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ILC Long Term Survivors

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NancyNY
NancyNY Member Posts: 5

Does anybody know people, or are you someone who has survived ILC long term, (more than 5  to 10 years) without a recurrence?  Please post!

I was diagnosed in 2004, and think I am fine, but, as I see from the boards, you can never be 100% sure.

Thanks!

Nancy 

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Comments

  • Gitane
    Gitane Member Posts: 58
    edited December 2011
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    Hi Nancy,  Great to hear from you again!  I'm fine, too (as far as I know....) .  Hugs,  G.

  • fredntan
    fredntan Member Posts: 237
    edited December 2011
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    I have a friend in SC. same dx. I think she's like 8 years out. I found her from a friend of mine. she's talked me off the edge a few times. love her southern accent. she said docs didn't know whaat to do with her. but she's fine

  • snicklefritz
    snicklefritz Member Posts: 9
    edited December 2011
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    Hi there -

    Whenever I see these posts, I always feel I need to respond , even if only to give someone hope or encouragement. Eight years ago I was dx with pleomorphic lobular, aggressive with positive lymph nodes. I was depressed and down and it was posts from others that gave hope. I sincerely hope I can do the same. love to all. MJ

  • karen1956
    karen1956 Member Posts: 4,553
    edited December 2011
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    Nancy....I'm 5 years 10 months since Dx....I last saw my onc in Aug 2011 and was NED...as far as I know I'm still dancing with NED!!!!  May we all grow old together!!!!  Karen

  • Trish03
    Trish03 Member Posts: 65
    edited December 2011
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    September marked 8 years for me. As you can see in my signature, I was Stage III. So far, I'm doing great! I hope for many more healthy years for all of us.

     Hugs, Trish 

  • awb
    awb Member Posts: 213
    edited December 2011
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    Nancy----my mom had ILC many years ago---lumpectomy, radiation, tamoxifen----she is now a survivor of 25 years without a recurrence and doing well at age 82!

    anne 

  • kim2005
    kim2005 Member Posts: 9
    edited December 2011
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    Hi Nancy,

     There's probably many more than we know!  Tomorrow I celebrate my SIX years since dx and I feel fantastic....I'm not naive enough to think it could never happen again but i'm not sared enough to think...'Hey, i'm going to go out and live my life!"  Do what you can and then enjoy what you have.  I'm healthy, make good choices,have a great family and I pray for the best...I think it's about all we can do.  Here is to you fantastic health and optimisism Nancy!!

  • kathleen26
    kathleen26 Member Posts: 10
    edited December 2011
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    My sister celebrated her 10th anniversary from an ILC diagnosis about three months ago.   She had a double MX and chemo.   She's had no problems since then.  

  • Ellie1959
    Ellie1959 Member Posts: 73
    edited December 2011
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    I will celebrate (God willing and the creek don't rise) 6 years on Dec. 27th! Here's to many more anniversaries for all of us!!!

  • Tenmom
    Tenmom Member Posts: 6
    edited December 2011
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    My great aunt . She is a 26 year survivor :)

  • Frapp
    Frapp Member Posts: 343
    edited December 2011
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    Did all of you have mx? Since I was stage 4 at get go, was discouraged from mx. This is my 2 yr anniversary and yesterday's pet shows three new cancers in breast and new activity in abdominal and pelvic lymph nodes.

  • dreaming
    dreaming Member Posts: 219
    edited December 2011
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    I am a 20 year survivor, about 12 years ago I had a chest wall biopsy for microcalcifications, there was a follow up an now they are gone.

    I am very attentive to any changes, and see my surgeon an oncologist once a year. I had 2 types of breast cancer, ILC and D.C.

  • Gitane
    Gitane Member Posts: 58
    edited December 2011
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    Hi Frapp,  I had bilateral mastectomy.  I don't know how common that is.  My oncologist said I absolutely needed the mastectomy on the left, I chose the one on the right.  I read this article out of the SABCS, from Vanderbilt University, saying mastectomy at Stage IV might be a good idea.  

    http://www.medpagetoday.com/MeetingCoverage/SABCS/30120

    I am so sorry you are getting news about progression.  Sending all my hugs and support.  G. 

  • ductal
    ductal Member Posts: 10
    edited January 2012
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    frapp, so sorry about the pet scan.  Hope you are not in pain and also hope many people love you through this.  Maybe they can thump this cancer yet.  Don't give up until you choose.  Pamper yourself.

  • Merilee
    Merilee Member Posts: 734
    edited January 2012
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    I like this thread, good job ladies!

