Thursday, March 27, 2014

Guest Post

I have never done this -- posted someone else's work on my blog. But there was so much good information in Katherine's post (you can visit her blog at that I asked her if I could share it here. (She agreed.) I saw it on a day when I'd been thinking about all I've learned since my own diagnosis, thinking how naive I was when I first heard I had breast cancer (which is perhaps a good thing, since I didn't know exactly what I was up against). Katherine's story is not the same as my story, and that's part of what I've learned. Breast cancer is not one diagnosis, not one story, not at all what I expected more than two-and-a-half years ago.



Did-You-Know-Logo-SmallI am coming up on my fifth year of living with metastatic breast cancer. I am fortunate–I started with a low volume of bone mets and five years later my disease has remained fairly indolent. Not everyone is so lucky–and believe me, it is only luck. It isn’t like I tried harder or did anything special–I was just “lucky” enough to have a “kind” of breast cancer (ER/PR+; HER2-) and bone-only disease that has been fairly low key. I try not to take this for granted.

As I think back to what I knew about breast cancer in 2009, I am embarrassed. I really didn’t know anything. I remember puzzling out the facts of my case–as though I was in high school muddling through my Spanish homework–constantly stopping to look up words  and rereading everything. Now I like to think I have a basic fluency in breast cancer, but I also realize there is so much I don’t know.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire. I think I have calmed down a little bit. I hope I have become more focused.

Prior to my own diagnosis, I thought of breast cancer as one disease. I didn’t realize that the absence or presence of cell receptors--as determined by one’s pathology report–guide treatment as does HER2 status. (“The  tissue is the issue,” as my friend Marnie says.) Tumor characteristics ultimately determine what “kind” of breast cancer one has.

  • ER/PR+; HER2- (accounts for 65% of breast cancer cases)
  • ER/PR+; HER2+ (accounts for 20%  of breast cancer cases)
  • ER/PR-; HER2-. (accounts for 15%  of breast cancer cases)
Update: A couple of readers with ER-/PR+ breast cancer noted that the above is a bit of an oversimplification.  Here is a further breakdown courtesy of :
  • ER+: About 80% of breast cancers are estrogen-receptor positive.
  • ER+/PR+: About 65% of estrogen-receptor-positive breast cancers are also progesterone-receptor-positive. This means that the cells have receptors for both hormones, which could be supporting the growth of the breast cancer.
  • ER+/PR-: About 13% of breast cancers are estrogen-receptor-positive and progesterone-receptor-negative. This means that estrogen, but not progesterone, may be supporting the growth and spread of the cancer cells.
  • ER-/PR+: About 2% of breast cancers are estrogen-receptor-negative and progesterone-receptor-positive. This means that the hormone progesterone is likely to support the growth of this cancer. Only a small number of breast cancers test negative for estrogen receptors but positive for progesterone receptors.
  • ER-/PR-: If the breast cancer cells do not have receptors for either hormone, the cancer is considered estrogen-receptor-negative and progesterone-receptor-negative (or “hormone-receptor-negative”). About 25% of breast cancers fit into this category.
  • HER2+: In about 25% of breast cancers,the HER2 gene doesn’t work correctly and makes too many copies of itself ( HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression).
Also: If you are reading scientific papers, it’s helpful to know that researchers typically  divide breast cancer into four major molecular subtypes: Luminal A, Luminal B,  Triple negative/basal-like and HER2 type. Read a detailed explanation here.

Inflammatory breast cancer (IBC), the kind my mom had, refers to an unusual presentation–there’s no lump, the disease is generally found at Stage 3 or Stage 4. In general, IBC is first treated with chemo, followed by surgery and then radiation. Hormone receptor and HER2 status guides treatment–someone with IBC could have ER/PR+ HER2- breast cancer, for example.

