DCIS and Recurrence???

gcpommom - Thank you. I guess because reoccurence is something we all worry about and for those of us who aren't having any followup it does make one worry. However, with this thread, it also gives me something to take back and ask my doctors about so that perhaps I can get some kind of followup. I so feel for all of you who have and will go through this all again - so horribly unfair and somewho with the DCIS diagnosis I wasn't really expecting to read this.

Also thanks for the reminder about how a lot of women who are fine no longer post. That is a good thing to remember. I like being on this and reading all the posts not only to ask questions but hopefully be supportive and I do think you feel like you know these women and care about them an d want to make sure everyone is OK. 

I wish eveyone the best in dealing with more difficult times. I hope they will come up with more information about all this soon.

Brenda, I had my biopsies and surgery in 2005 too.  What your doctor told you then was the understanding at that time, but since then, new information has become available about DCIS which indicates that for DCIS cancer cells to survive and thrive outside of the milk ducts, they must undergo one final biological change.  In other words, DCIS cancer cells need this one final step before they can become invasive.  So even if DCIS cells are moved outside of the duct, during a biopsy for example, these cells won't become invasive.  They will remain DCIS cells and they will not have the ability to spread or move outside of the breast. So no one should be worried about having a biopsy and possibly moving DCIS cells.

If you think about this, this makes sense because pretty much everyone who is diagnosed with DCIS has had a biopsy - either a needle biopsy or a surgical biopsy.  So we all have open ducts that the DCIS can escape from.  And yet most women who are initially diagnosed with DCIS via a biopsy end up with a final diagnosis of DCIS. Only about 15% are found to have invasive cancer in addition to the DCIS and in most cases, these are women who had "high risk" DCIS - DCIS that clearly was at a stage where it was ready to become invasive (i.e. high grade DCIS or DCIS with comedonecrosis). 

My case is a good example.  I had a stereotactic biopsy first - only AHD was found but we knew that because of the location of my DCIS, the sample taken wasn't the best.  Then I had an excisional biopsy; the results showed two separate areas with high grade DCIS; in one of the areas I also had a microinvasion of IDC.  The fact that I had the IDC was not surprising, considering how much DCIS I had and that it was high grade with comedonecrosis. After the excisional biopsy, I had no clear margins at all - which means that I had lots and lots of open ducts with DCIS right at the edge, ready to spill out.  For various reasons (changing surgeons, coordinating with a PS, etc., having an MRI, having a biospy of my other breast), I didn't have my mastectomy for another 2 1/2 months.  When I got the pathology report from my mastectomy, it showed a lot more high grade DCIS in both areas, but no additional microinvasions.  So despite all those cut ducts, despite the fact that I had high grade DCIS, and despite the amount of time I waited, my DCIS did not become invasive.  While there may have been DCIS cells in my open breast tissue (I don't know if there were or weren't, I just know that I had a lot of DCIS throughout my breast tissue), the remainder of my DCIS had not yet undergone that final biological change and therefore was not ready to become invasive.    

I hope this eases the mind of anyone who's had a biopsy that showed DCIS. A biopsy isn't going to release DCIS cancer cells and allow them to become invasive.  It's the cell itself that is going to decide when that's going to happen.

MCTHO, what a badluck you had!  I must say I was in shock after reading your story. Hope everything goes well now.

Sadly, I spend too much time myself worrying about recurrence. The other day, I tried to think the other way around:  if somebody told me I had 98% risk of dying within the next ten years, I would be sure to die... so why don't I think the same when I look at my 98% probability of survival? 

Beesie, thanks for the information and for sharing your experience.  I was hoping for at least one doctor to tell me what you just stated in your post.  Not one doctor said "It's not possible."  My intention was not to worry people who have DCIS.  I thought I'd make them aware of what I thought I knew.  I wish there were less invasive ways to determine the presence of cancer cells.

There's something else that bothers me, and again, my intention here is to share information and not worry people.  My first tumor was less than a centimeter, non-palpable, triple negative and grade 3.  We treated it with lumpectomy, SNB, AC and 33 rads. That happened in 2005.  Last year we found 2 new tumors in the exact same location as the lumpectomy.  2 new tumors with 2 different pathologies.  Is it possible that radiation caused these tumors to morph and grow?  I am hoping that someone will say it is not possible.

Hindsight is 20/20.  If I had to do it all over again, I would have had the double mastectomy, no radiation, maybe even chemo.  Who knows, the 2 new tumors may never have sprouted (or, some may say, they may have sprouted in other parts of my body).

Again, I could just keep quiet and not share my feelings and experience, but I really believe that learning is better achieved when you study different sources of information, and I sincerely hope I am helping someone as I share my views and experience. 

Brenda 

I don't know if they are so much different, but more along the lines of less developed, from what I have read at least. I wish I could remember and cite the article, but it explained it as the grades in stage 0 (DCIS) become more like stage I invasive cancer as is indicated by the grading system. So the DCIS grade 1 would be least like stage I and the grade 3 the closest to it on the cellular level.

