how likely a recurrence of ILC is with one +ve node?

Torridon
Torridon Member Posts: 89
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi folks. Hope you are all bearing up ok. 

I was wondering if you could help me out. I am finished all active treatment and now on tamoxifen. I am due to go back to work soon. I have my next appt with my onc soon. so far, they have just said there are no guarantees but based on their experience i "should" be ok. I know there are no guarantees. I am obsessed about the fact one of my nodes came back +ve ( 1cm of cancer in a 2cm node). I always thought if it was in your nodes then that's it. when i see posts such as " thank goodness my nodes were clear" i could just cry in despair. I also worry about the size of my cancer ( 3 tumors- largest 3.1cm). i really just want someone to tell me it will be ok but of course noone could do that. I also ( rather uncharacteristially) went to a fortune teller who correctly identified I had had breast cancer and it as trying to attack my modes ( yes, I was FREAKED out). She then went on to say i would live a long life ( nice to know). However, a load of rubbish then followed so I take all that with a pich of salt now. I am so lost x 

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  • Gitane
    Gitane Member Posts: 1,885
    edited November 2012

    Oh, how I recognize my own thoughts in your post.  I searched and searched for the unknowable.  How likely is it?  Nobody knows, and that is the honest truth.  Nobody.  It's really hard to accept that answer; at least it was hard for me.  I went to the pathologist to ask him, because I knew he would give me an answer that was honest (maybe even pessimistic) and that he really was experienced and knew better than anyone.  He told me that I had at least a 50% chance of dying of something else, probably a lot better chance than that based on my statistics, but how much better it is impossible to say.  Oncologists and surgeons were all over the place with their numbers, as were the stats on the internet.  Anyway,  good luck in your search for THE answer.  I have finally stopped searching.  Finally.  At least I think I have.  In my logical brain I know the answer doesn't matter because it is what it is.  Big hugs and tons of compassion, Torridon, because I so understand your question.  G.

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  • toomuch
    toomuch Member Posts: 901
    edited November 2012

    Torridon-I also scoured the net for every possible article about ILC. I used every online calculator available to predict recurrance and freaked myself out over and over again. My sentinal node was 2 cm with ECE and I had another 1 cm node. I think that one had ECE too. It's kind of nice that 2 years out, I can't remember that detail. Maybe that means that I'm finally moving on. My MO has said repeatedly that the stats don't matter because for each individual the risk of recurrance is 0 or 100% depending on whether or not it occurs.  I've changed  my diet, try to exercise everyday and hope for the best! I hope you get  to this place soon too! Best wishes.

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  • Torridon
    Torridon Member Posts: 89
    edited November 2012

    thanks. Before my cancer diagnosis I would never, ever have gone to a fortune teller. Since treatment finished,  I have tried to get on with my life, exercise, can laugh now and yes even not think about cancer for an hour!. However,  I think the fact i went to a fortune teller  reveals much about my state of mind and just how profoundly this has affected and changed me- as it does all of us. 

    all the christmas stuff in in the shops now. finding that hard. reminds me much of this time last year when i was merrily walking about with no idea about what was going to hit me. 

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  • Momine
    Momine Member Posts: 7,859
    edited November 2012

    Torridon, I had the lovely surprise after my BMX that I had 7 nodes with cancer. The docs had thought I might have one. I freaked out for a couple of days, and it still freaks me once in a while.

    The bottom line is that no man knows the hour, and you are doing the best thing you can do, i.e. try to live a good life.

    I am almost a year past my last chemo and each day it gets a little easier.

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  • Racy
    Racy Member Posts: 2,651
    edited November 2012

    Torridon, I think much like you and the other ladies here. Ultimately, all we can do is follow our doctors' advice, hope for the best and make the most of the time we have.



    Wishing us all well.

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  • Crescent5
    Crescent5 Member Posts: 442
    edited November 2012

    Torridon, my BS is a real shoot straight kind of Dr. I really love her for this. She'll tell you if your in the crapper. She'll tell you if you're not. She told me upfront that ILC tends to have a better outcome than IDC.

    I've also learned that ILC tumors tend to be found when they're big because they're so damn hard to find at all (mine were found during surgery. MRI & mammo missed them). So IMO (and I'm not a medical person, just someone who got a bit obsessed), a 3 cm ILC tumor is not equal to a 3 cm IDC tumor.

    I was also told not to freak that there was more than one tumor because ILC tends to grow like that (I'm just accepting that).

    I have found oncologists to be a bit depressing, so be forewarned. They start throwing out numbers and kinda forget that it's really freaking scary for us. Many of those stats are based on outcomes 10 years ago when treatments weren't as good.

