Long Term ILC Survivors?

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  • Gitane
    Gitane Member Posts: 1,885
    edited May 2009

    Thank you so much Horselover2,  there is nothing we ILC girls love better than to hear these survivor stories from others who have walked this road.  It gives us hope.  Love it!  Being an ER RN has to be stressful, too. (Not to mention too much information being in the medical profession and all!)   Riding your horse must be fantastic.  I have always wished I could learn to ride a horse, but it never happened.  I was a navy brat, moving every few years, usually to places with no horses.  I guess it's a little girl fantasy that never got fulfilled.  Now, at 61 years old, with all my aches due to the Femara, I guess it's too late.  I'm jealous!  If there is any way you could post a picture I'd really love seeing it.

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  • Fitzy
    Fitzy Member Posts: 136
    edited June 2009

    I'm nearly up for my 5 years, have just gone off Femara, anyone think I should keep on it? No great problems with it, just sick of taking drugs!

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  • kc5
    kc5 Member Posts: 6
    edited June 2009

    I love hearing about the long term ILC survivors!  As of 11/2009 I will be a 4 year survivor, still taking Arimidex and going strong.  Reading all these stories gives me hope - I am looking forward to being a long term survivor.  God bless us all!

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  • hlya
    hlya Member Posts: 484
    edited June 2009

    Hi, Horselover2:



    Could you share more info. about your BC? what was the stage? size and grade? if they were available 10 years ago or you could remember any?

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  • Madisonian
    Madisonian Member Posts: 1
    edited June 2009

    ILC, right breast, diagnosed and treated, December, 2002. Stage II. Primary tumor 1.8 cm, but three smaller foci of cancer found after mastectomy in proximity of that tumor. Micromets 1 mm to sentinel node, 7 nodes removed. It was classic lobular and was ER/PR +, HR2 negative.

    I'm still here in 2009 if that helps.  I'm in my 60's and my treatment was mastectomy only.  I turned down chemo after a lot of research and meant to take Tamoxifen or Arimidex. However, I couldn't get off HRT completely as my symptoms were so severe. I've managed to get that down, however, from 2 mg. Estrace to 0.25 mg Estrace each day.  Yes, you read that correctly, I'm still taking estrogen.  I don't recommend it of course, but you wanted to know about survivors and I'm surviving without further breast cancer troubles so far. 

     I found the lump -- my ILC was a lump, indeed, not a thickening -- in May of 2002.  It was very hard and not small and I knew it was cancer.  I waited until fall to go to the doctor and never got around to surgery until December 3. Before I found the lump myself, I'd had regular mammograms and had just had a thorough exam by my GYN who said I seemed fine. However, I'd had problems with cystic breasts for many years and had a benign lump removed from the same area as the cancer 12 years previous.

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  • Seabee
    Seabee Member Posts: 557
    edited June 2009

    Gitane--You're probably not too old to ride a horse. Find yourself someone who will rent you a nice, gentle, compliant mare and will take into account your physical condition. The best horse I ever rode was also one of the ugliest, but what a sweetheart she was!

    I've been doing an aquatic exercise class (in fact, two of them), and find that they are very helpful in rebuilding normal physical strength following treatment. I seem to have lost a lot of vitality just by sitting around healing and doing research on bc treatment.

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2009

    Thanks Seabee,  Maybe I'm not too old to try to make a few of those old dreams happen.  Sitting around can't be good for us.  Good advice. G.

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited March 2015

    This is a very old thread created in March 2007. It's time to bring it back and ask again:
    "Where are the Long Term ILC Survivors?"

    I strive to continuously learn about ILC and engage with researchers to learn its complexities of pathways, resistance, etc. Occasionally I'll read a research report that says conventional treatment (chemo, tamoxifen, etc) is not effective for ILC. It's alarming, frustrating and depressing. It makes me wonder if anyone beats ILC.
    So, I'm digging back into the past when this forum was created (~2006) and looking for those that have beat the odds. I'm not talking about surviving ILC 5 years. I'm looking for long term survivors of 20+ years. Where are they? Is anyone else asking this question?
    I want inspiration and hope that my wife can beat this and live many more decades.

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  • Penzance
    Penzance Member Posts: 101
    edited March 2015


    Thanks for reviving the thread John. It would be great if survivors could say whether they were pre or postmenopaused at dx. Am pre, and really worried. Appointment on Friday, hope the doc has good people skills...

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited March 2015

    Just added this my favourites because I want to know as well - thank you, Donna

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited March 2015

    i'm still kicking around ... as you can see my 'odds' weren't that good ....

    was post - meno ....

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  • kar123
    kar123 Member Posts: 273
    edited March 2015

    Thanks for posting Jenni!!!

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited March 2015

    almost 7 years out- and I fully expect to get to 30-40 years.....

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  • cathmg45
    cathmg45 Member Posts: 12
    edited April 2015

    Hi LauraGTO,

    I was diagnosed in July of 2008 with stage 2 pleomorphic ILC-so I'm coming up on 7 years...sort of long-term! I remember after diagnosis just wanting to get to two years out, then five. I wanted to see my daughter graduate from high school and my son start high school. Now, my girl has been out of college for one year, and my son is a sophomore in college.

       I had a double mastectomy, Cytoxan and Taxotere chemo, and 2.5 years of Tamoxifen before calling it quits.

    I actually forget, sometimes for days, about the cancer.

    Best wishes to you and all of us!!

    Catherine

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2015

    my mom is a survivor of ILC over 28 years without a recurrence! Had lumpectomy, ALND, radiation, and 5 years of tamoxifen; has also had colon cancer twice and still going strong at 86 !

    anne

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    Just had my cancerversary on 4/4 ....finished 7 years and starting year 8!

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited April 2015

    That is so fantastic!!  I'm so happy for you and wish you a wonderful number 8.  You are an amazing woman and I value your friendship.

    Take care,

    Nancy

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  • kareenie
    kareenie Member Posts: 339
    edited April 2015

    How about 20 years with a year off for a recurrence after 15? I am now 5 years out from the local/regional recurrence and NED so far as we know. Edited: Premenopausal at diagnosis (39)

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    Nancy, thank you so much. And wow, Kareenie, 20 years!! Did you have a local recurrence or ???

    I just noticed my own tag line and my cancerversary was yesterday, 4/7 not 4/4. Seeeeee!! There is hope for forgetting about this stupid disease. Maybe soon, I will forget which boob I got it in

    Honestly, I remember it was a Thursday but not sure what date that was...maybe I can google it, LOL.

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  • kareenie
    kareenie Member Posts: 339
    edited April 2015

    Yes local/regional recurrence in pec muscle in axilla.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2015

    I am so sorry about the recurrence, Kareenie. How did they treat the pec recurrence? Mine was pretty close to the chest wall and I always worry they will find something more. How did you get Dx?



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  • kareenie
    kareenie Member Posts: 339
    edited April 2015

    Found a lump under arm, back side of muscle. Neo adjuvant chemo, wide local excision then rads.

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  • sunny92110
    sunny92110 Member Posts: 3
    edited April 2015

    So nice to hear that you are doing so well. After my bilateral mascetomy on 3/26 I am stage 2a, ILC, with pleomorphic with signet ringfeatures. I am waiting for the results of the onkodx test and unless it is an 11 or below I will need chemo. Glad to hear about the survivors.

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