoon. I put David on the phone, and he repeated the whole thing to David. We asked questions. The doctor hung on the phone with us for a LONG time answering them. I sought many reassurances that this would ultimately be okay and he gave them to me, even though I know now that he couldn't have known much about anything at the moment. He told me that the weekend was sure to bring more questions and that he'd call me on Monday to answer them {and he did}. And then, there was nothing to be done but ride some roller coasters.

I will always be grateful to that surgeon for his patience and kindness and compassion that day. And for doing (as became obvious much later) a technically superb biopsy. We did not stay with him after the diagnosis because I felt like for my own peace of mind I had to move from the community hospital to our local university hospital, which is immersed in the latest research, and uses a "team" approach to cancer treatment (i.e., patients are assigned a team of a surgeon, a medical oncologist and a radiation oncologist, all of whom work together, rather than having to identify doctors and cobble together a team on your own). On the way home from Six Flags, at a random highway stop in the middle of nowhere, I ran into my friend Cameron, whom I hadn't seen in months. She works in the legal department at the university hospital. I view running into Cameron as yet another sign (along with the accidentally scheduled mammogram) that someone is looking out for me. I emailed her in the car, and she was able to immediately point me in the right direction, telling me that the best person to contact was actually the managing partner at my law firm, who is on the board at the Comprehensive Cancer Center and could probably help me with getting an appointment. So I called my managing partner on Saturday. By Monday he had an appointment for me with the best team of breast cancer doctors in our city. By Wednesday I was in there for more imaging. I am forever indebted to him for doing this for me.

The next two months are pretty much a blur of tests and waiting and more tests. More imaging than I can even count. Three additional biopsies. I learned that the pathology of my cancer was a good one to have, and my doctors were extremely optimistic from the beginning that this was early stage and curable. I learned a lot more about my particular cancer, infiltrating lobular carcinoma. It acts differently from the far more common invasive ductal carcinoma -- it does not have the glue* (*not actual medical term) to form lumps and just kind of spreads from cell to cell. I did not have a lump and would probably never have a lump. Stage for stage, lobular does as well as ductal, but it is often not caught until late stage because it cannot be felt and it doesn't always show up well on mammogram, especially in young women. If anything, it might show up as a denser area of tissue, but young women have dense tissue to begin with, and without years of mammograms to compare, it is easily missed. And indeed -- my tumor was not visible on mammogram. What was visible were the microcalcifications, which were a product of the bad cell growth. Microcalcifications are not always associated with lobular, but mine had the decency to throw some out. On MRI, the whole tumor, which measured almost 5 cm, was clearly visible. Once they saw how big it was ("huge!" said the surgeon, whom I somehow liked regardless), they biopsied the opposite end from the known cancer, fully expecting the whole thing to be the same cancer, but it turned out that the other side was a kind of atypia/pre-cancer (not yet invasive). We wouldn't know until surgery where the invasive cancer ended and the pre-cancer began.

In between tests and waiting on test results, I tried to kill some time. The weekend after I was diagnosed, the Eiffel Tower flickered on TV and I thought "I might never see Paris." It's not like going to Paris is even a particular dream of mine; it's just that I think that it's natural to assume that we have all the time in the world and that we'll get around to things like traveling eventually. David and I traveled a little bit after graduating from law school, but then we started working intense jobs, and then we had kids. I just took for granted that when the kids were grown, we would have endless stretches of time to see the world. And we probably will. But I will never take it for granted again. So I renewed my passport -- I figured that if the opportunity to travel overseas presents itself, I don't want the lack of a valid passport to be the thing standing in the way! I also got passports for the kids, just in case that hauling them on a transatlantic flight sometime in the next 5 years seems like the thing to do.

I also cleaned out the garage and storage room with my dad. I wish that the decluttering did not have to take place under such stressful circumstances, but gotta say the garage looks great!

I also subscribed to Coastal Living after years of thinking "I should really subscribe to Coastal Living."

