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ILC stage 3 and 10 year survival

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gracejoy
gracejoy Member Posts: 26

I am wondering anyone with ILC stage 3 diagnosis and made it to 10 year without any recurrence.

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  • meow13
    meow13 Member Posts: 1,363
    edited April 2016
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    oh yes they will soon respond. Lilly55 is on her way.

  • Robyn_S
    Robyn_S Member Posts: 25
    edited April 2016
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    Hello Gracejoy , I have just passed 5 years out from a stage 3a dx and am feeling fantastic.I have full confidence that I will see 10 years and am making plans for a lazy retirement traveling the world! 😎 Be brave and don't forget to live now !! ((Hugs))


  • Lily55
    Lily55 Member Posts: 1,748
    edited April 2016
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    Not even half way there yet!  Four years from stage 3, diagnosis (and no chemo, as I refused it)

  • taag4
    taag4 Member Posts: 93
    edited April 2016
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    Hi there, I had ILC stage 3 in my right breast in 2014. I am now talking to a PS to see about getting diep flap surgery (he said maybe may june) What Ilm wondering is with anyones ILC did you have both breasts removed as a precaution when you had your mastectomy. I see my oncologist next week and I am so looking forward to it. I think I am feeling a lump in my left breast now. Probably just my mind playing tricks on me but Im wondering if this will always be in the back of my mind. Maybe I should be having the other breast off, then there won't be the what if. When I saw your question of a 10 year survival rate it sort of threw me off. I never ever thought I would not be around for another 10/20 years. But the more I read in the forums I have come to realize just how serious my cancer was. My cancer was 9 cm and lymph nodes were involved. Hope to see lots of people saying they have met there 10 year anniversary .

    Tracey

  • KSil
    KSil Member Posts: 7
    edited April 2016
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    GraceJoy,

    I am three years out from a stage 3 diagnoses. My tumor was just under 6 cm and I had 4 nodes packed with cancer. Also lympvascular invasion and perineural invasion (which was cancer that spread to the nerve vessels). I have some aches and pains, but overall I am healthy and I feel great for the most part.

    There are many of us that just don't post all that much since we have moved on beyond treatment. I go for my MO visit every 6-months and a radiation oncology visit yearly. I read everyday, but I need to remind myself how important it is to post, to provide hope to those newly diagnosed. I feel like I know many of the ladies on this board personally, even though I don't write much.

    Love and Hugs to All ~

    Karen

  • mbasford0
    mbasford0 Member Posts: 3
    edited April 2016
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    hi I am 3 years clear and I did have both breasts removed as I had read lobular cancer has a slight chance of spreading to the unaffected breast. My cancer was also huge and high grade 2with 1 lymph node infected out of 26, I've had my ovaries removed as it was 8/8 oestrogen driven and am now taking femara as I read this is more effective for lobular cancer than tamoxifen. Good luck with your journey and stay positive you will get to 10 years

  • claireinaz
    claireinaz Member Posts: 691
    edited April 2016
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    Hi Gracejoy, I would venture to say many, many women have survived stage 3 and 10 years or more. You may not get a lot of responses from those ladies only because they have moved on with their lives, bc in their rear view mirrors (although they may glance back from time to time) and never visit these boards!

    taag4, I had a bi-lateral exactly for the reason you posted--has a tendency to be bi-focal. I was vindicated when, after my surgery and my surgeon reviewed the pathology with me, which reported that I had mild hyperplasia in the "good" breast, which could have gone bad in the future. Although I know that it's physically impossible to remove every single cell, I feel relieved that I did everything I could to protect myself from bc. Vainly I also wanted both breasts to match in the reconstruction process, so removing both was better for that. Downside was the loss of sensation, which was saddening since I'm married and sexual.

    Oh well.

    Claire

  • lucca06
    lucca06 Member Posts: 17
    edited April 2016
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    Gracejoy, just passed my 5 year mark and am in a really great place. Happy, healthy and most definitely planning on hitting the 10! 12cm area of tumour and DCIS/LCIS, 9/18 nodes positive after chemo etc. Focus on all the things you want to do in the future and you will get there.

  • taag4
    taag4 Member Posts: 93
    edited April 2016
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    Very encouraging and glad to hear Lucca06 and claireinaz. Looking forward to seeing my oncologist tuesday and moving on from this nagging feeling in the back of my mind. Having a diep flap done May or June I was told, so looking forward to getting back to my new normal.

  • jenni__ca
    jenni__ca Member Posts: 77
    edited April 2016
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    yep it can be done - i made it !!!

  • MFalabella
    MFalabella Member Posts: 105
    edited April 2016
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    Congrats, I havent started treatment yet, and hope to be there with you someday

  • taag4
    taag4 Member Posts: 93
    edited April 2016
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    Hang in there MFalabella, treatment isn't easy but its very doable. I think its the not knowing what to expect thats the worst. Even though the Dr's are so good at explaining everything its just really hard to imagine how you are going to feel. It was a long year of treatment but it went by fast, and everyday got a little easier.

