Lumpectomy for DCIS but surgeon declined my MRI request

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Olive4
Olive4 Member Posts: 84

Hi to all,

I had my consultation with the surgeon today re high grade DCIS with some necrosis and possible microinvasion. He has recommended lumpectomy with SNB and said I will need radiotherapy and depending on the final pathology possibly chemo if there is invasive disease.I will have excisional wires placed prior to surgery.

I expressed my concerns regarding having dense breasts and asked about a MRI as my mammogram said that i have dense breasts and my dense tissue could be hiding small masses. I am very concerned that there could be other malignant areas that can't be seen on the mammogram.

He said that there is no need for a MRI and that it wouldn't necessary show anything anyway even if there were small masses present. He went on to say that the imaging they have at the breast clinic is one of the best. I told him that there could then be other areas of concern and he said well yes there could be and left it at that.

I left feeling very concerned. What if there are further areas of DCIS? I had thought a MRI would have been the next step prior to surgery to establish if the area was more diffuse than seen on the mammogram?

Has anyone experienced anything similar?

I was hoping after today I would feel better about things but I really don't!

Thanks.

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Comments

  • Lou10
    Lou10 Member Posts: 332
    edited June 2016

    I have "extremely" dense breasts (there are different categories of density). My surgeon agreed to a pre-surgery MRI because my mammogram and ultrasound images weren't that clear even though the tumour wasn't tiny: 2.5 cm (I found it -- it had been missed by previous diagnostic mammograms). The MRI found a second tumour about the same size, in the same quadrant of my breast.

    Do you know how dense your breasts are? Your mammogram report may indicate that. Did you have an ultrasound as well? Don't hesitate to talk to your surgeon again about your concerns and ask how clear your imaging was. Take good care of yourself.

  • Olive4
    Olive4 Member Posts: 84
    edited June 2016

    Hi Lou10,

    Thanks for your reply. I never had an ultrasound. I had a routine mammography which picked up an abnormality then a diagnostic mammogram which showed architectural distortion and then a core biopsy showed high grade DCIS with some necrosis and possible microinvasion. On mammography my breast tissue was heterogeneously dense approximately 51-75% glandular.

    I thought that a MRI of the breast would have been the next step prior to surgery to be sure of the extent of the DCIS. Not sure what to do unless I am overthinking things. The surgeon was insistent that a MRI was not needed despite my questioning.

    I even spoke with the breast specialist nurse and asked and she said that is not current guidelines.

  • Annette47
    Annette47 Member Posts: 957
    edited June 2016

    I never had a MRI, but I don’t have unusually dense breasts, either. I think it depends (at least here) on each doctor what is standard practice for them. Don’t know where you are located, but would a second opinion be a possibility? In your case I think I would be more comfortable with a MRI before proceeding.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2016

    I would definitely get a second opinion.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    Agree with Cowgirl. If you’re willing to pay (even better, if your insurance will cover it), you should have some kind of imaging that is more reliable on dense breasts than just mammography, direct to core biopsy. Your center’s imaging may be “among the best,” but mammography has its limits and dense breasts are just one (uh, two) of them. You don’t want to proceed with lumpectomy & rads and then find more tumors in that breast--necessitating mastectomy because the same breast can’t be radiated twice. Better you should definitively rule out the medical necessity for mastectomy before proceeding with breast-conserving surgery. (I didn’t, because my breasts are fatty and stuff in them shows up well on mammograms). At the very least, they should be willing to do an ultrasound (non-invasive, and far cheaper and easier on the patient than MRI).

  • Olive4
    Olive4 Member Posts: 84
    edited June 2016

    Thanks ladies, I would love a 2nd opinion but I am in Canada and where I live I would have to see another surgeon in the same facility so guidelines would be the same so not sure how that would all work. Not feeling very confident in my surgeon right now. Oh deep sigh!

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2016

    Oh Olive. I'm sorry that you don't feel like you have options. My worry for you is that you have your lumpectomy and then don't get clean margins and that the surgeon will have to operate again. Ugh. Maybe you can meet with another surgeon at the same facility and confidently insist on further scanning before the operation? I had a chemo board sister from Montreal who had a lumpectomy that didn't do the trick and she ended up with a bilateral mastectomy later (which didn't do the trick because now she's had a recurrence). How did your surgeon feel about a mastectomy?

  • Lou10
    Lou10 Member Posts: 332
    edited June 2016

    What about asking for an ultrasound on the basis of your dense breasts? As ChiSandy noted, they're far cheaper than MRIs. (Having said that, I've had to fight for an annual ultrasound even with my extremely dense breasts and history of tumours being missed.) If they won't go for it, you may be able to get an ultrasound by paying for it. Just make sure to get it done at a place that specializes in breast imaging. The last time I had a mammogram, there was a woman paying to have a breast ultrasound. (In Vancouver.)