I knew invasive ductal carcinoma (IDC)  (starts in ducts)  and is the most prevalent kind–it accounts for 50 to 75% of all invasive breast cancers. Invasive lobular carcinoma (ILC) (starts in milk glands, aka lobules)  is the next most common type, making up about 10 to 15% of all invasive breast cancers.  ILC generally does not have “lumps” like you’d find with IDC. Instead, ILC grows as sheets of cancerous cells–therefore it is harder to find via mammograms or self exam. With ILC, for any given stage or grade, the prognosis is similar to that of IDC. The pattern of metastases is slightly different vs. IDC–lobular carcinoma can metastasize to unusual sites, including the gastrointestinal tract, peritoneum, and adnexa (refers to uterus/ovary).  Invasive lobular carcinoma is more likely to occur in both breasts compared with other types of breast cancer. ILC tends to occur later in life than IDC — the early 60s as opposed to the mid- to late 50s.

I knew that breast cancer had stages and that Stage 4 wasn’t good. I didn’t realize that no one dies from early stage breast cancer–but that 20 to 30 percent of those with early stage breast cancer will go on to have a metastatic recurrence.

I did not know that a de novo presentation–someone who is metastatic from first diagnosis, is the exception rather than the rule. About 90% of those with metastatic breast cancer were previously treated for breast cancer; only 10% of us are metastatic from the start.

I did not realize that our US cancer registry does NOT track breast cancer recurrence–even though that is how most people join the metastatic breast cancer ranks. The NCI and SEER databases record only incidence, initial treatment and mortality data.  What happens in between — in terms of recurrence and the exact number of people living with metastatic breast cancer — is undocumented. As Musa Mayer says, ““It is as if these metastatic [people]  are invisible, that they literally don’t count. And when we don’t count people’s needs, we can’t provide or plan for them.”

I did not know breast cancer could spread to your bones, liver, lungs or brain. I knew it was bad if it spread beyond your lymph nodes.

I did not know that having the “worst” kind of breast cancer doesn’t necessarily mean you will have chemo right away. I assumed ALL cancer patients had chemo.  In my case, I will not have chemo until all of  the less toxic options have been tried first. This is both because of my cancer’s characteristics ( ER/PR+; HER2-);  and because my cancer remains under good control. Someone with triple-negative breast cancer can’t use  the anti-hormonal drugs (Tamoxfin; Femara, etc) that I do–their cancer would not respond (because it lack the necessary cell recpeptors).

I did not know having metastatic breast cancer means you are a patient for life. Or that the average patient may receive eight or 10 different treatment regimens in sequence. When one drug fails, you move on to the next one. 

Most people with MBC see their oncologist every month. If  the cancer is under good control, these appointments might be less frequent. But for most it is at least a monthly visit.

I did not know every three or four months I would have scans to see how well or  if my treatment was working. This is anxiety provoking and hard to understand if you have never experienced it.

I didn’t know my scan results could be categorized as No Evidence of Disease (NED), Stable (nothing got bigger or smaller, everything stayed the same); or Progression. I have never been NED but I have been stable, which is good, too.

I did not know that in some cases, people can live with metastatic breast cancer for a long time. I assumed everyone with metastatic breast cancer immediately got really sick and soon succumbed to the disease. While that does happen to some people, it is not universally true. Prognosis depends on many factors, including disease subtype and tempo.

I knew that not having children increases one’s risk for breast cancer, probably because of the unopposed flow of estrogen. I didn’t realize HAVING children increases a woman’s risk for breast cancer for about 10 years after giving birth. I would be willing to bet many women’s doctors either don’t know this or assume that this is a rare occurrence.

I assumed that being diagnosed with metastatic breast cancer at age 43 put me on the younger end of the MBC spectrum. I have sadly discovered this is not the case. I have met women in their 20s with metastatic breast cancer. While it is true that breast cancer is a disease of aging, I think members of the general public would be shocked to hear from some of these young people. Anecdotally, my experience is that there quite a few young women with MBC–too many, in any case.

I did not know that although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

I knew that men could get breast cancer but I  assumed this hardly ever happened. I have met (in person and online) at least five men with metastatic breast cancer. I am pretty sure these men and their families take scant comfort in the “rare” categorization.

I assumed that if one needed financial aid, one could merely call upon one of  the well-known cancer associations or national breast cancer groups. (Let me stress I am fortunate that I have not had to seek financial aid, but I know many who have.) I have learned that few national groups disburse funds. Typically one has to get help  from a local chapter or affiliate or community group and once those funds are gone for the year that’s it. I have learned most aid is fairly modest–getting help will require applying to many different sources.

