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Whats your ILC story?

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  • beth1965
    beth1965 Member Posts: 203
    edited January 2012

    Thanks so much for the welcomes and hello's and kind words of encouragement.

    justlaura-you are definately right when you say the beginning is a nightmare. There is so much to take in. I am not even sure how to find out what stage i am or what all the terms written in the forums are. Like i see alot of ER+ PR HER2 under peoples names like yours what do they stand for. You are soooo pretty that is a beautiful picture

    Gitane -love your kitty avatar!  I found it a releif actually to see that having a large tumor was not so unusual with ILC after seeing so many stories and profiles it seems to be quite normal. I am glad to hear that it responds to treatment well

    mary625-i have been told by my doctor /sugeon i will need chemo after surgery. I will definately mention neoadjuvant chemo i have never heard of it but i also have not heard of many things talked about on here as i said previously. What is MX is that mysectomy? that is what i will be having too. I keep thinking this must have grown fast like you are saying it is hard to believe it grew slow when it is so big. I had pain with mine too. Everyone keeps saying to me that cancer is said not to hurt and i keep telling them that mine does so now i know that others hurt too i feel better.

    Take Care to all of you-Beth

  • JustLaura
    JustLaura Member Posts: 213
    edited January 2012

    Beth - Most of that information in the signature lines comes from your full pathology report and sometimes you don't have all of that information right away.

    ER is Estrogen Receptor and PR is Progesterone Receptor if these are positive it means that the cancer 'feeds' off estrogen or progesterone. So you don't want those hormones in your body any longer. Her2+ is another receptor indicative of cancer. The combination (plus or minus) of these 3 indicators help your doctor determine how to treat your cancer. These 3 factors as well as the size of your tumor, the type of cancer (ILC in our cases), and node involvement will help the doctor determine if you need chemo, radiation, surgery, hormone therapy, etc.

    If all of these factors indicate no chemotherapy then there is a test called the Oncotype that determines the aggressiveness of your tumor. This could indicate that you need chemo also.

    My doctor was not able to tell me my stage (which is ALL I wanted to know at first) until after my BMX (Double Mastectomy). She needed to know if my nodes were involved or not.

    I think that this link explains this a whole lot better than I can.

    http://www.cancercenter.com/breast-cancer/breast-cancer-staging

    You have only been diagnosed for 24 hours now. It doesn't seem that long ago for me and I remember exactly what you feel like (in fact I'll probably never forget it). Hang in there. Things do start to make sense. The hardest part I thought was finding my way through the doctors as they do this all of the time but this is your only diagnosis and you don't know what to do. I was told to go to the breast surgeon first - but I felt like I wanted to see my oncologist. But I was told I wouldn't go there until a few weeks after my BMX. I didn't like that - I wanted to learn more about what I had so I made an appt with my MO (medical Oncologist) anyway.  You need to do what is right for you. Remember that. To the doctors you are just another patient but to you this is everything. Make sure you get the treatment you want and that you deserve.

    Are you having a double mastectomy? Are you doing immediate reconstruction? There is a lot to consider. I had a BMX with DIEP reconstruction 7 months ago. If you have any questions about that I would be happy to answer them. Feel free to PM me (click on my name in blue above and then select 'send message') so that we don't hijack this board with mastectomy and reconstruction talk.

    Hang in there (and thanks for the compliment)!

  • mary625
    mary625 Member Posts: 154
    edited January 2012

    MX is mastectomy.  I am actually having BMX which is bilateral mastectomy.  I know it is so hard to believe it is slow growing, but I've been told that by several docs and read it in many places. 

    Wishing you all the best!

  • beth1965
    beth1965 Member Posts: 203
    edited January 2012

    Wow i feel like i have learned so much already from everyone. Thank-you

    I am possibly getting both breasts removed. From what i have read in the forums it may be a safer way to go anyways.

    I have been experiencing aching pain in my chest for a few weeks basically my whole chest not just the tumor area anyone else experience this just curious.

  • JFV
    JFV Member Posts: 341
    edited January 2012

    Beth and Mary-  This is a very tough time.  But, you will make it through.  I remember my body trembled uncontrolably for the first two weeks after diagnosis.  You have gotten tons of good information from the ladies already.