  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    My surgeon also didn't do the MRI before the first lumpectomy for high-grade DCIS. He ordered it after the second, though, and only because my husband strongly advocated for it .  Reading all literature and posts here I would say that MRI may add some more information to the case, but at the end of the day only the post-surgery pathology  will be definitive when it comes to the final diagnosis.  What they see on MRI is some background  enhancement and some areas with more prominent enhancement. This needs to be compared to some baseline MRI.  My MRI showed some residual disease around the lumpectomy cavity, but they already knew I had DCIS, thus not a clean experiment.  The exact words used in my case " Residual disease cannot be excluded. 2 small enhancing nodule medial to cavity. Satellite lesions cannot be excluded". As you see, not very definitive. In the perfect world docs would prescribe baseline MRIs when the breasts are healthy, and then monitor breasts with more MRIs. I believe they are reluctant to prescribe MRI because of the difficulty interpreting what they actually see , and the cost, of course. I hope this helps.

  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    Olive...IMO you need to insist on a MRI or get a second opinion. I have dense breasts too. I was scheduled to have a lumpectomy before a preoperative MRI revealed a second malignancy. It was missed on both a 3D mammo and ultrasound. Please do not make any treatment decisions without getting one. It is really the only tool that shows the whole picture with dense breasts. Also are you at a major university teaching hospital? Where you are treated is very important. Good luck and keep us posted.

  • LAstar
    LAstar Member Posts: 1,574
    edited June 2016

    My BS was not inclined to approve an MRI, but I brought him a medical literature review that shows that MRI is indeed more effective in detecting the extent of high-grade DCIS than mammograms are. We certainly want our surgeons to know the extent of the DCIS before lumpectomy so that there is a chance of getting it all the first time and having wide clear margins. My BS approved my MRI which indicated that the DCIS was more extensive than the mammo indicated. I just printed the abstracts of each paper to give to the BS so that he could find the papers if he wanted.

    http://jncimono.oxfordjournals.org/content/2010/41...

    https://www.researchgate.net/profile/Eva_Wardelman...

    http://synapse.koreamed.org/DOIx.php?id=10.3348/kjr.2007.8.1.32&vmode=FULL

    http://www.ejradiology.com/article/S0720-048X(09)00522-1/abstract?cc=y=

    And there are more!

  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    I would say: insist on MRI, but not trust the results completely. Your local imaging facility may have low resolution machines and/or radiologists with limited experience and average skills in interpreting results. Same MRI  also can  be read differently by different specialists. As I understand, each specialist works with data from a particular type of machine, and they are better in  interpreting data from this type only. What they actually see depends on their experience. (MRI is usually showing water and fat, but also inflammation, calcification, and tumors.)  

    Research is usually done by experienced radiologists on good machines to which they are accustomed. In the regular radiology department there are a number of specialists that read data from different machines, and their skills may not be as good. Surgeons may know that. They also may have observed that their experience does not correlate with MRI findings. According to my understanding of how this works, there should be a tandem of a good  radiologist and a surgeon, who knows from experience that this particular radiologist gives him a reliable set of data. In the absence of such experience, the surgeon may just dismiss the MRI findings. This is assuming that there is no pressure on the surgeon to avoid costly tests.

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited June 2016

    I'm in Canada as well. Go back to your GP who originally ordered your mammogram and ask them to write the order for an MRI. THe wait time is extremely long however, so maybe consider private (not sure what province you are in- but in Alberta paying private is common). Worse case ask for an order for ultrasound from your GP. Your BS is only one member of your team... Use them all! And voice your concern about your BS to your GP too!

  • Molly50
    Molly50 Member Posts: 3,773
    edited June 2016

    I would insist on MRI as well. I had what they thought was IDC less than 2 cm, no nodes involved easy peasy do a lumpectomy and be on my way to radiation. Well my original images (not sure why my BS did not have me repeat mammos) was not complete and missed the extensive LVI and I had one node that was 1.2 cm. My surgeon could not get clean margins so I ended up having a unilateral mastectomy 6 weeks after my lumpectomy. I had asked for an MRI but I was not very good at advocating for myself. I did get one before my umx though. I am now headed back for a unilateral mx to remove the good breast because the idea of worrying about a new cancer in my remaining breast is making me crazy.

