ILC dx: need only positive stories!

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Anonymous
Anonymous Member Posts: 1,376
edited December 2015 in Just Diagnosed

Dear all, I found out two days ago I have ILC, which I was told is a rare form of bc.  I found  a small oval lump myself during a BSE in August--had clear routine mammograms, always. Dense breasts, 53, still ovulating, dozens of fibroids removed during two prior surgeries. No history of BC in my family.Doc said the lobe was .8 centi, but I don't know if lymph nodes are involved yet or if it is anywhere else. He took three during lumpectomy to examine and I'll find out Wednesday where I'm really at with all this and what my future looks like.

Needless to stay, I'm SHOCKED and paralyzed with fear. Going on the ILC forum site is terrifying and not very encouraging. Is there a place somewhere on this forum where I can go to read positive recovery stories?  I need them, badly, right now.

Thank you!

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  • hlya
    hlya Member Posts: 484
    edited October 2011

    hi, claireinaz

    ILC forum is very good.  There are lots of knowleagble ILC women there who can help you out. I experienced the same as you 2 years ago and they really made me feel better.

    as ILC is a very small group of BC, not many people in other forums have knowlege about it, but the women in that forum did lots of research by themselves which would really help.  also when I joined the forum I remember there was a student in Russia who specialized in ILC study as his mom got ILC, and he posted lots of lab test results for ILC.

    Knowleage makes you feel better and can really calm you down. - just my experience.  it feels better than standing in darkness.

    I would like to know more about your test result.  as your ILC form a lump - which I am interested and would like to know.  you can pm me if you want.  

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  • hlya
    hlya Member Posts: 484
    edited October 2011

    Also, please note that in most of cases people only come to internet when they have got some problems.  there are lot more people out there who are busy with their daily life and don't have much time to come here if they do not have any problems. so, you would definitely see lots of bad news on internet. 

    But, when you understand the difference between you and the others -which you need knowleage to understand, you will calm down.  it happened to a friend of mine who didn't want to hear anything about her BC at the beginning, and then felt much better when she knows more about it.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Hyla, thank you for responding to my rather desperate cry for support!  If you'll let me know what you would like to know about how I found this, what it looked/felt like etc., please ask questions here and I'll p.m. you with replies...!

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  • achpurple
    achpurple Member Posts: 290
    edited October 2011

    Hello - I also have ILC plus I'm triple positive, very rare to find people that are both.  I had a lumpectomy, sentinel node biopsy, chemo, radiation and Herceptin (medicine for triple positive cancers) and will take Tamoxifen for 5 years.  This journey is tough, but it can be done - take one step at a time, but always move forward.  I am now one year from diagnosis and just had a "clean" mammogram - will check back on here to see how you are (you can always find me for questions on the "triple positive" forum.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited October 2011

    Claire

    there are so many kinds of bc--ilc is just one more---- and it tends to grow slowly--- when I was dx'd my very capable surgeon said--well, if you have to have this, this is a good kind to have".....

    had a lumpectomy, 4 rounds of chemo, radiation and and now am 2.5 years into hormonal treatment.. worked full time through treatment--- had no family history-was 48 with otherwise excellent health---it is a shock, but once you get down to business on treatment, the shock wears away.......and you will just live your life.  Remember, lots of people have breast cancer once and that is it... that is my plan....

    You wanted to hear positive recovery stories---well, I consider myself cured and completely recovered!! full head of hair, feel great, living life and rarely think of bc- except for in October because that was when I was dx'd and it is of course bc awareness month (as if we were not already aware enough!).  

    Hope your meeting with the doc went well.... the ILC board is always helpful--- lots of nice people there....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    claire-------I have a very positive story for you.  My mom was diagnosed with ILC many years ago--had lumpectomy,  radiation and tamoxifen---will be a  survivor of 25 years in November! She has never had a recurrence and is doing well at age 82.

    Anne 

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  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited October 2011

    Hi Claire,



    My story:

    March 2011

    I had ILC 1.4cm in my sentinel node and 1.2cm in my left breast. I felt no lump and had dense tissue, and this year Feb 2011 I was also diagnosed with LCIS & DCIS in the right breast.

    I choose BLM 4/21/11 NSSM and implants. I am doing great, I still have moments where I reel a bit in shock from what I have been through, but now I am all finished with surgeries and just taking tamoxifen for five years. I am not having bad SEs.



    My advice, make sure you are comfortable with your medical team, get second opinions, takes notes, take a friend to appointments and take any support offered from family /friends.



    Low Oncotype DX score meant no chemo and I also had no rads.



    My journey has been quick and drama free,



    Take care,

    Alison

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited October 2011

    ILC here too .... lumpectomy removed 7 cm and mast removed almost as much

    needless to say i'm still here, onery and kicking

    take a deeeeep breath, let it out slooooooowly and take comfort knowing that there are a lot of us ILC types hanging in .... lots of positive stories

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  • Christine75
    Christine75 Member Posts: 1
    edited December 2015

    Hi there

    I noticed it's been awhile since you have been on here. Just wondering how you are. I also have ILC and it's also large (7cm) I don't often see other people in my shoes so would love to chat.

    Thank you!

    Christine

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2015

    yes one of my tumors was ILC, 4 years no problems.

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  • Crescent5
    Crescent5 Member Posts: 442
    edited December 2015

    Christine ... welcome. Sorry you're here.On January 13, I'll be a 4 year survivor of ILC. My surgeon also said people with ILC tend to fare better than others. Also, I think the worst thing about ILC is finding it since it's such a sneaky cancer. Most ILC tumors tend to be kind of big when found.


    {{{hugs}}}

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