  • Momine
    Momine Member Posts: 2,845
    edited April 2016
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    taag4, I insisted on bilateral mastectomy. ILC is sneaky and can evade detection, even with vigilant surveillance. Also, I have major needle and mammo phobia. When they told me I would have imaging on the "good" breast every 3 months, and "if we see something, we can just biopsy," I knew this would seriously mess with my QOL. Further, I was very dubious about reconstruction (I have not, so far, had any) and figured that managing the whole thing would, for me anyway, be easier if I just didn't have boobs at all. Lastly, I had a gut feeling that lefty was also bad news, even though nothing showed on any of the extensive imaging (U/S, mammo, CT and MRI).

    For me, it worked out. The path showed that lefty was, indeed, bad news and already had LCIS and a bunch of precancerous crap. So, good riddance, as far as I am concerned. Being boobless is obviously weird, but I like being able to wear small foobs, big foobs or no foobs at all as the mood strikes me. Finally, it is much easier to check the chest wall with no reconstruction in the way.

    However, I realize that I may be a bit of a weirdo and that this choice would not work for everyone.

  • taag4
    taag4 Member Posts: 93
    edited April 2016
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    Momine thanks for the reply. I just went to see my oncologist and surgeon the following day. I asked about an area I'm not sure about (feels a little different) I had a memo in Feb and it was fine, but it was also fine when I had ILC so I really didn't put any weight in that. So they are going to do a MRI to get a better look. Im on the waiting list for deip flap reconstruction maybe may or june, so I need these results asap. As you said ILC can and does evade detection as in my case, so still have the feeling like I should just do away with my other breast, even though the plastic surgeon, surgeon, oncologist and radiologist all are telling me there is no need. So many decisions I also sometimes think it might be better to be boobless. Funny you brought up the point about small, big or no boob. I was just going over that in my head as Im thinking of pro's and con's. Wishing you good health.

  • jpsgirl96
    jpsgirl96 Member Posts: 25
    edited June 2016
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    10 years out from bilateral bc - DCIS with micro-invasion on the left, ILC with 6/16 nodes on the right. Lumpectomies, TACx6, 33 bilateral radiation, 6 months on Tamoxifen, 9 years Femara. Annual well baby check w my beloved oncologist on Thursday - last of the Femara this coming October. Doing well; turned 50 during radiation, will be 60 in August. Sending good thoughts - this is a great place for support and information and inspiration.

  • Smurfette26
    Smurfette26 Member Posts: 269
    edited June 2016
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    Glad you have done so well jpsgirl96. ThumbsUp

  • hmh23
    hmh23 Member Posts: 50
    edited July 2016
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    My name is Heather Hillier, 6+ year survivor and I am the Advocate Co-Chair for the 1st International ILC Symposium.

    Like so many ILC survivors, my diagnosis came late and I was Stage 3A at diagnosis. I am so excited to be participating in the 1st International ILC Symposium as Patient Advocate Co-Chair. We have amazing researchers in Pittsburgh who are committed to answering your questions and concerns you have raised in this discussion board.

    The goal of this gathering of 32 of the world's leading ILC researchers is to gain a better understanding and improving care for thousands of women with ILC is of high significance. We hope to gain a greater appreciation for the characteristics of patients, unique tumors, and treatment response for ILC and an expanded knowledge of options for patients with ILC, such as patient selection for neoadjuvant versus adjuvant, breast conserving surgery, etc.

    This symposium will form the foundation for a vibrant, collaborative community of scientists that will lead research in ILC, ultimately resulting in improved outcomes for patients with this disease.

    We are also focusing on ILC Advocates with a special breakout session for advocates only on Thursday afternoon to discuss many of the topics you have addressed here. We will also have an open Q&A that evening with Researchers, Clinicians and Advocates. On Friday morning we will present our findings from the Advocates to all attendees.

    Additionally, I am compiling a booklet of ILC survivors and their respective stories to provide to each of the clinicians and researchers. So many of our stories are the same yet are experiences, side effects and treatments are different. We hope that this will help personalize this disease for those in attendance. Over the next few days, I will post a brief Q&A for anyone and everyone with ILC to complete. I am also hoping to secure a photo of each participant with their respective story.

    Finally, we will be offering 6 - $500 scholarships to advocates who will be traveling to the symposium. Details to come. This is a 1st time opportunity to have our voices heard by the best ILC researchers in the world.

    Below is the registration page for all interested.

    https://ccehs.upmc.com/registrantCategories.jsf

    Please don't hesitate to reach out to me with any and all questions. Thank you, in advance for your time and I hope to hear from you soon.

    Sincerely, Heather Hillier

  • Carolehebert
    Carolehebert Member Posts: 3
    edited June 2017
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    You made me feel so good right now :))

  • Momine
    Momine Member Posts: 2,845
    edited June 2017
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    taag, yes the docs will insist that BMX is overkill, and going strictly by statistics, they are right. Also, in many cases, it WILL be overkill and it is a fairly major step to take, so I am in no way saying it is the way to go. For me, it was the right choice, however.

