DCIS Diagnosis - Members with Lymph Node Dissection

no, I had a lumpectomy.  NSJ2 -- here is the excerpt from the NCCN guideline on this topic:

"Therefore, on the basis of these and other data, the NCCN guidelines recommend that women who have DCIS who are undergoing lumpectomy have no lymph node surgery and for those women who are having mastectomy that sentinel node biopsy be performed. This is because of the disruption of lymphatic pathways with mastectomy, so that a subsequent sentinel node biopsy probably could not be performed if there was invasive cancer and because we understand that when a women has in situ diagnosed by core biopsy excised, that there is about a 5% rate of identifying invasive cancer in that specimen."

This means that the primary reason they do it is in case DCIS is upgraded to IDC after MX.  

The same guidelines reference two cohort studies that found lymph reccurence (as a surrogate for lymph involvement) in .36-.86 per 1000 women (3 - 9 out of 10,000 women or .03% - 0.08%).  But, these women did not have a survival disadvantage ... 

It is impossible to have lymph node invasion if you have pure DCIS. 

If nodes are found to be positive with a finding of only DCIS in the breast, it means one of two things:

1) The cancer was accidentally placed in the nodes by a surgical instrument.  This is harmless, since the DCIS cells will not continue to grow and thrive in a situation like this. 

2) There was an "occult" invasive cancer in the breast that was never found, and some cancer cells from that invasive cancer moved into the nodes. Occult invasions are rare, and happen almost exclusively in situations where there was a large amount of very aggressive (grade 3, comedonecrosis) DCIS.

NSJ2, in your situation, with a very small amount of grade 1 DCIS, the risk that you might have had an occult invasion is probably something like 0.00001% - much smaller than what was quoted in BL's study because your diagnosis falls at the low end of the DCIS scale. In fact the risk that you might have had an occult invasion that resulted in nodal involvement is probably 0%. I know that nothing is impossible, but that's as close to impossible as anything.

I had over 7cm of multi-focal high grade DCIS with comedonecrosis.  I also had a microinvasion of IDC - a tiny tiny 1mm area of IDC. For me, with my diagnosis, the risk that there might have been another tiny invasion, one that was never found, is probably closer to 20%, or it could be even higher. This is why SNBs are recommended to women who have mastectomies for diagnoses like mine (diagnoses that require a mastectomy because of the extent of the DCIS). And sometimes SNBs are even recommended to women who have lumpectomies if the DCIS appears to be very aggressive and wide spread (although to BL's point, performing an SNB with a lumpectomy for DCIS is actually contrary to the treatment standards).

Please please, as I've mentioned a few times before, don't get all caught up in comparisons of your situation to others here. You are causing yourself so much worry and concern for no reason at all. There is such a wide range of DCIS diagnoses, and they do not all require - not should they get - the same treatment.  What would be considered under-treatment for one diagnosis of DCIS would be considered over-treatment for another diagnosis of DCIS.  

Thx Beesie and BLinthedese. I always feel a bit more calm when I read your responses. You have helped me understand better and I am sure others as well.

SaveMyBoobsp, the underarm stinging and numbness from the SNB can go on for months.  I can't remember how long I had the stinging and those really sharp searing pains up my arm, but I do remember that my arm was numb and sometimes tingly down to my elbow for about 4 months, and numb in the underarm area for 6 months.  

I had no problems with the healing of my incision site, either after my surgical biopsy or after my mastectomy.  So I can't offer any advice there, but hopefully someone else will come by who can share their experience.