October 2013

It's October 1, 2013. Our government? Lights out.  Our culture? Splashes of pink pop up like crabgrass, from the grocery store aisles to newspaper supplements.

But the truth is out. Those most affected by metastatic breast cancer are not fooled by the government's stonewalling nor are they taken in by a commercialized illusion of cancer. They are busy with other things. Things like living.  Things like dealing with neuropathy or nausea from yesterday afternoon's treatment. Things like tracking down a researcher while juggling a child's after-school schedule, or sharing news about Perjeta, the first neoadjuvant treatment for women whose breast cancer tumors express the surface protein HER2-neu (human epidermal growth factor 2), which account for perhaps 20 percent of the 160,000 new cases of breast cancer expected this year. Things like researching second generation sequencing and asking about the differences between genomic profiling and chemo-sensitivity testing. These are just some of the things people with metastatic disease do. Some are preparing for palliative radiation therapy, a new round of chemo, others are returning home with drains and pain medicine, another has just entered hospice care. Every year approximately 40,000 die of metastatic, not primary, breast cancer. That comes to 1,000 women every day.

Everyone is changed. Our shared humanity ties us together in a sacred space.

Two weeks ago I attended the Metatstatic Breast Cancer Network's annual conference that was held in conjunction with the MD Anderson Cancer Center in Houston. There Don S. Dizon, MD of Massachusetts General Hospital and frequent ASCO Connection contributor, presented a perspective  on living with metastatic breast cancer that didn't as much resonate as detonate. That's because the words typically associated with metastatic disease aren't of the back-slapping hey, make my day variety.  In oncology corridors the frequent phrases are incurable, progressive, chronic and relapsing to the frequently repeated "many live well a long time."  

With Don S. Dizon at MBCN's Annual
Conference in Houston 9/21/2013.

In the first weeks following my metastatic diagnosis I frequently deconstructed "many," "live well" and "long time." How was many was many? Greater than 70 percent of women live a long time? 60 percent? I gnawed on my own chances.  I had little blobs of cancer in a lot of places, a tad more difficult than one big blob that could be nixed out with a scalpel or a jolt of radation. Listen, someone else's cancer is always cooler than yours.  What about a long time? Was that ten years? How about 11? Twelve sounded magnificent but 13!  Greedy and perhaps unwise. At that point in my own experience acceptance and uncertainty had not yet laid down the essential, parallel tracks through my consciousness, like the smudge of a jet stream against a fall sky.

In fact statistics on metatstatic disease, which uses information gathered from the past to project how you may do in the future, now feel absurd to me. They feel inaccurate and out-dated. Social media amplifies the difficult at the expense of underplaying the rhythms of regular life. Many out here in mets country are visually unidentifiable. We don't look sick. Tumor biology and the array of available treatments now, plus the unknown interplay between each woman's individual health, her tumor and reaction to treatment are the final arbiters of health, of lived days. All these intangibles. There are no answers, only guidlelines and decisions formed by each woman's preferences, her perception of the facts, and an oncologist's wisdom and experience in helping to guide the patient and significant other (s) through the process.

"Breast cancer sucks. Metastatic breast cancer sucks even worse," Dizon said. He wasn't swearing for an easy conference chuckle (zesty cancer crowds swear a lot)  but because it led him to what was even more important, "Feel it. Own it. Embrace it. Then move on."

Dizon uses a three-prong approach to make some order out of a disease with so many uncertainties. When oncologists say, "everyone's different," that is the truth.  Give 100 different women Femara and the range  of reported side effects will stagger you.  To keep things simple Dizon recommended three words: pragmaticism, realism and optimism.

A pragmatic approach to metastatic disease, which has stages I'm only now understanding that are not linear but cyclical, simply means being practical. "No one else has to walk in your shoes," he said. "Do what matters.  With metastatic disease it's all about you and those you love."

It's about you and those you love.  It occured to me not to let cancer screw that up, that nothing was that powerful.  "Prepare for an uncertain present, and an even more uncertain future," he said.

For me, that is where both optimism and a realistic approach play. This week I have another set of staging scans. That's the reality. Numbers and digital images may or may change my current prescription. But what Don Dizon brought home was his emphasis that being realistic does not mean ceding your independence or sense of less.  Cancer won't make me less than.

MBCN Conference Shirt Says it all.

I listened, then walked around for a few moments after his address. When you step into a ballroom full of women amd men who have lived with this illness for many years -- its peaks and valleys, months of clear scans, a body's sudden betrayal, an errant tumor marker, a treatment failure -- your perspective once again expands. It can only be so. Your eyes fill with tears.  I know who these women are now. I see them.  Yes, finally, I get it. I know each and every one would divorce themselves from this disease in a heartbeat if it were at all possible  So far it isn't. But I can feel it, own that, and embrace my life.

I wish the same for you.

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Some pertinent links for October:

1) The Advanced Breast Cancer Community, Who Are We? 
2) The power of grass roots advocacy & growth:  Metavivor, supporting metastatic breast cancer research 
3) Amazing work: Think Before You Pink
4) Takes no offense from the word no: Terry Arnold, survivor and advocate for Inflammatory Breast Cancer (IBC).  IBC is a rare (approximately 4 percent of all cases) and aggressive form of breast cancer that often appears as a rash and may not appear with a lump. It is frequently misdiagnosed. This is one case where early detection can make a profound difference.

To come:
1) ABC2 - Advanced Breast Cancer Second International Consensus - Novemeber 7 - 9, 2013
2) San Antonio Breast Cancer Symposium -  December 10 - 14, 2013

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