ILC questions

Fraz
Fraz Member Posts: 2
edited September 2016 in ILC (Invasive Lobular Carcinoma)

Hello, forst of all sorry of my english is not that good, i AM from Holland and there I can't found a special forum for ILc only general for breast cancer.

I was diagnosed in May 2012 , I was 44 years old, with ILc left breast. Two tumors (5 cm and 0,8 cm).ER/PR + grade II with an micro and a macro metastase in the lymfenode. I had chemo TAC, mastectomy, radiotherapy and hormone therapy tamoxifen.

Then in January 2015 again ILc right breast, two tumors (2,4 and 0,8) ER/pr + grade II with a macro metastase in the Lymfe node. again mastectomy, chemo xeloda and vinorelbine, radiotherapy and I switched to anastrazol ( and zoladex)

I have no brca or chek2 gen.

I read that ILc is more often come back on the other breast and is not responding quite good to tamoxifen .Well I'm the living prove of that. Does any one know why ?

Further I was reading here that ILc is normally growing slow but in 2012 and 2013 there was no sight of a tumor in my right breast ( Mir in 2012, mambo in 2013).


Is there more difference between ILc and Idc ?

Thank you



· Share on FacebookShare on Twitter

Comments

  • JohnSmith
    JohnSmith Member Posts: 651
    edited September 2016

    Welcome!

    ILC is less common. It has not been studied very much compared to other types. The therapies and guidelines from the last 3+ decades have been based on clinical trials that were heavily weighted with IDC patients. The conclusions of these trials didn't fairly represent ILC patients, since no more than ~20% of the patients in any trial are ILC. Subtype analysis comparing ILC vs IDC outcome within these large trials never happened. In terms of the large Phase III Tamoxifen clinical trials, this ILC vs. IDC subtype analysis was never done. If it was, I'd love to see the data.

    Recent independent and large genomic studies (from TCGA, Jules Bordet, METABRIC, etc.) clearly show that ILC and IDC are distinct molecular diseases. Further, emerging evidence suggests that there are different ILC subtypes.

    Despite the rumors, ILCs are no more likely to have a synchronous contralateral cancer than IDCs.
    Source: http://www.ncbi.nlm.nih.gov/pubmed/26703116

    Since you are in Europe, you may want to follow the progress of the RATHER consortium (http://www.ratherproject.com/), which is focused on ILC. They have a Phase II clinical trial dedicated for ILC patients with enrollment ongoing in France, Netherlands, Spain and the UK.

    Best of luck.

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited September 2016

    I am so sorry you had to go through this twice. I am not sure that the problem is that it is more likely to come back on the othe side. Judging from my own experience and that of several others with similar stories, I think it is rather that ILC evades detection. When I was diagnosed, nothing showed in my right breast except a few micro-calcifications and some fibroids. This was after U/S, mammo, MRI and CT. I chose BMX for various reasons, mainly to avoid intensive follow-up on the right breast and also for symmetry. On the path, extensive LCIS and othe pre-cancerous conditions were found in the supposedly healthy breast. My doc said that if we had not removed it, I would have developed invasive cancer in it within two years, which is similar to your timeline.

    So most likely, unfortunately, you already had something brewing at time of dx, but they couldn't see it

    · Share on FacebookShare on Twitter
  • Fraz
    Fraz Member Posts: 2
    edited September 2016

    I think you are right and probably indeed there was something already in my right breast. What's scary then is that the chemo TAC and tamoxifen didn't do there work well.


    I hope that the study Rather will lead to a better understanding and better treatment of ILc. It's a pity that there were so little study to ILc and the best treatment

    · Share on FacebookShare on Twitter
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2016

    http://cancerres.aacrjournals.org/content/early/20...

    http://europepmc.org/articles/PMC2701641

    Hello, Fraz, and Welcome. Above are two links to articles discussing possible reasons why there may be at least a subset of ILC that is resistant to tamoxifen. My oncologist doesn't think this is the case, but I do. The articles are extremely technical, but the bottom line is that ILC and IDC are biologically different. It is good you are on anastrozole now. It seems that aromatase inhibitors are quite effective for ILC.

    Here is a link about an upcoming conference devoted to ILC, which has been understudied but is finally getting some attention.

    https://upci.upmc.edu/wcrc/ilcSymposium/info.cfm



    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Welcome, Fraz! We're so sorry you've found yourself here, but we're glad you've joined us, and as you can see from the responses you've gotten, you have come to the right place for support as you go through this again. We're all here for you!

    The Mods

    · Share on FacebookShare on Twitter

Categories