Help!

Dear bexybexy - The first thing you should do is read your pathology report.  If it is high grade and has comedo type with necrosis, then there is a higher chance of there being IDC.  If it is low grade and non-comedo type then there is a lower chance of there being IDC.  My wife actually had one breast with DCIS high grade comedo type with necrosis and one breast with DCIS medium grade and non-comedo type.  After a BMX, the first breast turned out to have IDC and the second breast only DCIS.  You must also pay attention to some other things.  HER2 positive means the cancer can be very aggressive.  In that case the reoccurence rate without treatment (chemo and Herceptin) is 25 to 30 percent. With treatment is 2 to 3 percent.  My wife's cancer is HER2 positive.  If it is all DCIS and HER2 negative and you had a good surgical margin and had radiation after surgery then your reoccurrence rate will be very low.  DCIS survival is not 100 percent but could be 98 to 99 percent.  There is always a very small number of cases where something might have been missed.  My wife was told that her chances of not needing more treatment after a BMX was 90 percent.  Unfortunately she is in the 10 percent and will need chemo, Herceptin and Arimidex.  Good luck and happy to answer more questions if you post back.  However, Beesie is far and away the biggest expert on this section of the bulletin board.

It is true that about 20% of those initially diagnosed with DCIS wind up with a diagnosis of IDC.  That number is based on the information available after the initial biopsy and imaging. Because a biopsy only takes a sample of tissue from one or more places in the breast and is not intended to remove all of the cancer, that means that the cancer remaining may still include something other than what was included in the biopsy sample.

After surgery intended to remove all of the cancer (which you had with the lumpectomy), the percentages will depend on your particular situation.  The most important factor is margins, how wide an area around the edge of the removed tissue is free of cancer cells.  If the cancer cells go right up to the edge of the sample, it is likely that the tissue still in the breast adjacent to where that tissue came from may still have cancer.  Or if the margins are very small (<2-3 mm) the DCIS may have skipped a space and there still may be cancer in the breast.  So the most important factor for you is -- how wide are the narrowest margins from the specimen removed from your breast?

Margins are not an easy or clearcut topic. It also sounds to me that your surgeon may be recommending a mastectomy because your DCIS is multi-focal or multi-centric and that makes it more likely that another spot of DCIS might remain in the breast.

Nothing is ever 100% but survival rates for DCIS that is properly treated are >99%.  Even if a small IDC showed up, survival rates for Stage I breast cancer are practically the same as for DCIS. 

I think you should talk to the consultant again and ask about margin status and the multi-focal aspect of your results.  There is so much information to absorb and process that no one can understand it all in one visit, no matter how good the communication is.  

bexy, I'm sorry that my post scared you.  As redsox explained, you did interpret my post correctly. Women who have a preliminary DCIS diagnosis after a biopsy have approx. a 20% chance that something more than DCIS will be found once the final surgery is done and all the cancer cells have been removed and analysed.

This is important to know because sometimes women come here saying that they had a needle biopsy that showed DCIS, and since DCIS is pretty much harmless, why should they even have surgery? Why remove something that is harmless? One of the big reasons is because a biopsy doesn't tell the whole story.  Where there is DCIS in a biopsy, there is a risk that something more serious might be found.  So surgery is necessary to confirm that the diagnosis really is just DCIS.

In your case you've already had a lumpectomy, not just a needle biopsy.  So much more of your area of cancer has already been removed, and only DCIS has been found.  This means that the risk that something more might be found during your mastectomy is much smaller than if so far you'd just had a needle biopsy.  So you've already passed the big test on this one!

As for the survival rate, DCIS cannot spread into the nodes or the body, so it's true that the survival rate for those diagnosed with pure DCIS is 100%.  There are a few "buts" to this statement, however.  

1. The first "but" is that this assumes that the final diagnosis, not just the biopsy diagnosis, is pure DCIS.  If some invasive cancer is found at any point during any surgery then the diagnosis changes from DCIS Stage 0 to IDC Stage I (or higher).  With that, the long-term prognosis changes.  However as redsox pointed out, the presence of only a small amount of invasive cancer, a true microinvasion (1mm in size or less), has very little impact on the prognosis.  That was my diagnosis by the way - I had a microinvasion along with my DCIS.
2. The second "but" is that this assumes that all the cancer cells have been found and removed and fully and properly analysed and confirmed to be DCIS.  If there was a very tiny area of invasive cancer that somehow is missed, this could change things.  This does happen but it's extremely rare - not something to worry about.  
3. The third "but" is that this assumes that there is no recurrence.  This means that all the DCIS is fully removed during surgery and/or killed off by radiation and/or hormone therapy and there there is no recurrence.  A recurrence after an initial diagnosis of DCIS could change the prognosis if the recurrence is not found until the cancer has evolved from DCIS to IDC. Approx. 50% of DCIS recurrences are not found until they are already IDC. 

