Has anyone had MRI suspicious for malignancy but negative Mammo + US?

The long term surgical followup can certainly present uncertainties and it sounds like that is what you are feeling. By what means was your LCIS/lesion initially seen...MRI? Mammogram? One of the clear challenges with lobular lesions is the rate at which it is diagnosed late, often due to it not being clearly detected by radiology, particularly in women with dense breasts. With double mastectomy, it's helpful to know if all breast tissue was removed, if reconstruction was done, if the procedure was nipple sparing, etc. Your question about the use of MRI followup post-LCIS double mastectomy might be a good one to post in the community to see what others have experienced.

Thanks for your reply. My LCIS in my right breast was discovered through mammogram. Since LCIS is not within my HMO ‘s guidelines for routine MRI, I figured that any follow up screening that would be offered to me, be it ultrasound or mammogram, would probably be less than optimal. I then decided to take the most aggressive approach to dealing with it, which was to ask for a double mastectomy. Post mastectomy biopsy of the breast tissue revealed that I had LCIS in the other breast as well. Thus, this shows that LCIS does not always show up on mammograms.

I had 6 years of false negatives with a mammogram until a radiologist did a biopsy and it was stage 3 cancer.I needed an MRI and or some other test
but luckily the biopsy found the cancer.

Does anyone have evidence to share how alternating MRI and mammo for ILC surveillance in dense breasts (even while on Letrozole) should be protocol. I had to beg my oncologist at Dana Farber for an MRI as after lumpectomy (2cm), radiation and letrozole I had first mammo a full year after diagnosis. I then asked to have an MRI in 6 months and my oncologist doesn't think warranted. I begged and Dr. Caroline Block at Dana Farber said she would authorize but would not help me to get coverage if my health insurance denied. Very disappointed.

Hello,
Your ILC post-op screening conflict with medical providers is a common one and I'm sorry you, too, are encountering this. Which screening tool first picked up the initial suspicion? Am I understanding correctly, you have had a lumpectomy but did not have a bilateral MRI with and without contrast during the diagnostic stage before surgery? Good that you are advocating for what you think is the right follow-up care for you. Something we are all called to do. There is considerable research that shows lobular cancer is often diagnosed at later stage due to breast density and difficulty of detecting it on mammogram. Here are a few articles about the use of MRI in early detection and other aspects.
https://ascopubs.org/doi/full/10.14694/EdBook_AM.2012.32.220
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10000992/
https://bit.ly/3TABnws

It sounds like you've been through quite an ordeal. I'm sorry your hand was forced due to insurance. Hoping your recovery is progressing well and that you have a support system. Best wishes.

Thanks @gardenfairy for those links! I did have a MRI pre surgery which gave us more intel especially the size. It was hidden behind large cyst (very dense and many cysts) and I wonder how long it had been there - every year I did receive the letter saying I had dense breasts but honestly didn't think much of it - sure wish I had. I've read the same about lobular - that is often reoccurs later than ductal but I feel MRI alternating is offered to many but at Dana Farber I had a hard time getting my onco to approve MRI.

@semurrey, I have dense tissue breasts and in my younger days 😀 I was always told that, at each visit with my doctor. It was not mentioned in my ‘your mammo is normal’ letter. Then over the years mention ofdense tissue was just dropped from conversation. I just thought tissue got better or changed. I didn’t know. It was not until 2019 when I went to a breast surgeon for routine exam, that he said ‘you have dense tissue, let’s do a MRI and see what’s in there’ , that Dense Tissue was ever mentioned again. Lo & behold, cancer tumor was found. Mammo was normal.
I think , we have to be proactive & advocate for ourselves. Dense tissue is an issue for many women, I’m sure, and doctors are overlooking this!
Please call your insurance company and talk w/ the benefits person explaining your situation. If that person cannot help you, bump it up to the next level. Just keep saying ‘let me talk to your supervisor’. It is Your Life and you are paying for insurance. For someone sitting behind a desk denying your MRI coverage is ludicrous. 💪🏼🙏🏼❤️

Thanks for encouragement @sequoia. It's one thing for juggernauts ins company to give me a hard time but for my oncologist to dismiss when even the literature I gave her shows how MRI especially for dense breasts AND ILC is gold standard is just so disappointing. Why do these docs poo poo dense breasts. Katie Couric in the FIND IT EARLY ACT was hoping to get a bill to force ins companies to cover MRI for those with level 3 and 4 dense tissue. It is stalled but I encourage folks to reach out to their congressman! I also pay $1,000 a month for not so great insurance in MA as I am self employed! xoxo

I had a further discussion with my doctor (Oncologist Surgeon) about MRIs and she said she had somewhere nothing showed up on the MRI. Has anyone heard of this before?
Also, she is trying to talk me out of a double mastectomy saying that it comes with a whole host of problems. Is anyone else having issues?
At this point, I am so confused. Not sure what to do. I will see the oncologist tomorrow, hoping to get more answers.
Pathology reports (after lumpectomy) on the left side results were ILC Stage III, Grade III, removed 29 lymph nodes (2 of which were cancerous) and the lump was 1mm from the chest wall and she did not get clean margins. Treatments - possible Chemo, then Mastectomy, the Radiation. I have requested an MRI (had to argue a little but I got it).
I am having a difficult time wrapping my head around this one, and I don't feel my doctor is in my corner. Getting a 2nd opinion could be a little tricky and I don't want to postpone any treatments or surgery.
I asked her if breast cancer was predominately on the left side, she said that wasn't true. My Mom, mother-in-law, and our daughter were all on the left breast.