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Team ILC Warriors

lemon68 Member Posts: 301

I thought I would start a new thread for those DX with ILC. I belong to a wonderful IDC Warrior group here and love it. It is a large group whom I love but I am the only one with ILC. So, feel like I need to get to know some of the women out there dealing with this sneaky lurking dang disease. I dont see nearly as many of us and understand it only accounts for 10% of us.

Any advice or guidance you can give those of us with ILC is appreciated. I could really use a place to post with others in the same phase as myself or those with experience to share, hoping this will be beneficial to others also.

Of course all are welcome!



  • Lily55
    Lily55 Member Posts: 1,748

    Hi good idea I was diagnosed last April and now worried I have recurrence or new primary on other side details are in my signature

  • riverhorse
    riverhorse Member Posts: 10

    Good idea.

  • Nancy44
    Nancy44 Member Posts: 13

    Me too, I guess.  I'm about 1/4 way through Rads, obsessing over hair growth and trying to get back to whatever the new normal is. 

    Be well and blessed.

  • lemon68
    lemon68 Member Posts: 301

    I was so pleased to see some of you came to the thread! :)

    Nancy- how are the rads going?

    Lily- What are you doing to have yourself checked? I insisted on a MRI last week because I was worried my other side might have something, it was all clear and nothing else in right. I of course was happy but in the back of my mind I am saying, it may be hiding. I guess I have read to many scary posts on ILC.

    Welcome Riverhorse!

  • hmh23
    hmh23 Member Posts: 49

    I just thought I'd pop in and tell you that ILC is really no different that IDC, it is just more difficult to diagnose.  Most ILC is slow growing and that's a real plus in our cancer story.  Treat yourself well, try to alleviate your stress and laugh a lot!!!

    Lily;  You were wise to insist on an MRI and I guarantee you if it showed nothing, then there is nothing.  Rest assured, you are through the worst and you are on the other side.

    I'm a 3 year Stage 3A ILC survivor and getting stronger each and every day.


  • kar123
    kar123 Member Posts: 72


    I guess I am one of those scary stories.  I'm sure your MRI was correct, but you know your body.  If you feel something is different or not the same as before insist on more tests.  I was "guaranteed" that an MRI was the end all and be all of scans.  It never showed my 7 cm ILC tumor.  Is it common for MRI's to fail so miserably?  No. So if you are not satisfied, persistance is key.   I'm 2 1/2 yrs out now and feeling good.

  • bcoct
    bcoct Member Posts: 2

    Hi I was diagnosed ILC in Sept. done w. chemo doing rads soon.  I opted to do a

    bilateral mastectomy tho only one breast was affected.  Its a sneaky one and didnt want

    to take a chance.  They saw the tumor larger than what MRI said also by a couple of cm.

    It is the same as IDC for rads just chemo was idifferent dosage and number.

  • lemon68
    lemon68 Member Posts: 301

    Heather and Kari-

    you both give me hope. My RO told me MRI is the best detection. I had one last Thursday I wanted the left checked to make sure nothing was lurking. Came back clear, but MO told me its clear but if there is more LCIS or ILC is may be too small to be picked up. Couldnt they have just let me enjoy being clear for a minute? I think your right Kari, we know our bodies best. I have never been so in tune with my body since DX. I dont know how a MRI could miss a 7 cm??? Was it with contrast, I would think it would light up. Scary.

    Glad both of you are feeling good.

  • hipline
    hipline Member Posts: 72


    I always try to read as much as I can about ILC on these boards. The information has been so valuable! I am 2+ years out and feel very good but it took almost 2 years to get to this point. I just started a new job and don't get here as much as I'd like but please count me in!

  • kar123
    kar123 Member Posts: 72

    Yes, it was with contrast.  ILC is very different from IDC in the way it forms a tumor.  It forms in sheets and threads instead of a solid tumor.  This is why it's called the "sneaky cancer".  It can look like fibrotic tissue on scans.    I just knew my breast felt different, heavier, more fiborous.  Finally, I got the biopsy I wanted from the very beginning and it confirmed my fears.  It did show up on my pet scan.  Look at some of the past posts on the ILC thread.  A lot of good information on there from women who have been through it.

  • claireinaz
    claireinaz Member Posts: 679

    My RO also told me that MRI is the best follow up for ILCers (like me), if you still have boobs left.  Mammos and even US miss our kind of troubles, a lot.

    I had to insist that my PCP send me for scans after I found my lump (pea sized, movable) in August 2011.  She told me twice it was normal breast tissue, but I just had this feeling it was something bad.

    DX 9/2011, ILC 2 c. grade 1 stage II 6/11 nodes, lumpectomy/chemo/rads finished 5/2012; bmx/recon on the way this June.

  • lemon68
    lemon68 Member Posts: 301

    kar123- the MRI missing yours proves how sneaky it is and scary. I had gone and read the ILC threads, there was not alot of current threads. I had a lumpectomy and am going to start rads if BRCA is negative. I noticed how many with ILC had BMX and understand why. My BS didnt even consider it, he is into breast conservation, RO and MO seem to agree. Everytime I see a ILC with a lumpectomy like Claireinaz I feel some relief. The decision is so hard but I know I have to be at peace with my choices. I only know if BRCA is + or this comes back these girls will be gone. I am scared everyday. I have accepted it but all the what ifs are tormenting me. I noticed you had your ovaries out, were you BRCA +?

    Best way for me to learn is from others that 'get it'. I find strength from the boards.

  • Lily55
    Lily55 Member Posts: 1,748

    Waiting for results from my MRI - I wanted bmx as hate being lopsided and want to ensure I keep some lymph nodes ...but surgeon thought I was mad and refused but he is not trying to live my misery ... It's not a year for me yet and I am anxious fearful and tearful all time at moment and made worse by heavy physio on no breast area damaged by rads am sure it rakes up emotions...

  • kar123
    kar123 Member Posts: 72

    Lily55 and Lemon68, it's still new.  The feelings you are having are completely normal.  I know you're probably sick of hearing this, but as the time goes by the easier it gets.  Not to say that the anxiety goes away, but it lessens so you can move forward.

    Lemon68, I had my ovaries removed because I was premenopausal and my pathology was highly ER/PR+.  Since we were done having kids, I decided to have them removed to get rid of the estrogen.  I am now on Arimidex.  Some people decide to keep the ovaries and go on Tamoxifen.  There is new research that suggests an AI is more effective for ILC, but I don't think it's really by all that much. 

    I chose to have a BMX because I am a worrier.  I didn't want to have to worry so much about going through everything again.  My breast surgeon said she would be ok with either decision I made and that getting it in the other breast would be about a 20-30% chance.  Pretty low in the grand scheme, but enough to drive me crazy.

    It's just another in a long list of personal choices we have to make on this journey.  Talk to your doctors, do your research and then you will be good with whatever decision you make. 

    Check out the ILC Long Term Survival Thread.  It will make you feel better!

  • antonia1
    antonia1 Member Posts: 73

    Hello everybody. I am 2 1/2 years since diagnosis and am still slow coming back to normal. I decided on double mastectomy for the simple reason that annual mammograms and USGs kept missing my growing cancer until it changed the shape of my breast. The PET and MRI both indicated the 2 and 2.5 cm tumor when in reality it was 4+ cm.

    I simply didn't want to worry about false negative results. Of cause, with ILC we will never be entirely free of that worry.

  • sgreenarch
    sgreenarch Member Posts: 253

    HI, Ladies, great idea for a topic. I have been looking for a support group. Can't find one that's local so I'll elect you all my virtual support group:) Hope that's ok! 

    I was dx in July 2010 during a routine mammogram. Was my first time at a different mammographer and I now know that that made a difference. I had no symptoms at all and was beyond shocked, like everyone else, I'm sure. An MRI showed two tumors which knocked out the lumpectomy option. I opted for a unimastectomy as everyone around me said that surveillance was very good and why not hold onto a healthy body part (my right breast.) Though I sweat the yearly mammograms and MRI's I am mostly not sorry about this decision. It isn't easy to be lopsided, but I am grateful for the sensation that I have on my remaining breast. A cyst showed up on rightie 6 mos after dx and I was a lunatic until the bx showed it was benign. Neither way is easy, is what I've learned. I haven't yet had reconstruction. (Long story, not a candidate for a DIEP - not enough belly fat, though plenty elsewhere :) Didn't want implants or other kinds of flaps. Am considering BRAVA but I had to have an ooph and then my father got very sick and died, so one thing or another has been in the way. Now I'm not so sure I want to ever do reconstruction. Just kind of exhausted and sick of surgery and kind of at peace with myself. DH is, too, which makes this easier.

    Did my time on tamoxifen and just switched to Femara. Having the SE of extreme exhaustion, but otherwise ok. Funny thing is that the exhaustion is present at night, too, so I am sleeping better than I ever have. Joint and muscle pains too, but a recent study said that Femara was extra good for lobular, so I'm determined to beat the SE's and stay on this pill for the duration. I have found that taking omega 3 and vitamin D seem to help. Take Zometa infusions every six months for a total of what what will be three years. My MO feels that though it's experimental in early stage BC it could be beneficial in preventing recurrences. In any event, my bone density is still good, so it's at least helping that.

    I eat well and excercise. Gone organic (I'm convinced my BC is environmental; was likely exposed to DES in utero) and who needs all of these extra chemicals. Love Dr. Servain Schreiber's book, 'Anti-Cancer.' and just trying to stay positive. 

    I have those dark moments, especially recently when two friends who were dx same time as me recently had recurrences, but I also know that I (and we) can be one of those women who die of something else at a ripe old age. I'm controlling what I can, getting good care, the rest is fate. Faith has helped me get through this. I try not to obsess and live fearfully but I have only gotten to this point recently. Think we all suffer from PTSD to some degree and only getting farther from dx will help a bit. This is a bit of a life sentence though. That's the hardest thing about BC, I think. The mental anguish.

    Anyway, thanks for listening. 


  • lemon68
    lemon68 Member Posts: 301

    Hi and Welcome Shari, I am glad you found us. I am so glad so many have come to the thread. I am continue to be inspired by others here.

    Sounds like you are at peace with the hard decisions you had to make. What a hard time having to deal with all of this and the death of your father, so sorry.  I am having alot of dark moments this past week, one moment I think I am fine then next I am someplace in my mind I dont want to go. I am glad to hear that you are finding a place to not obsess or live fearfully, I hope one day I will be able to do the same. I do fine myself 'acting' like all is fine but when I am alone away from DH and kids it all comes flooding out. I feel I need to put on a strong face for if I lose it so will they. DH has had a hard time, our bond is strong. My kids I have been honest with and they are dealing with it fairly well. What scares me the most is ME. I also am trying to keep off the reoccurance threads and Stage 4 threads, curiosity gets the best of me sometimes. My heart goes out to them all, such beautiful brave women but mentally its not good for me and I start with the What ifs. You called it a life sentence and you are right, I guess what we do with that is what is important.

    I am glad you are here Shari.


  • lemon68
    lemon68 Member Posts: 301

    Lily- any news on the MRI?

    kar123- I read your post twice both times instead of worrier I read Warrior, guess that is because you are both.

  • Lily55
    Lily55 Member Posts: 1,748

    What scares me the most is me is a great line - I am constantly fluttery to sick in my belly and shaky in the chest etc......not eating properly or well and feel spaced out a lot.

    Went for blood test today and the phlebotomist says "ok where am I going to get blood then, how am I supposed to do this"  as I had no veins - she even searched my fingers (yuk) .....I emphasised in my elbow crook and after an ultra tight tourniquet and hanging my arm down for ages pumping it she managed to get a few drops!!  Once I pointed out it was a problem and stress for me too (lol) she calmed down a bit.........but spanish staff have perfected the art of barking at patients......although underneath I think they are kind and well meaning. This rattles me too esp when she asked if I had chemo and my shabby veins is one of the many reasons I refused it.....

    MRI results hopefully next week - what a great memory you have.....Smile

  • kestrelgurl
    kestrelgurl Member Posts: 116

    This looks like a good group for me, if you'll have me. Smile

    DX'ed in Sept '11 after many clear mammograms and ultrasounds, including the one the week before they removed the mass that was visible from across the room if I wore a tank top. I still have the letter from the radiologist's from 4 months prior telliing me that I had benign changes and should follow-up in 6 months. Scary stuff.

    BMX found ILC in all 4 quadrants of my right breast and LCIS in my left. This was followed by 6 weeks of rads because they got clear, but minimal, margins up against my chest wall.

    Oncotype of 18, and with a concurrent diagnosis of Non-Hodgkin's Lymphoma (lucky me!), no chemo at this time.

    Went very publically flat for 16 months, but did 2 fat transfers to the radiated side in preparation for getting TE's last week. Now the fills start. Smile

    I have been a competitive athlete since my mid-30's and like to say I am the healthiest sick person you will ever meet. Have run one full and multiple 1/2 marathons since DX, running through rads and the past 13 months on Tamoxifen.

    Get blood work every 3 months for both the BC and NHL. Finally got the word I am in menopause, so the plan is to give it 3 months and switch me to an AI.

    I do struggle with knowing that I have two cancers hanging around. I tend to be a glass-half-full kind of person and do a good job of faking it when I have to, but it's tough when people assume I am "better". The reality is that I will always be looking over my shoulder.

    I like to say that you can call me a cancer survivor when something else kills me.


  • lemon68
    lemon68 Member Posts: 301

    Lily, remind me, are you in the US? Reason I ask is the MRI results seem slow to me. I had mine last Thursday and got results by phone on Friday. Maybe they just know I am impatient and wasnt taking no for an answer. They have all been kind but this waiting is the worst.  Are your symptoms caused by nerves or meds? I am sorry I know you havent been feeling well for awhile, I remember reading some of your other posts.

    Gail- Welcome and of course we will have you. Sounds like you have lived a healthy life and then got dealt this hand. And not just BC. Convinces me even more its nothing we did, its just genetics or the toss of the dice. I am happy you seem glad to be getting your fills.

    The blood work I am confused about. I asked my MO about blood work for tumor markers, he said they are unreliable and he doesnt do them. He did take 5 vials but told me it was to check to see if I am anywhere near menopause. Is there something I should be asking for that I am not getting? Here in Cleveland they have a clinical trial they called me about. If I am willing I am to give them blood and urine and permission to pull my mammograms for the past 10 years. I have very dense breasts. They are trying to find a tumor marker for ILC or come up with a better way of detecting it. I of course was willing to help others in the future, if it even does. I was given B9 results and would be sitting here letting my boob kill me if we didnt decide to go a step further and get the micro calcifications out which in turned ended up being ILC LCIS and DCIS. Damn whole party going on it there. I was never extremely healthy but I also never abused by body either. I am very eager to find out about my results of the BRCA testing. Either way I feel strong ( least I do right now, yesterday not so good) Smile

  • kestrelgurl
    kestrelgurl Member Posts: 116

    I get bloodwork to check estradiol and liver enzyme levels along with white blood count and makeup. I think that without the Cll/SLL, I may be down to 6 month checkups. I currently see my MO, RO, BS, PS and ob/gyn. I suspect that they just like to keep tabs on me because none had ever seen a patient with a similar dual pathology.

    I am participating in a research study at the University of AZ that is looking into whether a compound found in cruciferous vegetables can improve the efficacy of tamoxifen. I give them blood and urine on a regular basis but will have to be dropped from the study when/if I am switched to Femara.

    It gives some meaning to all of this.

  • Soccrmom13
    Soccrmom13 Member Posts: 7

    Just had my post op appointment today with BS and doing well except for slight infection in node incision. I have an appointment with RO Friday and MO next Tuesday. Will be happy to meet with both and get a plan in place. Still wondering if I will need chemo given triple positive status. Looking forward to talking with all of you.

  • Rdrunner
    Rdrunner Member Posts: 67

    I would lie to join this team if Im allowed Laughing Lemon I hope that study does find something that will help. Over and over we hear how lobular gets missed all this time. My sister had her doc tell her lobular is likely to be braca positive, I guess I will find out soon.

  • Lily55
    Lily55 Member Posts: 1,748

    I am in Spain - mañana country.......I have never been told lobular is likely to be BRACA positive and was not tested even though have female relatives who have had ductal cancer

  • sgreenarch
    sgreenarch Member Posts: 253


    Kim you are so recently dx! Time does help. A lot for you to get used to. Thanks for starting this thread. We will be there for you.

