ILC Long Term Survivors

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2021

    Hi anemome2,

    Welcome to BCO. We have some information on Adding Verzenio to Hormonal Therapy After Surgery for Early-Stage Breast Cancer With High Risk of Recurrence Reduces That Recurrence Risk but not necessarily on high risk. Here is the official site from the manufacturers Verzenio® (abemaciclib): FDA Approval and Indication however there may be some trials being done.

    Looking forward to hearing from others, and more details form your experience.

  • NinaCA
    NinaCA Member Posts: 204
    edited October 2021

    Hi, Just adding my longevity with ILC to this list- 20 years! Although I did go metastatic 3 years after initial diagnosis (Tamoxifen was not good for me) Femara kept me NED for 14 years! I responded well to Ibrance/Faslodex when mets reappeared in my Liver, then have responded well with Xeloda after it appeared on intestine. ILC can be very tricky. but luckily it is slow growing. My CA15-3 tumor markers helped me find my early single met and have helped me monitor trouble until recently. New chapter now, nothing showing on scans but high markers. I've been around so long I'm lucky I have a chance to benefit from the better treatments that have been developed. Good Luck All !!

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited October 2021

    Thank you NinaCA. I wish you many, many years ahead of you.

  • GeorgiaRai
    GeorgiaRai Member Posts: 175
    edited December 2021

    Ten years ago this week, I had to tell my 4 kids (ages 16 - 27 at the time) that I'd been diagnosed with ILC. I was Stage 3a, visibly positive nodes, & a tumor my surgeon couldn't even measure on the MRI; neoadjuvant chemo was needed to get it to a size she could remove.

    It took a while to stop worrying that everything was a sign of recurrence, but only once did something bother me longer than the "2 week" guideline. (A follow-up MRI showed that was nothing.) I actually always looked forward to my monthly (and then less frequent) check-ups and scans because, to me, they signaled that everything that had worried me up until then was a "false alarm" & I was able to quit being so afraid.

    I hope to be done with oncology visits, AIs and Boniva early next year.

    Here's to my ten years,, and wishing the same - and more - for each of you!

    Rachel

  • Gracejoy
    Gracejoy Member Posts: 48
    edited November 2021

    Congratulations Rachel, very happy for you to make it to 10 years without any recurrence.

    My situation is very similar to yours. I don’t want to discourage you or anybody else but my medical oncologist who is into research, tells me lobular behaves different from ductal breast cancer. He says if LCI doesn’t come back in 5 years then it might come back after 10 years. So please continue seeing your MO as you did thus far. BTW my MO says we don’t need to take AI after 7 years because benefits of taking it are there already for years to come.


    All the best.

  • GeorgiaRai
    GeorgiaRai Member Posts: 175
    edited December 2021

    Thank you, Gracejoy! I do whatever my oncologist tells me; since ILC is still a threat long term, she may keep me on an annual check-up schedule. Her protocols have changed several times during my treatment - going from 2 years of Tamoxifen + 3 years of AIs, to 2 + 5, to basically indefinite since I tolerate it well. So who knows what the coming years will bring!

    Best wishes to you!

  • lauri
    lauri Member Posts: 267
    edited December 2021

    Made it to 15 years! Took anastrozole for 10 years with minimal SE's.

    Unfortunately, now Stage IV at 15-1/2 years but MO says to hope for many more years.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited December 2021

    Congratualtions lauri.

    Gracejoy, I have heard similar to what you are saying. ILC recurrence increases every year, even after 10 years.

  • IAmElaine
    IAmElaine Member Posts: 87
    edited December 2021

    I hit my 17th year last March so am looking forward to 18 years in a few months!

    I hardly ever check in here anymore but was looking for someone I used to know that posted here so here I am!


  • Gracejoy
    Gracejoy Member Posts: 48
    edited December 2021

    I am so happy for you. You are a great encouragement for us. I wish you many more years in good health.

