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May 31, 2009 10:00AM
iwannabefree, it's a shame that the oncologist said that to you. And while I believe that she is technically correct, I don't think that she's right about your particular situation. I'm done a ton of reading up on the issue of DCIS conversion to invasiveness. From all that I've found, I would agree that on average, about 30% of DCIS cases may eventually become invasive. But that's an average. Someone who has a small amount (<1cm) of lower grade DCIS has a risk that is likely much lower than 30%. But for someone who has 6cm+ of grade 3 DCIS that is ER-/PR-, the risk that this DCIS will eventually turn invasive is probably 70% or more. This doesn't mean that a lumpectomy wouldn't be sufficient, if the margins are very large and all the DCIS is removed. But with 6cm of DCIS, that's hard to ever know. And here's something else to keep in mind: The oncologist is right that DCIS shows up in autopsies all the time, but what no one knows is how long that DCIS was present. When did it first develop? DCIS tends to be slow growing so if the DCIS found in an autopsy was only there for 1 year or 3 years or even 8 years, it might not have yet had the time to convert to invasiveness. But that doesn't mean that it never would have. So if you are 85 and you are diagnosed with DCIS, it might be very safe to not remove it. But if you expect to be around for decades more and you are diagnosed with high grade DCIS, the autopsy studies are a useless indicator.
By the way, I had 6cm+ of grade 3 DCIS - and mine had already started to become invasive - I have a microinvasion in with my DCIS. What's really interesting (and very concerning to me) is that because a microinvasion changes the diagnosis to IDC Stage I, all of us who have DCIS with microinvasions are not included in the DCIS stats about the % of DCIS that eventually becomes invasive. So that immediately increases the % of DCIS that becomes invasive by about 13%.
So, please don't feel that you did the wrong thing in having a mastectomy instead of a lumpectomy. You tried the lumpectomy first and had dirty margins; with that amount of DCIS, most surgeons would then recommend a mastectomy rather than a re-excision. My situation was exactly the same and that's how I ended up with a mastectomy too. For some of us, a lumpectomy isn't an option (or a reasonable option).
Having said all that, to Shannon's question, for those who do have a viable choice between lumpectomy and mastectomy, I definitely do want to support the point that it's important to not underestimate the feeling of loss from a mastectomy. Certainly some women don't experience this at all. Other women experience it immediately after surgery. But from what I've seen here, I think most don't experience it until some months - or even years - after surgery is done and treatment is completed. Once you are no longer living with breast cancer (and the fear associated with that) every day, you realize that breast cancer has made a permanent change to your body, and for most of us, this is not a change that we would ever have wanted or chosen for ourselves. This isn't to say that a mastectomy or bilateral isn't the right decision for some women, but in making the decision, you really need to consider the long term implications, in terms of how it will permanently change your physique and your life. So I think your approach, taking this in steps, makes perfect sense. See what happens with the lumpectomy, and see how you feel about it then. Good luck to you!
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