Trifecta!

Three studies by three different authors at three different Universities using three different populations of women and published in three different--all prestigious--journals in the last three years all showing that regular exercise AFTER a breast cancer diagnosis reduces your risk of dying by about half. Can you hear me now?

The most recent, by Melinda Irwin at Yale University and her colleagues, was published in Journal of Clinical Oncology in late August 2008. Survivors--take charge of your own health; oncologists--recommend exercise to your patients; and insurance companies--reimburse these efforts. It's good science, it's good medicine, it's just plain good.

Stand Up 2 Cancer

I was ready to be cynical about tonight's broadcast, but found myself, instead, genuinely moved. The efforts of the entertainment industry, when focused on something worth focusing on, can move mountains. I hope they raised a boatload of money. And I am thrilled that they talked about the "long tail" without nary a mention of a pharmaceutical company. Thank you major networks, thank you celebrities, thank you America for putting aside your politics to focus on something that, as I said last summer, is the "equal opportunity opportunist." Red or blue, hockey or soccer mom, Volvo or snowmobile owner, gun toting or latte sipping, cancer doesn't play the culture wars. Neither should you. For the many brave women I know at the Studio who fight everyday with courage and grace, for the larger Studio community that envelops and supports you, for every person out there who has been touched by this disease: we are stronger together than we are apart. That's a bridge to somewhere, a place where people don't live with the sword of Damocles hanging over their heads anymore, a place where Western science and Eastern wisdom find common ground, a place where money doesn't determine the quality of your care, and a place where people know they are welcome no matter what kind of stripe they wear. Stand Up!

She's B-A-A-C-K!

Hi readers! I'm back, sort of. So many things are happening right now I just couldn't stay away. I know you are anxious to hear updates on the Studio, cancer research, and more, so stay tuned for a flurry of posts over the next few days.

I've missed you.

I Need a Sign

Happy New Year dear gentle reader. I cannot believe it has been three weeks since my last post! I guess that indicates how busy I've been with getting the studio ready to go at the same time that I have been trying to provide some semblance of the holidays at our house. I hope your holidays have been merry and bright. We've been blessed to have some real snow this December. Some days it has been positively magical.

Speaking of things extraordinary, I have to share with you something that happened to me this morning. I'll begin my recounting some of the lyrics from a song that was popular awhile back, "Calling All Angels," by the band, Train. The song begins, "I need a sign to let me know you're here." And then, a little bit later--"I need a hand to build up some hope inside of me." I loved the song from the minute I heard it and I have it on both my MP3 players--and this was before cancer.

So I think I got my sign . The context is that Saturday night I drove back to St. Paul from Wisconsin, where we had spent the day celebrating the season with my husband's family. It was spitting snow the entire drive and it was very foggy too. So I was preoccupied with the windshield-washer fluid and did not pay the gas gauge any attenetion. Then this morning, my son, Aaron, and I had to rush to church (as usual!--my husband leaves earlier because he sings in the choir) and just as we rounded the corner to the church, I ran out of gas. I have never run out of gas in my entire three-decades long driving career! Aaron and I were able to smoothly coast to a parking space RIGHT IN FRONT OF THE CHURCH. I swear I am not making this up. I felt like the entire heavenly chorus had opened up and hit me over the head with a large blunt object. How could I have been so obtuse??? Of course, everything with the studio is going to work out fine!! I just needed a little reminder that there are larger forces at work that are mightier than I am. What a relief to know that I'm not in this alone.

I am crying as I write this. It is the most spiritual experience I have ever had. How weird is that? Who'd 'a thunk that running out of gas could be so lovely? I hope that everyone out there gets to feel something like it: it was so profound that I cannot convey it adequately. You definitely will know when it happens to you, though. Just be open to it.

