doeeyes,

What do you mean by "I am at 4 (before it turns)".

"4" what?

And did you have 3 separate areas of calcifications that were all biopsied now, or have you had 3 separate biopsies over the years?

The following discussion thread, in which I pulled together much of what I've learned about DCIS over all my years on this board and digging into the research, might be helpful to you: 

A layperson's guide to DCIS

Interesting.  I've been reading up on DCIS for 8 years and I've never seen "levels" mentioned.  From my understanding, I thought that there was no way that anyone can tell when or if DCIS cells will break through the duct wall.  A biological change needs to happen at the cellular level, and that's not something that can be seen or even predicted (there is lots of research on-going that is trying to find out if triggers can be identified). 

I've just done a search on "DCIS levels" and "DCIS level 4" and nothing has come up.  Do you have links to any articles or studies that talk about DCIS levels?  I'd certainly like to learn more.

april, I think you are probably right, but unfortunately doeeyes showed up once and never had come back again.

And that doesn't explain rettemich's post. I really am curious, particularly since rettemich just joined the board today, and has posted just this one time.  I hope that she does return to provide more information about what's she's said.

rettemich,

Thank you for posting that clarification.  DCIS does come in 3 grades - but not 4.  And it is true that grade 1 (also called low grade) is considered to be less aggressive and less likely to develop into invasive cancer (or it may take longer to progress) whereas grade 3 (also called high grade) is more aggressive and more likely to develop into invasive cancer within a shorter period of time. Grade 2 (intermediate grade) falls somewhere in the middle.

Having a grade 3 DCIS doesn't mean however that the DCIS is just about to break through the duct wall - maybe it will, maybe it won't.  In any individual case, nobody actually knows when or if the DCIS will break through.  And similarly, having a grade 1 DCIS doesn't mean that the DCIS isn't about to break through.  There are some examples here of women who had grade 1 DCIS and who were found to have microinvasions (tiny areas where the DCIS has already evolved to become invasive cancer and has broken through the duct).

breastcancer.org, the site that we are on here, actually has some of the best information about DCIS.  Their explanation of the different DCIS grades is excellent.  You can see from the accompanying graphics that it's not actually how full the duct is with DCIS cells that determines the grade; it's the appearance of those cells and the growth rate of those cells that is most critical.  There is a type of DCIS that is called "solid".  Solid DCIS completely fills the duct, yet if solid DCIS is not accompanied by necrosis, it's more likely to be graded as grade 2 rather than grade 3.   Comedo type cells with necrosis (also called comedonecrosis) are the DCIS cells that are the most aggressive.  If someone is found to have just a few of those types of cells, they might still get a grade 2 as an overall assessment of their DCIS.  But in most cases, the presence of comedonecrosis means that it's a grade 3 DCIS.

Here's the info from breastcancer.org:  Diagnosis of DCIS

Grade I (low grade) or grade II (moderate grade)

Grade I or
low-grade DCIS cells look very similar to normal cells or atypical
ductal hyperplasia cells. Grade II or moderate-grade DCIS cells grow
faster than normal cells and look less like them. Grade I and grade II
DCIS tend to grow slowly and are sometimes described as "non-comedo"
DCIS. The term non-comedo means that there are not many dead cancer
cells in the tumor. This shows that the cancer is growing slowly,
because there is enough nourishment to feed all of the cells. When a
tumor grows quickly, some of its cells begin to die off.

People
with low-grade DCIS are at increased risk of developing invasive breast
cancer in the future (after 5 years), compared to people without DCIS.
Compared to people with high-grade DCIS, however, people with low-grade
DCIS are less likely to have the cancer return or have a new cancer
develop. If more cancer does develop, it typically takes longer for this
to happen in cases of low-grade DCIS versus high-grade.

There are different patterns of low-grade and moderate-grade DCIS:

• Papillary DCIS: The cancer cells are arranged in a finger-like pattern
  within the ducts. If the cells are very small, they are called
  micropapillary.
• Cribriform DCIS: There are gaps between cancer cells in the affected breast ducts (like the pattern of holes in Swiss cheese).
• Solid DCIS: Cancer cells completely fill the affected breast ducts.

