Invasive BC with mixed ductal and lobular features
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I had two tumors first one was IDC with lobular features. The second tumor was ILC. After mastectomy pathology is calling it just ILC. Confusing to me. Asking MO for more clarification. Should oncotype be done on both tumors?
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I think so, but I only received one oncodx number. I don't know which tumor they used.
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Hi there Determined. After surgery there is a comprehensive pathology lab test done which often changes the preliminary results of the pre-surgery biopsy, so that's pretty normal, but it's a great idea to have your MO explain all of the pathology report findings to you.
On the Oncotype DX test, it is only ordered in special circumstances (like early stage and ER+) so that's a good topic for discussion with your MO as well. Insurance companies often fight about paying for it, so I believe the likely outcome is just one test. And it could be the pathology report shows both tumors with very similar characteristics; that's what happened to me.
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Hi Ladies,
I'm totally confused as how to proceed and was hoping to gain some clarity from those who have already experienced it. I was dx with IDC with Lobular features, had BX and tumor was 2.0cm GRADE 2, Stage IIA, with LVI, 1/3 nodes positive with extranodal extension. Onco came back 20, intermediate, so I have had 1 MO said no chemo needed, second said yes.....Now I'm very confused! Help!0 -
Hi Amie and I'm so sorry that you are facing this decision. My MO based her recommendation partly on family history and ER+ status, because the higher your ER + score the better Tamoxifen or an AI will work. Do you have that information?
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Also if you are er+ but pr- AI drugs seem to work better than tamoxifen but the joint pain and possible bone loss are the negative aspect.
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Hi Georgia1 and Meow13,
Thank you for your response. My sister who is 2 years younger than me was dx 1 month before me with IDC, Grade 1, Stage 1.
I am ER positive 89%, I am still pre-menopausal . We are still working out the details for which drug, I would be best suited for. I just received my Genetic tests back and found out that I have NBN, which I have found out carries up to a 30% increase of breast cancer, and has some association with increased risk with radiation. So now I am rethinking my plan. I am meeting with my MO om Friday to discuss details. This is such a journey, not a race, I guess?!
I appreciate your help.
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Hi Amie,
I am like you with IDC/ lobular features, but also multifocal. 3 separate tumors IDC 1cm, IDC 1cm and ILC 4mm. I also had 1 of 3 nodes positive. I am 49 and premenopausal with no family history. Because the one node was positive, I am starting 4x TC this week and every 3rd week for the next 3 months. Seems doable and not too debilitative from what I am reading - fingers crossed. So yes, chemo was advised. I hope you find the answers to your questions. It's so difficult to weigh in all the factors and side effects. Sending you strength..
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Thank you! I’ve got an appointment set up this Thursday with my MO to go over things again. Appreciate the response.
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Initially I was diagnosed with IDC Stage 2b, grade 2, ER/PR + HER2-. had one positive axillary lymph node. I'd had a clear mammo 6 months prior, so the cancer was on the move. They rushed me into chemo - 12 Taxol's and 4 A/C's. I then had surgery and although the chemo punched a bunch of holes in the tumor, it was already traveling to the lobes. That's how I ended up with the diagnosis of invasive mixed ductal and lobular carcinoma, and lobular carcinoma in situ. I also had 6 weeks of radiation. Even though it was rough, I'd do it all over again because I'm now cancer free. During my first consult, I told the doc to do whatever he had to, to kill the cancer, and I'd just get through it. Still, treatment wasn't nearly as bad as I expected!
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Thank you for some clarity. Meeting again on Friday with MO. I hope to get this figured out and get this started and over with! I know I can get through whatever they want, I just need to make a decision and be comfortable with it!
Thanks again!
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Best of luck to you! Let me know if you have any other questions. It sounds weird, but it seemed like the time I was on chemo went by quickly. It could be that I was just too wiped out to notice! I slept a LOT.
