DCIS Diagnosis - Members with Lymph Node Dissection

NSJ2

Hi All

I'm noticing there are several women here who show their diagnosis as DCIS but also show there was lymphnode dissection/removal in their sigs.  Some of them show lymph node involvement as well (i.e., 1/2 nodes).

Provided the DCIS was pure DCIS, I'm confused why there was lymphnode dissection and/or how lymph node involvement was possible?

NSJ2

BLinthedesert

Those with DCIS who have a mx have their nodes tested - however, if they have positive lymph nodes then probably they have a component of IDC ... it is very very very (ok, another very) rare to have lymph metastasis  with pure DCIS (http://www.wjso.com/content/8/1/6).  If you have a mx they do lymph dissection for "sentinal" nodes -- these are the lymph nodes that are directly associated with the area that the cancer is located.  Once you remove the breast you can't find "sentinal" nodes anymore, so they are checking "just in case" IDC is missed somehow.

I hope this makes sense.

NSJ2

Did you have a SNB, BL?

NSJ2

p.s. to BL

Thanks for the response. Although it scares me knowing that. I had no idea about that with DCIS. I always thought it wasn't possible.

Just how rare is it? 1 out of a million? Percentages?

BLinthedesert

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 ... 

NSJ2

Thanks for the clarification, BL.

But not sure I understand the below thoroughly. Is this referencing women that had lumpectomies and no SNB, or no? And if so, what does the part about no survival disadvantage mean?

I guess what I'm really wondering is if I can trust my lumpectomy (final) path report of pure DCIS where I was told I didn't need an SNB.

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 ...

Beesie

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.  

Beesie

NSJ2, yes, you can trust your pathology report, even though you didn't have the SNB. You didn't need the SNB.  It would have been irresponsible of your doctor to suggest or do an SNB on you. You would have exposed yourself to a significantly higher health risk from the SNB that you will ever have from your diagnosis of DCIS. You had an extremely low risk diagnosis.  That's a good thing and that should keep you from worrying.  

NSJ2

Thanks Beesie, and again BL too. I'm just trying to learn so I'm making the wisest, most informed decisions possible.

At the time, they had to send my path specimens to New York to get a final on the pure "DCIS" Diags. The NY specialist deemed it pure DCIS which agreed with the local pathologist. But the NY specialist has in his report "itermediate" grade DCIS. I questioned that with the pathologist here, and he said he and his colleagues still deemed it low grade (I of III). So the final path reads Grade I of III.

NSJ2

Beesie

With such a small area of DCIS in a single focus and with such wide margins, I don't think you need to worry if your DCIS was grade 1 or if some of it maybe bordered on grade 2.

And one thing to add to the earlier discussion.... When you see women with a signature line that says "DCIS" and then indicates some number of positive nodes, in most cases the DCIS is wrong.  It might be someone who's preliminary diagnosis was DCIS, but then IDC was found and she never changed her signature line to reflect this. Or what often happens is that someone is told that they have both DCIS and IDC (they are often found together), and all they remember is the "DCIS" (it tends to stick out in conversation) so that's what they put down as their diagnosis. Over the years on this board I've seen hundreds (literally) of women who's signature lines say "DCIS" and then "Stage I" or "Stage II" or "Stage III".  We know that DCIS is always Stage 0 so whenever you see that, you know that there was an error or a lack of updating or maybe a misunderstanding. 

In my 7 years years here I can count on one hand the number of women who were only found to have pure DCIS but who had some nodal involvement.  Usually it's just micromets. 

NSJ2

Thanks again, Beeise. Thats what I was thinking too. That the sigs may have not been updated.

And oh, I reported my size of margins (which were clean) wrong I believe.  Was taking info from the path that read "Microscopic Description". Here's what I think they really were that show on my path under "Margins":

Margins: All margins uninvolved by DCIS; closet margin is 0.45cm from anterior margin and 0.95cm from posterior margin, with other margins greater than 1.0cm

Do they still look good to you, Beesie?

BLinthedesert

NSJ2, what I meant by no-survival disadvantage is that this nodal involvment did not result in death any more often that no-nodal involvment did.

lisagwa

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

Hi, I had a lumpectomy and CNB on Nov. 29. The guided wire was hard because of the boob squeeze, the injections of the 4 radioactive beads stung and hurt really bad. I'm on my first day of my fifth week post surgery and my incision site is still spotting. I know I'm a slow healer because of diebeties, but every time I take a shower it seems to get the one area a little soft. They did the lumpectomy and the SNB out of the same incision, my underarm is still sore and my incision site is also. I'm not taking anything for the pain because I'm tired of feeling tired, except sometimes a couple of Aleeve at night, when the pain gets worse. I just want to ask if there is anyone out there who can tell me how long the incision site takes to heal, and how long it takes to stop the stinging feeling in my underarm? Thanks for sharing your experiences, they have really helped me feel a bit normal.



DCIS stage0 grade1 SNB N

Beesie

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.