DCIS stages > 0

cycle-path

I'm curious about something. Why is it that some doctors and some women refer to DCIS stage 1, 2, or 3? If it's DCIS, isn't it stage 0 by definition? And aren't the others really IDC?

Is it out of incorrect habit, or is it intended to make women feel better about IDC? Or is there really a reason to call something DCIS when it's past stage 0?

ADK

My understanding is that DCIS is stage 0.  As long as the cancer remains in situ, it is stage 0.  I think what may be happening is that some people may have been originally dxed with DCIS, but it subsequently became invasive and they are not changing their dx in their profile.  I was originally dxed with IDC and DCIS with the first lumpectomy I had, but it was just a smidge of invasive - my second lumpectomy was all DCIS.

redsox

AJCC (and UICC) are the authorities on staging.  They have agreed on the rules for staging breast cancer which are shown in the following poster:

http://www.cancerstaging.org/staging/posters/breast12x15.pdf

Tis, which includes DCIS, is Carcinoma in Situ and is Stage 0.  If there is any invasive carcinoma it becomes Stage 1.  If someone says they have DCIS but are Stage 1 we cannot be sure what their situation is, but many Stage 1 patients do have DCIS as well as their invasive cancer. 

Beesie

As the others have said, all pure DCIS is Stage 0.  

DCIS-Mi (DCIS with a microinvasion) is Stage I; the stage is increased because of the presence of the just that tiny amount of invasive cancer.

When patients call DCIS anything other that Stage 0, usually it's out of misunderstanding.  We see that a lot on this board - women who state their diagnosis to be DCIS Stage I, DCIS Stage II, DCIS Stage III and even DCIS Stage IV.  

One thing that I've seen happen is that often women discount the presence of a microinvasion or small amount of invasive cancer (a T1mi or T1a sized tumor).  If someone has several cm of DCIS (I had over 7cm of DCIS) and a just one or few mm of IDC (I had 1mm of IDC), they may feel that the IDC is so small as to be insignificant and they therefore state their diagnosis to be DCIS. Or the pathology report might read "7 cm of grade 3 DCIS, papillary and solid with comedonecrosis present" and it might provide a lot more detail about the DCIS.  Then at the bottom there are 3 words that say "single microinvasion found".  This might not even be seen or register with the patient.  My pathology report simply has a check mark next to the words "Microinvasion present". So the fact that there was a microinvasion might not even be understood.  However if the patient has been told by her doctor that she is Stage I (because of the small amount of invasive cancer), she may say that her diagnosis is DCIS Stage I.  

Something else that happens is that diagnoses sometimes change after the final surgery.  So if someone had DCIS Stage 0 after a biopsy and then invasive cancer is found during the final surgery, they might leave their diagnosis as being DCIS Stage 0 but then talk about chemo treatments (which no one with pure DCIS gets).  Or they might upgrade their stage appropriately, but still state that they have DCIS.  So the diagnosis might be presented as DCIS Stage II.

A third thing that happens is that the cancer includes both DCIS and IDC (approx. 80% - 90% of cases of IDC also include some DCIS).  The pathology report might state "infiltrating ductal carcinoma with the presence of DCIS".  When reading this, it might not be understood that "infiltrating ductal carcinoma" is IDC and so the interpretation might be that the diagnosis is DCIS ("DCIS" has a way of really sticking out on a pathology report). Here again the doctor might tell the patient that they are Stage III so you end up seeing a diagnosis that is reported to be DCIS Stage III.

When the source of the confusion is the doctor, I think in most cases it's a situation where there is some invasive cancer present but the patient didn't pick up on it in the discussion, again because DCIS tends to stick out.  So the doctor may present the correct diagnosis and staging, but it's misinterpreted by the patient.

In rare cases I do suppose that doctors might try to downplay the presence of some invasive cancer and focus on the DCIS, which means that they are in effect misleading the patient, maybe to give the patient peace of mind.  I would hope that this doesn't happen often.

Unfortunately for all the reasons I've noted here (and probably others as well), on this board we see lots of diagnoses of DCIS that are something other than Stage 0.  That always leads to confusion and questions.  

xtine

My original diagnosis was a lot of DCIS, then they found some IDC during the final pathology, but they told me my treatment would be the same as for DCIS since the IDC was small. So I think of myself as having DCIS, even though I'm stage 1. I know that I also have IDC - I wasn't misled and didn't misunderstand.

 Up until today, I had only bothered to fill out the "diagnosis" part of the profile. There was no way to choose both DCIS and IDC, or to clarify that my "cancer size" was 8 cm total, but only 3 mm IDC. So at the time I chose to fill in >6 cm DCIS, but put down stage 1. I thought that was pretty self explanatory.