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I was diagnosed almost 14 years ago with invasive mammary carcinoma with ductal and lobular feastures. Tumor was 2.1 cm and had one sentinal node positive with 8mm. My biopsy showed only IDC, ER/PR positive, her2 neg and high KI-67. My final pathology showed mixed IDC/ILC grade 1, which shows you that tumors can be hetereogeneous. At that time, my positive node was my ticket to chemo. I had a bi-lateral, reconstruction, chemo and radiation and also 10 years of Femara. I also removed my ovaries. I was very aggressive with my treatment because I didn't want to regret if my cancer came back I didn't do everything I could. I read the latest articles that say IDC-L (which is the new name for it) has a better prognosis than ILC and also responds better to an aromatase inhibitor than tamoxifen. I am fortunate that I am still cancer cancer free. My advice is to follow your gut in your decisions and ask your self if you decide not to do something, that you can live with yourself if your cancer comes back.
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Hi All,
I was diagnosed with DCIS in Dec and had partial mastectomy on Feb 8th (last Friday). All went well and then went back for my follow up this morning and they said they found ILC too so now I guess it’s mixed DCIS/ILC. This is all so confusing! So now I’m scheduled for another surgery for node testing. I meet with radiation oncologist next week to get that started. I really thought I would go back in today and all would be clear but that was not in the cards yet. Hoping someone can shed some light on this mixed.
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MY core biopsy said IDC my double MX showed Mixed IDC and ILC both breast. I am taking Anastrozole
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Just adding my dx to the thread for people who are doing searches.
I was diagnosed with a intraductal papiloma with atypia of the left breast via core bx after a small "suspicious finding" on screening mammogram. Because of the atypia, lumpectomy was recommended.
After my lumpectomy (BS took a total of 5 cm, the suspicious area on mammogram AND MRI was about 1 cm), my diagnoses was upgraded to DCIS grade 3 with comedonecrosis. Lumpectomy did not yield clear margins, and so my BS recommended left MX with Sentinel node biopsy.
After my MX, in addition to the DCIS, they found a 5mm aread of invasive "lobuloductal" carcinoma. Node was negative. Ki67 is 5.
My MO is sending it for oncotype testing, and is also going to get a second pathology opinion since "lobuloductal" carcinoma is uncommon.
At this point, with the invasive cancer being Her2- and my node being negative, she is not recommending chemo, but will want me on Tamoxifen for 10 years (or I guess until menopause strikes and she can transition me to an AI).
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Hello everyone,
I am very confused, also.
Was diagnosed w/ IDC w/ lobular features (bi-lateral/ post-surgery biopsy).
I understood this as IDC-L -- but a rad onc resident wrote clinic notes claiming it's "IDC/ILC" & strongly recommending re-irradiation. (I've already had bi-lateral mastectomy, intermediate Oncotype score, Grade 2, ER +, on anastrozole one month now.
2nd opinion med onc is re-testing pathology to see if there's a role for chemo...
My understanding is that IDC-L and ILC have differing prognosis for post-menopausal women. So, how do I correct the errors resident wrote in my medical record?
Thanks,
Roseanne7
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Rosanne7,
You can request an amendment to your medical record under HiPPA and submit this to the health information medical records dept or HiPPA coordinatorIf you are seen at a hospital clinic. if at a small medical office you can submit your request to the physician in charge of the resident or the owner dr of the medical office. You write up you what believe to be the corrected information. Even if the doctors don’t agree your opinion will be seen as it’s supposed to be attached to your medical records. I’ve done this before and the drs agreed the resident made an error. The records were corrected and I was refunded the extra charge for services I didn’t receive. feel free to send me a pm if you have questions.
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Thank you, Veeder14 ! Excellent info --
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My tumor in 2014 was mixed ductal and lobular. But I was just revisiting labs before an appointment and noticed that my post-surgery pathology says, in places, that there are "patches" of ductal and that in most of the tumor, except for the small patches, e-cadherin is lost. E-cadherin is lost in lobular and retained in ductal. So now I am realizing it is primarily lobular. I am wondering if this means I should see an oncologist who specializes in lobular. My current oncologist just doesn't seem that interested in this issue.
One thing I read is that lobular may seem to have a higher grade, specifically because of the tubule part of the score.
My pathology seemed a little disturbing with grade 3 (or 2 in one lab), highish ki67, LVI, but my Oncotype was low. I had a positive HER2, an equivocal and a negative so one doc retested with 60 cells instead of 20, and got a negative. The ductal patches were positive.
Genomic Health makes a slurry. Labs use certain blocks. With a heterogeneous tumor, I worry about accuracy.
My doc just isn't interested. I feel that my risk goes up in years 5-10. I am seeking a Breast Cancer Index or Prosigna assay.
But in this post, I am just wondering if my tumor was really "mixed" or instead lobular with patches of ductal.
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I had the same mixed bag when I was diagnosed . Had an awesome onc. And now 14.5 years later I’m doing great . And that’s with 22/22 positive nodes . I’m thinking you don’t need another specialist just make sure you are happy with the doc you have . I’ve never heard of a BC doc that specializes in just lobula
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There are absolutely MD's that specialize in lobular. And treatment decisions can be different, which I why I brought it up. If you read the research, some mixed cancers are more like lobular, and some more like ductal. The ones that start off with some LCIS included, tend to come from a common ancestor, so to speak.
The crux of my question is that my tumor had almost entirely e-cadherin loss, which is only true of lobular.
Lobular cancers tend to spread later in the game.
I am not happy with my current oncologist because I need more discussion of these details, and also an openness to the Breast Cancer Index.
My testing was contradictory from the start and it took me 3 opinions to get answers I could trust. I'm just going to do it all over again. I would prefer at least two years past the 5 years of Femara, if not 5.
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windingshores, I'm in a similar boat. My tumor had some tubule formation (which is almost entirely non-existent in ILC), but had complete loss of E-Cadherin. I had neo-adjuvant chemo (not because my case was locally advanced, but because I was on a clinical trial - control arm - that required neo-adjuvant treatment). I had good response, but had some cells left after chemo. Pathology on the pre-chemo and post-chemo is basically the same - high score for tubules (3), intermediate for nuclear pleomorphism (2) and low mitotic (1), giving me an overall grade of 2. From what I read this breakdown is very common for ILC, and it's almost always Grade 2. What drove yours to be Grade 3?
I never had an oncotype, but my MammaPrint was High Risk, which is why I was admitted to the neo-adjuvant chemo trial. My Ki-67 was 40%. so very high for ER+/PR+ cancer.
In the end, pathologist classified my tumor as "invasive mammary with lobular features". So, I feel like I should be an ILC. However, my oncologist was not convinced, and said that with the way my tumor imaged and felt (a very distinct lump, also very visible and distinct on all imaging), she would guess IDC. She didn't put too much weight on E-Cadherin loss.
At the very beginning, when I was doing chemo, my oncologist said that treatment is the same for IDC vs ILC. The chemo was working (had sequential MRIs to monitor tumor response) and I didn't question that (ok, I did, but at that point I felt I needed to have treatment FAST, as my tumor appeared very quickly). After surgery I chose (with her recommendation) the most aggressive anti-hormonal treatment (ovarian suppression with AI).
For a time this was all so raw, and I wanted to put the thoughts about specific tumor type I had in a far and dark corner of my mind. Now I'm 2 years post DX and 18 months post surgery, and I'm ready to face this again.
Is your concern specifically with the duration of Femara? I am very early in the hormonal treatment timeline, but I got an impression that if I decide to do 10 years of Femara, my onc will be very supportive. I'm just thinking "I hope I make it to 5 years", you know? I'm staying appraised as much as I can on research on lobular. There is currently a clinical trial for metastatic lobular cancer, and I feel this may be the first one where they concentrate specifically on this subset of BC, and most importantly, the loss of E-Cadherin in ILC cells (the trial also includes gastric cancer patients, and gastric cancer's hallmark is E-Cadherin negativity). However, it's for metastatic patients, and only phase 2, so I feel like we are a long ways away from having a drug that can be offered specifically to early stage ILC post surgery/chemo/rads, other than AI.
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FarAwayToo, first of all, the best of luck to you as you continue hormonal treatment.
Like you I put things away in a dark corner but as I approach the 5 year mark, and also face pressure from my oncologist to stop meds due to effects on bones, I pulled all my pathology out.
I had conflicting HER2 results. Highish ki67% and grade 2 or 3 (depending on the lab). focal LVI (lymphatic) but low Oncotype. Basically a lot of contradictory results.
