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Invasive BC with mixed ductal and lobular features

Nahelton12 Member Posts: 7
edited September 2019 in Mixed Type Breast Cancer

Just got this finding on biopsy path report. Sound familiar to anyone? The surgeon explained it to me iin a 90 minute appointment. Thought I understood it but now .... I think she said that the specimen had both ductal cancer cells and lobular cancer cells. Also their is no tumor or mass just a "density" or she sometimes says lesion that is 10 cm by 8 cm covered with powder-like microcalcifications. It was a small cluster of these micros that she biopsies. She said she was surprised that it was invasive and mixed. Said she didn't suspect that. Because all of that microcalcification area could contain cancer, and because the area is huge (her word, not mine) I must have a mastectomy. Gosh, is this ever confusing.



  • melissadallas
    melissadallas Member Posts: 929

    I'm so sorry you got bad news. The lobular part makes sense, because it tends to not grow in a discrete lump but in big areas. It is often very hard to visualize on imaging. It is not unusual to have a mixed diagnosis.

  • Nahelton12
    Nahelton12 Member Posts: 7

    Thanks. Just read a "scholarly" article that says they are starting to think this mixed diagnosis might be a new variant of IDC and they labeled it IDC-L. I only found two studies about it. Seems it has a higher rated of second primary cancer and lymph node involvement. Guess I'll see if that's true for me down the road :)

  • Michele2013
    Michele2013 Member Posts: 232

    Did you have a petscan? My thyroid lit up. They took my thyroid (april 22) out and I was stage 1 cancer. My path indicated idc/ilc mixed carcinoma. I am also brac 2 +.

    No lymph node involvement thankfully :)

  • Nahelton12
    Nahelton12 Member Posts: 7

    Yikes! No pet scan yet. Sorry they found cancer in your thyroid. How can that be if your lymph nodes were clear? So much I don't understand. Seeing the plastic surgeon tomorrow. Have no idea what to do about reconstruction :/

  • carlads
    carlads Member Posts: 41

    Help ladies!

    Nahelton I am also mixed ductal and lobular.

    I'm new to this thread I have been on these boards for almost one year now..  I'll try to make this short.  I had my BMX last Dec 4th here was my path.  IDC 2.6cm cell grade 2 Histologic grade 2.  ER5% PR8% low... 1mm in sentinel node so Axillary node dissection done twenty two nodes taken all negative yay!! I had 6 cycles of T/C finished the end of April.  I never really felt comfortable with my MO and neither did my husband but I loved y oncology nurse and I didn't want to change during chemo.  After my last appt with him in Aug my husband and myself decided to change. 

    I went to a MO with Scripps hospital a cancer research hospital.  I took all my records to her before my appt.  When we walked in we thought we were just going to have a normal check up.. Nope turns out they requested my slides from the hospital that did my path.  Here is my new findings.  ER-PR- turns out normal breast tissue was mixed in with the tumor. HER2- that was the same. So I'm TN.  Which I had been questioning all along.  It is invasive but with ductal and lobular features. 

    It makes sense to me because I go every year for my mammo.  I found my lump (Thickening) right before my scheduled mammo appt.  I didn't wait and went right in for a diagnostic mammo and ultra sound. Both measured 1.8 and so did my core needle biospy.  When I had my BMX last Dec it turned out to be 2.6 so it was hiding. 

    I feel like I'm starting all over again.  My new MO did re assure me I had appropriate treatment, but I will always question that now.  I don't know a lot about lobular except it usually doesn't present itself as a hard lump and my lump was not hard.  Any input I would really appreciate. 

    I am supposed to be getting ready for my TE's and then I got all this new info.  Not sure how I feel now.

    Thank you in advance,


  • Nahelton12
    Nahelton12 Member Posts: 7

    Hi. Been away for awhile. Too depressed/anxious to think straight. Glad you found an MO you trust. So sorry you are going thru this again. My mastectomy has been postponed to 10-16 so that the BS and PS can work together. PS won't start reconstruction until I heal from the mastectomy but he is going to do a reduction on my non-cancer side. He said it was too big to be matched with any implant. Let me know how you do with the TE's. I'm worried about that part already.

  • cbm
    cbm Member Posts: 8

    Hi, Nahelton12, I was a mixed ductal/lobular.  My affected lymph node--the only one--was bigger than my tumor.  My tumor hid in a fibroid through about 8 mammograms, I'm told, and only the lymph node gave it up, for which I'm grateful.  I was triple positive, with ER,PR 90%, and Grade 2, Stage 2, 2A.  

    I had a bmx, chemo (dd ACTH), Herceptin, Neratinib, and 4.3 years of Femara.  After all of that, I had the Oncotype Dx and scored a 9.  I was assuming I was at least in the middle range, but that's pretty low. My oncologist said I was treated as Ductal, and my surgeon said (after the surgery) the bilateral was a good idea because of the lobular contralateral recurrence factor.   

    I read the studies on IDC-L and found I did not fit all of the 'frequent features."  I wonder if the frequency of lymph involvement is related to the ILC characteristic of not presenting as a lump so difficult to detect.  ILC is also slower, if I remember correctly.  

    Most advisors do not regard the Mixed diagnosis as particularly rare or of concern in and of itself. 



  • greengardens
    greengardens Member Posts: 1

    Would appreciate anyone's advice or thoughts on the following:

    Had mastectomy just last week.  Path report pending.  Been given MO appt. for next week.  How does one navigate intelligently through the cancer clinic?  is everyone locked in to an assigned oncologist?  Who has the most experience for my cancer type below:

    Invasive Ductal 2.3cm, lobular invasive 2mm, a 3rd tiny area of inconclusive but likely lobular invasive.

    Many thanks and all the best to everyone

  • Hopefuleigh
    Hopefuleigh Member Posts: 1

    Hi Greengarden...I'm new to this site.  It sounds like you are saying you have mixed ductile and lobular in the same mass?  I received the same diagnosis about two months ago.  I was fortunate enough to meet with both the MO and RO prior to my surgery (I opted for a lumpectomy as mine was small, just 1cm) so I had an idea of who they were and approximately when I would meet back with them.  I decided to foot the bill for the Oncotype testing (since my insurance company may deny it) so that I will have more info when I meet back with the MO.  As far as your question, I would STRONGLY urge you to do as much research and homework that you can on your own so that you are well equipped regarding questions and concerns.  And make sure that someone goes with you to your appointments.  I made the mistake of thinking my first RO visit was going to be a quick, brief evaluation until more pathology was back, but I was very wrong and so regretted not having my husband there to help me remember everything that was discussed over nearly two hours!  If you don't get a good feel from your MO, find a new one.  Although I was very impressed with both the MO and the RO, there is definitely a 'one size fits all' attitude out there regarding recommended treatment and I feel that there is a very strong tendency to overtreat at the moment.  I would say that all of the MO's would have a wide variety of experience but, again, you might want to do some research and make sure you have someone that has a nice balance of experience but is also open to the latest research findings.  For me, the challenge will be balancing the least traumatic treatment with the most effective outcome.  Although I am by trade a registered nurse, I also have a healthy skepticism that makes me ask a lot of questions...I want my caregivers to make it all make sense to me.  I was told that the mixed pathology really didn't have any appreciable differences regarding treatment and outcomes.  I did find info on the Internet that stated this type of BC was more prone to spread to the lymph nodes (I had one mildly positive sentinel node but the rest, 19, were negative), less likely to metastasize, but more likely to recur in the same area.  So, a mixed bag of good and bad factors.  Again, I was told the treatment and outcomes were not appreciably different.  SO SORRY for the long post.  Hopefully, there is something that will be helpful to you here.  All the best to you and your treatment!

  • Nahelton12
    Nahelton12 Member Posts: 7

    hi hopefuleigh and ladies. Your post was very helpful. It seems that most women with this diagnosis are having chemo as a given. Could that be because they are having lumpectomies instead of mastectomies? My surgeon said the only reason I would need chemo after the mastectomy would be if all of the sentinel nodes were positive for cancer or if my "tumor" was 5 cm or larger. Confusing since there isn't a tumor just an area of density covered with microcalcifications that is10 cm by 8 cm. guess I'm lucky if I can avoid chemo! Nancy

  • jhawk78
    jhawk78 Member Posts: 5 to this site. Recent diagnosis - invasive mammary carcinoma with both ductal and lobular present; multi centric with 2 areas - one 2.9 cm and the second 2.3cm. In different quadrants thus the mastectomy - opted for bilateral. Surgery went well, currently at home hoping to return to work soon....awaiting Mammaprint score. Oncologist did order pathology results on 2nd "tumor" to confirm it is consistent with results of 1st. (ER/PR +; HER2 -). Have learned a lot from everyone here and appreciate the input from those that have "been there" and care to share their experience. Thanks to everyone and I will continue to "learn".

  • BAL
    BAL Member Posts: 1
    Hi All:

    I was orginally diagnosis with lobular (2 cm) and during surgery another tumor was found (1.5 cm) with both lobular and ductal features. I had a double mastectomy with clear margins. Oncotype DX scores are 24 and 25. I am sitting right in the middle and have had different advise from Oncologist's on what to do. One stated no chemo is needed and the other says yes, TAC chemo is needed. The one Oncologist who said no because there is no information for individuals who fall in this group and Clinical trials are in progress regarding this. The other Oncologist states yes because of my age (43) and not sure if it would work either way. I would appreciate any feed back on this. Thank you.
  • Gully
    Gully Member Posts: 24

    Hi BAL, I was diagnosed with mixed type bilateral BC last Jan. Had BMX and both tumors were sent for oncotyping. The right side (7mm) came back at a 5. The left side (1.2 cm) came back at a 19. I was 45 then. My tumor grade was grade 2 and node negative. Since I was considered young, with bilateral BC and grade 2 I was given the option of either doing the chemo or not) With the help of Dana Farber docs, we decided to do 4 rounds of TC. Which was not fun but doable. It really comes down to whether or not you can live with your chance of recurrance as is or if you want to take a chance at making your odds better maybe...they give no garuntees. I read an article recently that said that everyone in the intermediate range should be studied further. That people that fall on the lower end of intermediate should not feel safer than those with a higher intermediate score, that we are all in the same grey area, where some will benefit from chemo and others will not but they just dont know yet.....

  • jhawk78
    jhawk78 Member Posts: 5
    Hi BAL - at 43 with Oncotype DX scores in the 20's I might be inclined to choose the chemo. Tough thing to deal with.
  • 2ndGenerationBC
    2ndGenerationBC Member Posts: 3

    Hi , I am new to the site. Diagnosed with Ductal, Lobular and LCIS. I had a lumpectomy with 4 sentential nodes remove 2 positive one with ductal, other with lobular; I don't have specific on the number of cells or mass size in my lymph nodes, Ki-67 score 32%, ER & PR +, Her2 -. BRCA1&2 negative.

    I insisted on Oncotype DX testing, score came back a 4 for both. I was scheduled to start my first chemo treatment last Friday. My oncologist received my Oncotype score right before my appointment. My chemo was postpone since he is not sure that it would be effective, he is consulting with my second opinion oncologist. I got second opinions from surgeon, oncologist, radiology oncologist and plastic surgeon before I made the decision on my treatments. I only one I didn't get was the pathologist, I should have! I did this because I lost my mother to BC and one of my sisters was diagnosed 5 years ago. The discussion is to go straight to rad and then Tamoxifen. I am very nervous on what to do. Has anyone else received a low Oncotype score and did not have chemo?

  • Ridley
    Ridley Member Posts: 95

    Hey 2ndGeneration -- I had a similar diagnosis to you -- ductal + lobular + DCIS + LCIS + lots of atypical cells.  Luckily nothing in my sentinel nodes.  My pathology came back as grade 1 for both ductal and lobular and my oncotype score was 8 (and I'm 46.)  I don't think the lobular was sent for oncotyping because the largest area of that size was 3 mm.  Same hormonal receptors as you and I'm BRCA negative as well (lots of breast cancer in my family, although until me, all was post-menopausal).  Recommendation was no chemo.  My team has recommended a mastectomy based on the complexity of my pathology and the difficulty it will be to follow me (ticking time bombs as my surgeon, who I love, put it.).  I'm just waiting for that second surgery now.  Unless something unexpected pops up from the next surgery, I won't have radiation either.  I started tamoxifen yesterday.

    I'll be interested to hear what your oncologist comes back to you with after consulting with a peer.

    Good luck with your decision -- your oncotype score is awesome, but I understand your angst in making sure you make the right decision for you.


  • 2ndGenerationBC
    2ndGenerationBC Member Posts: 3

    Hi Ridley,

    Even more confused. Both acknowledge that I am in a gray area; after a great deal of discussion they are leaning towards chemo. Proposed treatment CMF 26 weeks; weekly injections of methotrexate and 5FU, daily oral low dose cyclophosphamide. It may or may not do anything because of my Oncotype score, 5 years from now they may have data to support no chemo w/LN+ based on the SWOG trials. As my oncologist says he is looking to cure not just survive this increases my chances by another 2-5% with chemo. Because it is a gray area they are leaving the final decision up to me. I am still unsure...

  • Ridley
    Ridley Member Posts: 95

    Hi 2nd gen. Are you at an NCI cancer centre. If not, would you consider another opinion from one or from MDAnderson or Sloan?

    I was in that decision spot originally on mast vs, lump and I pushed my team to give me a clinical recommendation, and eventually they did. So if you want a recommendation from them, I would push the issue. I know they want to give us a role in the decision especially when it it grey, but I didn't have the same knowledge base as they did, and wanted to know what they recommended.

    Good luck. Ridley

  • 2ndGenerationBC
    2ndGenerationBC Member Posts: 3

    Hi,  sorry for the late response,  thanks for the info.  I also pushed for a clinical recommendation I asked both of my oncologist to consult with each other and get back to me.  Outcome;  I started my CMF on Nov 1st.  After 10 weeks I am finally at a place where I fell somewhat okay.  I am one of the lucky few that does not tolerate any drugs well so it is a daily struggle.  I am coping and praying everyday that I will finish as scheduled.  I have a follow up CT scan next week....I realize that every test, scan comes with some anxiety but overall amazed that have managed as well as I have.  

    Thank you!

  • Fourminor
    Fourminor Member Posts: 118

    i was diagnosed with invasive mammary with lobular growth pattern two weeks ago.  MRi showed nothing contralateral and only a 5mm possible satellite site near the tumor which is under a centimeter to my knowledge.  This is a recurrence from DCIS found in 20008.  i have been all over the place with my thought process on surgery.  First I thought i would have a unilateral mastectomy and wanted DIEP flap recon.  Last week i met with the PS and he said I do not have enough body fat to remotely match the other side (32DD) and would do better with an implant although he acknowledged that women with prior radiation do have a slightly higher complication rate overall with implant recon.  I cried all day knowing that i did not want an implant, but do not want to go flat either, and would have no choice but to mismatch.  However he told me the worst reason to choose bilateral is simply to match because if there is any problem at all, you will be heartbroken.  I decided then that i would have unilateral and just have to get over my vanity, and if I wanted to have CPM I could still do it later.  My surgeon agreed with me about this decision two days ago.

    Now i find an article about this particular pathology, which is fairly uncommon--not a lot published either-- saying that although though it behaves more like a ductal, there are distinct differences, and one is a 30% rate of contralateral second primary,  I am 46, this is already my second time going through this and i have a 3 year old child.  I emailed my surgeon because if that is true, 30 % is too high to just take my chances.  i am back in mental hell.  

  • roseamy
    roseamy Member Posts: 6

    Hi Ladies,

    I was dx 6 years ago this week with stage 3b bc with mixed lobular and ductal features, her2+ er+ pr+. I was 40 yrs old I had noticed the lump at 36 yrs but was not referred till it started to dimple etc-- long story.

    At the moment I am NED feeling fit and healthy and wish you all the best whichever treatment you decide on.


  • Gitane
    Gitane Member Posts: 58

    Congratulations roseamy!  It's good to read this.  You were so young.  I'm happy to know you are feeling fit and healthy.  Thank you for sharing your good news with all of us.Smile

  • rozem
    rozem Member Posts: 749

    can you guys explain what "IDC with lobular features" means?  does that mean that some of the cancer cells were found in the lobes as well?  does that make it more/less aggressive?  does that make her at higher risk for a contra bc?  she doesn't have her hormone/her2 status yet

    asking for a friend


  • roseamy
    roseamy Member Posts: 6


    On biopsy my tumour came back as mixed idc/ilc, 1 tumour but with this characteristic, mine was in the lobes and ducts.

    I had a large tumour min size 5cm with these features I asked my surgeon would I be best having a bi lat mastectomy and he said there was no reason to consider this and so far all is well I have mammograms on a yearly basis and then when I am 50 I will go onto the national screening programme if all stays well (in the uk).

    The aggressiveness depends on the grade and her2+ and er/pr status of the tumour. I had neo adj chemo which shrank my tumour down to 2 cm and then had the mastectomy then rads, I would have had the same treatment for only ilc or idc as I did for ilc mixed with idc.The her2+ bit decided the chemo I got.


  • windingshores
    windingshores Member Posts: 160

    I have read that those with lobular or mixed ductal and lobular should have special staining of the nodes because lobular doesn't show up as well with the usual staining. I am concerned about this and don't know if this was done for me. I am going to ask my MO and maybe the pathology lab.

    Does anyone know if this special staining is routinely done when there is any lobular component?

  • Georgia1
    Georgia1 Member Posts: 188

    Hi there. As far as I know there is no special staining. But I had a sentinel node biopsy with only one node removed and no node involvement. The main takeaway I got was that lobular cancer can be more "tricky," showing up as a new tumor relatively far from the first one. So whole breast radiation is recommended. Sorry to not be more helpful.

  • miranda2060
    miranda2060 Member Posts: 207

    Hi, I am newly diagnosed. I have two tumors in right breast. Just got results of biopsy of second, smaller tumor; the other, larger one is lobular, this one is ductal. Planning mastectomy, and medical oncologist had said I would be taking Arimidex. Receptors not yet known on this tumor, however. Of course, everything that happens scares me; doctor who did the biopsy said it doesn't change the picture that much in terms of my treatment path.

    I'm having anxiety symptoms, including ocular migraine (shimmering lines visible in right eye). Next appointment is with the plastic surgeon in re reconstruction.

  • miranda2060
    miranda2060 Member Posts: 207

    Hi, I am newly diagnosed. I have two tumors in right breast. Just got results of biopsy of second, smaller tumor; the other, larger one is lobular, this one is ductal. Planning mastectomy, and medical oncologist had said I would be taking Arimidex. Receptors not yet known on this tumor, however. Of course, everything that happens scares me; doctor who did the biopsy said it doesn't change the picture that much in terms of my treatment path.

    I'm having anxiety symptoms, including ocular migraine (shimmering lines visible in right eye). Next appointment is with the plastic surgeon in re reconstruction.

  • Georgia1
    Georgia1 Member Posts: 188

    Hi Miranda and welcome. I had one mixed IDC/ILC tumor, with a second smaller one found on MRI and diagnosed as ILC. I had a lumpectomy and radiation and like you, neither the second tumor nor the ILC changed the treatment plan much.

    So sorry about the anxiety and migraines! Don't hesitate to ask for anti-anxiety med and maybe both symptoms will subside.

  • beach2beach
    beach2beach Member Posts: 245

    There is a special staining for ILC to differentiate with IDC. Initially at biopsy I was diagnosed with IDC. At pathology after mastectomy it was changed to ILC. Had to wait an extra few days for final confirmation because of the certain staining they do which is I believe e-cadherin . In ILC typically there is a complete loss of E-cadherin expression(negative) where in IDC its positive. Its a protein that keeps cells together.