    As for MRIs and all the rest, I am not convinced of the efficacy when it comes to ILC. The breast we thought was being removed prophylactically, because the patient had decided to be hysterical about the whole thing ;), had been mammoed, MRIed and ultra-sounded (at least 3 times) prior to surgery. All they could see were 2-3 micro-calcifications that they all insisted were sure to be completely benign. Wrong! My surgeon said afterwards that had I not had it removed, I would have been back in treatment within a year.

  • claireinaz
    claireinaz Member Posts: 691
    edited June 2017
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    No one can tell you for sure what to do (BMX or not, UMX or not) but what pushed me over the edge was the knowledge that ILC can often be multi-focal, and I didn't trust the 5 years of "clear" (false negative) mammos that I had before my dx. I just didn't want to have to worry that something else wouldn't be caught. I also had 2 breast MRIs during the time between tx and surgery that didn't expose the dysplasia I had in the "good" breast (see my previous post).

  • gracejoy
    gracejoy Member Posts: 26
    edited June 2017
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    Impact of the 21-gene recurrence score on outcome in patients with invasive lobular carcinoma of the breast.

    Kizy S1, Huang JL1, Marmor S1, Tuttle TM1, Hui JYC2.


    This above article is very encouraging for ILC patients as it indicates that 5 year survival is 99% for low and intermediate and 96% for high scored patients, based on 21 gene test done on about 7000 patients (which is a study on a large number of ILC patients, stages I to III).

    Knowing this information, (ILC patients) we should all live our lives as if we don't have BC and be happy.


  • Optimist52
    Optimist52 Member Posts: 144
    edited June 2017
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    Gracejoy, this certainly sounds very encouraging though the figures seem a little too high compared with other studies. However it's great to see this.

  • nkb
    nkb Member Posts: 1,561
    edited August 2017
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    Mammograms and Ultrasounds never showed any breast cancer for me, even with a large palpable mass-surgeons and radiologists thought it was a cyst. Luckily I had a biopsy anyway and it was at first read at IDC and then changed to ILC. I then had bilateral breast MRI with contrast and all the masses did not even show up. Long story short- I had extensive ILC in both breasts and multiple positive nodes. ILC IIIC in both breasts. It's a sneaky cancer.

    I did make it about 5 years before extensive bone and bone marrow mets.

  • hlya
    hlya Member Posts: 29
    edited September 2017
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    So encouraging! Thanks for the pos

  • janila03
    janila03 Member Posts: 8
    edited February 2018
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    Hi everyone,

    This thread is encouraging indeed. I have never come across anything as unpredictable as breast cancer. I'm 9 days post op (feeling great by the way) was told after surgery that there was no node involvement. Went for my check-up yesterday to get my drains removed and learned I have ITC in 2/nodes, one node having only has 1 cell, 1!!!. This was very discouraging as I was told after surgery that my nodes were A-ok. Now I have another 3 weeks of waiting for results. Chemo scares me more than losing my breasts did.

  • moderators
    moderators Posts: 8,281
    edited February 2018
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    Hi Janila03-

    We want to welcome you to BCO! You're so very right, this is one unpredictable journey. We certainly understand your fears about chemo, but it may help to spend some time reading through our chemo forum to gain some perspective about how other members have dealt with this stage of their treatment: https://community.breastcancer.org/forum/69

    We hope the next three weeks fly by, and you get the answers you need to move forward with whatever comes next for you. Please keep us posted!

    The Mods

  • lpk29
    lpk29 Member Posts: 1
    edited February 2018
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    I also had a BMX, my choice and the path came back LCIS in the non cancer boob. Of course none of this was picked up on mammo, US or MRI. I’m very glad I did it!!

  • mmbNaplesFL
    mmbNaplesFL Member Posts: 8
    edited April 2018
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    I'm just going to jump in with my thoughts as I am less than one year from BMX, radiation. I had the chemo before surgery. My radiation notes don't show up on my profile for some reason.

    I'm wondering if the recurrence has more to do with nodes than Stage. I had ALL Nodes on th right side removed as I had 6/7 affected. my surgeon told me that recurrence is lower for stage III of ILC than IDC. I think that somewhere someone should be keeping a giant log (as in excel sheet) with all the stats to then tell us what is really going on in the BC world.

  • Momine
    Momine Member Posts: 2,845
    edited April 2018
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    lpk29, exactly the same for me. I had to switch surgeons to get a BMX, first guy refused. I am glad I did.

  • gracejoy
    gracejoy Member Posts: 26
    edited April 2018
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    1. Hı MmbNaplesF
    2. My MO says for reccurance it is not size of tumor (which includes staging and node involvement )that is important but it is the Biology of the tumour that determines the reccurance. He says those statistics are way too old. It no longer counts. I can see that your grade ıs 1 whıch ıs low. It shows that your tumour ıs not aggressive kınd. ILC ıs generally low grade as compare to IDC therefore reccurance will be lower.You have done everytıng you can just relax now and let go. Best