     I think I spent the first two or three weeks going to doctors and taking tests.  I simultaneously visited surgeons, oncologists and plastic surgeons.  I would make sure they had whatever records I already had and then ask them what they thought I should do.  They would often review what they felt my entire treatment would be, not just their specialty.  I found it very helpful to hear their take on things.  I sometimes wish I had started at a cancer center where I would have seen everyone under one roof.  It may have made those first weeks easier.

    As far as ILC growing slowly.  I was told that I had a high grade of ILC which means it was growing quickly even though it wasn't supposed to.  I guess my cancer didn't go to medical school. 

    Best wishes ladies and please remember there are many excellent treatments out there ! 

  • JFV
    JFV Member Posts: 341
    edited January 2012

    Oh I forgot to mention.  My chest hurt prior to diagnosis and once I started having biospsies and extra mammograms it never stopped hurting until they were surgically removed.

  • HensonChi
    HensonChi Member Posts: 68
    edited January 2012

    Bev,

    I am ILC and Her also.  I was also lymph node positive.  I did TCH and am now on arimidex.  4 years out on Sunday the 22nd.  =D 

  • Momine
    Momine Member Posts: 2,845
    edited January 2012

    Beth, you are not alone. May I ask why you are having surgery first rather than chemo first?

  • Galsal
    Galsal Member Posts: 754
    edited January 2012

    Love it!  

    JFV wrote:

    "...I guess my cancer didn't go to medical school"
  • beth1965
    beth1965 Member Posts: 203
    edited January 2012

    Thanks so much for all the info ladies you are wonderful! I appreciate you's taking the time.

    momine- i have no idea why i am having surgery first other than my breast surgeon said so. I am trying to learn as much i can in a very short period of time as i am having masectomy on feb.2

    I know absolutely nothing about BC other than what the basic things are you hear like you get a lump and try to have it and any remaining cancer removed.

    I feel quite clueless reading many of the posts on here. I guess i will have to be a very fast learner.

    I have read many woman with large tumors are having chemo first i am very curious to ask my BS about this.

  • JSwan
    JSwan Member Posts: 2
    edited January 2012

    I did neoadjuvant hormone therapy (anastrozole) and was able to have a lumpectomy as a result.  I was told that my low grade ILC would probably not respond very well to chemo.

  • JFV
    JFV Member Posts: 341
    edited January 2012

    Thanks Galsal...glad I gave you a giggle. 

    I just want to say to anyone who is new to the cancer journey that it's OK to not know everything about your cancer.  I wanted to know everything and then try to figure out my chances of survival based on what I  thought I knew.  It has slowly dawned on me that although we all have breast cancer our cancer is so different and our reactions to treatments are so different we really just need to put ourselves in the hands of good doctors we feel we can trust.  Then, we need to try to enjoy each day as best we can and be kind to ourselves.

  • Gitane
    Gitane Member Posts: 58
    edited January 2012
    HensonChi,  Super big congratulations on being 4 years out.  I feel like I've known you for a long time.  Hope you celebrated and that you are happy and healthy for many, many more anniversaries.  Thanks for sharing.  Hugs, G.
  • HensonChi
    HensonChi Member Posts: 68
    edited January 2012

    Thanks Gitane,

    I remember you from the first time I was on the boards here.  It was rough, but now I live and enjoy every second....I am sure you do too! 

  • beth1965
    beth1965 Member Posts: 203
    edited January 2012

    Family Doctor says he has never seen my type of cancer in over 40 years. I did not think ILC to be that rare.

  • JFV
    JFV Member Posts: 341
    edited February 2012

    Beth I think It's 10 % of alll BC.  But, it doesn't seem that rare on this board.

  • beth1965
    beth1965 Member Posts: 203
    edited February 2012

    yes JFV i agree it does not seem so rare on this site. I guess thats why i was so surprised. My BS/Onocolgist was familiar with it at least i guess thats what matters.

  • Galsal
    Galsal Member Posts: 754
    edited February 2012

    I'm thinking the lower percentage of ILC or even PLIC is why the Surgeon and NP were acting so much more serious than the first meeting when they told me what specific type and options.

  • Katarina
    Katarina Member Posts: 99
    edited May 2012

    With ILC it is critical you get a surgeon who is experienced with this type of cancer. I got lucky and mine was. 

    Hugs 

  • lezza13
    lezza13 Member Posts: 579
    edited June 2012

    I had not idea that ILC was common.  My DX was end of December.  It was found on a digital mammogram. My radiologist found it and my BS confirmed it. It was lymph node positive too.  I had a BMX in Feb and am finishing TCX4 this week.  Nice to find other ladies with my DX.  I read it was about 10 percent too of all BC.