That made me understand it to be like a progression. Not so much a change from stage 0 to stage 1. Sometimes the cells do not progress, which I think is where the debate comes from i.e. is it "cancer" or is it not. But obviously it can, and that's where those of us that have the diagnosis have the problem.  You know, do we take it seriously in the event that it does become invasive? Or do we hope that maybe we will have the type that won't continue to develop along the way to become invasive?

Anyway, that should be the real argument. Most sources seem to agree that DCIS is cancer on the cellular level. But it is considered pre invasive. I think it's sad that a handful of doctors try to claim that it isn't cancer. I think they have the right idea in a way because they don't want women to panic and choose overtreatment. But in a way I think they are doing the opposite because they put women with DCIS in the position of thinking they are going to be fine, don't really need treatment, etc., when in many cases obviously, they do.  

Beesie, thank you not only for your wealth of information but they way you present it - meaning easy to understand and very clearly with facts. You are such a calming person and such a wonderful help to us all. I always look forward to hear what you have to say on so many subjects involved with bc.

Roberta, you might get more helpful replies from the ladies on the Stage I & II, IDC, or the recurrence forum.  Most of us won't know all that much about adjuvant chemo.  I'm sorry I can't be more helpful, and I'm REEEEALLy sorry you're going through this.

Roberta did you ever do genetic testing? just wondering. It seems like you see more woman that have the BRCA gene come up with new cancers even with these tiny amts of breast tissue. I went to the dr last week and did the gene test. He said if I came back positive even with my double mastectomy that he would follow me more closely.

I agree on how scary all this is. I think more so cause they tell us we are now fine. I know some women are followed and some aren't and even those who are followed can end up with surprises. Cancer is always scary and for me I know I will always worry and I don't think anything will take that away. I hope they can soon tell us more so we can at least feel more comfortable knowing a bit about what we are dealing with but perhaps that is wishful thinking and not really possible.

I know this just hits us all in our biggest fears and I am so horribly sorry for all of you going through this. I so appreciate you sharing your storied and process so we all will have more questions to take back to our doctors. It just seems like it doesn't get better some days. You are all in my thoughts and hope you are all taken care of and finally rid of cancer. 

After reading about several women on the group who have gone from DCIS, had bmx and now have a recurrence or new cancer, I decided to really review my pathology report and try and understand some of the stuff I fluffed off.

I realized my original mastectomy also show ADH & ALH. I read about them today and made me realize that having both, made my chances of getting cancer was 8 times higher IN EITHER BREAST". If my surgeon had told me this, I would have said to book my prophylactic ASAP. But instead, I figured I was in no rush. I had it done two weeks ago and sure enough, the paltholgy came back with ADH and my surgeon told me this made me 4 x higher.

So even though I have had a dmx, I am terrified that I will somehow manage to get cancer again. Afterall, some breast tissue is always left and this causes me great conern. I actually had a complete meltdown over this.

I'm so sorry for each of you who have found yourself revisiting a part of your life you thought you left behind. My thoughts are with you.

When I explain cataract surgery to people, I use an analogy of a grape, because people know what grapes look like and can better understand the structure.  So here is my food analogy of breast cancer.....  

Clear Margins:  Lumpectomy:  No cancer found 10mm (1 cm) around lesion.  If your breast was a potatoe, the cancer would be like a brown, mushy part of the potato found inside the potato.  The doctor would take out the brown part plus 10 mm of white potato in all directions.  If they ran into more brown, then they would have to go another 10 mm of white potatoe for it to be clean margins, aka negative for cancer.  They don't know if the tissue is completely cancer free until they look at it under a microscope. 

Clear Margins:  Mastectomy:   1mm from other tissue: aka skin or chest wall.  So if your breast is a hard boiled egg, the cancer would be the yolk.  After they get all of the breast tissue out, they examine it to see where the cancer is. Think of it like this:  on a hard boiled egg there are 4 parts:  the shell (your skin or muscle), the thin membrane (fascia in the breast), the white part (healthy tissue) and the yolk (cancer).   If the yolk is sitting farther than 1 mm or more from along the thin membrane , it would be clean margins.  If the yolk was sitting right up next to the shell without less than 1 mm of white part between it, that would be positive for cancer, and unclean margins.  The worry is that the cancer may be in the skin or chest muscle now.  So then they recommend radiation or chemo just to be sure there aren't any cells left behind.  My cancer was 1.5 mm from my chest wall.  Those are close margins because I only had .5 mm, about the thickness of 2 - 3 hairs, before it was to my chest wall.

 Hope that helps!

Stanzie - your hypothetical example in the post above is correct.   4mm would be the distance away from the cancer.   

Roberta - that just sucks.  Sometimes things show up on MRI, sometimes they show up on mammo, sometimes they show up on u/s, sometimes they show up on all of them, sometimes they show up on a combo of them but not all of them, sometimes they don't show up on anything at all.  It all just SUCKS. 

The clips are also for the surgeon to know where to go to remove tissue, you'll probably have a wire localization procedure before surgery.  I bled like a pig all over the mammo machine when I had my post-biopsy mammo.....ah, good times!!!!