Past post from Beesie on understanding DCIS

Mom2Two:  I know that you put this question to Beesie so I hope you don't mind if I throw in my 2 cents worth..

This arena wouldn't be considered a scientificly balanced environment to get any valuable scientific information from.  Anyone with a particular view point could be one here more than once which could cloud the outcomes.  And there is no way to do a "control" group so that environmental issues that influence the outcome could be monitored for "purity".. 

This is however a great place for women to get information if they have not yet made their decisions..  They can go to several different posts as well as discussion areas and get a multitude of information from a multitude of individuals before they make their decisions.

I try to challenge my opinions before I place them, for example am I trying to reinforce the decision I've already made or am I trying to put up as much information about my experience so that another individual might benefit.

Mom2Two,

I agree with what Deirdre said.  The women on this board are not a representative sample.  In addition to the risk that women may be swayed by the opinions of others, the fact is that people tend to seek support when they are having a problem, so on this board we tend to have a greater than average share of women who are having difficulties or concerns of one sort or another. For example, someone who has a recurrence will come back to the board; someone who doesn't have a recurrence won't.  This means that the percent of women on this board who've had recurrences will be much higher than the average.  Similarly, I've seen it said a few times recently that it seems that most women who have a single mastectomy in the end choose to have a prophylactic mastectomy.  This may appear to be true if one reads the posts on this board, but it's actually not true at all.  What is true is that if someone has a single mastectomy and then decides to have a prophylactic mastectomy at a later date, she may come here for support.  All the other women who have single mastectomies and don't have any further treatment never come back here. So the women on this board are far from a representative sample.  That's why I trust the words of a doctor at a major cancer hospital - someone who has seen thousands of breast cancer patients - more than I trust the anecdotal evidence here. And that's why I trust the results of research studies more than I trust what any one person says here.  Sharing our individual stories and how we made our own treatment decisions can be very helpful to others, but they are not representative of anything more than that one individual.

Because the women on this board are not a representative sample of breast cancer (or DCIS) patients, one of my concerns is that someone newly diagnosed who comes here may not be getting a realistic picture of what their risks really are.  This is why I always try to direct women to their surgeons and oncologists to get the information that is relevant to them, based on their specific diagnosis.  Make your decision based on the facts of your case, not on what someone else did or what someone else says.  Similarly, just as Deirdre said, when I explain any decision that I've made about my treatment, I am careful to say that I fully understand that someone else might look at the same information and make a different decision - we all see things differently and what I consider to be "acceptable" risk might not be acceptable risk to someone else.  I know that my decision was right for me; I would never suggest that it's right for anyone else.

So can we agree that for many DCIS situations a MX is not medically necessary AND a lumpectomy + radiation + Tamoxifen is also not medically necessary.  What is medically necessary is to pick one of the two? Futhermore, there are cases of DCIS where a MX is presumably medically necessary, where the other approach would not be medically appropriate --- e.g. DCIS scattered around the breast, or too small or no margin.  I don't know if there are situation where an MX would not be medically allowable.

I thought this was a very good description of comedo necrosis.  I don't even think anyone ever explained about the calcium part of it

Amy

http://abcnews.go.com/Health/OnCallPlusScreeningAndDiagnosis/story?id=4803929

Yes - I thought it was a concise and easy to understand explanation - which is sometimes hard to find!

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