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ILC Long Term Survivors

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Comments

  • KathyNSW
    KathyNSW Member Posts: 16
    edited January 2021

    Hi Astrid and all,

    I was 44 when diagnosed and yes Astrid 9 years is awesome and everyone who survived this horrid disease

    We are amazing, and we have to be positive don’t we.

    Take care everyone

    Kathy xx


  • karen1956
    karen1956 Member Posts: 4,622
    edited February 2021

    Yesterday, I joined the 15 year club!!!! 15 years of living, of birthdays, wedding anniversaries, watching my kids grow up. One Bat Mitzvah, 2 high school graduations, 2 university graduations, 1wedding, 3 young adults leave the nests. All of the other life cycle events. All things I am grateful for. Life always is full of challenges, but life if GOOD! Here's to the next 15 years.

  • Numb
    Numb Member Posts: 307
    edited February 2021

    Thanks for posting Karen, love to hear about long term survivors. I have just had a mammogram and awaiting results. I will be 5 years if I get the all clear. Heres hoping. It is nice to think I could get 15 years, just like you.

  • kmom57
    kmom57 Member Posts: 180
    edited February 2021

    So awesome to hear. Happy for you. And thanks for coming back to encourage the rest of us.

  • Robyn_S
    Robyn_S Member Posts: 25
    edited February 2021

    it is so inspiring to read of others journeys. When I was first diagnosed, I found it so reassuring to read of long term survivors and now it is 10 years on for me and that is something I will never take for granted!

    The prognosis seemed so grim back then..large multifocal tumours and nodal involvement... but no match for modern medicine!! I watch my health...exercise good diet and expect another 10 years to come ...we all have too much living to do!!

    Take care & peace

    Robyn


  • kmom57
    kmom57 Member Posts: 180
    edited February 2021

    Robyn_S, thank you so much for coming back and encouraging those of us in the earlier days of this diagnosis. It always gives me a shot of hope to hear from people like you. Wishing you the best of everything for the next ten.

  • lovelau
    lovelau Member Posts: 42
    edited February 2021

    Hi,

    I just finished 4 years. Still working on controlling anxiety. Can you give good ideas on how to do that. I tried lot of things including medication. I had BMX with no reconstruction. Get anxiety all the time. I tried everything. Today when I went for my walk I met a lady who I had walked with and she told me she had same diagnosis. She was so composed and I realized I was not. I want to accept the dx. and move on with my life but keep staying in depression land. I dont like it there. I do go swim and walk and cook but its just not enough to give me a life. Everything I do is a challenge. Like that lady, she was so.calm and relaxed why can't I be like that? Can any of you give me good tips? I'm going swimming cause it calms me down when I'm in the water but other than that I don't feel too great. I appreciate that most here are happy and have conquered their fears if they had them. I want to do that too. Help me figure out what I'm doing wrong.

    Thanks

    Kathy

  • BCat40
    BCat40 Member Posts: 121
    edited February 2021

    Kathy I recommend trying to find a good psychotherapist, especially one uses the cognitive behavior therapy technique. Also talk to a psychiatrist to see if meds might help you.

  • Coffeeholic
    Coffeeholic Member Posts: 4
    edited February 2021

    Kathy,

    I'm 6 years out and I have to admit I had anxiety and depression before cancer, so it didn't just go away after my diagnosis. It's been a real struggle for me not just with cancer, but also with after effects of reconstruction. I had breast implant illness and didn't know it. I explanted in 2019, now am dealing with constant monitoring due to fat necrosis. I have lost my trust with my doctors. So that's hard to deal with.

    I agree that a GOOD psychologist can help, but it's hard to find someone who understands our issues as survivors. I really think that the medical establishment should do more to help survivors. We aren't "done" being patients when our cancer goes away. It's really a missed opportunity, but I know that it's an issue with getting insurance companies to pay. If there's an issue to protest, that certainly is one. But definelty talk to your oncologist if you still see one. Some clinics have supportive services that may be covered by insurance.

    Recovery is different for everyone. Medications don't work for me either. I can say that staying busy with things you love, doing hobbies and staying physically active helps. Early on I joined an online support group to connect with other survivors helped me a lot. There are some great organizations out there. Gilda's Club (renamed Cancer Support Community) if available in your area, offers some amazing programs, although COVID put a stop to in-person classes. Meditation, yoga is awesome. Now that I have retired, I rediscovered a love of reading. There's no easy answer. It may be a combination of things you do to feel better. Talk therapy is one that I recommend and it can't hurt, that's for sure! I hope you find your peace. Please check back with us and let us know how you're doing.

    ~M

  • matic22
    matic22 Member Posts: 1
    edited March 2021

    Hi dear ILC ladies:

    Just wanted to let you know that my Mum is now a 17-year ILC survivor. Diagnosed with stage 2 classical ILC back in February 2004 and had radical mastectomy, adjuvant chemotherapy for a T2N1 disease, with a low mitotic count and a very low Ki67. Oncotype 16, mamaprint low risk disease. Has been on endocrine therapy since then and doing very well. Try to be as active as possible (physically!) and stay positive:)


    Kindest regards to all.