I hadn't focused on the e-cadherin loss or the language of "patchy ductal" in the context of what may be mostly lobular. I am going to have to see couple of docs on this.
My main concerns are whether or not to continue meds (and my doc doesn't do Breast Cancer Index or Prosigna assay). And also the fact that lobular can be hard to find with imagine, so how would I know it had metastasized? This is a challenge with lobular.
Finally, like everyone here, I would love to feel safe. The heterogeneous nature of my tumor makes me nervous in terms of trusting any results. Part of it may be HER2. Part of it might be highly aggressive and part slow moving. Who knows.
Usually I feel a little anxious and then put it aside but I promised myself to do the same due diligence at 5 years that I did originally. I saw a bone doctor for starters, so that I at least have the option to continue Femara. I would like two more years of Femara-until my daughter finishes her PhD!
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Winding shores, I am not sure why your oncologist will not do the BCI, but I too had a low Oncotype(12) which gave me a sense of relief. However, my first oncologist ordered the BCI shortly thereafter (unbeknownst to me and way too early) and it came back with high risk of late recurrence. I am getting a DEXA in January to see how my bones are doing, but I am hoping to go at least 7 years on Arimidex. I would really like to know your oncologist’s reasoning for not giving you this information. Perhaps you can get another dr. to order it.0
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I got three opinions at the start of this and will do that again!
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FarAwayToo- I am finding your results really interesting! My tumor (speaking of my largest, but I think the smaller were similar shapes) was very clearly a "tumor" that was extremely visible on imaging, even to me. On biopsy they said Mammary Carcinoma with ductal and lobular features. My KI67 was 40%.
After BMX, my pathology was ILC with pleomorphic features. Overall Grade 2: Mitotic rate: 2, glandular differentiation: 3, Pleomorphism: 2. I'm an a top NCI hospital and I got a second opinion from an even higher ranked NCI hospital who also concurred with ILC.
After reading your thoughts it does make me wonder about the classification.
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OnTarget, yes, your pathology looks similar to what other ILC would look like (from what I read).
Always get 3 for glandular differentiation (tubular formation) - lack of tubule formation is a hallmark of ILC (the only reason my pathologists were not convinced I had ILC was that there was some "focal tubule formation", although the score was still 3 - less than 10% of tissue shows tubule/glandular formation).Usually 2 for pleomorphisms (I'm not sure why).
Usually 1 or 2 for mitosis, although I still don't understand how that is different from Ki 67 (mitosis 1 for me, 2 for you, but 40% is a high KI67). Amazing that you and I share the same number, but my onc said that hormone positive BC in young women ( I was 40, you are 42) often has high Ki 67.
I have very little tissue left from post BMX, but perhaps I can get second opinion on my biopsy pathology that was done at my community hospital. (I transferred my care to NCI hospital once I had cancer diagnosis, and they re-read the slides and they said "currently classified as invasive mammary, but lack of E-Cadherin raises a question of pleomorphic ILC").
As I posted earlier, I haven't dug into this question since after surgery, still trying to understand if having confirmed PILC would change anything for me. From what I understand, there is some evidence that AIs are better for ILC, which I'm already doing. I'm also getting Zometa every 6 months (not that it is somehow more needed for ILC, but just to note that my oncologist put me on the most intensive treatment there is available right now for early ER/PR+ BC). I looked into PALLAS trial, but realized I had low chances of getting in due to low enough risk (low for them, not low enough for my peace of mind!)
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I remembered that they were also looking for DCIS in or near the invasive tumor, and while my re-read of the biopsy pathology stated "in situ component also appreciated", my post MX pathology didn't have any DCIS (but my "good" breast had plenty of that - found by MRI before chemo started and confirmed by biopsy). I understood that presence of DCIS means that tumor is more likely to be IDC. Oh, my community hospital pathologist states "no DCIS".
Boy, pathology on my biopsy was my first glimpse of how non-binary everything is in oncology. (I'm an IT consultant/programmer by trade, and I STILL struggle with the fact that medicine is not an exact science).
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Good to hear, Windingshores. Keep us posted!0