I just modified my diagnosis and added an extra signature line, as it seems that might be a better way to go .

Beesie

xtine, there are a lot of women on the board in the same situation as you - with lots of DCIS and just a little IDC (I'm one of them).  They understand their diagnosis but unfortunately this website doesn't provide a means to put the accurate diagnosis in our profiles, so they put their diagnosis down as being DCIS Stage I.

Your type of situation probably represents most of the "DCIS Stage I"s that we see on the board but unfortunately there are some where there actually is a misunderstanding of the diagnosis.  It's more obvious of course when it's DCIS Stage II or Stage III (or even Stage IV).  I can think of at least 4 different cases over the years where someone has stated that they went "straight from DCIS to Stage IV". Sometimes the posters have been very insistent that their initial diagnosis was DCIS and a couple have even come to the DCIS forum to provide warnings to all the DCIS women that DCIS can progress directly to mets.  Upon probing, in every case that I'm aware of, the diagnosis never really was DCIS. After a bit of discussion, it comes out that "well, there was a 3mm microinvasion" (3mm is actually a T1a tumor, not a microinvasion) or "my DCIS was invasive" or "When I was diagnosed with DCIS I had chemo and Herceptin" (which obviously means that the diagnosis wasn't DCIS) or something like that.  In one case I recall it required a look back at the pathology report before the individual realized that her initial diagnosis was IDC and not DCIS (and in this case the area of DCIS was more than just a microinvasion).  These are all honest mistakes, but here in the DCIS forum it can cause really major concern particularly among those who are newly diagnosed. 

A request has been put into the Mods - more than once, I think - to change the way that our profiles are set up to allow for the entry of more than one type of BC.  It would be nice if that were done.  It would eliminate a lot of confusion. 

cycle-path

Thanks, everyone, for your input! Beesie is, as usual, extremely helpful. (I agree with another poster who said you should write a book, B. How about "Breast Cancer for Dummies?") But the other posters gave valuable insights as well.

I was fairly sure that DCIS was, by definition, always stage 0. Thanks for confirming that. But I can see why, if the invasive component is extremely small, one would probably continue to say that one had DCIS. And the point about the inflexibility of the categories on this board is a good one too.

Again, thank you all.

CarylC

I'm in this group as well, my primary dx was DCIS, I do also have 2 microinvasions but I couldn't figure out how to  make the diagnosis state all that properly!  

Beesie

Caryl, the only way to get a correct signature line if you have DCIS with microinvasions is by writing it out yourself.  If you go to your home page and click on "edit profile", right at the bottom you can fill in a "signature line".  I wrote out my own diagnosis on that line; that's what many of us do. 

mrsbeasley38

I see the name cycle path.  I am interested in cycling. How long have you been a cyclist?  Do you belong to clubs?  How did you get started?

CarylC

Beesie,

You are always so helpful!  Thank you.  I think this will work now. 

Nowaykat

I just had my biopsy done 2 weeks ago and have been diagnosed with DCIS SITU Stage 0. Doc said it was very localized. I'm having a lumpectomy on Wed. and then will be following up with radiation for 6 1/2 weeks. That's the plan so far.

My question is, Will my breast be very noticably lopsided when all is done? This is all so new and this is the first time I've ever been to a site like this.

Is the word Cancer on your mind all the time too?

I'm a little scared of course, but I do have a great support system and feel very blessed for that. But sometimes I just want to scream out, just to scream!

cycle-path

Nowaykat -- good for you for finding your cancer early and taking care of it promptly! Pretty soon you'll put the whole thing behind you.

The answer to the "lopsided" question depends. In my case I think I look almost identical to how I looked before, except I now have a (fading) pink parenthesis. But your outcome could be different depending on the size of your tumor, the skill of your surgeon, the location of the tumor, the size of your breasts, and probably some other factors.

I had my surgery on January 13. I had intraoperative radiation, which a lot of doctors don't offer because they don't know how to do it or don't have access to the proper equipment. Also, some women don't qualify for it because they're too young (under about 50), breasts too small, tumor too large, or some other reason.

When you have intraoperative radiation you are finished in one day. You leave surgery and don't have to keep coming back. In my opinion, it's much better for the patient emotionally (and there is evidence that it's better medically for those who qualify).

But the reason I bring it up is that with intraoperative radiation (called IORT), cancer stopped being on my mind almost right away. I didn't have to keep schlepping back for radiation. I was DONE.

I just passed the 7 week anniversary of completing treatment but if I'd had traditional radiation I would only have completed treatment about a week ago.   

