Stages/Levels of DCIS??

SaraJane

I'm in the middle of all of this... I'm sure I've explained myself somewhere but to refresh:

 *Presented lump in Sept during regular annual physical

*Had Mammo/Micro Mammo/Ultrasound -found areas of calcifications in both breasts

*2 stereotactic needle biopsies in L breast - First came back ALH  the second DCIS

*Couldn't localize area in R breast with stereotactic needle biopsy

*Couldn't have MRI due to metal clip in brain from surgery in 1980 

*Had excisional wire guided biopsy today will get results soon

My QUESTION...

Many of you are talking about Stages or Levels of DCIS, I asked my surgeon today (Breast Surgeon not gen surgeon) what the variations/levels/stages of DCIS were... she said there are none, all DCIS is STAGE 0.  

Do some of you have some wisdom I'm not getting here???

*deep breath*

 When I first visited this site in late Sept/08 I didn't understand why there was so much emotional anguish involved with being dx'd with DCIS or why it was so difficult to chose a type of treatment... I now Fully Completly Understand  This is a total 'Mind Screw'  

LisaAlissa

Hi SaraJane!

I'm so sorry that you're having to deal with this...

Stages & Grades are two different things.  Your surgeon is right.  DCIS is Stage 0.  However within that, the your DCIS can be low grade (aka "Grade I"), moderate grade (aka "Grade II") or high grade (aka "Grade III").  (You don't want to be "high grade" here.) 

You can read more about these classifications here:

http://www.breastcancer.org/symptoms/dcis/type_grade.jsp

and you'll also see links (at the bottom-left of that page) to more info on how that info gets used by your medical team as they're planning your treatment.  BTW, the info about the grade of your DCIS is something that should be able to find on your pathology report. 

Sorry that your surgeon didn't understand what you were asking... 

at any rate, HTH,

LisaAlissa

Deirdre1

Mind screw is right!  "you are so lucky it's just DCIS"  "DCIS until very recently was a pre-cancer" then oh but you should have it removed (understandable) then radiation or "you can be done with it all and have them both off".  These are just a few remarks made by my doc's (before I changed them!)..  Your doc may be trying to lead you to what she wants you to do but good for you for doing the research!  She may be a great doc, but ultimately it is your life, and your loss..  (Honestly folks I just have NEVER understood rad except for reducing the tumor for pain relief.. after it reduces the tumor IMO it can do harm elsewhere) Or for that matter x-ray (mamo's) exposing the breast yet again to more (albeit mildly) radiation - add on the years of scans and even air plan scans and IMO this could be where all the bc is coming from!   Now for my disclaimer.. there are plenty of women out there that trust and believe in the radiation so I am not a doc.  please no back fire this is just one women's opinion - thanks and Good Luck SaraJane!!!! 

Beesie

LisaAlissa gave you the answer - all DCIS is Stage 0.  All DCIS is non-invasive and cannot spread outside of the breast. That's the easy part.  From then on, it's complicated.  All DCIS is not created equal.

The difference between having a small amount (< 1cm) of grade 1 DCIS and a large amount (5cm+) of grade 3 DCIS can be huge.  This is why there are so many variations in the treatment of DCIS.  The recurrence risk after a lumpectomy for DCIS can range from over 40% (large amount of high grade DCIS ) to as low as 5% (small amount of low grade DCIS).  Most diagnoses fall somewhere in between.  While grade and amount of DCIS are two critical factors in determining recurrence risk, another key factor is the size of the margins after surgery. 

Whatever the recurrence rate after a lumpectomy, radiation can cut it by about half.  For those with ER+ DCIS, Tamoxifen can cut it by about another 40%.  But if the DCIS is ER-, Tamoxifen isn't an option.  For anyone with DCIS, there is always the option of a mastectomy.  Some of us in fact have so much DCIS that a lumpectomy isn't an option; a mastectomy is our only choice.  After a mastectomy, usually radiation isn't necessary and usually Tamoxifen is considered optional.  The recurrence risk after a mastectomy for DCIS is generally in the range of 1% - 2%.  This is a great incentive for many women but many other women prefer to have a lumpectomy (+ any other post-surgery treatments) so that they do not lose their breast.  Both are equally valid decisions.   

Another complicating factor is that those who have a large amount of high grade DCIS face an increased risk of having a microinvasion (a small amount of IDC).  If a microinvasion is found, then it's not really DCIS after all, it's Stage I IDC.  And if a microinvasion is found (or often even if it's just a possibility), then an SNB (sentinel node biopsy) will be done.  

So all DCIS is Stage 0 but DCIS has lot of variations - grade, hormone status, amount of DCIS, size of margins, etc. - and each of these factors influences the treatment decision.

SaraJane

Thank you very much for your replies ladies... this is very informative and helpful!  I will actually print the definition(s) from this site and take it to my next appointment.  

 Call me 'crazy'... but I'm actually hoping they will find DCIS in my right breast as well... then it will be much easier to make the decision to have the bilateral with reconstruction... I don't want to have to deal with this for the rest of my life.   

DocBabs

DCIS in itself is not invasive but if left untreated it can become so.This is how someone would go from DCIS to mets.Of course all this does not happen overnight.