Any long term survivor stories with ILC

13

Comments

  • iamelaine
    iamelaine Member Posts: 40

    Hi everyone. I am coming up on my 15 year mark with a very craptastic diagnosis. My stats are below. They don't warrant repeating.

    Winking

    Anyway, there are lots of ILC ladies who are years and years out who are doing great.

  • dakrock
    dakrock Member Posts: 17

    IamElaine

    Sorry to hear this.   Keep the faith and keep us posted.

  • MRock
    MRock Member Posts: 34

    IamElaine, your diagnosis may be craptastic, but you're doing great - 14 years on! Wow!

    You've just given me hope! (see my info below....)

  • jenni__ca
    jenni__ca Member Posts: 77

    Elaine ... sounds like we can have a toast together this summer !

    ThumbsUp

  • BCThriver
    BCThriver Member Posts: 1

    I'm 10 years out and read these boards a lot through my treatment (mastectomy with full lymph node dissection, chemo, radiation, tamox and AI which I'm still on). My grandson was just a month old when I was diagnosed, and I was determined to live for him! My late mother said I would be fine- and no one ever disagreed with my mother :). Take heart, those of you who are new to this. I never thought I would forget any detail of my ordeal, but blessedly so much of it is now a faded memory!

  • Bellis
    Bellis Member Posts: 2

    I am 7 years out and still on tamoxifen - plan to do 10 years. I know that an Al might be more effective but I feel very comfortable on tamoxifen and my onc thinks tamoxifen is the right choice. Hope she is right :)

  • beth1965
    beth1965 Member Posts: 203

    Hey there you doing great - I celebrating 6 years I had 9.2 cm tumor and 17 nodes and nodes were excapsular I am probly saying that wrong. I am doing good don't think about it as much as I did. It is hard not to be scared sometimes even now. I am on anastrozole for life I love green tea I drink tons maybe its the secret I don't know. Think about future as much as you can in small steps. Like I wanted to see son finish public school - I did - then I wanted to see him graduate high school- I did - saw him fall in love first time...etc... try that it helps. Best to you - Beth

  • MenorcanChica
    MenorcanChica Member Posts: 1

    i was diagnosed December 2017 with stage 3A multifical lobulillar (I had 5 tumors), I also had perineural invasion (gone into the nerves), and deep margin affected. 6 lymph nodes infected with category extra capsulated (when it’s gobe out of the lymph node). I completed 15 chemos, finished radio last August. On letrozol/femara. I'm 42. I also would like to hear from lond time survivors! Been tough. Stay positive

  • violette
    violette Member Posts: 1

    Just wanted to say, diagnosed 2003. Lumpectomy, chemotherapy, radiotherapy + 5 years Arimidex. I visited this forum then for support and well remember the fear and uncertainty I felt during this unwelcome journey. No problems at all since. I know I desperately wanted to hear of positive outcomes, so I hope this helps someone.

  • Rolojolo
    Rolojolo Member Posts: 1

    Hi this is my first time participating in this type of Forum. Glad I can contribute and let you know I was diagnosed 10yrs ago in Jan 2009. I had a lrg 12cm tumour, & 4 affected lymph nodes. I did chemo first , then right mastectomy, radiation, and Arimidex for 7 yrs. I'm feeling great at 55!

  • moderators
    moderators Posts: 8,637

    Violette and Rolojolo -- welcome to Breastcancer.org!

    Thank you so much for sharing your inspirational stories! Wonderful to give hope to many here who find it hard to remember that you CAN get through treatment and live a long, happy life. Cheers to many more happy, healthy years!

    We hope you continue to share here, and inspire and support others.

    --The Mods

  • Chris13
    Chris13 Member Posts: 112

    Hi

    I'm 7 years this May 1, 2019. Surgery that day 7 years ago, on DH's bday.

  • Kstinekd
    Kstinekd Member Posts: 12

    Hi All. My aunt was diagnosed with ILC 22 years ago and is still going strong. She found a lump at age 45 on her right breast. She had a mastectomy without reconstruction and with all lymph nodes removed on that side, then chemotherapy, radiation and 10 yrs Tamoxifen. She deals with lymphodema because of the node removal (it was prior to the development of sentinel node detection) but otherwise is now retired and is living a wonderful life of travel, leisure and time with family. I was just diagnosed with ILC at age 45 via a lump in my right breast, so I look at her as a strong beacon of hope!! We are both carry the CHEK2 gene variant.

  • elderberry
    elderberry Member Posts: 1,068

    I keep coming back to read about all you thrivers who had LARGE tumours. Mine is roughly 5 cm (IDC) and I will be starting chemo very soon to shrink it. Only met with the BC Team on March 21 so my head is spinning. Right now it is hard to get my head around anything but THIS. I am an excellent cook, love food but the thought of what to make for dinner is suddenly a challenge. I am scared about going for a PET scan. You wonderful ladies give me hope and courage.



  • margun
    margun Member Posts: 385

    hi and congrats to all survivors.

    All posts are with her2- I think, there are survivors withher2poditive grade 3?

    I am diagnosed with this type and I will be encouraged to hear a positive story with type.

    Thank

  • meow13
    meow13 Member Posts: 1,363

    On my 8th year, no cancer, knock on wood. I had both ilc and one idc tumor.

  • margun
    margun Member Posts: 385

    please someone reply!

    I’m her2positive stage 3 Tumor 1.5cm. I am at the end of my devint ac and I noticed di this round and dfinnatly yesterday and today Sumerian’s blurry vision. Is ac creates blurry vision? Anyone experienced it

  • margun
    margun Member Posts: 385

    meow you ere her2positive and grade 3 as me?thank

  • meow13
    meow13 Member Posts: 1,363

    My ilc tumor was grade 2, and her2 +2 but fish test says her2-.

  • Rociteamo
    Rociteamo Member Posts: 2

    Hello 💖

    I am very happy to notice about so many fighters out there.

    My mother was diagnosed with ilc about 6 months ago. Since that time she has not stared a conventional treatmet to avoid chemo due to a friend who passed away 2 years ago for the same type of cáncer. We live in Toronto but she went back home to Colombia trying to find different options but now she is in pain really hard and her breast is open.

    I am trying to get any advise about where she can start an apropiate treatmet in Canadá.

    Hugs

    Julián







  • iamelaine
    iamelaine Member Posts: 40

    I hit my 15 year mark this month. I was diagnosed with inoperable, locally advanced ILC. We threw the big guns at it and I am still taking an AI.

  • dakrock
    dakrock Member Posts: 17

    Hi Margun

    I was on AI letrozole for 13 months.   I did experience blurry vision at times.  I still think I don't see well in one eye.  I think it was from the letrozole.  I told my Oncologist this past week that I am stopping the letrozole.  She didn't have a problem with me stopping and said she understood.   

  • dakrock
    dakrock Member Posts: 17

    Wow good for you Elaine1.   That is incredible.  

  • karen1956
    karen1956 Member Posts: 4,623

    13 years!

  • meow13
    meow13 Member Posts: 1,363

    Wow Karen & Elaine! Many more.

  • beach2beach
    beach2beach Member Posts: 246

    Love reading these. Many many more years for all of us.

  • Texas357
    Texas357 Member Posts: 332

    I am 10 years out. I try very hard to live a healthy lifestyle: exercise almost every day, limit stress, eat a plant-based diet, surround myself with friends. I had to stop letrozole after 7 years because it knocked me into osteoporosis. I'm almost 62 years old and feel great. It's a reality check for my MO to remind me that ILC is sneaky and can recur much later than other forms of breast cancer. But I can't live scared. I do my best to live in the moment and enjoy whatever today holds.

  • wallycat
    wallycat Member Posts: 1,421

    My cancerversary was Sunday (I posted a separate thread here). Starting year 13.

  • jojo68
    jojo68 Member Posts: 336

    7 year survivor, 5 of the years being stage 4.

    I have mets to bone marrow, bones, ovaries and peritoneum...I try to make plans and always look to the future. Not to say I dont have super tough days, especially when ascites come back.

  • vixielyn
    vixielyn Member Posts: 4

    What type of chemo??