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Nov 28, 2012 12:30PM
Slate, how interesting about the second opinion.
With the initial diagnosis of 3mm of grade 1 DCIS, it was certainly questionable as to whether rads were required / would provide much benefit. With this 2nd opinion, saying that the diagnosis might actually be ADH and not DCIS, for me, it would push rads out of the question.
If rads had no side effects, that would be one thing. But rads does have side effects and at this point it appears to me that the risks and side effects from rads, no matter how small they might be, are verging on outweighing any benefit that you might get from rads. Rads won't provide any benefit if the lesion was ADH. And if the lesion really was DCIS, with such a small low grade tumor and clear margins, it's likely that your recurrence risk is already in the low single digits, even without rads.
The reason that you and your doctors are having this discussion/debate is because you were initially diagnosed with DCIS. But as you know, there is a lot of debate about DCIS itself, whether DCIS should even be considered breast cancer, whether DCIS is being over-treated, whether DCIS always even needs to be removed. I worry whenever this discussion comes up because there are so many different diagnoses of DCIS; some are very aggressive and very much like breast cancer and do need to be treated and treated seriously. Too often lately we've seen women come to this board with serious DCIS diagnoses who think that because it's DCIS, they don't need any treatment. But your case is not one of those. Your case, even if your diagnosis really is DCIS, is one of those that probably won't be considered breast cancer in 5 years or 10 years, once all the dust settles. And if the diagnosis really is ADH, then it's not even breast cancer now. If it were me, that's what would make the decision clearer now.
As for Tamoxifen, this is a different issue, since Tamox is sometimes prescribed to women who have ADH or other high risk conditions. It's also sometimes prescribed as a preventative for the remaining breast, to women who've had DCIS and who've had a single MX. So there are reasons to consider Tamoxifen, whether your diagnosis was DCIS or ADH. But you have time on this. I had a single MX and to my surprise, my oncologist actually prescribed against Tamoxifen for me. I did a lot of reading up and ended up agreeing with his recommendation. But he did tell me that I could start to take Tamoxifen at any point in the future. As a preventative for someone who is high risk, you don't need to start it now; you can start it at any time. So you can do your homework, understand your risks and the risk reduction benefits of Tamoxifen, understand the risks and side effects of Tamoxifen, and then decide to take it or not.
ballet and BL, thanks for the explanations of the MSK model. I still find it odd. I don't see how the number of excisions can be equated with the size of the area of DCIS, maybe because I've seen so many different situations come through this board over all these years. If someone is large breasted and if her DCIS showed up clearly on a mammo or MRI, it's very possible to remove a 5cm area of DCIS with a single surgery. On the other hand I've seen cases where someone else whose screening was less effective might need 3 excisions for a much smaller tumor. And while I understand that women who have the highest risk are more likely to have a MX, I know that there can still be huge variations in recurrence risk among women who have lumpectomies, and those differences don't seem to be reflected in this model. For example, there will be a big difference in recurrence risk between someone who had a 3cm area of grade 3 DCIS with 2mm margins, and someone who had a 0.5cm area of grade 2 DCIS with 10mm margins. Yet the MSK model gives the same result in both of those cases. It just doesn't make sense to me.
Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke