How is this even possible!!! ILC??? does anyone understand it?
My story/dismay
Years of regular self exams and mammograms
Feb found a "thickening" of skin/tissue (not a lump - but not right)....mammogram due anyway
Did not show up on Mammograms, barely at all on Ultrasound. (Was told that it was caught so early it was nothing.
Biopsy determined ILC - still being told tumor was about the size of a thumb nail.
MRI - now we are at almost 3cm - and it doesn't look like the lymph nodes are involved.
BMx/ nipple sparing - 7 days out
Path results indicate stage 3, 5 cm, and a bunch of stuff I couldn't absorb (Will call nurse later)
Will have axillary lymph note surgery as soon as I've recovered enough from BMx. Then most likely, a reverse on my recon and will probably lose my nipples, then Rads, then Chemo, then re-visit recon. I'm thinking enough is enough - I'll just go flat.
I just want to understand why all a sudden, like overnight, this tumor comes up, is expected to be almost nothing but in a matter of weeks its 5cm and stage 3?
Doc says, kindly...that's ILC
Prayers, Blessings, Hugs
Comments
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Doc is right. ILC grows in sheets and mimics dense breast tissue. It doesn't always feel like a 'tumor' like the ones I imagined. So it can hide for a long time. Mine was 7cm and did not show up on Mammo, ultrasound or MRI. It sucks, but there are a lot of survivors out here. So sorry you have to go back and undo all your surgeries.
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This is what ILC is like, unfortunately it's hard to detect and often not shown on Mammograms or Ultrasounds. Mine wasn't, even though I knew I had something going on - no one listened until 18 months later and it was so big they noticed something on Mammogram. No-one tells you about this type of BC cancer and it is very sneaky. Mine started off being small and ended up being 3.5. There are lots of ILC threads on here if you want to ask any other questions. Good luck.
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Same experience here. I
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My situation is similar to that of Fizzdon. Knew something was up for quite a few years. 2012- nothing shows up on mamm and US. Then after major pushing (by me), my ex-gyn sent for more testing.
Fast forward to September 2013 = DX with ILC .. 3.5 cm .. zero lymp node involvement. Stage 2 - Grade 2.
It is sneaky - but sometimes it's actually "there" (as in my case) and nobody sees it - although I could feel it - move it and it hurt.
Makes you wonder!
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Sorry you are joining us here.
There are, unfortunately, thousands of ladies in your situation. It would be nice if women were not brainwashed into thinking mammograms are a gold standard. For us, that information is only too clear now.
May your journey be less stressful with a great outcome
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Sadly your doc is right. Sorry about the roller-coaster you are on right now. It WILL get better, although I know that sounds plain stupid from where you are sitting right now.
Going flat is definitely an option (I am 4 years out from BMX with no recon), and besides, if you change your mind down the road, you can always do just that: change your mind. Some women have uneventful and successful reconstructions, but an awful lot of women have all kinds of complications and/or less than stellar outcomes. Either way, it involves several surgeries, and I would recommend at least delaying the whole thing until you are done with the actual cancer treatment.
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same story here with ILC, I passed mammo yet had 5cm ILC...........but I don't understand why you need to undo your recons? I don't see any reason for that? You can remove the nipple and any remaining breast tissue but leave the recon, especially if its settled ok. I would get second opinion on that if its your doctor's suggestion. Recon is very personal, going flat or being forcibly flat like me is not for everyone, I am sure Momine won't mind me saying she is naturally very slender so being flat is less noticeable.
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Yes, same situation here. I just had a thickening on the left side of my breast and the occasional sharp pain every now and then. It first showed up on my mammogram as only being 1cm but after surgery the pathology report said it was actually 3.8cm with 2 involved lymph nodes. That's ILC for you.
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Im so sorry that you too experience this. I went to do mammogram after feeling the same kind of pain as described by others here, and after having the sneaky feeling that something is not right. After second round examinations with ultrasound I was having a biopsy just to make sure.. There it was. Estimated 1,1 cm, lumpectomy showed 3,9 and I was so scared and shocked. I really do get what you are going through, and send you lots strenght to help in the tough times.
Grateful for this forum and so much info on ILC. Its hard and lonley to get BC, when you find out that you are not in the majority amongst BC patients its even worse.
Thank you all for sharing ☺It helps💗💗💗
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My mom had the same. Her dx at time of biopsy was IDC w components of DCIS but her surgery pathology mentions lobular carcinoma as well. She had regular mammos incl a normal one in Oct and a routine breast exam by doctor, also normal (no lumps found).
When she had some irritation and later pain (in Jan, only three months after normal mammo), she thought maybe her bra was irritating her nipple but then it began to invert and she found a lump. Dx mammo was totally normal and nothing showed up at all, even when they knew what they were looking for and where it was. U/s indicated some small irregularity and biopsy confirmed bc. By Feb when she had surgery, it had grown to 2.5cm (I want to say they removed 5cm but maybe I'm imagining that).
Her mammo screening place not-very-helpfully told her she has dense breasts after she was dx years after it might have been helpful when she could have asked for u/s and avoided all that radiation. It has really shaken her confidence in screening.
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Sneaky perfectly describes ILC. My breast was followed by a prominent breast surgeon for 21 years. Yes you read that right. 21 years of watching it closely with mammo & ultrasound never missed. Done every 6 months. None of that found the cancer, it was my eyes in a mirror looking at my skin pucker & the color was off, kinda of an orange spot. I insisted they do a biopsy the week before Christmas. My surgeon was reluctant telling me these things are normally benign & did I really want to do this before the holidays? My answer was Yes get in there, something's not right. I am thankful I fought to check it. My path took me to www.breastcenter.com I have very large breasts triple DDD's and Dr Scott Sullivan did a nipple sparing skin saving double mastectomy with DIEP immediate reconstruction. So I fell asleep in OR with breasts and woke up with the same breasts. I chose to see this as getting a breast lift and tummy tuck & kicking cancers ass. The DIEP proved to be very doable & the results are beautiful. I try not to let the negative creep in. Just grateful I found it when I did. Thinking positive.
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These comments make me feel like I am not the only unlucky one to have ILC go undetected though I lived and exercised to be cancer free and yet here I am. A very healthy person with CANCER!!! How can this be? I am one month out from a mastectomy and 1st stage reconstruction and have developed some nasty blisters just above the incision perhaps from chafing the skin when exercising with a jog bra? Soooo lucky that it was found but so unlucky to get the sneaky type. I am Stage 2, sentinel node clean! ER+PR+, HER2- Just started Femara. No radiation or chemo needed. I am a 69 year old grandmother and believe HRT and my very dense breast tissue are responsible. Feeling grateful and unlucky all at once!
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Dear cjs9775,
Thanks for posting your story and welcome to the community. We are glad you reached out and look forward to continuing to hear from you. The Mods
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Thank you all for your many responces - very helpful. I'm sorry for everyone going through this, as well. Like everyone else here, I don't understand why the medical professionals don't take ILC women more serious. I do think my care givers have taken me seriously from the first time I told them I "felt" something. But I don't understand the long delay between dx's and surgery, however, it was explained to me that ILC was slow to grow, and a few weeks wouldn't matter. But I wonder how something thought to be the size of a fingernail got to be 5cc! Well, I'm preaching to the choir...I know. I guess I don't have anything else to say or add - I'm just tired. I feel like I've aged 10 years in 3 months. Surgery #2 June 5, they want more lymph nodes - joy joy. And they are putting a port in. Guess that means chemo.
Blessings to all,
Vol4Life
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oh, and I meant to add Lily55, I may have not worded that correctly when I said "reverse the recon" as I understand it now, the TEs will stay in place an I will resume recon after chemo - I don't know if I can stand that! The TEs are extremely uncomfortable 2 weeks out. I will hopefully know more tomorrow. I had NSparing surgery - and I'm already concerned that at least one of my nipples won't make it. I know thats not the most important thing here - but I did just want to keep a little part of myself. <sigh>
Thanks everyone! Blessings to all.
Vol4Life
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Well, I'm joining the club too. Diagnosed May 11 after 3D mammogram, ultrasound, biopsy. Initially said was 1.2 cm. but MRI says 2.6. (Who knows how large really?) I'm postponing surgery until late July to coincide with trips that have been long planned. BS is prescribing anti-estrogen therapy in meantime till surgery. She says just a lumpectomy and radiation. Hope the medical oncologist agrees. DO NOT want chemo. Anyway, a shock of course. But have to trust someone and what is, is. Hope I can deal with I'm already recognizing as a mental fight not to start thinking of myself as really sick and letting it affect me and what I do day to day. Any suggestions?
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Oh Starwood, I'm so very sorry that you've joined us - but you won't find a more supportive place. I'm sort of a newbie myself. This Wed I will be 3 weeks out from my BMx with immediated recon. In two weeks I go back for axillary Lymph node surgery.
I know you are in shock...and probably scared. I guess, my best advice to start with would be to find out as much as you can about your tumor. What kind it is? The type of tumor you have, determines how your tumor will behave and how the doctors will want to treat you. I don't want chemo either. But, I think, I'm going to give into that option.
Blessings!
Vol4Life
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hi Vol4life, just to let know that I very much experienced that only the treatments make you sick in this stage of the illness, so no chemo probably will give you the opportunity to change nothing in your life and carry on as an active person! I was fortunate to tolerate the chemos well and even worked 50% (am a freelancer)!
Am back to business 100% now, though radiation pneumonitis tries to keep me down a bit - but this will heal soon.
Have a good trip and go on with your life cause it is happening NOW
Marietje
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sorry reply was meant for Starwood :
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Marietjek...That's okay...LOL...I could use those words, too. Thank you for caring!
Vol4Life
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STARWOOD, I think waiting 2 months can be a problem. Cancer may double in size every 90 days. I realize the hormone therapy will help and if it is grade 1 and low Ki then that will also be good. You may want to consider mastectomy or maybe some chemo. Effects from my neo-adjuvant chemo did not really kick in until the 2nd treatment "3weeks after 1st". Chemo was very doable and it was nice not to have the hair bother for summer. Hope you enjoy your vacation and your Doc is in agreement with your plan. Sorry too that you had to seek us out and join- Hey! We are a pretty awesome bunch of hotties and mighty willed.
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Starwood, are your docs OK with delaying surgery that long?
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Momine, Starwood,
Momine I understand your concern with delay of Starwood's surgery. I basically have the same dx as Starwood - mine was dx 2/9 and i had my surgery 5/6 - I was concerned about the delay. But, ILC, is supposed to be a slow growing cancer. They did start me on hormone theropy immediately. What I wonder about with Starwood, comes from my own experience. My cancer team couldn't tell me much about my tumor until after my surgery - only that it was ILC, ER, PR +, HR- and @ 3cm - They guessed, by all imaging that the nodes were not involved. Well, after BMx surgery, determined that tumor was 5 cm and nodes are involved (auxillary surgery in a couple of weeks) and now guessing that I'm a stage 3 instead of stage 2. I'm just curious, Starwood, how they determined the size and stage of your tumor before surgery? Perhaps, there are betters tests in your neck of the woods? Anyway, from my limited understanding, I think that ILC behaves much differently than other kinds of breast cancer and doctors are not as anxious to move to surgery immedately. I don't know. It did concern me. I keep wondering - if my tumor grew to 5cm from3 or if it didn't show up as big on the imaging tests to begin with. I doubt if I'll ever know!
Blessings & Hugs, Jerilyn
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Reading the responses brings comfort in a bizarre way. I found a lump when I performed a self exam on 3/5/15.. My left breast felt weird. Turned out to be ILC. Mammogram with Ultrasound indicated 1.7x.7 cm. MRI 3x4 cm. The surgeon used that measurement for lumpectomy 5/15/15. The margins were negative, but the surgeon explained that at one time the amount of clear margin I had would not have been considered clear years ago. The lymph nodes biopsy were 4/5 positive for cancer. One lymph node had one cm of cancer. The others were less than 1 cm. How quickly a life is turned upside down. A port will be installed on Monday.
God bless my ILC sisters (and brothers).
MG
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Hi, All!
I haven't been on these boards in quite a while, but I'm going in for a follow-up next week and was wondering if there was anything new going on in ILC world that I should ask my onc about.
I ended up delaying my surgery after diagnosis in part due to trying to wrap my head around the situation and get comfortable with a plan. I ended up with just a lumpectomy and SNB a couple of months later and so far, so good. (My profile explains the fun of trying to chose a path in a "more surgery is better" environment here in Texas.) The tumor at initial detection in early June via sonogram and biopsy appeared to be perhaps a bit over 1 cm; at removal two and a half months later, it was closer to 2.5 cm. Analysis indicated it was very slow growing, so I attributed the size change to (1) reaction of the area to the biopsy right in the middle of a web of cells (I was surprised at how painful the biopsy was, and there was a lot of swelling, etc.), and (2) they really can't "see" ILC very well on imaging - it ALWAYS seems to be larger when they remove it than they thought it was. It's less of a discrete lump and more of a net of cells. I don't actually believe it grew 2 1/2 times bigger over the 2 1/2 months it took me to select and implement a plan.
It was never imaged on a mammogram, but it was OUTSIDE the area generally imaged. I don't have large breasts - large B/small C most of the time, and I'm 5'4" and usually around 125 lbs - but this ILC grew way up high, in an area you wouldn't even think was breast tissue, which is why they weren't trying to stuff it in between the plates to image it. They do NOW, of course, now that my body's evil possibilities have been revealed.
I usually feel as though I had been on track to be a woman diagnosed in my mid to late 50's with a huge tumor, but instead, I found it myself early and thought it was a cyst at 45...I'm at just about seven years from diagnosis. Still taking Tamoxifen, as I am still premenopausal and now they believe it can have protective benefits up to 10 years rather than just 5. My doctor's original prediction still stands: she feels that what's most likely, if anything, would be a recurrence about 10 or 15 years from the initial diagnosis. So my seven years of nothingness, while great, is not really indicative of anything long term. Over the last few years, I've had changes in my tissue due both to the radiation I had on the left side AND due to Tamoxifen blocking my breast tissue's access to estrogen. I'm lumpier overall, so self-exams feel like a waste of time, though I keep an eye out. All residual issues from surgery and radiation resolved a long time ago.
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MariaTeresa,
Hello my dear, This is Vol4Life - Go Vols! - They can take my boobs, and probaby my hair, and I guess a lot of other things - but this fall on Saturdays, I'm watching my boys play ball!
All joking aside, there are no words for what you are going through - it looks as if you have read the thread I started - and the wonderful replys of support and comfort. Yes, ILC - well, it makes you feel like a punching bag. I told my daughter, that I wish I had gone out dancing New Year's Eve, all dressed up, an bringing in the new year with a bang instead of falling asleep on the couch again - but little did I know that the following months were going to be filled with tests, doctors, surgeries and more.
I would like to tell you that it gets better - and in a way it does. And the best I can tell - it is different for all of us. But the truth is, it gets better when you discover that this is something you can live with, manage, and survive. Putting the cards on the table (which we all hesitate to do) if you in fact discover that the ILC is worse than expected, and the change of news happens fast, then I won't tell you that things get better - but I will tell you that, at least in my case, it has given me a clear opportunity to re-evaluate my priorities, and put everything in perspective. There are still a lot of unknowns for me......so I still don't know much about what comes next - but since they are putting a port in me when I have the auxillary procedure, I'm guessing they are preparing me for chemo -
I know I'm not shedding lots of light here - but I can say, you are not alone.
Blessings, Hugs, Laughter
Jerilyn
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it's wonderful to read your response Jerilyn. I'm worried that once I have a PET scan I will be told the cancer is stage 4. I think the port installation will be emotional for me. I am a positive, upbeat person, and while I'll allow myself to feel whatever I feel, I'm determined to count my many blessings every day. Positivity is an important tool in facing cancer.
Sending blessings,
MariaTeresa
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MariaTeresa, Positive outlooks is probably an important tool in facing anything - sometimes easier said than done. One thing that surprises me is how so many women here, with such simular dxs, get such different treatments! And the only thing that seems to make since is that those that like the outcome of their treatments are happy with their choices - and those that aren't happy with their outcomes, arn't happy with their choices. From what I can tell, the Port is a better way to go for chemo than fooling with the IVs each time. I dont think they are too much trouble - guess we will both be finding out. I haven't had a Pet scan yet - have been wondering if maybe that should be the next step? - I too, worry about stage 4. I'm not that worried about my life here on earth ending - it's just that I don't want to go through what you have to go through to get to the end...LOL...plus, I've got unfinished business. so - for now, one day at a time.
Blessings, Prayers, and laughter,
Jerilyn
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I didn't mind the port installation and I had it taken out in my surgeon's office with local anethesia. I can't imagine doing without it and having a line put in each time, and I actually worked it into a recycled art piece of mine post-tx. I have to say my port scar still itches at times, though...apparently this is very common and normal.
My port was used the first time two days after surgery. I didn't have any problems with it.
I was terrified to get my PET results back. I can relate to the overwhelming fear. My oncologist called me at home with the good news on a Friday night, which I much appreciated.
Claire
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Same story here as most of you ladies, with the exception of IDC in my left breast that first occurred in 2002. And same reaction "How is this even possible?". In Feb, I insisted something was going on in the right breast despite negative mammogram, followed by ultrasound with 8mm [so small???] area of concern followed by MRI with 5cm area of concern....turned out to be ILC 5cm with 2 positive nodes. Same comment by physician - "ILC is sneaky; this is what is does. It probably was there when we were dealing with the left IDC, but just hiding in dense breast tissue". When I read my mammograms, same area of dense tissue was mentioned every time but no recommendation for MRI or biopsy.
Since ILC often does show on MRI, but the cost is an issue, I think there needs to be stronger advocacy for MRIs when dense tissue potentially hides a cancer.
But here we are. Now we just have to get through the treatments so we can get on with our lives.
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