  • labelle
    labelle Member Posts: 721
    edited June 2016

    I did have an MRI done prior to surgery-both BSs I consulted wanted it done. I happen to have dense breasts, but a pre-surgery MRI seemed to be standard practice. The MRI was read at two different breast centers (done at Vanderbilt) and doctors at both agreed the MRI showed I had DCIS around a small invasive tumor (IDC was diagnosed per needle biopsy prior to the MRI). Because of this, a fairly large portion of my breast was removed. Final pathology showed I had a small tumor only, no DCIS.

    IMO MRIs are not all they are cracked up to be and mine showed DCIS where there was none. It also missed my positive node. In retrospect, I'm not sure I would even want one done again. It was not helpful in my case causing me to have more extensive surgery than was needed. While I understand wanting as much info as possible prior to surgery, it is the surgery itself that will tell the true story. No matter how much imaging we have, none of it is truly definitive.

  • Olive4
    Olive4 Member Posts: 84
    edited June 2016

    Thanks to all you ladies who have kindly taken the time to reply to my post. The support and information here is wonderful.

    I have just spoken to my breast health nurse and she said that they will do not do a MRI. She stated that the surgeon was happy with the imaging from the 3D mammogram and stated that a MRI is not a good tool for evaluating DCIS. I said that I had been reading research that indicated otherwise but it didn't get me anywhere. I discussed a mastectomy and that would be possible but she said also that I could have the lumpectomy and if that didn't get clear margins then I could then opt for that at a later date.

    I have requested a 2nd opinion and so now have to wait for my family doctor to send that off. It is in the same facility as that is the only place I can go! I have kept my surgery date that is in a few weeks for now. Hope I get my 2nd opinion before then!

    Thanks again and I will keep you posted!

  • ksusan
    ksusan Member Posts: 4,505
    edited June 2016

    In the "healthy" breast, I had IDC, DCIS and a positive node that were NOT seen by mammogram, but only on MRI.

  • jonella
    jonella Member Posts: 9
    edited June 2016

    Hi there.

    Sorry you have to go through this. I am 5 weeks post bilateral mastectomy and immediate reconstruction. My microinvasive ductal carcinoma was detected by MRI. I had a mammogram two weeks previous to the MRI and got an "all clear." I have extremely dense breasts. Since you are having lumpectomy and not mastectomy, it seems reasonable the insurance company would pay for an MRI.

    Good luck


  • ksusan
    ksusan Member Posts: 4,505
    edited June 2016

    I'll add that my sister had a clear mammogram, but an MRI showed IDC.

  • mittmott
    mittmott Member Posts: 409
    edited June 2016

    I also wanted an MRI years ago, Dr. said not needed....I insisted the following year, and bam, I had a second cancer in my breast. It is a better tool, but I'm in the states with private insurance... I don't know if you have the right to demand certain tests in Canada


  • redsox
    redsox Member Posts: 523
    edited June 2016

    I would be more concerned about doing the SNB with the lumpectomy. As long as it is just a lumpectomy, I would want to skip that until/ unless they find invasive cancer. If they do, they can go back for the SNB.

  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    Hi all. MRI is not the best tool for insitu breast cancer but it is the best tool for invasive breast cancer for those of us with dense breasts. Its also not conclusive for lymph node involvement but neither is mammo or ultrasound. The only definitive test for nodes is biopsy. Good luck to all....

  • Kroge6
    Kroge6 Member Posts: 14
    edited June 2016

    I just had a bilateral mastectomy for extensive high grade dcis. I had two mammograms two years prior that showed nothing. I found a lump that was also negative on the Mamogram and ultrasound. I had the lump removed by my own persistence. The pathology showed high grade dcis with necrosis with positive margins on all sides. I really pushed for an MRI which showed extensive dcis 6.5 cm covering almost half the breast. This was all undetectable by Mamogram. I would really kick and scream to get an MRI Good luck and best wishes.

  • Olive4
    Olive4 Member Posts: 84
    edited June 2016

    Oh the frustration and sheer disappointment........was hoping to get a 2nd opinion from a highly recommended breast surgeon but consultation would not be for 3 weeks and then surgery sometime in August. My surgery currently is scheduled for mid July. I feel I am going down a path that I don't want. Wondering if I should ask for a mastectomy as I am so concerned that my DCIS could be multifocal and I have no way of knowing as I am unable to get a MRI. What to do? Maybe I should have this first surgery and then hopefully when I have a MO they may order a MRI and have more up to date knowledge of DCIS and I can start to feel more confident in my plan. Part of me feels like emailing the recommended surgeon as I am that unsettled! Maybe I need to find a way of trusting my current surgeon! Oh my deep breaths!

  • LyndaRM
    LyndaRM Member Posts: 4
    edited June 2016

    Olive4,

    I am so sorry you are having to deal with a less than aggressive doctor. I really hope that all goes well with your surgery.

