Any long term survivor stories with ILC

beach2beach Member Posts: 245


Was hoping for some long term survivor stories. Found so much conflicting information on ILC. Not sure where the truth lies. I know each person is unique but overall hard to find good information on it.



  • claireinaz
    claireinaz Member Posts: 583

    Not sure what you mean by "long term", exactly. I know there are plenty of us who have many, many years after an ILC dx. Most of us don't get on here very much since we are living our lives and not checking here for information as we would when we were in active tx, but I take heart in all the survivor stories where women were diagnosed decades ago and drop in to say hi.

  • beach2beach
    beach2beach Member Posts: 245

    Hi Claire,

    Exactly how you put it. To hear stories of women who are many years post Dx. Especially since there in general does not seem to be as many ILC as there are IDC posts it seems. I know it is less common than IDC,

    Great to hear!

  • ck55
    ck55 Member Posts: 28

    Hi Beach, I am coming up on 11 years in November. Had a huge (9CM) tumor, 2+ nodes.

    Feeling good, enjoying life.

    Hope this helps.


  • beach2beach
    beach2beach Member Posts: 245

    Great to hear and read ck55! I'm planning being here a long time and following the same of feeling good and enjoying life.

    Thanks for responding. Makes a sweet read for us newbies. :)Happy

  • SajeScents
    SajeScents Member Posts: 40

    Thanks for sharing, @ck55. That gives me hope!

  • meow13
    meow13 Member Posts: 1,357

    I am now 6 years no recurrence. I had one idc and one ilc with oncodx of 34.

  • cathmg45
    cathmg45 Member Posts: 5

    Hi Beach2beach,

    I was diagnosed in July of 2008, so it has been a bit over 9 years apparently cancer free, or in remission. I was 43 and my greatest wish was to see both of my children graduate from high school. They are now college graduates! Hang in there-sending you healthy wishes!


  • Racy
    Racy Member Posts: 974

    I will be a seven year survivor next month. I had chemo and have been on Femara for six years. I attribute my survival to the Femara and God.

  • claireinaz
    claireinaz Member Posts: 583

    Love that story, Catherine!

    My plastic surgeon is always encouraging....he asked me how long it had been, and when I told him (I was getting a checkup) he was really positive. He's been at his job a good long while so I take heart in his feedback.


  • Theresanne
    Theresanne Member Posts: 21

    I was diagnosed with st 2 Lobular in 2011....strongly er/pr+, her2 nodes. Every year, Every day...I feel worse and more terrified of recurrence or I have read many times that hormone positive cancers can never be cured, and can recur twenty+ years after initial diagnosis. Every day, I cry, sickened..and feel I cannot continue. I've tried therapy and antidepressants...nothing has worked...sorry to be a downer here....don't know where else to turn....ptsd for the rest of my life...

  • beach2beach
    beach2beach Member Posts: 245


    I'm just going through it, but I understand. Im still numb. I know there are no guarantees. There are tho, many, many women who never have a recurrence. They just don't post here anymore or never have to begin with. Fear will hold us hostage. I keep reminding myself of that. I don't want to face each day and only have the neg to think of so I try to do what I want, and plan to do many things. I think it is something on most womens minds once they have been dx'd and gone through treatment, some can push it back and go on and live and for others the fear takes over the day. My sis is 9yrs out of Inflammatory Breast Cancer, that was an immediate 3b I believe. She has told me she still has that fear with each ache and pain but has in the past 9years lived to see her oldest daughter get married, have 1st grandbaby, babysit etc. We will never know but I think we have to keep a thought that we will live a full life and die of something else. If we don't keep a positive thought in our head, we will continue in that vicious cycle.

    I hope you can find some peace somewhere, somehow. I'm trying to do the same. Hugs.

    Meow, Cath and Racy....great to read! We should all plan on a long, full life. Heart

  • Lily55
    Lily55 Member Posts: 1,748

    5+ years out, no chemo, stage 3 on diagnosis........

    PTSD but now over that mostly apart from how I feel about my mutilated state......i fact feeling mutilated is worse for me than the diagnosis of cáncer....

  • Theresanne
    Theresanne Member Posts: 21

    thank you beach2... you're very sweet...and smart..hugs to you too

  • Gitane
    Gitane Member Posts: 58

    This is 12 years for me, dx was 2005, stage 3a pleomorphic ILC, Oncotype 23. There were so many tumors in my breast they didn't try to count, just said "a multitude". I truly did not expect to see 2017. This is the first year I didn't post here about still being alive, I thought I would just not do it this time, but then I saw this thread. I hope all my "pleopals" from years ago are doing well, I think about you guys often! I remember we joked about getting old together. Well, I'm getting old now, and that's O.K. Hugs to all of you living the dx/treatment phase. Sending support your way. G.

  • beach2beach
    beach2beach Member Posts: 245

    Lily55...thanks for posting. It is a major loss. Any chance reconstruction being an option for you? Stay strong!