    Did you have the tumor(s) tested via Oncotype DX? For me, that gave me the best picture of what I was dealing with.

    Best of luck to you.

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  • itsjustme10
    itsjustme10 Member Posts: 796
    edited November 2012

    When people tell you that there is no answer, it's the truth.  There's no rhyme or reason as to who progresses and who doesn't.  No way to tell who recurs and who doesn't.

    The only thing we do know is that ILC has been shown less likely to metastasize, but more likely to recur on the other side, than IDC.  Other than that? Not a clue.  It's a complete crapshoot - and your personal odds are truly 50/50.  Either it will or it won't.  And when you read about how some people are so careful and it does, while others are doing what they want, and it doesn't, you realize it's true..flip a coin. 1 node, 0 nodes, 10 nodes.  There's no accurate answer.

    Live your life, be happy, and hope for the best.  That's what I chose to do.  It can only win if you let it take "you" from you. Good luck. :)

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  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2012

    My sister has ILC. She had a MX and the drs wanted her to have a double. She said no. Her ONC agreed. She is on Arimidex and didnt have any treatment - no chemo and no rads. She had the oncotype test done but wouldnt say what her score was but that it was borderline. Understand she is very close to the vest. I am the polar opposite. I had IDC Stage 2, Grade 1. A micromet was found in the SN. I freaked. BS said he thought that would get me chemo. It didnt. Onc ordered the oncotype test. Score came back 11 with the tumor deemed to be non aggressive and smaller than first thought. Bottom line though is we just dont know why it some women have recurrences and others do not however the Oncotype test has become a major breakthrough in determinations about your particular tumor. Once the results came in for my tumor I had Rads treatments. Had I not had the Oncotype test it would probably have been chemo. I try not to freak out too when i hear about bc coming back like the NFL player whose wife's came back 5 times and the 5th time it cost her her life. I am a person who needs to be in control so this beast has really rocked my world because I cant control what it does or doesnt do. All we can do is put our lives in God's hands where it has been all along and try and live your life the best you can. Diane

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  • overjoyed4life
    overjoyed4life Member Posts: 239
    edited November 2012

    Let me try to bring you some relief. I was Dx, 6/5/2010, ILC, 6cm, Stage IIIc, Grade 1, 22/29 nodes positive, margins not clear, ER+/PR+, HER2-. Right mastectomy, Jan. 2011. Ended radiation treatments, Mar. of 2011.   Just about all of the worse case scenario. I am just on Aromasin daily and Zometa every three months now. Yes my Doctors told me my MAJOR dilemma straightforward. In the beginning I was just like you, scared to death. If you would read some of my past postings you would see the panic in my writings. As time has passed it has gotten a lot easier to deal with. If you look at any of those stupid statistics, I should have bite the dust a long time ago but instead, I HAVE NOT had a recurrence or mets. DON'T LET THIS DEFINE YOU, DEFINE YOURSELF AND LIVE YOUR LIFE!!!!!! Feel free to PM me any time for uplifting thoughts.

    Hugs and Blessings

    Sharon

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  • karen1956
    karen1956 Member Posts: 6,503
    edited November 2012

    Torridon.....There are no guarantees....but there are many long term ILC survivors out there....I was Dx in 2006 and I had 8+ nodes and my breast was full of cancer...at least 3 tumors....I've been done Tx for 6 years and thankfully I con't to be NED...For me, I ignore the statistics that my onc gave me.....too scarey to live with those...but to me the statistics are 100%....either it will come back or it won't....(kind of like being pregnant..either you are or your aren't)!!!!  I try to live my life to the fullest....to do things that I want to do.....we don't know what life holds for us, but then again we didn't before BC...It does get easier with time......

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    No one knows what the recurrence rate can be. It's impossible to take into consideration your own unique physiology, the environment you live in, what you eat, how you exercise, what your stress level is, what your weight is, etc. etc.  Simply impossible.

    I was ILC clear but close margins with 6/11 pos nodes.  Stage 2, grade 1.  Only one tumor. I consider myself lucky, but I'm getting these time bombs removed from my chest as soon as my PS says that my skin is recovered enough from the 33 rad tx. I had nearly 5 months of chemo, too.  And five clear yearly mammos before I found this on my own. Thank god I have a flat chest, I wouldn't have found my lump otherwise.

    I don't think about pos nodes much anymore.  They were there, now they aren't.  Who knows what will happen?  I'm trying simply to be fully present in my life.

    Hugs,

    Claire in AZ

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  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited November 2012

    Hi All ITS JUST ME-

    hi Its just me- my question is- you state in your post that ILC is less likely to metastize. Would you explain this to me?

    thanks so much,

    CR

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