    :)

  • lillyishere
    lillyishere Member Posts: 786
    edited March 2021

    Thank you for giving us hope Matic22. I wish your Mom many happy years to come.

    Regards from snowy Northeast of USA.

  • wallycat
    wallycat Member Posts: 1,421
    edited April 2021

    Matic, how lovely to see you posting!!!! You were such an inspiration and fount of knowledge when I first joined here. Wednesday was my 14 year cancerversary, starting 15....and hopeful.

    So happy to hear your mother is doing so well!! I hope your career is going well and we so appreciate your posts here!!!


  • dutchiegirl
    dutchiegirl Member Posts: 83
    edited April 2021

    Hi all! My mom is a 22+ year survivor of ILC. She was stage 3c and had a 7 cm tumour. She also had 13 positive lymph nodes. She has never had a reoccurrence or metastasis. (She did have a bilateral mastectomy)

    I remember having a convo with her while she was going through treatment. I asked if she had 10 years and she said “probably not”. She said she’d be lucky to survive 5 years. And here she is! You just never know how your body will respond to treatment. Keep the faith

  • kmom57
    kmom57 Member Posts: 180
    edited April 2021

    DutchieGirl thank you for that post. I needed to hear that today.

  • vanessa99
    vanessa99 Member Posts: 15
    edited May 2021

    Matic, So nice to hear from you, and so happy to hear your Mom continues to do well. I am coming up on my 12 year anniversary of diagnosis with ILC. So far so good. :)

    DutchieGirl, thank you for sharing such good news.

  • lillyishere
    lillyishere Member Posts: 786
    edited May 2021

    Thank you so much for sharing your stories and giving us hope. Vanessa99, are you still on letrozole?

  • MyaC
    MyaC Member Posts: 1
    edited May 2021

    Thanks Antonia...it’s great to see another ILC Triple + surviving so long...I’m only 15 months from Surgery so can’t wait to even say 5 years

  • Too-Ticky
    Too-Ticky Member Posts: 19
    edited May 2021

    So inspiring reading these posts. I'm newly diagnosed and seeing you all comment is really giving me hope for my own future too. Thank you all, for taking the time to post here.

    Hug

  • lcahl
    lcahl Member Posts: 1
    edited June 2021

    18 years May 8, 2021

    Have had no recurrences and see my doctor every 6 months for blood work and a CT scan every year. DMX with reconstruction; Diagnosed on May 8, 2003 at the age of 47.

  • moderators
    moderators Posts: 8,637
    edited June 2021

    lcahl, thanks for sharing! Very inspiring.

  • Momine
    Momine Member Posts: 2,845
    edited June 2021

    Making a rare check-in to report that I am now 10 years out from a stage 3B DX and still here, and as far as I know cancer-free.

  • Coffeeholic
    Coffeeholic Member Posts: 4
    edited June 2021

    Congratulations Momine! I'm looking forward to hitting that mark, too. I'm currently 8 years out.

    Curious to know if you are you still on AI's? You must be doing something right. Keep it up!

  • gerrib
    gerrib Member Posts: 60
    edited July 2021

    I am 5 years out pleomorphic ILC and 9 years out IDC. The diagnosis of pleomorphic was scary, but I'm still here to tell the tale!

  • Momine
    Momine Member Posts: 2,845
    edited July 2021

    Coffeholic, I think it is mostly dumb luck. But yes, I am still on femara, although coming close to ten years so will have to evaluate soonish.

    I do work out fairly religiously and stick to a sort of Mediterranean diet for the most part, with veggies, whole grains, fish etc. This also means that I have been at a low BMI since my treatment, and that may help a little. But who really knows? Other than that, I treat this time post-DX as bonus time. Squeeze it for all it is worth.

  • warrior50
    warrior50 Member Posts: 34
    edited August 2021

    I'm just checking in because in a few days I will be 8 years from DX.

  • skv0123
    skv0123 Member Posts: 9
    edited August 2021

    so great to read all of these. I’m 2 years out & doing well but have days where I am more anxious than others


  • beth1965
    beth1965 Member Posts: 203
    edited August 2021

    9 years strong

    Started with lots but still kicken

  • jkl2017
    jkl2017 Member Posts: 279
    edited August 2021

    Congratulations, Beth! You and the other long-term ILC survivors give us hope and we thank you for that. May your next nine years be even better

  • beth1965
    beth1965 Member Posts: 203
    edited August 2021

    Thank you JKL2017 I found it so helpful to read about others that were living long lives truly gave me so much hope

    and yes my nest 9 will be amazing !!!

  • anemome2
    anemome2 Member Posts: 2
    edited October 2021

    Verzenio for high risk ILC.- is anyone taking it?

    I’m a new poster so not sure I’m posting in the right forum.

    The CD K 4/6 inhibitor Verzenio was just approved for use in in high risk breast cancer patients to prevent recurrence.

    My oncologist is reluctant to prescribe because I am 6 years post mastectomy. Apparently the clinical trial was conducted as an adjuvant for those with more recent surgeries.

    I am high risk and eager to take it . Is any one here with early stage high risk bc taking Verzenio?

    If so , did you need any testing to qualify- Breast Cancer Index, Circulating Tumor cells ? And did you just recently have surgery?


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