CTMOM1234

As others so well posted, you can't be stage 0 if there's anything more than DCIS.

I like the way I report my status in my signature. Although my overall treatment plan did not change once the 1.75 mm of IDC was discovered in the lumpectomy pathology report, I did undergo a SNB biopsy (thankfully all good news!) before moving on to rads.

pbgirl

FOR CYCLE_PATH   I am interested in IORT.  My dr wants me to participate in a study using radioactive "seeds" implanted right at the former site of my DCIS.  I am having trouble finding any info on it.  I am 47 and have grade 3 DCIS, so I am a bit concerned that maybe this is not for me.  However, avoiding radiation sounds good!  Do you know if DCIS reappears can you have radiation then, as I understand a breast can only be radiated once. Thanks for any info you may offer. 

cycle-path

lmr: The procedure you're talking about is different from what I had. What you've been offered is generally called brachytherapy. If you search for that term on this site or on the web you'll find a lot of information.. 

Both IORT and brachytherapy *do* involve radiation, but neither of them is the whole-breast radiation that takes several weeks and which most BC patients end up getting.

I believe that if you have IORT and later get DCIS in a different area of the same breast, yes, you can have another lumpectomy and radiation. Possibly Beesie can confirm whether this is true. 

Beesie

Sorry, I'm afraid I can't help on this one.  I had a mastectomy and didn't require radiation, so I've never done any reading on the different radiation options.  In fact while I was aware of radiation seeds and had heard of brachytherapy, I didn't realize that they were one and the same!

Here's some of what I can find about brachytherapy from this website:

http://www.breastcancer.org/treatment/radiation/types/internal.jsp 

http://www.breastcancer.org/treatment/radiation/new_research/20091106.jsp 

http://www.breastcancer.org/treatment/radiation/new_research/20091013c.jsp 

Thora

I was diagnosed with DCIS.Non invasive.Tumor was very small 1/2 cm and margins were clear.Stage 0.No chemo or radiation but on tamoxifn.I had one tumor.It was biopsied and cancerous.Then I was scheduled for surgery.As the radiology doctor was marking my tumor for the B surgeon and prepping me for surgery she said I needed to go back on the mammogram.She found another tumor.I was ticked and upset. A shock. After surgery the doctor told my husband about the new tumor.It was benign.What a relief.Went back to see the doctor.Was told everything was good but he would like to do a second surgery to check all margins.I agreed to it.That surgery was scheduled  3 weeks later.2 days before that surgery I was doing a self exam.I thought I felt something but it could be fluid from the first surgery.Don't need to call the doctor I will be in surgery in 2 days.As I was being prepped I told him about the new place and I think it is fluid.He checked and told me "I  will see when I get in there".It was another benign tumor.My doctor called me on a weekend to give me the news.It was about 4 pm on a Saturday.I guess he just got the report and had to call me. What a roller coaster it was for sometime so it took awhile to feel comfortable with my good diagnosis.I was paranoid.What will happen next???? It will be 2 years in July.It is a time when you want your life to speed by.Just get those semi annual and annual mammograms and PRAY for the best.      

CarylC

My original dx was DCIS then my biopsy showed 2 microinvasions but my BS downplayed that and kept calling it "precancer" even in the room before my bi-mx.  She was explaining to my family that it was just "precancer" and when I questioned the microinvasions she said they were so small, not to worry.  Well, I woke up to find I had nodal involvement and had moved from "pre-cancer" to stage 2 in a couple of hours.  My signature line showed DCIS and then stage 1 because of the microinvasions, even if the BS didn't think they were important, I did!  

On Wednesday, I should find out the final pathology and dx. 

kitkat123

I was DCIS STAGE 0, but it took three surgeries to clear the margins and rads.  I am now feeling discomfort in the same breast, and 4 yrs out.  I know I need to call the dr to make an appt. but very afraid.  Mine was a 7.6 which is not small.

kitkat123

I have to laugh love, because I point due armpit!!!:)  I was small to begin with, and my healthy one sags, so I am about two inches lower on the left than the right!!  Scar tissue is an issue, and I need to see my dr again.  Not sure what is going on, and very afraid, but I need to get it checked out.  I am Irish, but Wop sided and not Italian!!  JUST JOKING!!!  I had rads, and all has been clear, just discomfort now.  I just want to be safe!

cycle-path

CarylC, please be sure to let us know what you find out. 

Kitkat -- luckily, most of the time when there's pain in the breast it's something harmless. Get it checked out so you can stop worrying. Truly, it's pretty unusual when breast pain = cancer. Usually it's a cyst or something like that. Find out!