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Apr 7, 2013 10:53AM
Apr 7, 2013 10:54AM
dogeyed, I'm not sure which study you are referring to on page 1, but I wouldn't draw the same conclusion that you do from your observations on this board, "that so many ladies who had lumpectomies wound up getting a mastectomy anyway".
Most women who come to the board for support during their diagnosis and treatment period end up leaving sometime after their treatment is done. We never hear from most of these women again, which is a good thing because it probably means that they have moved on from breast cancer and are happily off living their lives. But if someone does have a recurrence, or if for some reason they decide later to have a MX or BMX, that's when they will come back here. If they valued the support they got at the time of their original diagnosis, they'll want to get that same support again as they deal with anything new that develops. So the women that we see coming back for MXs after a lumpectomy don't represent all the women who've had lumpectomies; they are just a very small subset of that original group, but they are the only ones who come back here.
Similarly, if you read this board, you'd think that most women diagnosed with BC have a recurrence. Of course that's not true - most women do not have a recurrence after their initial treatment - but it's only the women who have a recurrence who come back here. So we read lots of posts from women who have a recurrence 2, 3, 5 or even 10 or 15 years after their initial diagnosis, but we don't see many posts from women who were diagnosed years ago who come back and say "Look at me, I'm all these years out and I'm doing great!". But in fact the second group, those doing well, is vastly larger that the first group, those who've had a recurrence.
As for doing research on this site, as someone with a professional research background, unfortunately I can tell you that while there might be some interesting findings, the research would by no means be reliable or meaningful or in any way accurate. We are a self-selected group - women who are diagnosed with breast cancer who choose to come onto the internet to discuss it. Although we are a very diverse group, demographically we are not representive of all women who get breast cancer. I suspect we skew differently in terms of age and possibly in terms of where we live. Then, if the Mods were to post surveys, only those interested in the topic would reply. So there's more self-selection. If there were to be a survey that asked "do you blame your BC diagnosis on any drugs you may have taken?", you can bet that everyone who does blame a drug would reply, but most of those who don't blame a drug would probably pass the survey by. As a result, the findings would not be accurate at all.
The other problem is that asking questions about habits and lifestyle and enviromental impacts of where people live, without understanding more about the individuals who answer the questions, doesn't tell you anything. There are so many possible influences on breast cancer risk, and you can't reach any conclusions about any one risk factor without trying to equalize all the other factors. You can't conclude that a particular drug or food or environment factor is harmful without understanding whether the women who appear to be affected by that drug or food also had a family history of breast cancer, and/or took birth control or HRT and/or had a fatty diet and/or are overweight and/or have extremely dense breasts, etc. etc.. To try to separate the effect of one risk factor from all the others is a huge undertaking, requiring a very large sample size and a long period of study. There are many studies that have been done that have tried do that, but the results are always presented with words of caution and comments that the conclusions drawn might not be fully accurate.
It does seem a shame to not be able to take advantage of the group we have here, but unfortunately the group here is not representative of all women with breast cancer so whatever we find out from us won't necessarily be accurate at all.
“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke