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

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?

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?

Sorry to hear of your devastating news. I too was blindsided when I received my diagnosis in Jan 22 of double foci BC two months after a “ normal” mammo ( I persisted with a symptom until an MRI was performed). I was devastated.

Hang in there. Take a deep breath and educate yourself about BC and treatments. Your path will become clear as more testing is done. It’s a steep learning curve and decisions will need to come fast at times.

Enlist the help of a trusted friend, if possible, to be another set of ears at appointments. As you gain information make a list… a long list… of questions. Self advocacy will come in handy.

A lot is going on in the research concerning BC. There are more options now. Once you have more definitive information a treatment plan ( or plans) will evolve.

I too was ER/PR+, HER2- I had a unilateral mastectomy and I am taking hormone (aka anti hormone) therapy for 5-10 years.

Caution: because you are ER + you will be offered anti hormone therapy … a daily pill of an Aromatase Inhibitor (AI) … there are 3 kinds all of which do pretty much the same thing … cut estradiol from converting to estrogen aka killing off estrogen production. If you are pre menopausal ( age wise you likely are) then ovarian suppression will also be needed.

I have learned that once you take AI you are no longer eligible to get an ONCOTYPE ( determines if chemo will be beneficial in your case) for any BC tissue that may have been left behind. They will be able to type the tissue already removed and you should request that testing … it takes a few weeks to get results.

Wishing you the best possible news going forward. Hang in there! Hugs.

I think too much information too soon can be overwhelming. I recommend the Mayo Breast Cancer book for a good overview, if you need an overview. But even better, wait for more information on your cancer, especially the Oncotype Dx test.

I believe lobular DCIS is a precancer: that it is not yet invasive. (I also had mixed ductal and lobular but both were invasive).

If you are ER+ there is a good chance you will avoid chemo, depending on the Oncotype.

While you wait for info, I think distraction is the best strategy I also got a few Ativan from my doc!

Once you have details, and a treatment plan, you can move forward. Get as many opinions as you need to feel good about your plan.

Thank you for the advice. I am going to ask about the oncotype test- I don’t have this in my notes or pathology report. As of now I know its invasive lobular and invasive ductal on the left breast and DCIS on the right. Hopefully will have more answers and a plan soon.

Thank you for the oncotype suggestion- I don’t have this written anywhere so I will follow up. I he my Mirena IUD removed in Thursday and there was discussion about hormone therapy and possible ovary treatment of some type. Hoping for more news and plans this week or next.

Yes, pre menopausal women have different… and effective …anti hormone treatments which entail shutting down ovarian generated estrogen. In Post menopausal woman ( like me) the ovaries are no longer producing.

We are here for you 🌸

Hi kristiengelman0912,

im so sorry you got this news! Its never easy to hear.
I felt the same as you, blindsided and confused and scared as hell. Bad news coupled with all the information on surgery, treatments and options. Was too much to even think about. I joined this forum and got some great information and advice from the wonderful people on here. I calmed down, got my head together and did my research. I felt so much better knowing what to expect. An oncotype test is helpful when it comes to chemo or no chemo, and chance of reoccurence. They take samples during surgery and send to a lab called exact sciences for analysis( it takes some time) .Wishing you all the best for your coming weeks. Take notes and ask lots of questions. Be strong! We got you!

I want to thank anjalima, you are a great source. Very insightful!