  • claireinaz
    claireinaz Member Posts: 662
    edited June 2012

    Katarina,

    I was dx with ILC, 2 c 6/11 nodes.  I wonder why it is critical that you get a surgeon that is experienced in this type of BC.  I went in for a biopsy/lumpectomy (if it was positive my surgeon and I agreed I wanted it OUT). They got a pathology on it right away so when I woke up I knew i had BC. Close but clear margins. I have no idea if my surgeon was that experienced. Now I'm wondering if I compromised my health...but how I could I know ahead of time if he was?

    I'm done with 5 months chemo that followed my lumpectomy and 6.5 weeks of rads 5 boosts to the tumor site/incision; will move on to a bmx and recon after my skin recovers.

    Just curiious as I've never heard that before.

    Claire in AZ

  • ductal
    ductal Member Posts: 10
    edited June 2012

    ihopeg, I am tired now, but will post soon.  We have many similarities.  Good luck to you.

  • ductal
    ductal Member Posts: 10
    edited June 2012

    By the way, I was diagnosed in summer 09, couldn't wait to get nasty cancer off my body, mammo missed for approximately 10 years, ILC stage 3b, 30/31 nodes positive!  One month ago became stage 4 with mets to bone and more, very fast.  Has anyone ever heard of 30/31 positive nodes, ever, on anyone?  Thanks.  My 12 year old is now 15, which is good.  My angel.

  • Sian65
    Sian65 Member Posts: 38
    edited June 2012

    Hi.. my details are in the signature below.  Be great to speak to others at Stage IIIC as I am about to begin more tests to confirm (maybe rule out I hope) local recurrance and bone mets to my hip... while still in initial treatment... this ILC is a bugger.

  • Sian65
    Sian65 Member Posts: 38
    edited June 2012

    Hi Ductal, 30/31 is huge!But from what I understand it is not the number but the ratio that is improtant - anything over 80% and the chance is mets is really high (as you have now found out = so sorry.

    Did they do a level 3 clearance on you??? They could only find 13 level 1/2 nodes on me (6/6 at SNB with another 4/7 nodes with viable cells after first line chemo - the other 3/13 showed possible evidence of prior cancer). 

    Here in Sweden they don't do Level 3 clearance cause of the risk for lymphodema.  Are you ok on that front? 

  • Katarina
    Katarina Member Posts: 99
    edited June 2012

    You need an experienced surgeon because ILC is not like ductal and as such is harder to be confident in "getting it all". 

    I'm curious if most people who get mets with ILC get it in their bones first rather than peritoneal area. Does anyone have or know statistics on ILC mets? 

  • Gitane
    Gitane Member Posts: 58
    edited June 2012

    Katarina,

    Table 3 in this article has some information about site of first mets for ILC.  It looks like the first site of distant mets is equally likely to be bones or organs.  Although this is a large number of ILC patients (767) it was published in 2008 and covers older data (it's retrospective).  I would guess that better care of the bones with bisphosphonates may have changed the balance a bit.

    http://jco.ascopubs.org/content/26/18/3006.long

    Distinct Clinical and Prognostic Features of Infiltrating Lobular Carcinoma of the Breast: Combined Results of 15 International Breast Cancer Study Group Clinical Trials
  • Katarina
    Katarina Member Posts: 99
    edited June 2012

    Thank you Gitane. This is what I was hoping for.

    When Bone Mets are found, I wonder where in the body they are more likely?  

    Hugs 

  • tinat
    tinat Member Posts: 2,235
    edited June 2012

    Katarina - I believe bone mets from breast cancer can be found in any bones, but the process typically starts in thicker bones in the axial skeleton rather than finer bones in the extremities.  In other words, more likely to start in spine, ribs, pelvis, skull and less likely in lower legs/feet or forearms/hands.

  • 3cbrca
    3cbrca Member Posts: 2
    edited June 2012

    I'm 3c- I had 22/32 pos nodes (most were extracapsular or extranodular- they had begun to travel) with a 3 cm tumor in 2006. I had aggressive treatments- a lot of radiation and I am as surprised as anyone that I haven't developed mets or a recurrence. I have been so lucky. When I passed four years I really begn to believe I could make it - when I passed 5 years- I knew I really had a chance.



    I could only find one other woman with that number of nodes when I was first diagnosed. I was looking to make sure they were still out there!



    We're here!