DCIS Followup Surveillance - MRI or Ultrasound

BCAE

Hello! I am at my 12 month followup time since lumpectomy surgery for multifocal (about 4 cm area), intermediate stage DCIS. Against my doctor's advice, I opted not to do radiation. However I am taking Tamoxifen. As followup, my breast surgeon wants to alternate mammograms with MRIs every 6 months for who knows how long. I guess I didn't think that much about the MRIs until now, when I remembered that another doctor (a 2nd opinion radiation oncologist) recommended automated whole breast ultrasound instead of MRI for followup surveillance. She cited the new findings that Gadolinium used for contrast in MRIs deposits in the brain. (The Radiologist who would be doing my MRI confirmed the truth of this finding, but feels the benefit outweighs the risk.) She also felt that since I have no family history of breast cancer, it wasn't worth the risk to get a MRI. My Breast Surgeon and Radiologist say that the ultrasound isn't for detecting DCIS, just invasive. However, isn't it the invasive kind that I need to really be concerned about? And I am still going to do the mammograms 6 months from now. I was thinking about doing one more MRI just to confirm that the DCIS is gone (I didn't do the radiation after all), and then switch to ultrasounds. Anyway, I am totally confused! I would like to know what your followup regimen has been since DCIS treatment. Anyone recommended to use the new automated whole breast ultrasound? Thank you!

Ingerp

(1) I only ever had an MRI before surgery two years ago. BS wanted to make sure there wasn't anything going on in the other side. Keep in mind I was told they have a HIGH false positive rate--like 30%. "Those MRIs light up *everything*."

(2) My follow-up schedule was 3D mammo every six months.

(3) FWIW:

http://www.breastcancer.org/research-news/20070810

BCAE

Ingerp: Yes, I also had a MRI before surgery too. It detected a suspicious area above my biopsy site that lead the BS to take out extra during lumpectomy. Ultimately that is how they found 2 additional lesions that they didn't know about. How long will you have your 6 month mammograms?

LisaK12

I had the opposite problem -- my DCIS did not show up on the MRI that I had. If I had not been bleeding from the nipple I don't think they even would have done a biopsy. Then after two excisions, still no clear margins. Now that I had a double mastectomy, I feel confident that they got everything they could. The sentinel node tested negative as did the nipple.

My only point is that all technology has its limitations, and testing negative may seem like a comfort, just as testing positive may seem alarming, but both false negatives and false positives do exist.

Ingerp

BCAE I was told it would be for five years. (Although lucky me--I just re-started that five-year clock. <sigh>)

BCAE

LisaK12: Good point...what is good test for some is not a good test for others.

BCAE

Followup...I decided to do the automated whole breast ultrasound and save the MRI (and its potential risks) for another time, if I should need it. The radiologist (who only does breasts) discovered an area that looks to be either scar tissue from surgery or residual DCIS...he recommends waiting until my next regularly scheduled mammo to compare to see if it is truly DCIS. But my BS (who always thought MRI was a better test) wants me to do MRI now just to rule out that I don't have any left over DCIS. I don't know to do now! Any thoughts?

brigid_TO

Hi BCAE Sorry you are having to deal with this-I know it can be really stressful. I have found that when you opt for lumpectomy what you get is very diligent followup especially in early years. I had the same "is it scar tissue or a new breast cancer?" testing at my first follow up. An MRI was never suggested but I had several mammograms and an ultrasound leading to a biopsy. Thankfully that was benign but I realize they are going to test the heck out of anything that looks even slightly offsides.

In your situation you declined the radiation-in mine I have come off of tamoxifen (too many SE's). Those choices increase our risk of recurrence so you can expect your medical care to reflect that.It's not easy.

Please let us know how it goes.

LisaK12

So I had a bilateral MRI post-mammogram and post-ultrasound and it did not detect anything. After that, following two lumpectomies in my left breast it was clear I had multi-focal DCIS with no clear margins. So I decided to have a prophylactic bilateral mastectomy. Left breast had DCIS on 9 of 45 slides (one-fifth of samples) plus ADH and intraductal papilloma. Right breast had ADH, LCIS, and intraductal papilloma, none of which had showed up on any previous scans.

Technology has its limitations.