ILC that is ER positive, PR negative

jenn70
jenn70 Member Posts: 5
edited August 2017 in ILC (Invasive Lobular Carcinoma)

I was recently diagnosed with ILC that is ER+, PR-. I am told PR negative is rare for this type of cancer. Anyone out there with a similar diagnosis? What type of treatment did you receive?

I have not received HER yet, initial results were inconclusive. Thanks in advance for your replies.

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  • lohoff
    lohoff Member Posts: 62
    edited April 2017

    I have the same diagnosis. I had a lumpectomy followed by 4 rounds of T/C chemo. My last chemo was March 27th. I was not aware that this diagnosis was rare.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2017

    yes, i had one ilc tumor one idc with lobular features my er was 95% but pr was less than 1%. I took AI drugs for 4 years I am 5 years plus NED.

    I had mx with no radiation and I did not do recommended chemo, oncodx 34.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited April 2017

    Hi

    my dx through oncotype was er+pr-her2_. My lumpectomy pathology was er+pr+her2-. So, not entirely sure.... although I do think pathology trumps the oncotype--anyway 4 rounds of A/C, radiation, anti-hormonals and her I am almost 9 years later.....


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  • trinigirl50
    trinigirl50 Member Posts: 343
    edited April 2017

    HI

    It's fairly uncommon for ILC to be PR- (but not really rare, rare is triple negative ILC). There are a few of us that are PR- on a Facebook ILC group. It means you're likely (but not definitively) to be classed Luminal B. Means more aggressive type, but responds better to chemo than luminal A type, and responds better to Letrozole (as opposed to Tamoxifen). That has been my understanding from reading and researching relevant articles (scientifice/medical) on the internet. . I did 4 AC, followed by 3 Taxol (had to stop due to bad reaction), then 3 Taxotere, 25 rads and now on Femara and Zometa, indefinitely. Just to be very clear - I am not a doctor, just someone who reads up as much as possible to try and understand my diagnosis and its implications for treatment.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited April 2017

    I've just been diagnosed with ILC that is er+pr-. This is my second time around. I'm having a double mastectomy on May 2nd and I'm not handling the news well.

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  • rivercaralee
    rivercaralee Member Posts: 29
    edited May 2017

    Hi,

    My cancer was also ILC which was estrogen positive but progesterone negative. I read, at the time of my diagnosis, that hormonal therapy was not as effective as in people who have both receptors. Recently, my Oncologist confirmed this finding. I did try it, Letrozole, but the side effects were too severe. I opted not to do Chemo, and with an oncotype score in the intermediate range, was supported in this decision by my docs. I did do bi-lateral mastectomies. I am 3 years out now and doing great.

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  • gkodad
    gkodad Member Posts: 188
    edited May 2017

    I'm also ILC, ER+/PR-/HER- . However, I previously had breast cancer in the opposite breast that was DCIS.IDC that ER+/PR+/HER-. This last time, 2 nodes were positive. So I"m pretty sure none of statistics reflect my situation. I've had BMX, AC+T, but had to discontinue Taxol due to severe neuropathy, radiation and aromasin. I'm two years out of my last diagnosis and doing well.

    I think we all are seeking the "right answer" but everybody's situation is unique. Demand your doctors give you the best information and ask as many questions as you need to ask. Then do what seems right for you.

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  • gerrib
    gerrib Member Posts: 163
    edited May 2017

    i had ILC Er ~70% pos Pr neg HER neg. I was on Tamoxifen at the time for previous IDC. One doctor mentioned that that could be the reason for Pr neg and lower Er positivity, but I'm not sure if that s correct. I had UMX no radiotherapy no chemo, though it was recommended. That was about 15 months ago.

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  • shuttld
    shuttld Member Posts: 3
    edited May 2017

    I was recently diagnosed with ILC on May 3.  I had a lumpectomy on May 12.  Path report showed clear margins and no ca in  two sentinel nodes removed.  All great news until I met with the medical oncologist who said because I have a high Ki67, further testing was needed, an oncotype DX that will take two weeks to get results.  My path report showed ER+, PR-, HER-2 negative, Ki67- 45% (High).  So now the possibility of chemotherapy comes into the picture.  Just when I thought I would only be facing 20 sessions of radiation.  So now I'm in a holding pattern for at least two weeks.  Not looking forward to the possibility of 24 weeks of chemo.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2017

    Shuttld I'm in the same place as you except this is my 2nd time around. My one difference is my Ki67 is low this time. Last time it wss 14. Ihad a oncotype test done last time which put me in the gray area which I believe is because of the lack of pr. I'm due to see my oncologist on the 1st. I'll let you know what he decides.

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  • WindyCityWarrior
    WindyCityWarrior Member Posts: 2
    edited August 2017

    Shuttld, your story sounds familiar. Stage 1a, had a lumpectomy, clear margins, no lymph mode involvement. Met with the radiologist and all set to wrap this up. Then boom! My OX score came back at 30. After the recent TailorRX study, my oncologist told me they were going to revisit scoring, with "high risk" beginning at 25. Four rounds of chemo will cut my reoccurance risk in half - from about 18% to 8-9%. So, this will be a longer road but I am going to take it.

    My best wishes to you

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  • WindyCityWarrior
    WindyCityWarrior Member Posts: 2
    edited August 2017

    So sorry, Kira

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  • kira1234
    kira1234 Member Posts: 3,091
    edited August 2017

    Windycity thanks, I find the point of moving on to chemo is 25 now. I didn't have any testing done this time but 7 years ago I came up 24. My oncologist said chemo. I never finished chemo

    This time oncologist never even considered chemo. Very interesting to know

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