Grade III (high-grade) DCIS

In the high-grade pattern,
DCIS cells tend to grow more quickly and look much different from
normal, healthy breast cells. People with high-grade DCIS have a higher
risk of invasive cancer, either when the DCIS is diagnosed or at some
point in the future. They also have an increased risk of the cancer
coming back earlier — within the first 5 years rather than after 5
years.

• High-grade DCIS is sometimes described as "comedo" or "comedo
  necrosis." Comedo refers to areas of dead (necrotic) cancer cells, which
  build up inside the tumor. When cancer cells grow quickly, some cells
  don’t get enough nourishment. These starved cells can die off, leaving
  areas of necrosis.

.

.

And here is another website with an excellent explanation of DCIS grades: 

Type and grading of Ductal Cancinoma in Situ, or 'DCIS'

Oh my Sweetie - I am so sorry to hear of your diagnosis/treatment to this point.  How incredibly difficult, with three children under 5; as you say, a young family.  The good news is this has been found, and is being addressed.  The hard news is that like all of us, talking to different docs, getting different opinions, and deciding, ultimately oneself, about treatment is a rigourous journey.  Though I have a strong feeling that you and your family will come out well on the other side of it.  I see you have also joined the group which includes Paget's.  Before long, several women who know more than I do (I'm fairly new) will be answering you with real info appropriate to your circumstance.  It would be helpful if you went to the Settings area at the top on this board, and then put in your exact diagnosis and treatments to date (if not in the multiple choice boxes, you can put the whole thing under "signature", and be sure to set them to "Public", or we can't see it); then it will show at the bottom for anyone reading your Posts, and you can add to them if you need to, later (hope not).  The difference between the "wait and see" and the mastectomy is, of course, mind-boggling, and you need to talk with a lot of people and do your research, and ask a lot of questions before deciding.  Certainly, you have come to the right place.  Let us know what goes on.  Love - P.

Kylie, I have a young family too with 3 kids and it is scary.  I had no choice but to have a mastectomy (DCIS was too widespread) and it has not been a walk in the park.  There are lifting restrictions for 2 months at least so I can't put my toddler in her crib or pick her up.  Reconstruction is also hard work.  I have a huge hip to hip scar from my Diep flap.  There can be complications also from implants.  If I had a choice, I believe I would have chosen the partial in order to return to an average life more quickly, and avoid reconstruction, and I could have avoided an SLNB too.  There is no ultimate survival benefit to having a total mastectomy over lumpectomy + rads.  Even if it meant 2 different sized boobs, I think I would have gone this route.  The clincher would be a family history, which would push me toward the double mastectomy, especially BRCA mutations.  Luckily I didn't have that and so I opted for a single mastectomy, and I'm glad- a double would have been really difficult with the lifting restrictions, muscle weakness and so on.  Some women have ongoing problems with shoulder, rotator cuffs, etc after mastectomy.  I am hoping this doesn't happen to me but it could.  I might take tamoxifen to lower my chances of recurrence in the other breast and this could be an option for you too depending, and in your case it would also help prevent recurrence in the same breast if you went with partial.  Your DCIS has to be ER+ to use it.   Good luck- there is no clear path, unfortunately, and all of the above is just my personal take on things, which might not be right for you.

Hi Kylie!  Sounds like you are getting good advice from your docs.  I was a little confused, I didn't realize that bmx was already a sure thing for you.  I agree, my PS said recovery from reconstruction with TE is faster than with a DIEP.  I am sure they went over all the pros and cons of each with you, I decided that DIEP was better for me but I really agonized over the choice.  I do have a lot of help from family and superman DH, and was able to take enough time from work, so I feel really fortunate.  I can do more with my right arm every day.  Go with your gut.  I think most women are happy with implants but you can always have a flap at a later time if you just hate them.  I do worry about the other breast but I just couldn't bear removing it, and my MRI came back fine on it, so I'm just hoping for the best.  The odds should be in my favor but I know I will worry, hopefully that will subside over time.