    I had the regular brca test and then the full sequencing.(lots of distant cousins w bc all through same grandmothers family. Also I am Ashkenazi Jewish, a risk factor for brca.) all negative. All of my cousins tested neg too. Never heard of any connection between ILC and brca.

    Good day! Shari

  • AmyfromMI
    AmyfromMI Member Posts: 115

    Hi all! I'm so happy this thread was started. Thank you Kim! I would like to join as well. I'm exactly one month from diagnosis and waiting for my oncotype results. Waiting is the hardest part of BC for me so far. I'm so impatient and want to get on with it. :( I have a follow up with my BS on the 27th and a first meeting with my MO on March 1. I'm scared, nervous, hopeful. :) Thank you again everyone. Please keep posting as I draw strength and courage from all of you. Hugs!

    ~ Amy

  • lemon68
    lemon68 Member Posts: 301

    Welcome AmyinMI, Soccermom and Rdrunner, hope I am not missing anyone. I am so glad you are all here. I am learning from everyone everyday. It is so helpful.

    Amy-Good luck with MO are you also seeing a Radiation Oncologist on this 1st visit? Our stats are similiar, and I am understanding rads and tamoxifen are standard care. Someone correct me if I am wrong.

    Rdrunner- I am also waiting for BRCA Results, I was adopted. Shari, you mention Jewish, my entire life everyone thought I was Jewish by appearance. I did have a nose job about 8 years ago.. :) Since I have no history I may very well be, another risk factor. I feel at peace with the results either way. I say that now..I am scared out of my wits!

    Yesterday I saw my back DR. I have a bulging disc and had a MRI on 12/3, 1 month before DX. He wants to do another with contrast since my back is still hurting. I asked MO today if it was necessary and he said absolutely. I burst into tears.. I know they want to look for mets. I think it just hit me hard that this is now my life, our lives. Any pain or problem they are always going to dig deeper. I am grateful but of course its just another thing to worry me.  I had no lymphatic invasion, 0/2 nodes, isolated tumor cell.. its the ITC that is freaking me out. Advice anyone? How many of you have had to go through more test on other things? I know peace of mind is everything. I am also figuring out as far as the breasts are concerned we dont get peace of mind, even with a MX there is still that chance.

    Nancy- Are you still doing okay with your Rads?

    Much love to you all..

  • AmyfromMI
    AmyfromMI Member Posts: 115

    I'm sorry to hear about your bulging disc. That has got to hurt. 😞 My guess is your pain is related to the disc and not to mets especially considering you had no lymph node involvement. Are you planning to do chemo anyway because of the ITC? Or going straight to the rads? (((HUGS))) I wish I had some advice to give but since I'm still so new to this I don't even know what other tests or even what treatment may be coming my way. My BS said BC is a marathon and not a sprint and he's right!

    Rads and tamoxifen are standard care, however, we are waiting on the result of the oncotype test. I have the meeting with the MO as she's going to go over the results with me. If its a low score I'll move on to the rads and then to the tamoxifen. If it's high, I'm a candidate for chemo. If it's intermediate, I'm sure they'll leave the decision "to chemo or not to chemo" up to me. I'll most likely go for it.

    I'd like to do the BRCA test too. However, I'm compiling a book for the genetics counselor! Is this normal? I finally completed most of the forms on my family history as best I could today. They've been sitting for weeks but my brain has been mush from trying to process my diagnosis.

    Peace and hugs to all! Good night. 😴

  • claireinaz
    claireinaz Member Posts: 679

    Hi ILC sisters,

    I too have never heard that ILC tends to be BRCA positive. Research/studies, anyone?

    I go for my one-year check up next month (I've been going every three months but this yearly one feels different). I'm already nervous about it.

    I had lumpectomy, chemo, rads but am getting a bmx/recon in June. Like the rest of you, I worry--and don't trust my girls any more. They turned on meYell even after I had them mammo'ed regularly for five years in a row.  I have dense breasts, which I know puts me at even more risk. My surgeon told me I was lucky to have found my lump on my own at all.