DCIS with 2mm microinvasion

They MUST have your results on a computer SOMEWHERE!!!

Kimberlina,

Did you have a needle biopsy first, and then the lumpectomy with the SNB?  If so, then which results are lost?  If the biopsy sample is available, then they should be able to determine your hormone status from that - and that can tell you if Tamoxifen would be beneficial for you.  Or if the biopsy sample is lost, the lumpectomy sample should be available.  Or is it only the SNB result that's lost? 

FYI, there is no risk - 0% - of lymph node invasion from pure DCIS.  The risk of lymph node invasion exists only if some invasive cancer is found (or sometimes, not found) hidden in with the DCIS.  In my case, a microinvasion of IDC was found during my biopsy, so it was clear that my diagnosis was not pure DCIS and because of that, I needed to have an SNB because there was a risk of lymph node invasion.  Normally an SNB is done on someone whose biopsy showed DCIS only if there is a concern that a microinvasion (or more) of invasion may be found in the final pathology of the breast tissue.  When a microinvasion is found, there is approx. a 10% risk of lymph node invasion.  The net of this is that you should try not to worry. The risk of microinvasion with DCIS is about 10% - 15%; and the risk of lymph node invasion from a microinvasion is 10%.  So that means that without having any pathology information from your breast tissue or SNB, your risk of  lymph node invasion is likely only 1.0% - 1.5%.

digger,  what you said is correct, to my understanding.  Since you had pure DCIS, there is virtually no chance that it could be anything else but a swollen lymph node.  Virtually no chance doesn't mean zero chance, however, and here's why.

It's estimated that in up to 10% of cases of DCIS, a microinvasion may be present but missed, i.e. not found when the pathology is done.  So it's assumed in these cases that the diagnosis is pure DCIS, but in fact some IDC was present.  Separate from this, it's known that in approx.10% of cases where there is a microinvasion (discovered or not), there will be some lymph node invasion.  So this means that in those 10% of cases where the microinvasion was missed, approx. 10% will have lymph node invasion.  In other words, in about 1% of cases of "pure" DCIS, there will be lymph node invasion.  I've seen this happen a few times with women on this board.  Their pathology report shows pure DCIS, but they have nodal involvement.  Except in cases where the nodal involvement is extremely tiny (known as ITC - isolated tumor cells), in these types of situations it's usually assumed that a microinvasion was missed.  One other thing that can sometimes happen is that someone can have lymph node involvement, but it's missed by the SNB. I've seen different studies on this - I think the possibility of this happening ranges from about 3% to at most 10%. 

So in your case, your pathology showed pure DCIS - but there is up to a 10% chance that there could be a missed microinvasion and from that, a 1% chance that there could be nodal involvement.  You had an SNB, which was clean - but there is up to a 10% chance that the SNB could have missed an invasion.  So that means that there is a 0.1% chance (1 in 1000) that both your microinvasion was missed and, if there was nodal involvement, that it too was missed when the SNB was done.  So, virtually no chance!   

Kimberlina,

I didn't realize from your earlier post that your biopsy showed a 1.7mm microinvasion.  What this actually means is that your diagnosis is not pure DCIS - your official diagnosis is actually Stage I IDC.  Assuming negative nodes, your staging is T1a, N0, M0.  That's similar to me, although my microinvasion was smaller - 1mm.  So my staging is Stage I, T1mic, N0, M0.   You can read about staging on pages 57-59 of the following file:  http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf

I also notice that you've added to your signature line that your DCIS was ER+ / PR+.  Based on that, I don't understand why your doctors have said that Tamoxifen won't be of benefit to you.  Tamoxifen is given to ER+ women with DCIS who have a lumpectomy in order to reduce the risk of local (in breast) recurrence.  For women who have invasive cancer (as you do), Tamoxifen can also help reduce the risk of distant (beyond the breast) recurrence.  So the fact that you don't have your SNB results makes no difference to this decision.  Having an ER+ breast cancer and having had a lumpectomy, Tamoxifen is the normal treatment.  Some women may choose not to take it but usually it is recommended for anyone with your pathology and surgery.  Is it your surgeon saying that Tamoxifen wouldn't provide any benefit, or is it the oncologist?  An oncologist should be advising you about this. 

As for the lost SNB, as I mentioned in my note to digger, for those of us who have a microinvasion, the risk that there could be lymph node invasion is about 10%.  That's not insignificant, but it means there's a 90% chance that you don't have lymph node invasion.  Still, since your SNB results are lost, I think that's more reason to take Tamoxifen.  With such a small amount of invasive cancer, your risk of distant recurrence would be very small even if it turned out that you did have lymph node invasion, but Tamoxifen would have the benefit of reducing this risk.

Jasmine,

Did your mother have a mastectomy or lumpectomy?  If she had a lumpectomy, then an SNB can still be done and it should still be accurate.  In any case, as the SNB procedure is being set up, the surgeon will know right away if it's effective on not. Normally four injections of dye are made around the nipple, and then it's watched to see if the dye from all the injections move through the breast and converge at the same node.  If they do, then there is a clear sentinel node.  If they don't, then there isn't a clear sentinel node and an axillary node dissection needs to be done.  My BS told me that in about 10% of cases, there isn't a clear sentinel node.   In my case, I did have a clear sentinel node but my BS takes the cautious approach so he removed that node, plus the next two that were immediately in line behind it.  One issue with SNBs is that a surgeon has to be experienced at them to ensure that the right node is removed.  So the issue could be that your mother's surgeon isn't practiced enough with SNBs to be comfortable doing one post-lumpectomy.  If that's the case, then perhaps the SNB can be done by another surgeon.  And given that your mother has had the lumpectomy and there could be concern about the accuracy, I'd suggest that if an SNB is done, that at least a couple or maybe 3 or 4 nodes be removed.

