Archive for October, 2014

posted by Amy on Oct 11

On September 27, 2014 I went to the Living Beyond Breast Cancer annual fall conference in Philadelphia. I got a travel grant which waived the registration fee and will reimburse me for my airfare, and I stayed with friends in town, so it was a free trip. Later I learned that the Susan B. Komen Foundation funds the travel grants. I have concerns about Komen, “Big Pink” breast cancer “awareness,” the politicization and commodification of breast cancer, etc., etc., but it was lovely to get a free trip to the conference, so I’m either a hypocrite or a typical human being, fully capable of holding two conflicting convictions at the same time. Or maybe those are two ways of saying the same thing.

The sessions I attended were informative and worthwhile. I met some great people. I reconnected with a seminary classmate who is now also a member of the club no one wants to join. That was a very nice surprise. There were over 500 people there, so it was busy and big. One of the oncologists who spoke specializes in treating young women who have breast cancer. That seems to be an expanding category, and it’s pretty scary. Living Beyond Breast Cancer seems to be an all-around wonderful organization. Their site is chock-full of helpful information. They do seminars all the time. The conference was being live-streamed, and the videos are still available online. I am glad that LBBC exists, and I am grateful for all that they do. The presenters at the conference were top-notch. I’m glad I went.

But I’m kind of crabby about the whole pink ribbon culture, and I’m impatient with the public image of breast cancer. I didn’t realize how touchy I am until another participant innocently asked me if I’m a survivor. I should have just said yes and let it go–she was just trying to make conversation–but the “survivor” label pisses me off. I don’t like the implication that I’m in a “battle” that can be “won.” Some people don’t even consider me a “real” survivor because I have late-stage breast cancer and will presumably succumb to it at some point. In other words, I’ll “lose.” As if I had any power at all to change that. As if I could just cop a positive attitude, close my eyes, nod three times and make it go away. Bah.

Supposedly, breast cancer is a non-political “cause” that everyone can get behind, and everyone understands. Nothing could be further from the truth. Because of the Komen model of “awareness” and “early detection,” as well as the organization’s very flexible thinking about who might be an appropriate partner, the public face of breast cancer is severely distorted. Big Pink wants money any way it can get it. Komen has gone from being “for the cure” to being “for itself.” This is not specific to Komen. Most organizations experience that kind of mission creep. But the marketing of breast cancer makes me angry. To raise money, Big Pink first exaggerates your risk of getting breast cancer, then plays down your risk of dying from it. A one in eight lifetime risk of getting it does not mean one in eight women (and a few men) will get it. (Go to¬† for a complete explanation of the “1 in 8″ figure). And early detection turns out to have virtually no effect on overall survival in developed countries. U.S. statistics are a bit hard to track, because of the way breast cancer is classified, but something like 20% to 30% of all people diagnosed and treated at an earlier stage will eventually get to Stage IV, which is almost 100% fatal, and 5% to 10% are Stage IV at the outset. That means at least one-fourth, and maybe far more, people who get breast cancer will die from it. The death rate has started to edge downwards, but that is from better treatments, not early detection. The only thing early detection does is enlarge the amount of time you know you have cancer. Those are not happy, victorious, triumphant, rite-of-passage facts, so they get buried in the avalanche of “awareness” every October.

It isn’t cancer in the breast that kills you. Breasts are not vital organs. It’s when it spreads to distant organs (including the brain) that it becomes deadly. So real “awareness” is not about saving “hooters” or “ta-tas” or “boobies.” It’s about a deadly killer that takes close to 40,000 lives every year in the U.S. and is the number one cause of cancer death worldwide. Many parts of the world don’t even have Tamoxifen. Scratch that. They don’t even have pain medication for people who are dying of cancer. And here in the U.S., poor women, uninsured women, and African-American women all have far worse outcomes than white women with insurance. Breast cancer highlights all the race and class health injustices and disparities that exist today, but nothing you hear in Pinktober is going to remind you of that. The inconvenient truth is that people die from this disease, and no matter how many pink ribbons you wear or pink-themed walks or sleepovers you take part in, that won’t change without science.

Dr. Clifford A. Hudis, who led a session on treatment of metastatic breast cancer at the conference, made the best point of the day. He said the thing that makes this country great is its scientific achievements, and the funding for the National Cancer Institute has not been increased in ten years. Its annual budget is a pitifully small amount–less than we blow through in a few days of bombing Libya or Syria or Iraq or occupying Afghanistan. Cancer affects almost every one of the 330 million people in the U.S. We should be spending a whole lot more money figuring out how to deal with it. Dr. Hudis also said that the cost of a breast cancer drug does not correlate with efficacy or number of side effects or any other drug-related criterion. The number one predictor of what a cancer treatment costs is the year it was approved. We should be investing significant public funding and brain power into hard research and drug development. Breast cancer is a public health issue. It isn’t a “cause.” Getting people to take walks or buy pink tschotskes is pointless and stupid.

One way to look at a gathering like this is, “We may all be different in terms of age, race, social class, type and stage of disease, and so forth, but we all know what it’s like to have breast cancer, and it’s great to have that bond.” I don’t see it that way. In 2006 I went on a week-long, 450 mile bike ride in Colorado called Ride the Rockies. I had no illusions that all 2,000 of us who signed up for it were all alike–one look around proved that was not the case–but it was cool to spend a week riding a bike and camping out with 2,000 other people who thought that was a fun way to spend a week. We all had our own definitions of fun, but we were all riding bicycles along the same route. The “breast cancer journey” isn’t like that. The vendors in the sponsorship area that we had to pass through at the LBBC conference–like running a gauntlet–proved that. No, I don’t need lymphedema sleeves, though it’s nice to know that those who do need them can get pretty ones. No, I don’t want a pink ribbon refrigerator magnet. (I’m not sure anyone was actually selling those, but there was a general impression of trivialized kitsch about some of the booths.) I don’t need a mastectomy bra. And, really, who needs to know about a private, for-profit cancer treatment business that does none of its own research but does engage in quackery and snake oil? We don’t “all know what it’s like to have breast cancer.” Some of us have great doctors and some don’t. Some of us have responded well to treatment and some haven’t. Most have had surgery, chemo, and radiation, but not all. Some of us are doing well and some are not. Breast cancer isn’t even a single illness. It is at least fifteen different diseases, with different characteristics. But it bears repeating: at least one-fourth of the people who get breast cancer will die from it, and not because they missed a mammogram or didn’t have a good attitude, but because there is no cure for metastatic breast cancer.

This is my fourth October since my breast cancer diagnosis. I used to buy the dominant narrative. Heck, I own a “Race for the Cure Team Captain” baseball cap. Now I see that the pink haze obscures the seamy underbelly of for-profit health care, especially pharmaceutical research, and of unequal access to health care. Genentech makes all three of the drugs I’m on right now, and they are very, very expensive. (Genentech didn’t have a booth at the conference, but they did give me a lovely white journal in the goodie bag, and I appreciate both the gift and the fact that their drugs are keeping me alive). But I’m not a “survivor” or a “warrior” or brave or noble or anything. I’m a person who has a disease that far too many people get and far too many people die from.

The last LBBC conference I attended was also in Philadelphia, in the spring of 2013. It was specifically about metastatic breast cancer, and I saw my friend Denise there. She and I met through an online support group for people with our specific subtype of breast cancer. She died not long after that conference, about a year ago. I felt her absence keenly.


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