Has anyone had Reoccurance of DCIS after a Mastectomy

I have a question about DCIS. I thought DCIS was stage 0 but I see that some people say they have DCIS stage 1 or stage 2. If the cancer is contained within the duct, how does it become stage 1 etc. Just unclear how this works and wondering if DCIS stage 1 or 2 means the cancer is both DCIS and IDC.

Watching Ellen at the same as I'm typing this and see that Christine Applegate is strongly encouraging woman to have MRI.  She has a foundation raising money for uninsured women so they can have access to MRI.

If  my doctor won't approve MRI, then I am going to go to a private clinic I found in Ontario. The cost is $600 but I really want ongoing MRI testing and if I have to pay for it, then I have no choice.

Are some women getting Grade mixed up with Stage?

Maybe they have DCIS Grade I? (stage 0)

Pam

Thanks Mantra,

I went & changed my Typo

I guess some Oncologists must think that pure DCIS can be Stage I then.

Its too bad they give out false information.

Pam

Dejaboo, thank you for correcting the typo.  Yes, DCIS can only be Stage 0.  And I think all oncologists know this.  But what they tell their patients may be something different.

Mantra, what you reference is one of my little pet peeves.  There are so many women on this board who have signature lines that say DCIS, Stage I or DCIS, Stage II, etc..  And as Dejaboo says, all the time you see posts where women say that they were diagnosed with DCIS and they had chemo or Herceptin or some other treatment that simply isn't given for DCIS.

Here's what I think happens.  DCIS and IDC are often found together.  Most of the time, IDC develops from DCIS.  So most women who are diagnosed with IDC also have DCIS.  Lots of the time their doctors don't even tell them, because staging and treatment is based on the IDC and the DCIS is in effect irrelevant - it has to be removed, but that's all.  But when women read their pathology report, the term "DCIS" seems to stick out.  IDC is usually described as being "invasive ductal carcinoma" or "infiltrating ductal carcinoma", or as in my case, it was simply referenced as "Microinvasion present:  Yes, 1mm".  So the IDC gets lost in the jumble of words in the pathology report but the DCIS stands out.  As a result, lots of women think that their diagnosis is DCIS - and they do have some DCIS mixed in with their cancer - but their diagnosis is actually IDC.  The diagnosis is always based on the most serious of the conditions.

This is one of my pet peeves because it leads to so much confusion among women who have DCIS.  Some common examples:

- Why wasn't I given chemo when other women with DCIS have been?  No they haven't; the women who had chemo had IDC in addition to DCIS and the chemo was to address the IDC. 

- How can you say that DCIS can't invade the nodes when I see other women who have DCIS who have positive nodes?  Those other women have IDC in addition to DCIS and once you have any amount of invasive cancer, nodal involvement is possible. 

- Why wasn't my DCIS tested for HER2 status when I see that other DCIS women have been given Herceptin because their DCIS is HER2+?  HER2 status is not relevant to those who have pure DCIS; those other women have IDC in addition to DCIS and it's the HER2+ status of their IDC that determined the need for Herceptin.

- I was told that DCIS couldn't develop into mets but I see other women who started with DCIS who now have mets.  In those cases, either the initial diagnosis wasn't pure DCIS (there could have been a microinvasion or a larger amount of IDC) or there was a recurrence after the initial diagnosis and the occurrence was invasive.

It's very frustrating because this misunderstanding of what is and isn't DCIS, and this misunderstanding of how DCIS is staged, including the very important distinction between Stage 0 and Stage I, causes so much confusion and often, so much unnecessary concern.

As I have stated earlier, somewhere, I think one reason for confusion is because people are putting all their faith in the diagnostic tests.  If you have a lumpectomy, with clear margins, that is DCIS you would assume that there could be no positive nodes.  But, as in my own case, you take off the rest of the breast, you might find that there was a small IDC component that was undetected by any scans.  And now you have to assume that there is a 'possibility' that nodes are involved.  

All my tests indicated one  1.4cm tumour.  Nodes looked good.  Docs thought it would be DCIS.  Nope.  It took a mastectomy to discover that my breast was full of DCIS and IDC and 9 nodes were positive.  I often wonder where I would  be if we had treated based on the initial results.

By the way, I don't mean to scare any of you ladies out there. Just saying that we should all be vigilant and question things that don't make sense to you.  

Hoping to help clear it up. Beesie is 100% correct.  Pure dcis is stage 0 cancer. It is cancer, not precancer, but it is non- invasive.  Add a microinvasive component, and you are bumped up to stage 1.  i know this, as this was my 2nd cancer.  First was only idc, small cancer, and the second was dcis with microinvasion, and my explanation as to why I was stage 1 now , again, came from Sloan Kettering, and you can't get much better info anywhere else.

Well now, that makes more sense.  The micro invasion would certainly bump a person up to stage I. And, I assume it would change the course of tx and whether or not lymph nodes would be tested.

I was dx with IDC 6mm and DCIS 7mm, does that make me Stage 1b?  Cause that is what I put dx area when I signed on.

Just wondering.

Has anyone been tested for this marker?

Biomarkers Linked to DCIS Outcomes

Ductal carcinoma in situ (DCIS), where abnormal cells are found in the lining of a breast duct, is usually treated with surgical lumpectomy, followed by radiation, chemotherapy, a combination of the two, or surveillance. Most women undergoing these treatments will not experience a recurrence, but in 15 to 30 percent of women, a new tumor will develop within 10 years, and about half of these will be invasive breast cancers. To help clinicians determine whether DCIS is likely or unlikely to follow this course, researchers at the University of California, San Francisco, and the Bay Area Breast Cancer Specialized Program of Research Excellence (SPORE) have identified biomarkers associated with invasiveness. Their results appear in the November 12, 2007, Cancer Cell.

