[Debbie L.]

Joe and all,

This is not "advice". This is evidence. Saying that BSE is not a useful tool is not saying that there's no value in finding our breast cancer. The value in finding our breast cancer is that treatment works (saves lives) for some of us. Many of us found our breast cancer by some kind of palpation. That is not the same as saying that formal BSE makes a difference to survival from a breast cancer diagnosis. It does NOT make a difference - at least two excellent studies say that. FINDING a breast cancer is not the same as SURVIVING a breast cancer, alas.

As many in this thread will attest to - finding their breast cancer did not r/t to saving their life. If someone has stage IV breast cancer, the hard news is that they are likely to die of that disease. The good news is, of course, that they are likely to live many good years WITH that diagnosis. But the hard truth, that is often not recognized in the October hype, is that there is no cure for stage IV breast cancer.

It gives me no pleasure to say that. I am not trying to stir up controversy. I am trying to stir up interest in promoting more research so that more lives can be saved. If we buy into the complacency and easy message of "early detection" (which is becoming more and more a misnomer, as we learn that it's much more about the biology of the cancer than about the SIZE or even perhaps the SPREAD (as far as axillary nodes)) of the cancer, we are settling for status quo. Status quo is that many of our members are DYING, of breast cancer. They are dying because we do not (yet) know enough to prevent these deaths. We would of course first choose to prevent these diagnoses - to somehow learn how to prevent the development of breast cancer altogether. That's probably the most unrealistic goal - cancer is part of life, and would occur occasionally in even the most sterile and environmentally pristine world. But we can certainly reduce the incidence by cleaning up our world, and learning more about best-practice lifestyles.

Then there's diagnosis and treatment. We are making small steps toward personalized and less-toxic treatment but we are so far from really achieving that goal. Martine Piccart-Gebhart's opening address at ASCO/Breast last Thursday so clearly assessed where we are with "individualized" or "personalized" treatment. NOT THERE YET. She advised "modesty" before we make that claim. She used HER2 as her example - we claim it's a marker for Herceptin yet only 1/2 of those who receive Herceptin benefit from it.

No one is saying that it's not of some benefit to find a breast cancer tumor and begin treatment. But if you were a lay person listening to the October hype, you'd assume that between BSE (which has NEVER been shown to improve survival, despite good studies) and mammography (still an area of great controversy as to its value) breast cancer is under control. We on this list KNOW that it's not under control. If it were, we would not be hearing stories like Marie and Ed's, or any of our stage IV sisters who struggle to live with metastatic cancer. We would not be hearing from "early" diagnosed people who struggle daily with the great unknown - the threat of recurrence.

I am immensely grateful that so many are living so long and so well, with a stage IV diagnosis. But I am so sad that we do lose some of these valiant people. Aren't you sad? Aren't you a little angry? Don't you want it to be better, for all of us?

If you want it to be better, then you have to stop looking at it through your own personal lens. It's NOT about "I found my breast cancer yada yada yada". It's about breast cancer still kills people. Until we can say that it doesn't, we need to push for better research and less hype. Can't you see that the pinkwashing of October is an attempt to jolly-up the "state of breast cancer"? Can't you see that the hype of October leads the public to believe that it's all under control and that we survivors are a wonderful, strong, vibrant group of people who are happy and thriving? Well, yes -- for the most part we ARE that. But we are also a group of survivors who face the uncertainty of our future, who suffer the losses of our peers, and who know that for us and for others -- BSE did not save our lives.

FINDING a breast cancer does not (alas, yet) equate with SAVING a life. The pinkwashing of October would have you believe that it does. NBCC is working to evaluate the evidence, and pushing to find better answers. I support them in that effort. If it were not for NBCC, we might not have Herceptin. I cannot believe that they are not better supported on this Herceptin-worshiping list.

I want fewer people to die of breast cancer and if I have to be a wet blanket here, to do that - well I will keep harping.

Warm and curmudgeonly regards,
Debbie Laxague