As for whether your mother should have her nodes checked, I'd say yes.  By definition, a microinvasion is classified as an amount of invasive cancer that is 1mm or smaller in size.  So your mother's microinvasion technically is a T1a tumor and not a T1mic tumor - not a true microinvasion.  Since positive nodes are found in approx. 10% of cases where there is a microinvasion, I would think that the % risk would be about the same or slightly higher for your mother's situation.   So I think that having her nodes checked is important.  If it turns out that an axillary node dissection is the only option, one thing to consider is for the surgeon to only remove the first level of nodes, and maybe just a couple of nodes in the 2nd level.  This would reduce the number of nodes removed vs. a normal axillary dissection and it would reduce her risk of lymphedema (although there is a risk for anyone who has even just one node removed).

Hope that helps!

Dear Bessie,

Hi, I was reading Kimberlina's post and would like your comment on my situation. I had a WLE and SNB in April 09 during a lumpectomy to remove 2 tumours sized 5.5cm and 2.5cm. Margins were clear.Histopatholoy confirmed as pure dcis. SN shows clear negative for invasion .2 months later, before scheduling me for radiotherapy, a mammogram was done on the same breast and we were shocked to discover mirco clasifications at a new site. So another surgery was performed in June 09 and since the tumour was cancerous, mastectomy was carried out as the dcis was extensive. This time the surgeon did not check the lymph nodes as she says it is adequate and she thinks that the tumour is probably dcis ( which was hiding behind the previous dcis) The pathology reports extensive dcis but there is a suspicious focus (less than 1mm) of mircoinvasion which disappears in the deeper level. With a report like that, do I have micro invasion and what is the next appropriate treatment? I am pr/er - but HER2 +++. Thanks for your advice. I appreciate very much.

Hello Bessie,

Thanks for your reply. I saw the onco recently. She thinks that the SNB 2 months ago is good enough but she was suggesting taking tamoxifen with the intention of preventing future recurrence in the healthy breast but I was against the idea since I feel I would be better off being vigilant rather than taking hormone blockers than might do more harm than good. Anyway with Er-/Pr- would indicate that tamoxifen would be of no use to curb my suspicious 1mm microinvasion. So finally after much discussion, we agree to just do 6 monthly mamogram and self breast examinations. By the way are you on tamoxifen now?

Hi,

I posted earlier about my mom's case. Before the doctor said she had DCIS with 1.5mm microinvasion. But just yesterday, they had a new path report saying she actually had pure DCIS without any microinvasion. I am confused about how they changed their diagnosis. One of the doctors pointed out that her tumor was surrounded by some capsule and it wasn't broken. Therefore, no invasion would have happened.

I am not sure what capsule he was referring to. She is ER-/PR+, p63+, SMA+, HER2++. I googled but really didn't find anything. Does anyone know about this mysterious capsule?

Thanks!

-J

Grace Ann what a terrible shock for you. I just feel awful that you or anyone would have to be subjected to this. I will say an extra prayer for you. Did you originally have a lumpectomy or a masectomy? Also, I am surprised that they were giving you PET scans for a diagnosis of DCIS. It sounds like you were certainly being monitored very closely. Was your DCIS very extensive and very aggressive?

Well this is very concerning. My situation was exactly like yours but my dcis was 10 cm. They also only took one node to analyze and the radioactive dye apparantly took its sweet time moving to a node because it took over an hour for them to get the photos. Some angry nurse told me it was the EMLA cream I used to mask the pain that was causing the delay. I have worried ever since that I should not have used that cream in case if it caused a snafu with identifying the proper node.  In talking to many of the other women on this forum, we all have the underlying fear that your situation is going to happen to us. I just don't know what to do to be more closely monitored. I too was told I need no other treatment and cannot get PET scans. My insurance will not even pay for the BRAC1 and BRAC2 testing because of it being DCIS. I thought I would be doing well if I could get one of my Drs. to recommend an annual MRI.

It is one thing to make up your mind to be your own advocate and it is completely another thing to get the medical system to cooperate with you when there seems to be a certain protocol for treating DCIS. Perhaps this is just an issue with my particular insurance though since you were able to get PET scans. I am right now fighting my insurance company to pay for the anasthesiologist bill that they declined because the Dr. was not on their provider list. I insist that I had no control over the choosing of this Dr.  You get who you get. I love their rational that I am to sit up on the gurny as I was being wheeled into surgery and whip out my provider list and double check to ensure that the Dr. is listed and if not, do what, cancel the whole surgery at that point?! Anyway, another thread.

Grace Ann, I will continue to pray for you and keep you in my thoughts. Thank you for sharing your story and I hope you get the best medical team on top of this.

Hi-

for those who had microinvasive DCIS that was her2+++, as of this afternoon we have our forum index (thanks to the moderators!).  Please feel free to post there. We can finally connect! The forum index is called Micro-invasive DCIS that is Her2+++.  Thanks!  Liz