I did not know that a  drug that PREVENTS metastasis may not SHRINK a large, refractory tumor. It has a different mechanism of action that is NOT picked up by the clinical trial system. I did not realize some of our best metastatic researchers are advocating for a new approach to clinical trials.

I did not realize that most Breast Cancer Awareness Month coverage focuses almost exclusively on those with early stage disease. People are either afraid of our reality or prefer to ignore it in favor of  “feel-good” stories. Of course, we’ve also seen the other extreme–someone assuming ALL people living with MBC are on their deathbeds, which isn’t necessarily true either.

I did not know the  incidence of stage IV breast cancer—the cancer that is lethal—has stayed about the same; screening and improved treatment has not changed this.

I did not know breast cancer kills 40,000 annually in the US and half a million worldwide. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally.

Most of all, I did not know that there was so much that I did not know!

Monday, March 17, 2014

Cancer Has Made Me Socially Awkward

It has been six years since I moved to Arizona, after spending most of my twenties in Washington, DC. DC is a vibrant, transient city, full of young people eager to make a difference, people who care about current events and issues affecting our country; it's a city full of history, culture, and possibilities. (So...the opposite of Phoenix--I joke! Sort of!) I met my husband in DC, so I'm a little partial to that city.

And the thing about a city so densely populated, so full of youth and energy and drive, is that it was easy to meet people. Chris jokes that my job as a lobbyist was primarily about happy hours, and he's not totally wrong. Everyone wanted to network, so one new acquaintance led to ten others. And then some of those acquaintances became some of my best friends. Or maybe it was just about being in my twenties? 
{photo credit}
Our life is decidedly different now, and it would be easy to blame our relative lack of social interactions on becoming parents or getting diagnosed with breast cancer. In fact, having Quinn has probably improved our social life, as we meet parents from Quinn's preschool and get invited to toddler birthday parties (hey, it's an invitation and it usually involves cake). 

I am not the first person to lament the culture shock that comes with a move to Arizona from just about anywhere else. It quickly becomes a topic of conversation at most events we do attend. The question boils down to: why is it so hard to make connections here? 

Part of it is the sprawl, as Phoenix stretches for seemingly hundreds of miles in every direction. I met a couple of women at Quinn's swim school who seemed really cool, then found out they lived in "the Avenues," meaning west Phoenix, meaning a good forty-five minutes from our house just east of central Phoenix, so we didn't even bother to exchange numbers. Friendships here are often geographically unrealistic, and so they don't get off the ground. 

Part of it is the heat, as everyone goes into hibernation (or leaves town) during the unbearable summers here. We hardly even saw our next-door neighbors last summer because we all move from air-conditioned house to air-conditioned car (parked in a garage, if you're lucky) to air-conditioned store/movie theater/office. 115 degrees is too hot for small talk. 

Part of it is the culture (or lack thereof). It exists here, but you have to seek it out and even then the results can be disappointing (see: food and wine festival we went to a few years ago that was essentially an excuse to wear minimal clothing (or show off surgically-enhanced assets) and drink at a park during the day. Five weeks post-partum, this was not the culture I'd been looking for). 

But mostly--I think--it's the sprawl and the heat. Friendships here take an amount of effort and planning that ones in DC never required. 

DC is full of politicians and has terrible parking, though, so it's not perfect.

And I didn't mean to turn this into a post about how hard it is to connect with people in Phoenix. After six years, I have formed some really outstanding friendships with people I've met through Chris's job at ASU and my yoga community and Quinn's school. I have other moms I can call on for help when I'm feeling overwhelmed or friends I can invite over for a (relatively) impromptu dinner. Our social life is quite different than it was ten years ago, but I'm okay with that. 

