ILC Long Term Survivors

mikamika

sweetgirl19,

Thanks for your post! Do you now the details about their treatment and stages?

Sandiegohoneybee

hi. Did u do nerlynx? I’m Er and her2 positive. At crossroads.

karen1956

Today I mark 14 years since I heard those dreaded words!!! For fun I did the math (14 x 365) and that equals 5110 days!!!

mikamika

karen1956,

Congrats! I wish you to post here about your 44 year mark since that date. And for all of us I wish to read this post!

karen1956

Mika - 44 years from Dx will have me past 100!!!! But thanks!!

lauri

Fourteen years since I found the "thickening" in what used to be my left breast. At 75, many other things are falling apart but BC isn't one of my problems.

cantaloupes

Thank you so much lauri! Wish you continued good health

cathmg45

Hi everyone,

I will mark 12 years since diagnosis when this summer rolls around. Wow. I couldn't have imagined being at this point back then, since I was devastated by the diagnosis and year or so of treatments. I didn't even want to hear from my onc back then about my prognosis for survival. But here we are. The years since 2008 have had SO many peak moments. I miss my onc appointment last year, then decided that I should see him. I had to ask my husband what the doctor's name was-I had actually forgotten, and it wasn't just chemo brain!! I did see him and we had a nice chat. I hope we all live long and well.

Catherine

mikamika

cathmg45,

Congrats and thank you so much for posting here!

What was your treatment? Could you please share?

cathmg45

Thanks MikaMika! I had a bmx, followed by 4 rounds of chemo: taxotere and cytoxan. Then I had 2.5 years of Tamoxifen before I threw in the towel because of side effects. I had reconstruction with implants a year after bmx. So far so good.

mikamika

cathmg45,

Thank you for your response!

wallycat

I just completed 13 years, starting on 14....I posted in the ILC section since that is what I had (as a cancerversary post).

I know how you ladies feel...never thought I'd be out this far. Sure, it can change in a heartbeat, but that's life, right?

beach2beach

Congrats and a long, long time of cancerfree living!

iamelaine

I hit 16 years early last month. I had terrible stats when diagnosed but I'm still here and cancer free.

Happy Easter, ladies!

HelloItsMe789

Congrats wallycat and IAmElaine!

kar123

Such great news!!! Thank you so much for coming back and inspiring hope! 10 years for me in June!

skv0123

thank you all so much for adding to this thread. I am 1 year from diagnosis, 10 mths our from a Bilateral Mastectomy. On tamoxifen & Lupron. Was ER/PR +, HER -, 2.5cm, 0 nodes. I only get on the board every few month now, but it has always been helpful to me.

antonia1

It has been 10 years since I saw in the bathroom mirror my poor flattened and misshapen left breast and next month will mark the 10thanniversary of the official diagnosis. I’m fine, as far as I know, but still keeping my fingers crossed.

Longtails

Congratulations antonia1, kar123, IAmElaine and others!! Very inspiring and thank you so much for sharing! Very happy for all of you.

bc101

Hello!

I'm 7 years out and am feeling great. In the early years, I used to spend a lot of time on this site and most of it was wasted by worrying about one thing or another, but now I rarely venture here. Nowadays I worry more about Covid than cancer. What a year, huh? It's so inspiring to hear from the long term ILC survivors! I'm enjoying my life as much as I can and hoping for many more cancer-free years to come!

lillyishere

BC101, what stage were you? Did you have ILC in your nodes?

Wishing you many other ILC free years to come.

OGT42

I was diagnosed with ILC Stage 3A in May 2007. I was convinced that I was unlikely to survive and yet here I am, 13 years later, and healthy so far

mikamika

Thank you so much ladies for sharing your stories here! 💚
I wish you (and all of us) many decades of happiness and good health!

BeingPresent100

Curious if there are any long term ILC survivors who had lymph node involvement and were diagnosed in their 40s? Anyone on here past 15 or 20 years? Thanks!

BeingPresent100

Thank you for this post! I screen shot all of these survivor stories....inspiring.

bc101

LillyIsHere - sorry I missed your post!

I was stage 2b with micromets in my sentinel node. I didn't have to do chemo (low Oncotype). It was really hard for me to decide whether or not I should do radiation, but since they gave me the option I decided to opt out. My only regret was getting breast implants. Five years later I was recommended to stop AI's due to my risk of osteoporosis.

It does get easier the further you go out, but of course the fear never goes away.

Best wishes to everyone here!

momand2kids

Meant to check in-- 10/29 12 years out--- completely forgot on that day---- good luck to everyone!!!

mandalynn

Hello all!

I passed my 12 years out mark last September. Feels so good to know I have survived so much. Unfortunately I am now living with a new diagnosis of Stage III Lymphedema in my right arm. I am planning on having surgery to help with that and it is definelty a bummer as it is something I will have to deal with in some form for the rest of my life. However, it is much easier knowing I'm cancer cured!

KathyNSW

Hello All,

I thought I would check in as this year in august I will be 13 years since diagnosis.

I am going good but have osteoporosis in left pelvis.

Am very grateful and blessed for everyday as we never know what's around the corner.

Take care

Kathy xx

Astrid

Hi Kathy and all who posted here.

Being present, I son't exacrly fit your question as I was in my 40's and had 1 node pos, with extra capsular spill in 2002.. but that was IDC.

In 2012 I was dx with ILC but by then I was 52yo. That makes me a 9 year survivor of ILC though which is awesome right?

Stay well everyone.

Astrid.