It is very possible that it is all DCIS.  Although size of area of DCIS does increase the chances of invasion, lots of women have had very large areas of pure DCIS.  I have also noticed that the estimated size of the DCIS is often very different in the final pathology report (sometimes much larger or smaller).  There are often surprises along the way (good and bad), so it is best to wait until the final pathology reports are available.  But in the meantime, you can be reassured by the likelihood of an early breast cancer.  

annajo,

I had more than 7cm of DCIS (most of it high grade with comedonecrosis) - it's hard to know the exact amount since I had two areas of DCIS and two surgeries.  And I did have a microinvasion of IDC... but just that one tiny 1mm microinvasion. 

I know that everyone who has a preliminary diagnosis of DCIS fears that some invasive cancer will be found during their surgery, but I can tell you that just one or two microinvasions barely makes a difference.  The long-term prognosis for DCIS-Mi is only 1 percentage point off the long-term prognosis for pure DCIS.  And the treatment is the same.  So while I hope that you do end up with pure DCIS, if in the end you have a microinvasion or two, and nothing more, it won't be much different. 

Good luck with your BRCA results, and with your surgery!

I had a breakfast sausage sized lump in my breast, so I think it was pretty big. I can't remember exact dimensions, but I remember how long and wide it felt. It was all DCIS and pre-cancer.

My journey started on December 3, 3013, when a cluster of microcalcifications were found on my annual
mammogram. I had a second mammogram with magnification; and based on the
results, I was scheduled for a stereotactic biopsy.   I received the
results of the biopsy--DCIS, Stage 0, Grade 3, Non-Invasive--and made an appointment with a breast cancer surgeon.   I was scheduled
for a Radioactive Seed Localization and Lumpectomy, and I felt that both went very
well. However, my surgeon called yesterday with the results of my surgical pathology report. The area of my DCIS was 6.2 cm, which is
larger than what was expected; and she feels a reexcision is necessary to get better posterior and lateral
margins. I knew going into the lumpectomy that reexcision was a
possibility, but what really through me was when she said that if she could not
get the margins she wanted, she would recommend a mastectomy. I was
mentally ready for a lumpectomy, radiation, and meds for five years, not a
mastectomy. I meet with her tomorrow to discuss my report in detail and
to schedule my second surgery. I would be interested in hearing from
anyone who is or has been in a similar situation.

vfay, I was in exactly your position. I had 2 areas of calcifications and after a needle biopsy found ADH, I had an excisional biopsy that removed lots of breast tissue full of high-grade DCIS (and a microinvasion of IDC) but that didn't result in any clear margins. So more surgery was necessary.  Some women know from the start that they want a MX or BMX but that wasn't me - like you I was prepared for the lumpectomy and rads and the last thing in the world I wanted was a MX.  I probably would have had my surgeon attempt a re-excision (a lumpectomy) except that after my excisional biopsy I had an MRI, and it showed that my breast was full of "stuff".  Of course without surgery we couldn't know what it was, but the best guess was that it was more DCIS. So I very reluctantly agreed to the MX.  It turned out that my breast was full of DCIS. 

The good news for me was that the MRI  showed my other breast to be clear (despite 4 biopsies over the years) so I opted for a single MX.  I'm 8 years out, and so far, so good.  I know I have a risk to develop BC again but in the meantime, I'd rather keep one natural breast.  A MX is major surgery that changes your body forever - even if the surgery and reconstruction is easy (for some women it is, for others it's not), living with a reconstructed breast is a major adjustment.  The impact goes well beyond the end of surgery and the completion of reconstruction. 

Since you don't want a MX, I'd say try the re-excision and hope for the best. If it doesn't work, then you do what you have to do. A MX was not what I wanted; given a choice, I would still choose lumpectomy over MX any day. But when you don't have the choice, you do what you have to do, you accept it, you adjust and you move on. Hopefully you don't find yourself in a position where you need the MX - hopefully you can stick to your original plan, just with one extra surgery - but if it does turn out that you need the MX, you'll be fine, just like I am.   

