Biopsy-proven DCIS not visible on MRI

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Anonymous
Anonymous Member Posts: 1,376

Hi Survivors,

This is my second go-round, after IDC 10 years ago. I'm wondering if anyone had a positive DCIS dx (after biopsy), but an MRI that showed nothing? (Literally, "no suspicious masses.") My oncologist said that can definitely happen with DCIS on MR study. I'm just surprised..

Comments

  • dl1129
    dl1129 Member Posts: 19
    edited January 2019

    Hi Cimo37. I just came to make essentially the same post (except this is my first “go round")! I was recently dx'd with DCIS after they found a tiny area of microcalcs on mammo which was biopsied. Roughly 1 cm, grade 2, ER+/PR+ (both strongly +), HER2-. No node involvement. I have extremely dense breasts and many simple cysts which makes reading my mammograms a challenge. I had an MRI which showed the usual (very dense, many simple cysts, biopsy site tag) but nothing else. Not even the DCIS calcs. I barely thought I heard my doctor correctly so didn't really register til after I left his office today. He certainly was unfazed by that fact, but it surprised / confused me...

  • ColoradoJT
    ColoradoJT Member Posts: 8
    edited January 2019

    I am about to get a biopsy and have a similar story. MRI showed nothing. I don't think they can see most microcalcs on the MRI and not all DCIS presents with tumors- which is what would show on the MRI.

  • ps0705
    ps0705 Member Posts: 122
    edited January 2019

    Same here. I had microcalc on mammogram plus small tumor. Grade 3 DCIS on stereotactic cor biopsy, but MRI with CAD showed NOTHING.

    Your Dr. is on top this. Take care of yourself.


  • LAstar
    LAstar Member Posts: 1,574
    edited January 2019

    I've seen research that MRI is better at detecting high-grade DCIS than low- or medium-grade DCIS. Here is one example (see the table on the 2nd page):

    http://www.cancernetwork.com/breast-cancer/mri-acc...


  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2019

    Thanks ladies. I'm glad to hear it's not unusual. I know calcifications don't show up on MR, but I expected the DCIS to. In any case, I realize the biopsy supercedes the MRI! No scan modality is error free.

    Be well and healthy, each of you!

  • ps0705
    ps0705 Member Posts: 122
    edited January 2019

    Interesting study but I had high grade DCIS (grade 3) and 1.4 cm tumor and NOTHING showed on MRI. Mammogram caught it and I could feel it with self-exam.

  • TB90
    TB90 Member Posts: 992
    edited January 2019

    I actually read that MRI is not effective at all for diagnosing DCIS. Unfortunately, mammos are the most effective tool. Ultrasound even misses at times. But the intro of the mammogram is the result of the increase in DCIS diagnoses.

  • ps0705
    ps0705 Member Posts: 122
    edited January 2019

    I had grade 3 DCIS er-/pr- Concerned after self exam, seen on Mammogram, diagnosed with core biopsy. NOTHING showed on MRI with CAD assist.

    Chose BMX instead of lumpectomy plus radiation because last year the stats showed 2% better cure rate. Am currently awaiting US for possible recurrence due to 2 pea sized bumps on my chest wall (on the DCIS side) with swollen lymph node.

    If mammogram has lead to increase in DCIS dx, I think that's good because if they hadn't caught mine as DCIS it would have turned to stage 4 before I knew it. It seems that is has anyway because my tx was limited to bmx even though it was a high grade. I wish the stats separated out high grade vs. low grade and the incidence of recurrence instead of lumping low grade-high grade to determine tx protocol for the insurance companies. ugh. that's my rant.

  • TB90
    TB90 Member Posts: 992
    edited January 2019

    ps0705: I think your treatment was very thorough for your diagnosis. Mx for DCIS is supposed to provide a complete prevention for recurrence up to 1 or 2 %. I am so sorry for the scare you are currently experiencing. There is no guarantee for any of us. We always worry about the possibility. I had a positive margin after a mx. I am so hoping that these lumps are unrelated to a recurrence. But if they are, unlike me, you have tools like radiation to fight this. Please let us know how you make out and let us support you.

  • eliza_246
    eliza_246 Member Posts: 38
    edited January 2019

    Hi

    I have the situation that my 22mm high grade DCIS did NOT show on mammogram or ulstrasound, but was found when they had to remove Nipple and tissue below for Paget's. It was found in the tissue they removed with the Paget's but hadn't shown on the MMG and US. the week prior when they were looking for any associated tumours etc. with the Pagets.

    I have been given 2 x options - mastectomy or just annual screening......haha - as if I would rely on screening. No offer of radiation as the risks would outweigh the benefits apparently due to the smaller size of the DCIS which had healthy margins.

    My main concern is what else is lurking in the breast unseen waiting to turn invasive before it ever shows up on a MMG? That is presumably why they have offered a MMX - so for me it really has to be a no brainer and have the mastectomy in case there is some more there, unless I am missing something. Surgeon says it is my decision, likely anything that did appear etc. would be treatable - but why take that risk, by treatable he could mean a mastectomy years down the road but risk of lymph involvement by then.

    Wish we didn't have to make these huge decisions!


    All the best to all, any wise info and words apprecidated!

    Thanks

    Eliza


  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2019

    Hi, Eliza.

    In your case, I would request an MRI if it will possibly give you more information. Mammograms for me never show anything but calcifications, and when I had a 1.8 cm IDC tumor it was misdiagnosed as fibroadenoma on US. Biopsy eventually confirmed it, and the MRI prominently showed the tumor. But for you, an MRI may better help you decide between mastectomy or "watch and wait."

    I hope you have peace with whatever you decide... Be well!