My DCIS was right up in the nipple but they never said Pagets.  It's kind of a different thing, right? 

I plan to ask my surgeon this on Tuesday, but you are all so knowledgable, I thought I'd ask you.  I was diagnosed with DCIS and had a Segmented Mastectomy last week.  The pathology report returned Wed.  My breast surgeon told me my margins were clean (Yeah!) but that there was microscopic evidence that the DCIS had broken through and was outside of the ducts.  Due to this, I'm scheduled for seminal node biopsy next week:(  She also said I moved from 0 to 1.  Is this still considered DCIS?

Hi Kylie - Yes; your husband is right, I feel.  You HAVE won the health lottery.  Not for getting this at all, but because you're going to live.  You're going to be fine, you're going to see your girls grow up and be there for them.  I know this is just devastating, no matter which option you go for.  Certainly you did not expect this.  But, in the end, you will have a surgery/treatment you can live with, it will be challenging, and then it will be over.  I've had a lot of upset that I had to be in the BC world at all.  No family history of BC, in fact no cancer at all.  The area in which I live, the SF Bay Area, has almost double the national BC rate.  Many conflicting reasons about why.  No one could have been more surprised than I.  Still, even with the future screenings and worry about such when they happen, all I had to do was be at the rads center with women much higher staged than I was to be humbled.  They are fighting for their lives, and we, very probably, are not.  You didn't expect this, but it sounds like you have a great husband, and I feel sure you're going to have a great life.  As am I, at 57.  Unfortunately, it's always something.  I'm very glad you have joined us here to get love, support, information, feedback, and just a place to come to. xx

motherofone,

From what you've described, it sounds as though you have a microinvasion, or possibly a slightly larger invasive tumor. By definition a microinvasion is no larger than 1mm in size so even if your tumor is just 1.1mm in size, it would no longer be considered a microinvasion but instead would be a T1a tumor.  T1a tumors are larger than 1mm but no larger than 5mm.  Whichever it is, it's a small amount of invasive cancer. 

The presence of any amount of invasive cancer does mean that your lymph nodes need to be checked.  While DCIS cells cannot travel to the nodes, invasive cancer can.  That's why you are having the sentinel node biopsy.  But with such a tiny invasive tumor, the risk of nodal involvement is very low.

So now you are Stage I rather than Stage 0, and no, this is no longer considered to be pure DCIS.  If you have just a microinvasion and if your nodes are clear, then your diagnosis will be Stage IA,  DCIS-Mi, with a T1mi tumor. That's my diagnosis.  If your invasive tumor is any larger than 1mm in size, then your diagnosis will be Stage IA, IDC, with a T1a tumor. 

The good news is that with such a small invasive tumor, the treatment usually is no different than it would be for pure DCIS, and the long-term prognosis is almost the same.

Edited to note:  Percy, you and I were posting at the same time!

See; there is our Beesie!  And, while you need to find out the HER2 status, don't despair at all.  HER2 neg is desirable, but HER2  pos has a very effective treatment.

Thanks for pointing that out, Beesie.  I did not know the size of the invasive cancer mattered to the HER2 status.  I'm so happy you know so much.  Hopefully, in time, I will be able to give more accurate advice.  I really can't imagine what we all would do without you here, seriously.  You have helped me, personally, so very much.  In future, I intend to always say that what I have learned is only what I surmise from what I have read and heard here.  It is a hard call to be new here, yet wanting to support the newer ones.  I think I've learned to keep my advice to what I"m sure of.  Love - P.

Again, I continue to be impress with all or your knowledge.  My post op for my Lumpectomy is on Tuesday.  I will inquire about the HER status and post back.  She did say 1mm, though during the phone conversation I did not realize the significance of it.  She did tell me that if the cancer has moved to my seminal node, that my course of treatment would change.  Since I was to just do radiation for 6 weeks then Tamoxifen  for 5 years, I'm guessing that if it is in my lymph nodes, the next step is likely chemo.