Bessie I want to thank you for all the information you have posted on DCIS.  I read much of it prior to my lumpectomy, and it helped tremendously.  I also want to thank those of you who took the time to respond to my earlier post.  It helps to hear what others have experienced who are in a similar situation.  I have some difficult decisions to make and every bit of information helps.  I am feeling a little overwhelmed.  After meeting with my bc surgeon yesterday,  my story continues to change.  I thought I was going to hear about a surgery date for my re-excision, but she is not encouraging me in that direction.  My path report states that four of six margins were either close or positive.  She is willing to do a reexcision, but if she is not able to get clean margins, she would recommend a mastectomy.  However, she said her main concern is that she doesn't know how she will follow me into the future with or without clean margins because my DCIS is not visible on my mammograms. Just because she gets clean margins does not mean there is not DCIS lurking in another area of my breast.  Therefore she is recommending that I have a unilateral mastectomy with or without reconstruction and made an appointment for me to speak to a plastic surgeon on February 25 to discuss my options if I choose to have immediate reconstruction.

These are my concerns:  I do not know whether I should consider a bilateral mastectomy with immediate reconstruction.  I have a family history of breast cancer but have not yet been gene tested, and it could take well over a month before I could get an appointment and results.  My bc surgeon told me to focus on my cancerous breast for now and to get the counseling and testing after I am healed.   At that time, she feels I can make a decision about my other breast and/or ovaries; but I have concerns about having to go through surgery and reconstruction twice if I learn that I am positive.  I am a young 64 years old, and I fear having another major surgery as I get older.

I had ten centimeters removed. Upon review by three different institutions (including MD Anderson), the path came back as all DCIS.  I am still scared that they missed an invasive component, but I have heard of other cases with large amounts of pure DCIS. Hope that you get good news

annajo, I had a very small area of microcalcifications that showed up on my mammogram compared to a much larger area 6.2+ area of DCIS that was found during my lumpectomy. My surgeon talked to me about a breast MRI, but she led me to believe that even an MRI cannot be conclusive when it comes to DCIS.  She said the MRI could just show a lot of "stuff" and we cannot be sure what that stuff is.  I am leaning towards a unilateral mastectomy with reconstruction but haven't decided on what type of reconstruction at this point.  My surgeon said that I could go on something like Arimidex to protect my good breast following my mastectomy.  I do have a family history, but no one in my family has had genetic testing (mistake!).  I called this morning to see if I could get an appointment for genetic testing before making my final decision: but even if I am able to get an appointment, I am concerned about the waiting period of three or four weeks for results. My surgeon suggested I wait until after surgery to be tested. I do not want to delay scheduling my surgery longer than necessary; but on the same note, if I am found to be positive for the bc gene, I fear I may not be making the right decision.  I do prefer to save my good breast for as long as possible.

Since posting the above paragraph, I  have learned that a Breast MRI is a much better way to detect DCIS than mammography.  I would like to know if the possibility of DCIS exists in my other breast before making a decision on unilateral or bilateral mastectomy.   I will be again asking my surgeon about the Breast MRI.

Hi,

I chose to do a mastectomy (on doctor's advice) after the MRI and an excisional biopsy showed that the DCIS was very extensive. It's a very individual decision. I didn't have very big breasts to begin with, so there weren't too many options.

The second opinions were ones I sought on my own, but were easy to obtain. Many hospitals offer easy paperwork you can fax in to set the wheels in motion.  Good luck!

No rads or meds. The cancer is ER negative so hormonal therapy won't help. The margins are supposedly clean so fingers crossed. I did opt for genetic testing (beyond the BRCA tests) and am trying to do the clean living/prevention so many of the women on this board try to do, e.g.,daily exercise, organic, low-sugar diet, etc