  • MMSS
    MMSS Member Posts: 5
    edited December 2012
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    I have a close friend who had MX and reconstruction for a large ILC (she doesn't remember the size but says it was in all 4 quadrants of her breast and she has big ones) and had 22/33 positive nodes. She refused chemo and radiation much against the advice of her doctors and remained disease free for 15 years. She then had a recurrance in the scar that they excised but couldn't get clean margins so they put her on Arimidex which she tolerates with no SE and she remains fine 3 years later. The Doctor just shakes his head and tells her that she should have been dead years ago but to keep doing whatever it is that she is doing becaause it certainly is working.

  • MMSS
    MMSS Member Posts: 5
    edited December 2012
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    I have a close friend who had MX and reconstruction for a large ILC (she doesn't remember the size but says it was in all 4 quadrants of her breast and she has big ones) and had 22/33 positive nodes. She refused chemo and radiation much against the advice of her doctors and remained disease free for 15 years. She then had a recurrance in the scar that they excised but couldn't get clean margins so they put her on Arimidex which she tolerates with no SE and she remains fine 3 years later. The Doctor just shakes his head and tells her that she should have been dead years ago but to keep doing whatever it is that she is doing becaause it certainly is working.

  • [Deleted User]
    [Deleted User] Member Posts: 8
    edited December 2012
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    I am 8 years and 4 months out from a stage lllb, ILC diagnosis.

  • GrammyNancy
    GrammyNancy Member Posts: 24
    edited December 2012
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    It will be 6 years for me in Feb!!!

  • jenni__ca
    jenni__ca Member Posts: 77
    edited December 2012
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    eight and a half years here too

    doing well ... so far NED ...

  • jojo68
    jojo68 Member Posts: 336
    edited December 2012
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    Hi there!  Did your close friend take Tamoxifen?

  • Lily55
    Lily55 Member Posts: 1,748
    edited January 2013
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    MMSS - wow you give me hope, I was ILC stage 3 in nodes too, I refused chemo, but forced to have surgery (very painful vbreast prior to surgery so no option really) accepted hormone therapy, and rads which I regret as it has caused me a lot of problems........in constant pain - distress as a result

    I am being told I am high risk of recurrence all the time and 80% chance of getting it in remaining breast

  • mary625
    mary625 Member Posts: 154
    edited January 2013
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    It gives me hope too. I was Stage IIIC AFTER chemo. I was stunned and shocked to say the least. Onc said I would have had 25 nodes positive rather than 10 had I not had chemo. I do know that chemo did some good because I could feel the shrinking of the tumor itself and the largest lymph node, and it was confirmed by the doctors.



    I'm almost one year out from final chemo and beginning of February I'll be one year out from surgery. All good!

  • wallycat
    wallycat Member Posts: 1,346
    edited January 2013
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    It will be 6 years in April, but frankly, my gut told me I had had it longer than that....

  • LindaLou53
    LindaLou53 Member Posts: 60
    edited January 2013
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    I am now 7 years NED after a Stage IIIC ILC dx with 23/23 positive nodes. My doctors believe my ILC was likely already present when I had my first BC dx (IDC) in the other breast 12.5 years ago. Unfortunately, my ILC was never detected by any of the mammograms I had been getting every year from the age of 39. Only after the tumor was large enough to be felt, was it found on physical exam and that was only minutes after a mammogram which showed nothing. MRI was the only scan that finally showed my tumor and positive nodes. Fortunately, I am still doing well following treatments and am looking forward to every day I am given!

  • Lily55
    Lily55 Member Posts: 1,748
    edited January 2013
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    Lindalou - brilliant news, thank you!!  Keep on trucking....

  • MMSS
    MMSS Member Posts: 5
    edited January 2013
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    Joellelee, she didn't take any hormone therapy until after the recurrence when they put her on the arimidex.

  • jillanne0306
    jillanne0306 Member Posts: 1
    edited January 2013
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    10 years for me. Keep taking my little Femara but hate side effects. Was only 46 and have done alot of living the last 10 years. Just became a first time grandma last year.

  • lemon68
    lemon68 Member Posts: 301
    edited January 2013
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    Nancy thank you for starting this topic. I have been given some much needed hope after recently being DX. I do notice the majority got either a MX or BMX. Asked BS about that and he said not necessary. My tumor was 2 mm but Path reports shows LCIS and DCIS and now I am worried about the left which hasnt been looked at. I have a SNB on Thursday so will know more after that, he already said radiation. Concerned if this decides to return I will have done to much damage for reconstruction.

    You are all an inspiration to me, seems most are DC. I am cheering each of you on, thanks for giving me hope. xo

  • Momine
    Momine Member Posts: 2,845
    edited January 2013
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    Lemon, your tumor is tiny, mine was huge and thus the mastectomy. Because of the advanced stage I then had radiation as well on top of a BMX. 

    Do get a second opinion, but it sounds like your surgeon is sensible.

    In my case, I was told to delay recon for two years. Now that I have gotten used to being flat, I doubt I will ever bother.