How was your ILC or IDC diagnosed?

minmom24

I noticed my left nipple was retracting and pointing outward at the end of April. I expressed blood from that nipple and made an appointment for the following day with my GYN office. My mammogram just a few months before hadn't shown anything suspicious. They were able to locate what looked like a papilloma on an ultrasound, and recommended biopsy which showed both the papilloma and LCIS. I had a lumpectomy of the papilloma and the biopsy results included "florid LCIS". At my post-op visit, the breast surgeon informed me that my lifetime risk of invasive breast cancer was 58.4%, so I opted for prophylactic bilateral mastectomy. When those biopsy results came back, I was informed that a 1 mm ILC lesion was found. No nodes were checked since no cancer was expected. The medical oncologist used the Memorial Sloan Kettering nomogram to determine that my risk of the cancer being found in my nodes is 14%. The tumor board at our hospital will be discussing my case and give recommendations for any further testing and treatment. My father and my brother both died from metastatic cancer, and I'm not comfortable with not testing the nodes with a 14% risk.

Moderators

minmom24, welcome to Breastcancer.org. It sounds like you are in very capable hands,and they will make sure to check everything. We are sorry to hear what you are going through, but we're all here for you!

Nopoli

NopoliJoined: Dec 2015Posts: 10

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Katie, was diagnosed with stage 1 ILC this year after I had a prophylactic mastectomy of my right breast. At the same time, I had a mastectomy to remove what they thought was a 3 cm lesion in my left beast (nipple to chest wall). Images of the left (us, 3D Mammo and MRI were showing a large invasive cancer but 2 biopsies showed high grade DCIS and LCIS, hyperplasia, sclerosis, you name it). So they didn't know what we were dealing with. Final answer would have to come after surgery.

I had had extremely dense breasts with stable calcifications (BiRad 4). The 3D Mammo showed nothing on the right side, but the MRI showed a lesion which the BS was not worried about at all--a fibroadenoma, they said. Because my Mom passed away from recurring, two primary metastatic breast cancers, I opted for prophylactic on the right.

Post surgery, the findings on the left were 6 cm of grade 3 DCIS, LCIS and cancerization of the lobules, embedded in a large sclerotic (benign) lesion, less than 1 mm margin in at least 2 spots, suspicion of micro invasion, isolated tumor cells in 1 of 3 nodes (highly ER positive; PR 10%; HER 2 -ve).

On the right side they discovered a 0.9 mm Grade 2ILC, highly ER and PR +ve, HER2 negative. FOLLOWED UP WITH AXILLAR DISSRCTION ON RIGHT SIDE: 0/14 nodes. Yay! I was incredibly smart (in decision) AND lucky. I've seen way too many stories of stage 3 and stage 4 ILCs at original diagnosis. Oh I had also had a PET-CT scan no contrast, and there was mild uptake in left side but not on right ILC side.

Because Oncotype scores were in the low spectrum on both sides, no radiation or chemo were recommended (1 RO, 3 MO opinions). On Tamoxifen.

Hope the long details are helpful. Good luck

Dx 1/21/2016, LCIS/DCIS, Left, 6cm+, Stage 0, Grade 3, 1/3 nodes, ER+/PR+, HER2-Dx 1/21/2016, ILC, Right, <1cm, Stage IA, Grade 2, 0/14 nodes, ER+/PR+, HER2-Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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Chemist

In August 2015 I had pain in my left breast. A mammogram--taken locally in my small city--was interpreted as showing 'no evidence of malignancy.' 8 short months later, I noticed that my breasts were very different in shape and size. Again I went for a mammogram locally, and again there was 'no evidence of malignancy.' This time, they did ultrasound, which showed a big suspicious region. I promptly took all my records to a major cancer center, who looked at the two mammograms and said both showed 'cause for concern.' They went on to diagnose ILC, Stage 3C. A long regimen of nasty treatment awaits me, at best.

Moral of the story: ALWAYS GET A SECOND OPINION--AND GET IT AT A MAJOR CANCER CENTER.

Question: WHY ISN'T ULTRASOUND USED MORE ROUTINELY TO SCREEN FOR BREAST PROBLEMS?

I've spoken with the local physician who read the mammograms initially, and he steadfastly maintains that he would do nothing different if faced with the same evidence again. He says 'we just don't do ultrasound--it's not sensitive enough.' But in my case, clearly, ultrasound proved to be more sensitive that mammography, and it might have caught the cancer earlier! My understanding is that ultrasound is relatively cheap and easy, so what's the problem with adding it to the diagnostic tool kit??????

I'd love to discuss this with someone in charge of setting guidelines for breast diagnoses, but I don't know who or where that is. Any insights?

JohnSmith

Hi chemist,
Due to its distinct biology (which contributes to diffuse growth), ILC is often underestimated by conventional imaging (Mammogram, Ultrasound, MRI, etc) and discovered at later stages. This forum is full of these stories similar to yours.
ILC is less common and accounts for no more than 15% of all invasive carcinomas. I'll make a sweeping generalization and say that there's little reason to change guidelines when only 15% might benefit.
The inaugural international ILC meeting at the end of this month will discuss some of the imaging challenges.
There are patient advocates that are lobbying for imaging guideline changes that would benefit future ILC patients.
For the sake of everyone here who have already been diagnosed with ILC, I'd be more concerned with advocating for better post-diagnostic imaging (or advocating for the development of ILC-sensitive liquid biopsies) to detect progression/mets.

Chemist

Thanks JohnSmith, for sharing your perspective. Can you name or provide other 'handles' on these patient advocates?

joanie84

My ILC was diagnosed through MRI. I have a family history of BC and in April had a surgical biopsy that revealed atypical cells on my right side after my yearly mammogram revealed calcifications. It was determined that I should add MRI's to my screening regimen and in Aug with my first MRI they found a 1.2 cm lesion that turned out to be ILC on my left side. I had it removed with a lumpectomy on 9/9. I need to have a re excision on the 30th because one of the margins was not clear. My surgeon had said that the breast cancer probably would not have been seen on a mammogram for another year and a half to two years.

Chemist

Lucky you!

Bagsharon

I have IDC with lobular features. I felt a lump six months after my annual screening mammogram. The diagnostic mammogram was BIRADS 5. 0 to 5 in six months.

OG56

Diagnosed today with ILC, 3.5 mm Pleomorphic. This is my 2nd BC the first was IDC, both identified by Mamogram + MRI, I was diagnosed 7 years ago with Pleomorphic LCIS

Miskatonic

i felt a funny patch on my nipple, called my obgyn and he got me in that week for a manual exam, and sent me immediately to the mammography, which did mammogram ( nothing found) ultrasound( nothing conclusive) , then punch biopsy and needle biopsy. This 2as on a Tuesday, and before I left the clinic they scheduled me to come in that Friday to find out the pathology report.