follow up for invasive lobular cancer. mri v mammogram

I get yearly MRIs, but that is because I have PLCIS left over in the breast, which is aggressive. I was stable for six years in a row, skipped last year on advice of onc (who wanted to give up MRIs completely), and the MRI I just had shows an area highly suspicious for recurrence (right where the first tumor was) along with some new spots.

I go for an MRI guided biopsy next week. They tried to biopsy last week via u/s but couldn't see anything. I have annual mammos, but my first tumor didn't show on mammo, barely showed on u/s, and showed on MRI, but its size was overstated. So I'm not a huge fan of mammos in my case, but am a big fan of MRIs. Or maybe not so much of MRIs if this turns out to be a false positive, b/c it's causing me quite a bit of angst!

If you spend enough time reading the ILC threads, you'll quickly discover how many women did not catch Lobular with yearly Mammo's.

Most agree that mammograms aren't perfect: they do use low doses of radiation to image the breast and they can miss some tumors. MRI is known to be more sensitive than mammography at detecting nearly all invasive cancers and a majority of in-situ (noninvasive) cancers. It certainly can find some tumors that mammography misses. And since MRI uses a magnet to image the breast, it does not involve any radiation exposure.

However, since MRI is more sensitive, there can be false positives which could lead to follow-up imaging and/or biopsies, revealing benign changes in the end.

Hi there, I had an argument with my surgeon recently who said I wouldn't need MRI's anymore as they weren't necessary. I reminded her that my Lobular BC wasn't detected on several mammograms or an ultrasound. In fact I was told by the Dr doing the ultrasound that if I was his wife he would be perfectly happy to let me go home and not worry about anything. Needless to say I will be having MRI's annually.

I've also had bmx so there is nothing current machines know how to scan. Labs are not done since tumor markers can give false positive and false negative readings. I hate the crapshoot of hoping I would find a recurrence and who knows where.

My twin sister had LCIS/ALH (not sure what they are calling it these days) and my onco said MRI would be preferable for her. She had been doing every 6 months mammo/mri but it gets exhausting and expensive. One of the reasons I opted for a bmx; the "checking" would ruin my life.

John,

I love reading your posts and I think how lucky your wife is to have such an involved and loving husband.

I had actually thought about asking for an ultrasound for my chest wall, or a full body scan, but they look at me like I have 3 heads.

Mine was also early stage, but as many of the gals here can attest, cancer refuses to follow a flight-plan...sigh.

It would be amazing if some of these early studies prove to be useful as "standard of care." In the mean time, we wait and do what we can. My onco in WI (and I have read this in several places as well) said that if it were to recur in the mammary area, it would be considered a local recurrence and does not affect mortality. If it were already a mets situation, then mammo/mri would not pick it up anyway and he said that life expectancy is not altered much if the detection is even 6 or so months out. For some people, doc visits are a blip on their radar; for me, I can literally worry and induce anxiety for weeks before the appointment. My quality of life is lost for those weeks never mind things like my heart and brain for the BP skyrocketing. Maybe that's why "scanxiety" is a word here, LOL.

I have a mammogram and MRI once a year offset by 6 month. I am afriad for next MRI in May. Just have a bad feeling.

Hi Ladies,

 Im another ILC warrior..mammo missed my tumor also. It was caught on mri. I bmx, so whats the fllow up for those of us who had bmx with recon ?? I saw my bs last week and she said I don't need mri's anymore beacuase I don't have any breast tissue. That make me really nervous because we all know that even with bmx, they don't get ALL of the beast tissue, I was told women have breast tissue all the way up to the collar bone so why wouldnt I need mri's anymore ? They havent even done any blood work on me. August 20th will be one year ...if they don't do mri' or bloodwork then how will I know if it has spread ??

For those in the U.S., how much did insurance cover (if any) for the MRI after your BMX?

Nothing left to mammogram or MRI, but when I was considering a uni MX, my doc said follow up would be mammogram and ultrasound alternating with MRI every 6 months. Despite the fact that mammograms missed my 4cm tumor.

The following news is not extremely relevant to this thread, but it does revolve around the topic of diagnostic imaging for ILC.

The ARRS Annual Meeting (a Medical imaging conference) took place this past weekend in Toronto, Canada.
A scientific session on Nuclear Medicine was held and discussed the clinical value of using FDG- PET/CT imaging in newly diagnosed ILC cases.

It was called "Value of Staging FDG- PET/CT in Newly Diagnosed Invasive Lobular Breast Cancer"

The results of the study concluded that: "At best, only 3% (3 of 88) of patients with newly diagnosed Stage III ILC breast cancer would have benefited from systemic staging with FDG PET/CT, as compared with conventional CT and bone scanning. This benefit may be even smaller as bone scan comparison was not available in these three patients. Though FDG PET is valuable for systemic staging of Stage III ductal breast cancer, it adds little to the systemic staging of ILC. Future NCCN guidelines for systemic staging of breast cancer may need to be modified to consider the histologic subtype of the breast malignancy, with ILC staged with CT and bone scan rather than FDG PET/CT."

Again, it's not particularly relevant news for anyone here, but I'm happy that others (i.e. New York Presbyterian Hospital, and Memorial Sloan Kettering in New York) are thinking about Lobular.

I read this article that the late Laura Ziskin wrote (she was a successful Hollywood producer who founded STand Up to Cancer and coproducer the Ken Burns doc). It's not "science" but rather someone's personal story.

She had ILC detected late and had been getting ultrasounds and mammograms. So I apologize for posting above that perhaps an u/s is what catches this very sneaky disease. Apparently she believed that an MRI would have been effective at earlier detection had she known to get them. I guess though that there is no way of knowing if it would have, but she does know that the mammogram and ultrasound failed in her specific case. Unfortunately, insurance rarely covers MRI and most of us couldn't afford it out of pocket. I don't know if you mentioned this story to your doctor if it would make them more sympathetic to your cause/helping you to get an MRI.

http://www.latimesmagazine.com/the-california-cure...