What I want to talk about is what happens when I do meet new people here, and this is a direct consequence of cancer: I never know when or how it's appropriate to share my health history with others. I feel awkward and insecure, which is not typical for me. I went to three different high schools. I know what it's like to be the new girl, know how to make small talk with strangers. Or at least I did. Now I can be found milling awkwardly over the guacamole and chips while others mingle. I can't be the only woman living with Stage 4 cancer who has this problem, right?
{photo credit}
A family in our neighborhood hosted a block party over the weekend and I met a couple of new faces. One woman complimented me on my haircut. Do I mention cancer? I wondered. Ultimately, I did, saying this was grow-out from chemo and I'm not quite sure what to do with it in this in-between phase. "Oh, I'm so glad you're a survivor!" she responded. And then I wondered whether I should explain further--that, actually, I'm still in treatment, and I'm not completely comfortable with that word. But I didn't. I just smiled and said, "Yeah, me too." A version of this exchange happens pretty frequently. More and more, as my hair gets longer, I'm less inclined to mention cancer, but should I? Do I then become that weird cancer woman who doesn't talk about anything else? Am I already her?

Another neighbor standing nearby chimed in: "Oh, I just did the 3-day walk! It was so inspiring!" See? Cancer makes everyone awkward. I did resist the urge to get on my soap box about the evil empire Komen. 

Another couple of women at the potluck had seven children under the age of seven between them, and asked the inevitable question of whether we were going to have more. What should I say? I debated saying I couldn't get pregnant because of health issues, but I didn't. I just said we had our hands full with one for now. I felt like I was admitting defeat to these super producers of little humans, like I am a lesser being because I don't know if I could handle more kids and here they were with three or four each. But I don't want every conversation to be about cancer.
Yet another woman asked whether I worked and whether Quinn was in preschool. No and yes were my answers. "He's in school a couple days a week because I have some health issues and need the extra help so I can make it to all my doctors appointments," I said. Or something like that. I skirted the issue, which felt disingenuous. Should I have just talked about how good I think it is for his social development? Probably.

I'd love to hear your thoughts on this. Because lately, cancer has been making me feel awkward, insecure, and insincere. All good qualities for sparking friendships, right? So. . . short of becoming more of a recluse, how do I navigate this weird space I'm in where I look mostly healthy but have treatments and am on disability and still live with this disease all the damn time? 

Hey, at least I don't have to worry about dating.

Monday, March 10, 2014


My Sweet Bugsy Boo,

Last Thursday you turned three years old. You'd been looking forward to your birthday since just after Christmas, and you'd tell anyone who would listen, "I'm going to be three at my party!" "In March!" "At the train park!" Lately, you'd added, "And then I'm going to be four, and five..." Let's not get ahead of ourselves, okay, my Mr.?

Earlier last week as I was tucking you into bed (because I still lie down next to you until you fall asleep; I'm not sure how to break that habit, or whether I'm ready to), you turned into me and snuggled, then told me I was your best mama. It was the end of a long day; you'd woken up whimpering because of an ear infection/fever combo and I felt like I was catching your cold. We were both worn out. Then with your sweet declaration, my heart nearly exploded. We're going to be okay, I thought.

Most nights, we tell each other what our favorite part of the day was. You leave out the "favorite," though, and just say, "My part was..." "What was your part?" you ask me. "What was daddy's part?" You make me guess. I always want to tell you my favorite part is that moment, snuggling next to you and talking about our days, but you say, "Nooooo. Your part was prolly..." and you come up with something else. How could bedtime possibly be the best, right?
Getting ready for bed is another story. Teeth-brushing is a battle, but we manage to turn it into a counting game. For now, you're not bored with that, but you still end up clamping down on the toothbrush between your teeth in defiance most nights. Part of me wants to throw my hands up and tell you they're all going to fall out anyway, but I don't want to give you nightmares.

You bargain for more books as often as you can. I love it that you love to read, but right before bed is not the time for all twelve stories in the Curious George anthology.

The point is, you can be stubborn and ornery and you know exactly how to push my buttons.

And you remind me so much of myself in those ways. I remember very clearly putting my foot down about something, anything (everything, probably) when I was a little older than you, and not being sure why except I didn't want to be told what to do. Hell, if I'm being honest, I'm still combative and cranky for no tell-tale reasons sometimes. Cancer hasn't helped. So I try to go easy on you, and keep an eye on your blood sugar and sleep levels (because that's when I'm at my worst, too--when I'm tired and hungry. Aren't we all?)
On the other hand, you are at a magical age, discovering and learning new things every minute. I try to pay attention, to soak it up, to remember all your funny quips and special pronunciations and curious observations. But my memory is terrible (again, cancer hasn't helped), so here are a few things:

Your favorite color is green. You are particular about your clothes. You want to brush your own hair (or not brush it at all).