I hope that this explanation hasn't scared you more than you were already scared.  Unfortunately DCIS is not as simple as it's often presented to be; there are lots of "ifs, ands or buts" associated with any diagnosis.  And DCIS is not a homogeneous type of cancer - there are lots of different DCIS diagnoses.  Some women have a tiny amount of non-aggressive DCIS that can be easily and quickly treated (sometimes a lumpectomy only) while other women have large amounts of very aggressive DCIS that requires more extensive surgery and treatment (mastectomy maybe even with radiation or lumpectomy with radiation and hormone therapy). And there is everything in between.  

I don't know what your DCIS diagnosis is. The risk that some IDC may be found hiding in with the DCIS varies greatly depending on the diagnosis.  The risk of recurrence will also be very different depending on the diagnosis, the pathology (particularly the margins) and the treatment option selected. One case cannot be compared to the next. You need to have all the information about your own diagnosis and pathology to understand what your specific risks are. 

Having said all that, for most women a diagnosis of DCIS turns out to be a one-time occurance, the DCIS is removed and treated and that's it.   

One last point, a clarification to Blair's post. If your diagnosis is pure DCIS, the HER2 status doesn't mean anything. For those with invasive cancer, HER2 status is very important and can have huge impacts on treatment plans and long-term prognosis. With DCIS, it has no impact on the treatment plan or the long-term prognosis (assuming that the DCIS is adequately treated and does not develop into invasive cancer).   Sometimes HER2 status isn't even provided for those who have pure DCIS; if you do get your HER2 status, don't worry if you are found to be HER2+. Somewhere between 40% - 60% of all cases of DCIS are HER2+ (in other words, it's really common) but only about 20% of cases of IDC are HER2+.  The medical and scientific communities don't understand yet why so much more DCIS is HER2+ but it reinforces that you shouldn't put much weight or worry into an HER2+ DCIS diagnosis.  

Bexy,  I have not heard of doing an SNB with DCIS, but that doesn't mean that someone doesn't do it.  Definitely discuss all this with the surgeon that you see next time (or whomever it is that you'll see).

My understanding is that DCIS cannot move to somewhere else in the body, that you would have to have invasive cancer for it to get to the nodes and beyond.  Of course, I'm not a medical professional, it's just my understanding from what I've read and been told.

If you had a biopsy instead of a lumpectomy they could have not seen IDC (that's what happened with me), so when they do the lumpectomy they find IDC inside the area of DCIS.

I'm unsure about doing the SNB the day before the MX. They did my 2nd lumpectomy and the SNB in the same surgery. Maybe they want to check the nodes before they do the MX in case it might change the treatment plan?

Keep us posted on your progress and what you find out. Hugs and best of luck to you.

bexy- I had DCIS and MX and also did a SNB.  There's pros and cons for doing one and not doing one.  Having it done gives you added peace of mind that no cancer has entered the lymph nodes.  Once you have the MX it is impossible to go back later and do a SNB.  Having one done, though, does put you at a higher risk of getting lymphedema.  It is a much lower risk than regular node biopsies, but a risk nonetheless.  Anyway who has had lymph nodes removed should take lymphedema precautions.  Ultimately, they will leave the decision up to you and you'll have to decide what's best.

No offense taken, Bexy.  I was wrong, I just hadn't heard of it. Now I know better, right? I too am on the west coast.

I guess mine was the out of the ordinary case with no SNB w/the first lumpectomy.

And to answer your other question, if there is IDC in the breast, they still need an SNB because that allows them to hopefully see if it has spread out of the breast and they have to look for it elsewhere in the body. The lymph nodes would be one of the first stopping points for the cancer cells on their way out of the breast and into other parts of the body. If they don't find any cancer cells in the lymph nodes then it's very unlikely, but not impossible that they've gotten to any other parts of the body.

I had a lumpectomy for DCIS and they did a SNB at the same time.  As I understand it, if the biopsy shows a high grade and commedonecrosis, the surgeon sometimes does a SNB even with DCIS.

Bexybexy, what is a consultant to which you refer?  What does it mean? 

Sorry Bexybexy -  I just read you asking for people to not reply anymore (after I replied) - I know this is a stressful time, hope all goes well for you - hugs