    I was recently diagnosed with DCIS after having bleeding from my right nipple. After a negative mammo and a negative ultrasound the radiologist was ready to send me home. I am so glad I was my own advocate and demanded they do more. I was scheduled for a second ultrasound and a different radiologist found the mass and biopsied it. Next thing I know I have DCIS, Stage 0, High grade and am scheduled for an MRI. The initial plan is to do breast conservation surgery with radiation to follow. Of course that may change after the MRI.

    The question I have is should I opt for lumpectomy with radiation and live with the chance that it will come back in 5 yrs or have a mastectomy to reduce my risk of recurrence? It is a decision I ponder all of the time. I am 56 and healthy and have no breast cancer in my family. So what do I do? Any ideas out there?

    6/2/2016 DCIS, Right, Stage 0, High Grade, ER-/PR-

    7/11/2016 Pending MRI and surgical consult

    Pending lumpectomy and radiation


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    The recurrence-chance difference between lx+rads and bmx is 6% with the former and 3% with the latter--half as much, but not absolute; and that 6% isn’t all that high to begin with. BMX is no guarantee against recurrence, either in the chest wall, skin or near the axilla. It does reduce the chances, but never to zero. But if you have inconveniently-located, large, or multifocal DCIS in one breast (indications for UMX) and atypia in or difficulty imaging the other, BMX is not a paranoid decision.

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2016

    Average recurrence rates can be really misleading and in my opinion shouldn't be considered when making treatment decisions for DCIS. There can be such a wide range of differences between DCIS diagnoses and surgical outcomes - the grade, the size, the focality, the location in the breast, the hormone status, the surgical margins - that it's important to understand the specifics of your own diagnosis when assessing the surgical options and the likely resultant recurrence risks.

    The recurrence rate after a lumpectomy + rads can range from a low of less than 4% to a high of over 30%, depending on the pathology of the DCIS and the size of the surgical margins.

    Similarly, while the recurrence rate after a MX is usually in the range of 1% - 2%, for those who have DCIS at or close to the margins, some studies have shown that the rate can be as high as 10% - 15% (although those higher numbers can be cut by adding rads).

    This is very old data, but it shows a huge variability in recurrence rates based on key pathology factors, and it shows how important margin size is in reducing recurrence risk: http://theoncologist.alphamedpress.org/content/3/2/94/T2.full

    This is more recent, and again confirms the importance of margin size for those having a lumpectomy. Surgery for DCIS: If Inadequate, Recurrence Skyrockets Unfortunately in this study an "adequate" margin was defined as being >1mm and no investigation was done on how much recurrence rates can be further reduced by having margins that are larger. Back in my day (10 years ago) 'ideal' margins were considered to be 10mm or greater but more recent studies have shown that even slightly larger (than 1mm margins) margins will further reduce recurrence risk. For example, the following study shows that a single facility was able to reduce it's 58 month (almost 5 year) recurrence risk to zero, regardless of the pathology of the DCIS, by focusing more carefully on surgical margin size. They were targeting to have >2mm margins: Improved Outcomes of Breast-Conserving Therapy for Patients With Ductal Carcinoma in Situ

    So a key question for anyone trying to decide between a lumpectomy vs. a mastectomy is whether the location and pathology of her DCIS, combined with the size of her breast (large enough to achieve good surgical margins without significantly compromising breast size & appearance), will allow for optimal recurrence risk results following a lumpectomy (+ rads). If the answer is yes, then there is little benefit, in terms of reducing recurrence risk, to a MX. If the answer is no, then a MX might provide a significantly lower recurrence risk, unless the location of the DCIS is right at the chest wall, in which case rads might be recommended even after a MX in order to achieve a lower recurrence risk.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2016

    Just saying that where I got treatment, MRI is standard following diagnosis. Looking for areas not found through the mammo + checking other breast.

    Lynda--this was in the WSJ the other day:

    http://www.wsj.com/articles/doctors-try-to-avoid-doing-double-mastectomies-1467046698

  • LyndaRM
    LyndaRM Member Posts: 4
    edited June 2016

    Dear Ingerp,

    I hope your recovery is still going well. I feel fortunate that my medical center recommended an MRI to find additional areas of concern and look at the left side as well.

    And thank you for the link.

    Best,

    Lynda

  • LyndaRM
    LyndaRM Member Posts: 4
    edited June 2016

    Dear Bessie,

    Thank you for taking the time to respond. Your post is so informative. I think it is prudent in my case to wait for the MRI results before even concerning myself with the treatment plan and then consider the current research comparing the pros and cons of both options.

    Enjoy your day.

    Lynda


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