So -- after all of the information was gathered, we hatched a plan with my surgeon. I learned that just as you can't be just a little bit pregnant, you can't really have just a little bit of cancer (and anyway, before the surgery, it was entirely possible based on my images that I had a lot of cancer). My surgical plan was aggressive, but 100% what I wanted to do. And so last week, I had the surgery. It went great. The surgeon reported to David right after the surgery that he got clear margins and that my sentinel node biopsy was negative. We just had to wait a week for the final pathology. We got the final pathology yesterday, and it was great news. My lymph nodes were indeed negative. Stage 1. There was no residual invasive cancer in the removed tissue -- all of it apparently came out during my July biopsy. There was more of that atypia (pre-cancer), but no invasive cancer. Crazy times! So of the 49mm tumor that enhanced on MRI, only the 2mm that came out during the biopsy was invasive. The rest was pre-cancer, not yet invasive. What apparently happened here is that I had an area of atypical cells that had just begun to turn into invasive cancer cells, and then it was caught about as early as it could physically be caught. Thank you, super awesome Dr. L at the community hospital! I think about the fact that he did a basically perfect biopsy. The invasive cancer area was so small that if he had taken a sample just a little bit to the left or the right or above or below it, it would have come back benign (albeit probably atypia, which would have at least put me on the high risk track) and I would have proceeded with, I don't know, every 6 month mammograms?, while the invasive cancer continued to spread. I still don't know what, if any, additional treatment I will need, but I feel insanely blessed with the current state of things.

When you have a pretty healthy lifestyle to begin with and this happens, it's hard not to want to find something to pin it on. The doctors have no idea what caused this. I do not have the BRCA (breast/ovarian cancer) gene (they tested me for it) -- so more than likely, it's just "something genetic" triggered by "something environmental." And I have no doubt that the "something environmental" part will turn me a little bit cuckoo-for-cocoa-puffs. I'm not yet sure how the crazy will manifest itself, but oh, it will come. I may decide to rid my house of all plastics. I may start buying organic laundry detergent or eating only raw foods. I may start planning all of our meals around chia seeds. Green smoothies are most definitely in my future. I may take up nightly meditation, or triathlons, or perhaps I'll give up animal proteins or anything processed or sugar {okay, probably not sugar}. I'm sure I'll switch to decaf {although I think I've read studies showing that coffee both causes and prevents breast cancer -- damn you, conflicting studies!}. I'll know intellectually that other than trying to do the things that everyone should do to be healthy, there is really nothing specific that I can do to prevent this from happening again. But that won't stop me from becoming the family nut case! I know that my friends and family will humor me when I offer to bring organic flaxseeds for Christmas dinner and pass on the roast beast.

This is not at all the kind of subject matter that I typically blog about. I much prefer to focus on silly, frivolous things; that is my comfort zone. But I feel like everything unfolded this way for me for a reason; that I am meant to beat this and do something with it. And I honestly believe that the mammogram that I was not supposed to have this year saved my life. So I feel like it is important for me to share what went down around here, to help spread the word about the importance of mammograms. Especially for younger women who are busy raising kids and/or working and generally running around and who, due to their age or clean family history or otherwise, consider themselves low risk and might be tempted to just skip the pesky mammogram this year. Because nobody was lower risk than I was. And it would have taken nothing for me to cancel that mammogram -- a good lunch invitation would have done it. And now here I am, exactly two months to the day after I was diagnosed, feeling like I have a long life ahead of me because a mammogram caught this early.


Mom to 3 C's said...

Wow, I had no idea you were going through all this. So glad there is a happy ending! Praying all will remain clear... and that you don't turn into too much of a nutcase!

Nancy/n.o.e said...

What an amazing chain of events, Cathy! I'm so glad that your path reports came back so well and that your cancer was (barely) Stage 1. So in between pinning chia seed recipes I know you'll be thinking of how this experience will bear fruit in your life. Spreading the mammogram gospel is one very important service; thanks to you I had my mammogram last week. Maybe you'll also inspire me to declutter the garage!

Heather said...

What an amazing blog post, Cathy, and of course it is an amazing story. I'm so glad you shared this.

Jessica said...

Cathy, I am so glad you are well after what must have been a very scary couple of months.

Thank you for using your experience (and your amazing, beautifully-written, and somehow still funny blog post) to spread that mammogram gospel (as Nancy says above). I'm 37, done with kids, and while my OB says I can wait until 40 for my baseline mammogram, I'm thinking we need to revisit that (based on some family history).

Now, good luck with that garage!

Pamela said...

I always believe that everything happens for a reason. And here is just more proof. I am so happy that everything looks good for you. I see you have maintained you ability to make your fans smile with your posts. ;-)

I will keep thinking of you and your family and see what kinds of interesting things you can come up with using raw foods and chia seeds. And if you decide to take that transatlantic flight with the kids...please take us along. :)

Audrey said...

Oh, my. Sending you every possible good wish, and thanks for this beautiful reminder!