    All the Best

  • karen1956
    karen1956 Member Posts: 6,503
    edited February 2022

    Sweet 16💕. 02/03/06 I heard those dreaded words that changed my life forever! My DH found BCO soon after and it was my lifeline through chemo and radiation. I’ve made lifelong friends here on BCO. Thankfully I’m here living life. I’ve seem by children grow up into wonderful adults. High school graduations, college graduation, 1 wedding and so much more. 16 more years with my BFF, my amazing husband who is truly my co-survivor.

    There is life after breast cancer. Hugs to all who need them.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited February 2022

    Congratulations karen1956! Thank you for giving us hope.

    Do you mind if I ask a couple of questions? How many positive nodes did you have? What type of AI have you been taken and for how long?

    In hug-free coronavirus era, Facebook rolls out the reaction you miss

  • antonia1
    antonia1 Member Posts: 135
    edited February 2022

    Last September was 11 years since my diagnosis. Things were not easy during that time.
    My Husband was diagnosed with a rare cancer while I was still in treatment and was terminal from the start. It was tough taking care of my husband, while recovering myself. What helped me recover my equilibrium were my children and my wonderful grandchildren, who are the joy of my life - two of my grandkids were born shortly after my diagnosis and two after my Husband’s death. They had kept me busy, until Covid got in the way.

    I'm still NED and enjoy the life and my family. The fear of recurrence remains somewhere at the back of my mind, but I seldom think about it. I just take one day a the time








  • MikaMika
    MikaMika Member Posts: 342
    edited February 2022

    Thank you so much ladies for hope and encouragement! I am upset now, but your experience gives me strength.


  • Crisamatre
    Crisamatre Member Posts: 1
    edited February 2022

    This is my first post, and you give me so much hope. Antonia1, you are the first person I find with my diagnosis of ILC and her2 also. My dr says that we are hard to find so there is no data for ILC + her2. Reading that you are doing well after 11 years made my day

  • BWorrier
    BWorrier Member Posts: 58
    edited May 2022

    Hi, MikaMika: I understand you are upset now, we all went through this, it will be fine and you will move on with your life very soon.

  • LoverofJesus
    LoverofJesus Member Posts: 255
    edited September 2022

    too tricky— I was just scrolling through and realized you and I had a diagnosis on the same exact day! I hope you’re doing well. I have had all the things and now just awaiting exchange surgery along with taking Tamoxifen.

    Hugs sent to you today!

  • LoveLau
    LoveLau Member Posts: 105
    edited September 2022

    Hi I am now 6 years since completed treatment. I still have anxiety, I’d like to get rid of it. I am in remission.

    I think my doctors were not positive and I have not let it go although I tried. I have psychiatrist who gave me lots of meds which didn’t work and a psychologist who is you had beautiful but keeps telling me I’m doing great.

    Anyone who was able to come up with a way to stop the anxiety and just be happy? Thsnk you❤️💕

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited September 2022

    6 years without treatment you are not in remission. Recurrence could have shown up by now and if you have 6 years without recurrence, you are cured. What are you going to do after 20 years, still worry?

  • LoverofJesus
    LoverofJesus Member Posts: 255
    edited September 2022

    I am struggling today. I was deemed cancer free after surgery in November of 2021. I still get anxious. Every little ache and pain causes anxiety. I try not to be that way. I believe I’m cured. My dr even told me I have an 85% chance right now that I will never see this again. I guess PTSD will be around for a little while.

    So thankful to be able to come on here and read long term survivor stories.

    Hugs to all

  • KBL
    KBL Member Posts: 2,521
    edited September 2022

    LoverofJesus, I’m sorry you’re struggling. No matter the stage, this crap is always there once we are diagnosed. I hope you can find some peace, but when I feel sad or anxious, I let myself feel it. This is not an easy road. I’m sending hugs.

  • Veeder14
    Veeder14 Member Posts: 880
    edited September 2022

    I know someone who has survived ILC for 22.5 years without a recurrence. Amazing

  • beach2beach
    beach2beach Member Posts: 996
    edited September 2022

    Veeder14,

    That's certainly great to read!

  • KBL
    KBL Member Posts: 2,521
    edited September 2022

    I just passed nine years with six of those nine with no treatment because it was a missed diagnosis. October will be four years ago that I started having stomach symptoms and was diagnosed with spread to the stomach. I’m amazed and grateful I’m still here.

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