  • yogamom2
    yogamom2 Member Posts: 82
    edited January 2019

    Hi all, I had a lumpectomy for DCIS almost 3 weeks ago, also microcalcifications found on mammo, 95% ER/PR +. My BS ordered an ultrasound to rule out an actual mass & eval lymph nodes. She said with dense breasts U/S is more diagnostic than breast MRI. The biopsy was the definitive word, she just wanted to check there was nothing else to be aware of. Hope that info is helpful.

    BTW My surgical path report came back w/ clear margins. :D Still waiting for Oncotype DCIS DX findings.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    I felt a lump -- mammogram showed nothing -- ultrasound saw the lump - 1.3 cm. ---- biopsy diagnosed mammary carcinoma with lobular features --- then MRI saw the cancer AND a 7.5 cm long narrow extension from the cancer lump --- my MO says that is DCIS.

  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited January 2019

    ALL imaging tests have a percentage of inaccuracy - be it false negative or false positive. Tissue pathology following excision is the only accurate ones. I read the cases described above and mine was just the opposite. Mammo saw area of about 5 cm, US saw nothing, MRI saw area of 10 cm in right breast 7 cm in left breast, stereotactic biopsy showed DCIS, final pathology results after BMX, well, read my signature

  • LisaK12
    LisaK12 Member Posts: 107
    edited January 2019

    My DCIS did not initially show up on mammogram, ultrasound, or MRI. Because I had bleeding from the nipple I went for another mammogram and ultrasound 8 months later and the technician really had to fight to find anything that might explain the bleeding. Finally found something that looked like it might be a microcalcification, but turned out not to be -- biopsy came back positive for DCIS. Two lumpectomies with unclear margins and a double mastectomy later, with pathology results showing DCIS was scattered throughout all four quadrants of my left breast and LCIS in the right, I have little confidence remaining in current imaging technologies and just feel lucky that I was symptomatic -- otherwise I might never have known.

  • eliza_246
    eliza_246 Member Posts: 38
    edited January 2019

    Oh my goodness you poor thing. Hearing that re-inforces my decision to have the mastectomy to avoid the worry of anymore unseen DCIS. Just wish the surgeon would allow the double, they are not comfortable with it. Recovery needs to be quick as possible so I will settle for the single and then later in year plead my case for the other one if the lack of symmetry (don't wear a bra ever and not about to start) and the worry of more unseen gets the better of me.

  • MBPooch
    MBPooch Member Posts: 229
    edited January 2019

    eliza_246 - My situation was very similar to yours. I was diagnosed with Pagets but a mammogram and ultra sound both missed the DCIS which was directly underneath the Pagets. I had a MRI that detected the DCIS as well as two other areas, one in the other breast. I had both biopsied and thankfully they were negative but it reaffirmed my decision to go with the double mastectomy. Did you have an MRI or any genetic testing? Sorry if I missed that info somewhere but maybe those results would help with your decision. I had a BMX with direct to implant and the recovery was not as bad as I thought it would be. I was off the pain meds after a couple days, was out and about after a week and a half and felt pretty good about 4 weeks later, even went on a NYE vacation. Is it the insurance company that doesn't want to pay for the double or your doctors recommendation, could you get a second opinion?


  • eliza_246
    eliza_246 Member Posts: 38
    edited January 2019

    Hi MBPooch

    Yes pretty much identical! MRI would not alleviate any worries as that often misses DCIS as well according to various sources. My NHS team here in UK would find it hard to get the OK for a double. I then had a 2nd opinion privately - he initially was against it, but when he got to know me over the hour and my reasons for it, ie no bra / symmetry, breasts have served their purpose blah blah, he said he would be happy to proceed that way subject to a few other psychological checks, but the insurance here in the UK doesn't cover a prophylactic mmx, although the private doctor may be able to word the reason for it accordingly, not sure.

    But think I will just have a single and see how that goes and how I feel in 9 months time when I have my next screening.

    Your recovery certainly sounds pretty amazing considering! Well done.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2019

    All of you (us) have endured so much, with so many similarities. Thanks for sharing your experiences... I'm praying for each of you.

    In gathering my medical records to take to the surgeon, I ran across a way-back radiologist's note that answers my original question when I started this thread. From my 2009 MRI to determine extent of disease, it concludes with: "MR may not detect some in situ carcinomas or low grade malignant lesions." WOW! Makes sense now.

  • eliza_246
    eliza_246 Member Posts: 38
    edited January 2019

    Hi Cimo37

    Looking at your profile for diagnosis treatment, I see no treatments listed, I just wondered what were their recommendations for the DCIS they found in November?

    Thanks

    Eliza

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2019

    Hi, Eliza.

    I've only had the biopsy so far, and am just now going to a BS (Feb 13th). I wasn't gonna treat, but have decided on lumpectomy. I'm sure the surgeon and my onco will have their recommendations. My onco has been telling me to see the surgeon. I chose against tamoxifen and chemo the first time around, and won't do anything beyond lumpectomy for the DCIS.

    I'll update you with their recommendations after my appointments. Hope you're doing well!


  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    Quick update: mastectomy is now most likely. LT breast is full of calcifications, large area of DCIS, and atypical hyperlasia. Breast surgeon said she'd have to remove a humongous portion of my breast if I wanted just a lumpectomy. So... meeting with plastic surgeon next.

  • LisaK12
    LisaK12 Member Posts: 107
    edited March 2019

    cimo37 -- Many of us have been through exactly where you are now. I am so sorry you are having to go through this too, but there is a wealth of experience and information on this site which can be incredibly helpful at each step of this process. Good luck and please let us know how everything goes.

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