MRI as part of diagnosis

percy4 · November 2013

I have DCIS, small, in one breast, as far as I know. I keep reading here about women having MRIs as part of their diagnosis. I want it before the lumpectomy, nor after, so if there is some other suspicious little thing, they can needle-biopsy it during my lumpectomy. Also, for 2nd opinion of pathology, Dr. Lagios, for instance (who I may or may not use, after, but want to be able to) would like an MRI to look at. The MO said they won't do it; too many false positives, but I'm seeing here that it's had value for many. Can anyone tell me anything, and how does one persuade the docs they want this (perhaps 2nd opinion surgeon I'm seeing in a dew days, though still within my same HMO, Kaiser, will see my point)? Any value in having MRI after the surgery? Can't imagine they'd do that, if they won't do it before, until perhaps much later, while watching things in 6 mo. or a year. Also, is there a lot of radiation from the MRI? Thanks, all.

ballet12 · November 2013

Hi Percy, there is NO radiation in the MRI. It is magnetic imaging. Secondly, I did have multiple MRI's as part of the diagnostic process, but my situation was a bit different from yours, in that my DCIS was not diagnosed until the first surgery, which was an excisional biopsy. The stereotactic core biopsy had found ADH. So, it was routine (once a cancer diagnosis was made) for my surgeon, at the time, to request an MRI. Well, like your MO said, lots of false positives do occur, so they found a nodule in the other breast which they gave a BIRADS-4 and recommended biopsy. They couldn't do an MRI-guided biopsy, because it was close to the surface of the breast, so they attempted to do ultrasound-guided biopsy. However, as is sometimes the case, the nodule was only visible on the MRI and not the ultrasound. This would have left me with the need for an excisional biopsy. As it happened, I decided to get a second opinion on the DCIS situation from Memorial Sloan Kettering. They re-read the MRI and thought, at first, maybe the whole thing was motion artifact (that I moved during the procedure). They repeated the MRI and found the same nodule, but gave it a BIRADS-3 (the 6 month follow-up routine). After six months (and two additional surgeries on the breast with DCIS), they repeated the MRI, and this time gave it a BIRADS-2, which essentially meant, forget about it. The nodule was still there, but not deemed important. So, the same nodule went from BIRADS4 to 3 to 2. So, that was a "false positive". At the same time, others, including Beesie, have reported that the MRI was invaluable for determining the extent of the DCIS in the breast, so for some it's very valuable. One woman, who also got a second opinion and was granted an MRI after the first surgeon wouldn't do it, ultimately found what turned out to be IDC on the MRI. So, the bottom-line is that it can be very valuable. My surgeon doesn't want to use it for annual follow-up (due to the false positive issues), which I'm not too happy about.

Deirdre1 · November 2013

Hi Percy, An MRI can be an incredible help... in my case I had had mammo's, digital mammo's, scans, etc. etc.. but the only indication that I had any problem at all was the MRI - which clearly showed what the doc's deduced to be DCIS (this was later confirmed with a biopsy)... it's important that you get an MRI that is properly equipped to do breasts AS WELL AS a radiologist that is well versed on breast scans AND MRI's. There are false positives and negatives with ALL scans and as the MRI is being used more commonly there are less problems with them and I would recommend my daughter to have an MRI (again done by a well equipped lab as well as a radiologists who has had plenty experience with breast scan and MRI's) even if she had to pay for it out of pocket. If you want an MRI push for it but not until you have done your research to find a facility as mentioned above... Best of luck and I hope all goes well... Best!

min937 · November 2013

Percy - I think the MRI is a valuable tool, especially if you have dense breast tissue as I did. My mammograms showed multifocal DCIS in my right breast, which was confirmed with a stereotactic biopsy. My surgeon recommended a mastectomy, but ordered the MRI to get a better idea of exactly how wide the area of scattered DCIS was (to confirm that a lumpectomy would not be a good cosmetic outcome). The MRI confirmed the area of DCIS, but also noted two other areas of enhancement. Because I was already going to have a mastectomy at that point, there was no reason to biopsy the additional areas that enhanced on the MRI. As it turns out, my pathology report showed that I had two small IDC tumors in that breast as well as the DCIS. Having any kind of surgery is a serious decision. In my opinion, the MRI can be used in some cases to help confirm the right surgical approach. Good luck!

dogsandjogs · November 2013

I don't think my insurance would pay for an annual MRI. The only breast MRI I had was quite expensive. Provider billed insurance $6,000----

percy4 · November 2013

Thanks , ladies. This issue is really making me upset. I know a woman at my same Kaiser facility whose surgeon ordered an MRI for her even before needle-biopsy (she was fine). When I told the MO this, she said "Maybe that person had a family history, or something". I told her she did not (true). That woman hadn't even had a biosy, just a lump they'd been following. I have had the biopsy, and know I have DCIS. I have very dense bresats. Was upset they refused to include an oncotype for DCIS in my path testing, to help me decide later about radiation (they said it isn't the standard), but this one I'm going to fight for. They really want me to get this lumpectomy done. Perhaps I should tell them how I feel, which is that without an MRI, we may be at an impasse. Isn't it hard enough to go through something like this without having to argue? I'm only asking for one or two things. For goodness sake, this facility gave me an MRI years ago just because I had a small ache in my low back. My son is outraged; he wants to come with me to my next appt., with the 2nd opinion surgeon, who I will ask for this. Can't let him, he'd probably shout down the building if I'm refused...