Using lumpectomy samples from 70 women who were diagnosed with DCIS and then followed for more than 10 years (180 months), the researchers looked at several markers associated with stress-induced senescence or proliferation. They compared the profiles of these markers in women whose DCIS did not progress to those in women for whom the DCIS did progress.

The results showed that in samples containing proliferating cells identified using Ki67 proliferation marker, overexpression of stress-activated p16 and/or COX-2 proteins reflects abnormal response to cellular stress and predicts subsequent tumor events within the first decade after the initial DCIS diagnosis. Low expression of Ki67 (regardless of the p16 and COX-2 status) usually indicates favorable prognosis. Other findings include observation of post-transcriptional rather than transcriptional regulation of COX-2 expression in a subset of HER-2-positive tumors.

The authors conclude that when tissue shows stress activation and deregulation of p16 and Rb signaling, this "may represent a defining signature of basal-like carcinogenesis that can be assayed [before] the development of invasive disease," with opportunities for prevention years before an invasive tumor actually occurs.

beesie is right.  my pathologist, surgeon, oncologist, radiation oncologist and about 500 hours of research on the internet all agree.  DCIS is always always Always stage 0. 

If there is invasion or positive nodes it is NOT DCIS.  Then it is stage 1, 2, etc.  It is amazing to me that so many women write in that they have DCIS stage 1.  If you don't believe me, GOOGLE it to death like i did.  my motto is: trust but verify.  i triple checked every doctor every step of the way, including a second opinion of my pathology report.  I'm DCIS stage 0.

My Mom had breast cancer in 2001 at the age of 64. It was in BOTH breasts. They said only one was highly differentiated & no node involvement, so she could have a lumpectomy on both sides followed by Kool-aid chemo ( I call it) 1/2 doses every 21 days.

After getting the tumor markers inserted, she was immediately wheeled next door for the lumpectomys. They got her situated, the doc came in& said the x-ray they just did showed the tumor markers in her right breast moved & they'd have to dig deep& far to be sure to get it all. They said she really needed a masectomy to be sure. We had all of five minutes to decide!

She opted for it & I was bummed & went outside to have a good cry.

While outside, the very nurse who helped w/ the tumor markers saw me crying& told me It would be ok, a lumpectomy on both sides was scarey, but not to worry.

I told her what the doc said about how they shifted & they had to do a masectomy. She told me in her 30 yrs working there, that has never happened! Not once.

Well, her breast was gone.

She did well& started her chemo, sick as all heck, lost her hair by the 2nd chemo.

I live in IL, she lived in FL. I flew in every 3 weeks for her chemo treatments, stayed 4 -5 days, flew home& back again for the next treatments, til she had a full six months chemo.

I think her kool-aid coctail was Adryamacin& Cytoxin.  They also gave her Taxol, which caused her feet to go numb ever since.It is a side effect she was never told about.

Last July 08, she moved to be near me& called me over. Her nipple was inverted! I immediately set her up w/ an oncologist/radiologist. She was also haing these red bumps coming out on the masectomy side& her other breast. They would pop out 2-3 at a time, almost weekly.

They decided to do radiation & giver her Arimidex....

In Jan 08, she had a 13.5 hr operation for three aneurysems that were about to blow...

She lost her kidneys w.  that surgery & is on dialysis 3x a week..

Last week she noticed a large lump under her armpit & we called the surgeon for a biopsy. She is 72 now.  He told us he wouldn't do the biopsy, the outcome wouldn't matter because there was nothing else they could do for her. Because of her kidneys, surgery is not an option, she's already had radiation & the chemo doesn't do well w/ dialysis patients. Small lumps are popping up weekly.

Her oncologist is such a compassionate man, he wouldn't tell her she won't make it. The surgeon even said 'when the time comes, you  may want to stop dialysis& go into a coma& die peacefully.'

I'm not ready to lose my mom & refuse to believe there is nothing they can do for her........

Has anyone had Br, Ca. recurrence w/ skin/lymphatic mets? She had some tumors they called DCIS and some that were bigger, and one highly differentiated& poorly defined tumor. I feel she's being given a death sentence, what do I do> It's so complicated because of the dialysis. She feels good on non dialyisis days. What should I expect? What should I do?  Oh, the 3 mammos she had where she had numerous tumors were never found by that test & I am questioning it as a diagnostic tool for my family. My gram also found hers after a mammo (clear). 

I really don't understand what this topic is doing in a "recurrance or mets" section!  I find this extremely offensive.  I'm not really sure why stage IV has to forums now but I stopped by here to see what is new only to find someone wanting to know if they might recur if they are Stage 0.  What is this, a post to tell us how you don't want to be one of us???  Like we have some contagious disease you don't want to have?  Guess what?  You already have breast cancer!  If you all want to discuss what is stage 0 and what is stage 1 please take it somewhere else where it isn't so offensive.  I expect things like this from people without breast cancer not those that have it and know how devastating it is to those of us with this dreaded disease!!!

Beesie ~ A big thanks for all the clear, factual information you have posted on these boards. I also appreciate the study references. There is so much to learn about cancer and available treatment options.

It is my understanding that the risk of recur with Grade 3/ Commedo necrosis DCIS with BMX is 1-2%. 1-2 out of 100 women..... It is a very low risk, but still there. There is no way to know what type of CA the recur would be for sure either.

(( All of US))