Anyone else diagnosed with IDC & ILC, at the same time?

Posted by pharmmom4 @pharmmom4, Aug 23, 2022

I was curious if anyone else had been diagnosed with invasive ductal carcinoma and invasive lobular carcinoma at the same time and how often are mammos/us/mris being used to monitor?
Background info:
Last August found a lump in right breast (previous mammo in May was clear). Dr ordered diagnostic mammo and u/s in September. Mammo was still read as negative but the ultrasound confirmed something was there. Biopsy done and path report was invasive ductal carcinoma, DCIS, and atypical lobular hyperplasia. (ER+,PR+ HER2-). MRI was ordered and showed a larger area of concern that was not seen on u/s, and once again nothing on mammo. Had larger lumpectomy due to the mri and pathology ended up being IDC, ILC, DCIS & LCIS. Was not expecting that! I started on hormone suppression therapy & AI and had radiation. I can not find a lot of info about cases with 2 primary tumors and what type monitoring should be done. Just curious if anyone has had the same experience?

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I had the same diagnosis, but it was "mixed." Are your tumors separate? I had e-cadherin loss throughout which is more typical of lobular. "Mixed" is a different category from just lobular. Interestingly, it seems the ductal part of my cancer was HER2+ in places but I was diagnosed overall as HER2- after equivocal tests were tested further. It is also possible that lobular parts of the cancer have a high tubular score, raising your grade more than it really is (I found a study on this but cannot cite right now). Your treatment is the same regardless but lobular is harder to find on imaging because the cells kind of form a line rather than a mass, as I understand it.


Welcome @pharmmom4. I'd like to add my welcome. Like @windyshores, fellow members @joiful @kk57 @alaskan @grandmapeggy also had invasive ductal carcinoma and invasive lobular carcinoma at the same time and can share their experiences with treatment and monitoring.

Pharmmom, what is the follow-up schedule that has been suggested for you?


I just had first mammo/us 6months post radiation. Will be getting an MRI in the next month or so. After that, maybe I will have a definite f/u schedule. I am assuming every 6 months or yearly after that, but not sure yet.
@windyshores – I never saw the term mixed in the reports. The biopsy of the lump showed IDC, DCIS & ALH. There was e-cadherin loss documented in the path report. The mri I had showed another area under or behind the first tumor which was the ILC. The tubular score was 2. Did you also do lumpectomy and radiation? If so, how often do you follow up and do you have mammo, us, mri?


Hi! I finished radiation end of January for ILC and DCIS after lumpectomy and am now on Letrozole. I saw NP at Dana Farber 3 months after radiation but no scans until diagnostic mammo a year after last mammo which did pick up my ILC – I have dense breasts and many cysts so I felt lucky radiologist picked up my tumor. My onco doesn't find scans prior to a year helpful but I'm very anxious about this and am going to reach out to my radiation onco to get her opinion. Good luck and please keep us posted. xoxo

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