Annette47 · November 2013

I wasn't offered an MRI, but then again, I don't have particularly dense breasts so the thinking was that the mammogram had no trouble finding this cancer and there was no reason to think anything else might be lurking. If I did have dense breasts that interfere with imaging, I might feel differently. Hopefully you can get one if for no other reason than peace of mind.

min937 · November 2013

Percy - I hope your 2nd opinion surgeon has no problem ordering one for you. I had a breast MRI about 6 years ago when they were trying to establish my baseline mammogram and saw something they were unsure of in my right breast. Interestingly, that's the breast I had cancer in, so maybe it was in very early stages when I had that MRI. Anyway, my point is that they order them when cancer isn't confirmed, so the fact that you have a diagnosis should make a reasonable case for an MRI to get all the information you can to make the best decision for your surgery and treatment, especially if you have very dense breast tissue.

percy4 · November 2013

Thank you, again. I have no intention of being one of our lovely numbers who has to have 2 or 3 more surgeries to get the whole picture. Want to get it right, from the beginning. MRI may , or may not, tell me more, but I believe this is a good reason, a good case, for asking for one. And if it shows no further problems, then, well, they should be HAPPY.

ballet12 · November 2013

I had to have the three surgeries even with the MRI between surgery #1 and surgery #2. It didn't actually help with the breast with the diagnosed DCIS. It just took three surgeries to get the clean margins. It happens.

SJW1 · November 2013

Hi Percy,

An MRI can be an invaluable tool in getting the correct surgical treatment. This is because not all DCIS has calcifications, which is the only thing that shows up on a mammogram. A pre-surgical MRI can prevent unnecessary re-excisions.

The type of MRI you have can also be important. I will only get the Aurora RODEO MRI, which is an MRI used only for breast imaging (called a dedicated MRI). This type of MRI has an 11 percent false positive rate and a 1 percent false negative rate, while a general MRI has somewhere between a 32 and 41 percent false positive rate and a 15 percent false negative rate. Please check our new DCIS website for more info re the RODEO MRI :

http://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/

If your doctor won't order an MRI for you, find another one who will. None of my doctors in Michigan will order a RODEO MRI for me because our restrictive CON laws won't allow two types of MRIs in the state. I have to have Dr. Lagios order mine every year and travel to another state to get one. However, the good news is if you are diagnosed with DCIS, it puts you at high enough risk, so insurance companies generally will cover their share of an annual MRI, which is about $2000 for a RODEO MRI. All of my RODEO MRIs have been covered since 2008.

If this is what you want keep trying until you make it happen. That way you will have the peace of mind you need when this is all over.

Feel free to PM me if you have any questions re how to do this.

Good luck,

Sandie

percy4 · November 2013

Sandie; thanks so much for all that info. I belong to an HMO network in CA; Kaiser Permanente. They have facilities all over CA, and are good, but simply may not offer the RODEO. I've not been treated yet. Am seeing 2nd opionion breast surgeon tomorrow, did not like the "set" approach of the first surgeon, her style, though she was trying to be nice. It was like "Well, you're having a lumpectomy, then radiation, then tamoxifen, then you'll be fine". No MRI mentioned. I need more of a "You need a lumpectomy, then rads can cut your chance of recurrence by half, so you'll need to decide that, then we'll talk about the pro/cons of the drugs with you, and, by the way, some people get further testing, like MRI, for more thorough diagnosis". Tomorrow is my last stop before proceeding. I simply cannot afford an outside MRI (am WAY in debt). If only a regular, not a special breast, MRI is offered, should I do it? With that really high false positive rate, the RO said MRI just results in lots of mastectomies, and with those numbers, I can see why. On the other hand, couldn't they just needle-biopsy the suspect areas on the regular MRI before my lumpectomy? They may refuse the MRI idea altogether, and I can't go to a different place. I plan to scrape together, or borrow, the money for Dr. Lagios, who works in my county, for a 2nd opinion on lumpectomy path report. Can he even do a good assessment if MRI has not been done for him to look at? Please tell me what you think. Thanks - P.

ballet12 · November 2013

You need to get a breast MRI done through Kaiser (you don't necessarily need a rodeo MRI). I'm certain they are done all the time. I'd suggest you start a thread regarding breast MRI at Kaiser in the San Francisco area. Maybe, people can tell you the best facility to go to. MRI's don't result in mastectomies. They may result in additional biopsies. The only time the MRI should lead to a mastectomy is if much more extensive DCIS is found BY biopsy after the MRI is done. Or, of course, if they find invasive disease after MRI-guided biopsy. So, MRI's tend to find some suspicious areas that may ultimately be benign, but they also pick up real disease that wasn't previously seen on other imaging (including in the other breast). Come to your appointment armed with as much information as you can.

MCbeach · November 2013

hi Percy4,

If you do get an mri, make sure you have it timed to your periods if you still get them. No one discussed this w me. My gynecologist made the order based on the recommendation from the radiologist after my DCIS dx. So I had the breast mri and everything completely lit up, so I had no results, just another exp test and worrying. My bs told me that was ok since he wouldn't have recommended it anyways. But my case is diff, I had a BMx. Good luck to you.

MRI as part of diagnosis

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