A Voice in the Wilderness No Longer

One of our scripture readings at church this morning comes from the book of Matthew, chapter 3. Here Matthew recounts John the Baptist's echoing of the prophet Isaiah's words about crying out in the desert wilderness. John's point is that soon, very soon, Jesus is coming. And Isaiah's voice will no longer be lonely; what he foretold is about to happen.
Isaiah wasn't longer around to feel vindicated by Jesus' birth. Many of us who have been crying in the wilderness about breast cancer, weight gain after diagnosis, and poor outcomes these last few months and years, however, are still here. On Friday, we were vindicated, meaning that the mass media finally picked up on the research findings we have been talking about. The news media's attention was spurred by a press release from the American Association for Cancer Research from its Philadelphia meeting last week. A paper presented at its conference showed, uing new data on thousands of women with breast cancer, that weight gain after a diagnosis ups your risk of dying from the disease substantially. USA Today and MSNBC picked up AACR's press release, and it is sure to find its way into many women's magazine.
As my previous post argued, it is probably not weight gain per se that is at work in these findings. My worry is that the results will be taken as yet another reason to go on a diet instead of making the more lasting, but more difficult, change to a healthier lifestyle in which sensible eating is combined with lots and lots and lots of physical activity. I was pleased to see, however, that in USA Today's reporting, the results of the AACR paper were presented along with the information from the Holmes et al. study in Journal of the American Medical Association a couple of years ago about exercise being key, not the number on the scale. The problem with weight gain after a diagnosis is not the pounds, but the unfavorable changes in body composition that weight gain signifies. Increase lean muscle mass and the pounds will drop off, maybe more slowly than you'd like, but be patient. The rewards will last for years beyond that pair of pants you are desperate to fit into.
Thousands upon thousands of women will be reading about this research over the coming months. As you already know, Friday's AACR news is not really news, as the basic result has been lurking in the journals for years and is a prominent item in Survivors' Training's "Fact Sheet" that we distribute free on the website. It's significant, nonetheless, because the information has gone from academic finding to public knowledge with the media's coverage of the AACR paper. More and more women will be asking their oncologists about these findings. More and more oncologists will feel compelled to say something about weight gain and exercise when they discuss prognosis with their patients. A revolution is about to happen in cancer care in the Twin Cities, a revolution that we are proud to have kindled to a significant degree. The Survivors' Studio website launches this week. Stay tuned to find out more.

Trump Card, or, why dieting is not the answer

Adding even more credibility to our message is a new study released today and published in the Journal of the American Medical Association. The findings can be simply stated: Exercise as if your life depends on it--because it does! The researchers compared whether your weight (or BMI or waist circumference) or your fitness level mattered for your mortality. When examined one at a time, both were important, but when the two were considered simultaneously, fitness trumped fatness very decisively. (In social science lingo, being overweight is not statistically significant once levels of exercise are controlled for). In other words, if you exercise regularly, it doesn't matter whether you are overweight; you'll live longer than a skinny coach potato. Interesting, this is the same conclusion that was reached in the study of breast cancer survivors published in the same journal in 2005. The benefits of exercise for surviving breast cancer were independent of BMI. What's important is that you move, move, and move some more. And maybe lift a few pounds over your head.
One of the workshops I am going to teach at the new studio opening next month is called Get Real: Fitness for Real People Living Real Lives. And yes, it will feature messages you've heard already about taking the stairs. But it will also offer ways for you to give yourself permission to exercise. For many women, including me before my cancer diagnosis, taking time for exercise means taking time for yourself. And so it feels selfish. We need to change our attitudes as much as we need to change our habits. And we need to change the habits of some other people too, like doctors. That's why I'm a huge supporter of the Exercise is Medicine campaign: Ex really is Rx, and doctors are key messengers.

Advent

Today is the first Sunday of Advent, a time when Christians all over the globe begin a season of waiting and hoping, expecting and anticipating. It is a very powerful lesson in delayed gratification, a virtue not celebrated much anymore in today's 24/7, want-it-yesterday, world. Some of you have been waiting patiently for my big announcement and so here it us: Survivors' Training will open the first ever in the Twin Cities Survivors' Studio in January! Designed to be a place of health and healing for women on a cancer journey, the studio will offer innovative fitness classes, informative seminars, and integrated services for the needs of body, mind, and spirit. All this will come with a little bit of fun and sass as well because that's my style. Good information doesn't have to be boring! More details will be available soon when the new website launches. Please tell your friends about it and send them to us. It is going to be a very special place.

