Need some input DCIS grade 3

I also had two spots of DCIS, but mine was multicentric, at least I thought so.  I had one biopsy at the 11:00 position and another at the 6:00 position.  On final pathology from the "real" surgery it's listed as multifocal, so I'll have to ask my BS about that next time I see her.  Maybe internally they were much closer together than it seemed from the biopsy entry points. 

The first area found was grade 3 w/comedonecrosis.  Then I had an MRI, which found the second area - grade 2 to 3 without comedonecrosis.  So, yes, sometimes MRI does reveal more bad news; though the majority of things that show up are 'false positives' and turn out to be benign on biopsy. The way I see it, it was better to get the bad news and get it all out the first time

Obviously it's hard to say since you haven't yet had the MRI, but depending on the size of your breast in relation to the size of the tissue that needs to be removed, you might well have a choice between lump & mast.  

With your family history, you might consider doing the BRCA genetic test if the result would influence your decision.  I took the test (maternal grandmother, but that's all I know of).  I thought if I was positive I'd probably have done a mast, maybe even a double mast, but I was negative so I didn't really have to consider what BRCA meant or didn't mean for me.

My first surgeon passionately advocated for mastectomy but I wasn't emotionally prepared to do that so I pushed back and consulted with a LOT of other surgeons.  There were a continuum of opinions, some were more comfortable trying a double lumpectomy than others.  In the end I found a BS / PS team who suggested combining a very large lumpectomy with a reduction and lift on both breasts, which is the way I went.  That was only possible b/c I had large breasts and the DCIS happened to be located in a way which would work for that surgery. 

That's my roundabout way of saying you may have more options than you think.

Wishing you the best! 

Hi, JKZ,

I was dx with DCIS, 4.5 cm. comedo in July.  I have small breasts.  The MRI showed a larger area than originally thought, so my option was limited to a mastectomy due to the size of the area, and the size of my breasts,  and I had a unilateral one in July.  Sure, I loved my breasts, both of them, but honestly, I have found a certain "comfort level" with having the mastectomy.  I think it's just how my brain operates---I even have days when I forget I don't have two since my prosthesis sure makes me look like I used to.  I am, however, 48, and I don't know how I would have felt had I been younger when diagnosed.  At the time of my initial diagnosis, when I thought a lumpectomy could be one of my options, I still noticed myself thinking mastectomy might be a better choice for me.  That was just me and my way of thinking it through.  Take your time getting all the facts, if you have the option, and also let your gut/intuition lead you.  I have found you have to be comfortable making the decision when it comes right down to it. 

I will be having a bilateral mx with DIEP reconstruction for DCIS in my right breast.  This was my decision.  Even though I was always told it was my decision, all of the Drs I saw (except for the radiation oncologist!) seemed to be in favor of (without actually saying so) of me having a mastectomy of the right breast.  They said because of my age (42 at time of dx) and the fact that mine was grade 3 and ER-, they were more concerned about lifetime recurrence.  I decided to try the lumpectomy but they took out a good size area (9cm x 7cm) and there was still a positive margin.  I really don't want to have the radiation anyway, so I've decided to go forth with the bilateral mx. Even though I am BRCA neg, I have a family history of ovarian cancer, so no Dr second guessed my decision to do the bilateral.  It was a difficult decision to come to, but it is the right one for me.  Good luck to you.

Just thought I'd add....my left breast is (and always has been) completely clear and my insurance company has given me no problems doing the bilateral mx.

I was diagnosed with grade 3 DCIS measuring .5 cm after mam and then biopsy followed by MRI and then MRI guided biopsy (2 locations).  Recommendation was to have a lumpectomy which was done last week.  Path report came in today and DCIS was 4 cm not the small .5 cm (big difference between 5 mm and 4 cm) - good news is that it was all DCIS.  Bad news is that it's huge and one margin is only 1 mm.    Not sure what's next. 

Hi there Ugh123, so sorry that you have to join us here, but you have found the right place to get support and advice.

I am another DCIS girl. I had a mix of both intermediate and high grade. I had a Mx, by choice. My pathology didn't change, thankfully.

I believe that the advice given by Annette would be the way they would go with this. Wider margins will be needed to clear this.

I do wish you all the very best, let us know how you do. Take care.

Ugh123-If additional re-excision is not possible due to the close margin being near the chest wall, another option is "boost" radiation to that area.  When I was going through radiation, another patient with whom I became friendly, needed to do that.  I'm being treated at one of the world-famous cancer hospitals, so I know it's sometimes possible to do that.  Ironically, if the area is near the chest wall, when they do a MASTECTOMY for DCIS, sometimes they have to radiate, as well.

I had a <1mm margin after the second surgery, and opted for a third surgery, which turned out to be totally clean/clear.  I believe that I had around 5cm plus of DCIS.  The breast (which has now had six surgeries--long history of this stuff), did not look so pretty after the last surgery, but somehow, the appearance has actually improved after radiation.  The cosmetic distortion (which would not be visible from a low cut dress) and is mostly noticeable when I raise my arm, is not really so bad at all.  I still have the breast.  Well, that was my choice.  Others choose something else.  I'm even ready, now, to change in a locker room (didn't feel that way right after the surgery).

Good luck to you.

JKZ--good luck to you as well. MRI's are great but also problematic, lots of false positives (finding things that turn out to be nothing later).  I hope yours just adds constructive information.  I'm having another MRI on Monday to follow up on a nodule found in the other breast. 

Hi Ballet12, Ariom and LAstar,

I feel a lot better after reading your messages.  I've had a total of 3 biopsies (ultrasound, mam and MRI guided) in this breast and only one area was positive for DCIS - the areas where pretty far apart and couldn't have been removed with one incision.  The MRI guided biopsy involved the needle being inserted in two locations (I wasn't clear in my original post).   I see the surgeon and oncologist tomorrow and hopefully they suggest going in and taking a little more or modified radiation.  The bandage is still on from my lumpectomy so can't really see how the breast looks but it doesn’t seem much smaller.  I think I've been extremely lucky.  I had almost no pain after the biopsies and lumpectomy and took a total of 6 Motrin tablets after the lumpectomy.  I wouldn't be upset with another lumpectomy surgery since the first one was not painful and there still seems like a lot of breast tissue left.  Thank you for your warm wishes.  This is a pretty unsettling experience.

Thankful2day, I'm sorry that you've had to join us.  There is one thing that you said that I want to comment on:

"I have opted for BMX because in my mind I feel if there is no breast tissue, then breast cancer can't come back there!"

Unfortunately that's not the case.  After a BMX, you will still have a small amount of breast tissue - it's simply impossible for the surgeon to remove it all.  So generally after a BMX, you are left with about a 1% - 2% risk of recurrence (which could be higher if you have close margins) and a 1% - 2% risk of developing a new primary breast cancer. That's a low risk, and it's as low as you can ever get it, but it's not zero. If you read this board you'll find many women who unfortunately have had a recurrence or the development of a new BC after a BMX. 

The other consideration is that if it should turn out that you have invasive cancer in addition to DCIS, that presents a different risk, the risk of mets.  Having the BMX does not affect or reduce this risk at all.  Hopefully your final diagnosis will be pure DCIS so this won't be something that you'll have to worry about. 

I'm not saying any of this to discourage you, but it's important that you understand this so that you remain diligent and check for lumps even after a BMX.