    Gitane..12 years congrats! Look forward to seeing you write one every year for the next 20/30 years! (we can make that longer too :) )

  • meow13
    meow13 Member Posts: 1,357

    Theresanne, what helps for me is that if my cancer comes back in 20 years there probably will be more effective drugs by that time. I hate all the medical exams but feel so much better each time they come back no cancer.

  • meow13
    meow13 Member Posts: 1,357

    Lilly55, are you outside the US? I think I read that you were waiting for reconstruction.

    I really relate about the mutilation and I didn't feel better until I got my DIEP. I feel good about the results.

    I had to wait 4 horrible months for my reconstruction I think you've been waiting alot longer.

  • Annette_U
    Annette_U Member Posts: 13

    have to say I do feel mutilated........ but better then dead or a stage IV. I am not as comfortable with fake boobs, hysterectomy, radiation, hot flashes and leterozole. But- real happy I am still here and loving life with my kitty, bunny, Romeo my dog, my most fabulous husband, family and friends. Diagnosed in 2013 and so far just joint pain from blockers. ......just want to add I enjoy chocolate and a good bottle of wine now more then ever!!!

  • meow13
    meow13 Member Posts: 1,357

    Annette, I really don't think about my recon as being fake just rearranged. It isn't as comfortable when lying down especially since nerves are coming back to life even 5 years later.

  • IllinoisNancy
    IllinoisNancy Member Posts: 99

    Hi A!ll,

    I'm an 11 year survivor and feeling very good. I think a positive mental attitude is the best medicine. I also take Femara and Ibrance without too many side effects. Good luck everyone....the cure will be here soon!

    Take care,


  • hlya
    hlya Member Posts: 29

    To all long survivors.

    How many years have you been treated with anit-hormone? When did you start to take off from Tamoxifen etc...

  • hlya
    hlya Member Posts: 29

    Hi, Gitane,

    I remember you. When I came here in 2009 you were here. So good to see you. Bless you

  • Dianarose
    Dianarose Member Posts: 1,951

    I will be 13 years in October. Might be stage IV now but still here and fighting.

  • hipline
    hipline Member Posts: 72

    I will be 7 years in November. I did 3 years of Tamoxifen and now am in year 4 of Femara. I will likely stay on intermittent Femara for a long time. Life is good and my side effects are manageable. Stay active, do what you love, and love!

  • momand2kids
    momand2kids Member Posts: 118


    I am coming up on 9 years out-- lumpectomy, chemo, radiation and 5 years of AI.... risk of recurrence is low--- had a slow growing tumor- and as someone said, so much has happened in the past 9 years-- treatments are different, approach is different--I don't spend any time worrying about recurrence and often times forget that I ever even had bc..... it is just not a big part of my life right now-- I don't come here that often, but when I do, I always try to offer hope to those just starting out---I feel great and fully expect to live a long and interesting life!!!

  • beach2beach
    beach2beach Member Posts: 245

    Mom, thanks for posting. Love hearing from others, extra special when its posted along with not being on often due to getting on with life. Now that's great to read!

  • toomuch
    toomuch Member Posts: 254

    beach2beach - I'm 7 years out from diagnosis and I remember searching for positive stories when I found So many of the woman I leaned on early, don't check in anymore. BC doesn't consume my thoughts like it once did but I have daily reminders that I had it. The aches from Arimidex which I still take each day and will for 10 years are there. Mostly I remember because I'm grateful every day that I'm alive and NED. There's no doubt that I've lived differently since my diagnosis. I say yes more to opportunities to travel, spend time with my family and friends and build memories. My son entered HS a few months after I was diagnosed and at that time, I was only brazen enough to hope be at his HS graduation. He's now a college senior. Like others said life goes on...

    Theresann - I hope that you won't give up trying to get help for your PTSD and depression. I too had PTSD after diagnosis. I found a great counselor who helped me through it. If one therapist didn't help, try another, use guided imagery or meditation, acupuncture or medication but don't give up!

    Gitane - It's so very nice to read your post and to know that you're still doing well. I look forward to your post each year so i hope you'll think about continuing the tradition you started 12 years ago! It's so awesome!

    Nancy - Glad to see that you're once again doing well too!

    edited for grammer

  • Rdrunner
    Rdrunner Member Posts: 67

    I am 5 years out next week. On Tamoxifen since then. Check up today was good. Staying on Tamoxifen for another 5 or switch to AI.

    I feel pretty good. Even though I was diagnosed with another cancer in 2015 (stomach carcinoid) also in remission and thankfully surgery did the job no chemo for that one. I don't feel afraid of much anymore and try to live life to the fullest.

  • mary_lynn
    mary_lynn Member Posts: 1

    4 years out --- getting easier and easier to put it in the rear-view mirror and accept new body image resulting from anastrozole effects. Every day is a new and wonderful day to experience.

  • hipline
    hipline Member Posts: 72

    I am 7 years out! Feeling good, still on Femara.

    There will be a webinar on ILC tomorrow sponsored by ABCD, where I am a mentor. It features researcher Steffi Oesterreich and clinician Rachel Jankowitz. You can ask questions at the end. Here is the link: