[Mtngrl]

It's not at all clear that early detection prevents metastasis or improves the mortality statistics from breast cancer. Several well-designed studies show that it has no effect, including one large study last year of matched populations in Europe. Earlier detection had zero effect on the death rate. The recent drop in mortality is from better treatments, not from early detection.

I hate hearing the five year survival rate quoted. It simply doesn't mean breast cancer is curable if caught early. Some are. But some never would have been a problem, and people with that kind needlessly go through the expense and trauma of treatment. And some metastasize sooner or later (often sooner, as many of us on this board know) no matter when they were first diagnosed and treated. We don't know enough to tell which types are curable, and which ones never would become deadly.

I've seen varying numbers, but this is approximately correct: Twenty to thirty percent of early stage cancers recur at Stage IV. Five to seven percent of cases are metastatic at initial diagnosis. So twenty-five to thirty-seven percent of people with breast cancer will end up metastatic. A tiny fraction (1 to 3%) will experience permanent remission. A few live a long time--twenty years or more sometimes--with stable cancer. Some even live long enough to die from something else. The rest will die from breast cancer, half within about 30 months of the Stage IV diagnosis and about 85% within five years.

I'm not just sitting around waiting to die, and neither is anyone else I know who has metastatic breast cancer, but 39,000 people die from it every year in the U.S.

The cause marketing folks don't want that known, because it's a downer. It would interrupt their cash flow. They are not trying to cure cancer. They are in the cancer fundraising business. The fundraising has become an end in itself. They've lost sight of their mission.

People used to walk or demonstrate to effect change in the system. Early breast cancer activism was modeled after AIDS/HIV activism. The first ribbon (a kind of salmon color) was created by a woman who, on her own, sent it to people suggesting they write their elected representatives to demand change.

The "Big Pink" organizations "partner" with the companies that profit from the status quo. I'm not saying the status quo is bad. It's keeping me alive, and I'm grateful. But take Eli Lilly, for example, which makes breast cancer medicines and also makes rBGH, the bovine growth hormone that stimulates milk production and may increase the risk of breast cancer. Or cosmetic companies, which sponsor big fundraisers but put known carcinogens into their products.

There's also a problem with putting different cancers into silos. We on this forum have breast cancer, so we care a lot about that, but the overall "war on cancer" is not being won either. (Again, prevention is the best thing. Refrigeration brought a huge drop in stomach cancers. Cutting back on cigarette smoke exposure has reduced the lung cancer rate dramatically.) Stepping back and studying environmental factors, clusters of cancers, genes that may predispose people to more than one cancer, etc. could be productive. So could a regulatory system that put safety ahead of profit.

People want to help. They care. Getting them to buy something with a pink ribbon on it makes them feel as if they've made a difference. In some cases they do, and the solidarity and sense of community that the events generate surely does some good too. But the whole pink ribbon phenomenon is unregulated. It's very unclear where all the money is going.

My big beef with Komen is they're still telling the story that early detection is your best chance of being cured. No, not getting it in the first place would be the best thing. With up to 40% of people who get it eventually dying from it, it's not exactly a curable cancer.

So we get one day a year to remind people of that, or to think about what we are going to do about it in the time we have left.