You say:

"Rethcue copter" for helicopter
"Buzz year" for Buzz Lightyear
"Banas" for bananas

You have trouble with the "sn"and "l" sounds, so "snuggle" becomes "nuggle," "snow" becomes "no,"  "Loki" becomes "yoki," "look" becomes "yook," and I get mad at anyone who tries to correct you. Someday you'll enunciate perfectly, and I'll miss these little imperfections that are so perfectly you.

A couple of weeks ago, I was giving you a bath and told you it was time to get out of the tub. You observed, "There's no clock in here." So I told you I just knew the time in my head, which seemed to blow your mind. "You have a clock in your head?" you asked me, laughing. "I don't have a clock in my head!" you declared. We giggled about that one for awhile. I love watching your wit and sense of humor grow.
Over the long President's Day weekend, I decided I was done with diapers. You'd resisted giving them up on a couple of other attempts, but I was determined and confident you were ready. We went "nudey booty" (and by "we" I mean "you") the first couple of days. At first, you cried for something to "catch my pee," but I am floored at how quickly you caught on to going to the bathroom like the rest of us. Once you warmed up to the idea, you were the valedictorian of potty training--there were no accidents after the first week. There was no turning back, which sort of sums up your approach to life.

You amaze us with your curiosity, your love of the outdoors, your physical prowess. I took you hiking a couple of months ago, and you were off like a mountain goat. And you are swimming like a fish now, so my biggest hurdle is that you are bored with swimming lessons and don't want to do what the other kids are doing. We tried out an indoor rock-climbing place last month, and once you got on board with the idea of a harness, you were above our heads and out of our reach in no time. 
Quinn, watching you become a little human has been the greatest experience of my life. I am so grateful I get to be here to help parent you, guide you, be your friend. I am so lucky to get to know you a little better every day. I hope we have so many more days, months, years together.

Your Mama

Wednesday, March 5, 2014

The Elephant in the Room

Stage 4 breast cancer often gets swept under the rug in the sea of pink awareness campaigns. (I've talked about my frustration here and here and here, and what might help here.) It is a tough fact to face that thirty percent of breast cancer cases will someday metastasize, that metastatic breast cancer is not yet curable, that breast cancer -- despite the advances in detection and five-year survival rates (which don't mean a whole lot) -- takes 40,000 lives in the U.S. every year. 

None of this is good news. None of it is wrapped in a pretty pink ribbon of survivorship or triumph or convenience from a marketing perspective. 
METAvivor is one of the few organizations dedicated solely to funding research for Stage 4 breast cancer. It's estimated that research for Stage 4/metastatic breast cancer accounts for only about 3% of the overall funding for breast cancer research. METAvivor is looking to change that. 

In 2012, METAvivor launched its Elephant in the Pink Room campaign to attempt to bring more awareness to Stage 4 cases. A few weeks ago, Kohl's Department stores and Komen partnered up and launched a Pink Elephant in the Room campaign urging customers to shop to raise money for Komen. No word about Stage 4, no nod to METAvivor, just another commercialization of this terrible disease, apparently using lifted slogans and ideas. 

Despite many attempts by METAvivor to reach out to both Kohl's and Komen requesting they halt their Pink Elephant campaign, the only response they've received is a promise by Kohl's to add some language about Stage 4 (which they have now done). METAvivor is seeking legal opinions as it considers its options to force Kohl's/Komen to take down their campaign. 

I am a lawyer, but copyright is not my area of expertise. Without referencing some really old textbooks of mine, I don't know if what Kohl's and Komen have done is illegal, but I know it leaves a pit in my stomach. It feels wrong and shady, not to mention -- really? Another "shop pink" drive? I'm not the only one disheartened by this latest launch on behalf of "awareness."  Tell me, what do you think?