Anyone else have a lumpectomy for DCIS and lump was negative?

ebie, I'm not sure how much I can help but I can ask you some questions. 

I assume that your biopsy was an excisional/surgical biopsy?  And that at least one of the margins was not clean, which is why you went back in for the lumpectomy?  Were most of the margins clean after the biopsy or did most of the margins have DCIS cells?

And with the lumpectomy, can your surgeon tell you how much breast tissue was removed?  And was breast tissue removed all around the original cancer site, or only on the side(s) where you had dirty margins?  What I'm trying to figure out is the size of your margins because that's one of the biggest determinants of what you should do next. For example, if after the excisional biopsy you had only 1 dirty margin and the rest of your margins were 3mm to 7mm, and if the lumpectomy only removed more breast tissue on the side where you had the dirty margin, then you would know that your smallest margin is 3mm.  With a 3mm margin and high grade DCIS with comedonecrosis, personally I would have radiation.  But if during the lumpectomy your surgeon removed 1 cm of breast tissue all around the original cancer site, that would mean that all your margins are at least 10mm (1 cm), and with margins that large, personally I might pass on radiation. 

Additionally, have any of the doctors told you what they think your recurrence risk is, given your pathology and the clean lumpectomy?  Many studies have shown that even for DCIS, radiation is effective at reducing recurrence risk by about 50%.  So if your doctors believe that your recurrence risk is 5%, you might feel that radiation isn't warranted.  But if your doctors believe that your recurrence risk is 15%, then you might feel that radiation does make sense. 

Given the mixed opinions, if you may feel more comfortable doing something; then the question is whether you'd prefer radiation or Tamoxifen.  Both have pros and cons.  Radiation is over with in a few weeks and then it's done.  There is a risk of side effects but it's a pretty low risk - most women make it through radiation with no problems.  The problem with radiation, however, is that if you do have a recurrence or get BC again, the next time you would need to have a mastectomy (because radiation isn't give twice to the same area), and if your skin has been compromised (it may or may not be), that could complicate reconstruction (although in most cases reconstruction can still be done).  On the other hand, Tamoxifen is something that you would have to take for 5 years, to get the full benefit.  There is a risk of serious side effects, but that risk is pretty low (about 1% - 3%, depending on the individual).  What impacts most women are the quality of life side effects - hot flashes, etc.. About 50% - 60% of women who take Tamoxifen have some quality of life impact.  The good side of Tamoxifen is that it will not only reduce your recurrence risk by approx. 50%, but it will also reduce your risk of developing a new primary breast cancer, in either breast.  Radiation doesn't do that.

So, sorry, no answers for you, just lots of questions and "if's" and "either/ors".  I hope it does help though!

Hi Ebie, you have gotten some great insight here.  I wanted to share that last September I had a lumpectomy with clear margins.  I did opt for brachytherapy radiation which was for 5 days.  Since the lesion was localized to one area they recommended the intense 5 day radiation.  I went twice a day for 5 days.  The choice to have radiation allowed me to take back some control as I felt out of control once the diagnosis was positive for DCIS.  I knew I had to get it out, a no brainer choice for me.  Post surgery, I had choices again.  I do not regret doing the 5 day radiation.  It was totally intense but I had a toddler who needed me to be back on my feet quickly.  I won't kid you, the 5 day kicked my butt pretty hard for a few weeks.  I did catch colds easily for a few months and yes, I did get the H1N1 vaccination.  That's the only time I liked using the BC card and publicly admitting I was high risk. The next choice I had following rads was Tamoxifen or no Tamoxifen.  My husband didn't want me to take it if meant all the side effects you read about.  My onc doc said I could try it and if I did not tolerate it I could stop it.  That was appealing to me.  Again, I could be in control.  I started it in October 2009 and the only real side effects I have noticed are the absence of menses (age 47) and thirst.  Radiation is not for everyone, but you may consider trying the Taxmoxifen and if you don't like it you can stop it. 

I don't carry the gene for BC.  Ironically two first cousins have had BC and they don't carry the gene either.  Well maybe, only I was at high risk as an in vitro patient for 18 months, late child bearing, etc.  They had their children at younger ages.  Have you tested for the BRCA gene?  It might give you some insight. 

Best of luck!!!  Stay strong and if you don't feel like it visit the boards.  It helped me to vent and share.