Blessings

Happy Thanksgiving! It has been a few weeks since my last post and I hope you haven't given up on me. I have been very, very busy working on something new and exciting. I will tell you about it in seven days so please, please check back on December 1st.
It has been one year since my surgery, and what a difference a year makes. Last year's Thanksgiving was the day before my double mastectomy, and I was not in the mood to be grateful about anything. I had no interest in feasting on the usual Thanksgiving fare, most especially the turkey, given its association with the word "breast": I was about to lose the two of mine forever. This year, however, I was able to contemplate the whirlwind of the last 12 months with some perspective and count my many blessings. It is staggering the number of people who have been there for me on this journey. There is a special place for them in heaven and I can only hope they know how grateful I am. There might even be a place for the one or two who let me down ("Forgive them Lord..." This was one of our scripture lessons this morning). And my life has been so enriched by the fellow travelers I have met along the way. The shimmering grace of other cancer survivors leaves me awestruck, especially because I'm not nearly so saintly most of the time. I miss my original breasts very much and will never get used to the pretend ones. I'm plenty resentful of all those carefree, non-survivors who take so much for granted. And I have deep regrets about some of the ways I used to spend my time in my own carefree, pre-survivor days. What a waste! But I think God has granted me a "do over," or at least, I'm going to act as if S/He did. This coming year is going to be the year of living unregretfully. And eating Turkey again.

Anger Management

I was enraged and insulted by the front-page article in yesterday's Star Tribune that reported the results of a study examining trends in the use of bilateral mastectomies for breast cancer. Not only was the factual reporting incorrect, but the quotes from the University researchers involved in the study (who happen to be from the University of Minnesota) reinforced the impression that women who choose this procedure are silly ninnies, overacting to a threat that is basically non-existent. As a person who elected to go this route, I took umbrage at this protrayal, and, for the first time in my life, I fired off a letter to the editor.

I don't know whether they will print my letter or not, but I reproduce it here for you to see. Let me know what you think.

I received a breast cancer diagnosis on November 1, 2006. Based on the nature of my diagnosis and my age (45) at the time, I decided to undergo a bilateral mastectomy, the procedure that was the focus of your front-page article on October 24 ("More women who have cancer in one breast have both removed"). I take exception to the factual reporting done in the article as well as to the overall impression it leaves with your readers based on this (incorrect) information, reinforced by the quotes from the University of Minnesota researchers involved in the study (which was published in the Journal of Clinical Oncology). The article states that women who choose this more "aggressive" procedure do so, "even though the risk of developing cancer in the second breast is less than 1 percent." This is a clear misreporting of the real statistical risk, as the first line of the research article indicates. According to the authors of the study, “the annual incidence of contralateral breast cancer, about .5 to .75%, does not change with time.” The cumulative risk of developing a cancer in the second breast, therefore, can be quite substantial if the first breast cancer occurs at an early age. For example, a women diagnosed at age 40 with early-stage breast cancer has a very good chance of surviving 20 or more years. In that 20 year period, she faces a 10 to 15% chance of developing breast cancer in the originally unaffected breast. In addition, she would need to undergo once or twice a year, a mammogram or MRI, each episode of which requires a trip to the clinic or hospital, exposure to the infectious diseases therein, often crippling anxiety regarding what the test might reveal, and all manner of petty aggravations including, but not limited to, traffic, parking, provider delays, and additional co-pays. Furthermore, there are many factors, many of which are not discussed in the article, that substantially up the baseline risk of contralateral breast cancer, including family history (not limited simply to BRCA gene mutations), lobular tumor histology, and previous chest radiation. If one examines the results presented in the article, the women choosing the more “aggressive” procedure turn out to be precisely those women who face the most cumulative risk, including younger women. Genetic or family risk status was not ascertained, but it is estimated that heredity or family risk plays a role in perhaps 30% of breast cancers.
Although women may not incur survival advantages from a double mastectomy, the decisions they make regarding treatment are not ill-considered as implied by the article. Yes, women making these decisions are “vulnerable,” but the fact that more women are choosing to take a more extensive surgical route may indicate that they have rationally weighed the costs of not having the procedure, which are numerous, versus the benefits of having it, which are not limited solely to surviving the cancer. The choice women make may not agree with what their surgeon recommends, but he or she doesn’t have to live with the consequences of that decision for 10, 20, or 30 years either.