Topic: ILC Tumor Size

Jul 28, 2011 07:46 PM sweetbean wrote:

well, mine was 4.5 x 3 x 5, so it was pretty big, whether you rolled it into a ball or not.  yikes!

Jul 29, 2011 03:03 AM suzieq60 wrote:

I was one of the lucky ones 11mm x 6mm x 7mm - my DH converted that into a circle and got 5mm round. Totally amazing it showed on the mammo at all.

Jul 29, 2011 09:57 AM nikola wrote:

Mine was only 0.2 cm but it was discovered after mastectomy I had mastectomy because of two IDC (one turned out to be mixed IDC and ILC) cancers and this one was a surprise.

Jul 29, 2011 12:06 PM AJTAYLOR wrote:

I was a lucky one... (if thats what you call it).  I was not able to breast feed on my right side because it was "clogged". A few months later found a rock in my nipple.  Mammo showed nothing at all and it was hard to see in an ultrasound as well.  I think if it would not have been in my nipple I would have gone years w/o noticing it... And I had very small breasts.  After BXM is measured 2.2cm.  Starting chemo next Thursday, 8/4.

Jul 29, 2011 03:34 PM Kleenex wrote:

Mine was "luckily" tucked way, way up on my breast, in an area most people probably don't think of as breast tissue. It was palpable when I was sitting up, and did feel like a cyst-y sort of lump. It was NOT palpable when I was lying down, as we usually are during a clinical breast exam. It was not visible on a mammogram, but that's mostly because I was having non-digital mammograms and that particular area of the breast wasn't being captured in the scan. It was sort of a lump/globule, rather than a sheet or linear formation, in my case. 2.1 cm of fun.

My "thoughts about ILC that keep me up at night and make me wish I could talk with someone who knows about ILC" have to do with that issue: where my cancer was. The lobes ARE at the back and edges of the breast. Is this part of why it's found at larger sizes? Because it starts in a lobe that's off beyond the edges of the field being crammed into the mammogram, so you can't see it until it grows into the area being imaged? I am glad I found mine where it was, and thankful to a 39 year old friend who told us all about her breast cancer, opening my mind to the possibility that perhaps I didn't just have a harmless cyst and should look into that.

Jul 30, 2011 02:56 AM Katarina wrote:

Mine was 12.5cm - my entire right breast (D cup).

It was mis-diagnosed as dense, fibroid adenoma, cystic breast. It was actually as hard as a baseball but the size and feel of a softball when finally biopsied and accurately diagnosed as ILC. Dense web of strings and indian file. Ever seen rubber band balls?  Like that.

Jul 31, 2011 04:13 AM Katarina wrote:

Hi susieq58 -- I had a BMX so the tumor is memory now.  I asked my Surgeon what they were going to do with my breasts when removed - he said good question - because I knew this was going to be a show piece for pathology team. He said they would keep it and use it for further study. I kinda asked too wanting to know what was going to happen with my body parts --- they aren't part of any funeral or cremation but I carried my beautiful ladies for my entire life and they were a special part of me. I didn't want to think of them going into the trash can.

I have tissue expanders in place and they're also D cup so I have to say the trauma is much reduced.

I'm just glad to have the cancer cut out of me. I look back and it gives me the trembles when I think that everytime I touched my breast and what I was told was "nothing and benign" - was a growing tumor!!  That's hard to mentally get over.

Time heals all but this memory is something not to be forgotten.  

Jul 31, 2011 08:12 PM, edited Jul 31, 2011 08:13 PM by Sharon1942

Mammgram in May was "normal" - but I also felt my ILC in my left breast.  Went back to internist, he felt & said it was "just dense breast tissue"  but sent me for sonogram & diagnostic mammogram.  Radiologist came into my room & said I needed a biopsy.  ILC in left breast has been diagnosted.  MRI, CT scan, & bone scan were clear.  I have an appt. tomorrow at UTSWMC to hopefully begin my journey to get rid of this cancer.  1st & 2nd opinion breast surgeons said bilateral mastectomies with reconstruction if I preferred - which I do - with tissue expanders to lead to perky implants down the road.  ILC is indeed a sneaky bad ass!  Doesn't appear on mammogram.  I haven't had a doctor do a breast exam on me in 5 years.  And I only did one because I missed my mammogram last year and wanted to reassure myself everything was okay before I had this last mammogram - and I found the big old mass which had already dented in my breast by pulling on the skin as it grew. 

Aug 2, 2011 05:48 PM elmcity69 wrote:

sharon, i'm so sorry you're joining us, but glad you found us. there's wonderful support here.

my original tumor was around 3cm (honestly, i've blocked some of it out, and don't want to re-read the pathology report), but had 3 or 4 "satellites", as the BS called them. it was one of the satellites i found, very high on the breast. the original tumor was deep behind the nipple - also not seen on mammos. had a "clear" mammo in 2007. sigh.

ILC is a sneaky bastard.

Katarina, i'm so sorry you endured that. I can see how the mental anguish lingered! Happy to hear you are well now.

j

Aug 3, 2011 01:31 AM Katarina wrote:

WARNING - Okay, I'm about to vent here so stop reading if you want only positive, peaceful and loving messages. WARNING.

I'M ABSOLUTELY PISSED with the standard of breast cancer testing done when they've shown that Mammograms and Ultrasounds don't detect ILC, IBC and even IDC at times.

So why hasn't the Breast Cancer Industrial Complex added additional testing standards (biopsies/MRIs) so it's NOT OKAY for at least 20% of us to fall through the cracks and do what's asked by breast specialists with regular screening only to be told "it's all good you, you don't have anything to worry about" as the freight train is bearing down on you. And I mean "the advanced breast cancer" train.  WE ALL talk about "how sneaky it is" as though that makes it excusable.

Better yet, WHERE's THE CURE and stop this epidemic. I spent time on Capital Hill in Washington as a legislative aide and this whole breast cancer epidemic is starting to look like it's got special interests backing. Yes, I will say what others dare not say. The ratio of women with breast cancer is insane and I'm angry. How many victims does it take to qualify as an epidemic?

I'm also trying to say the serenity prayer over all of this and asking God what' I need to learn here, but struggling to find meaning and purpose. Maybe I'll find it down the road.  I can't carry this cause and message alone as stress is not helpful to healing. I am taking care of myself and come here to see that all of you are too. That gives me some solace. And yet, it makes me mad when I see new people come with similar stories. 

I so don't want to hear other woman come to this forum and share the same story. We can land a man on the moon, then why can't we get all breast cancer in "early detection" by getting the right screening standards.  It seems todays' screening standards are followed but they leave a big gap for a large percentage of women. 

My vent is over....and yes, I feel a bit better. Now I'll say the serenity prayer and pray for others. I do believe the bible when it says the power of prayer is better when it is done on behalf of someone else. 

Hugs to you all,

Kat 

Aug 3, 2011 11:05 AM AnacortesGirl wrote:

Katarina -

I'm glad that you vented.  I hear your frustration about not wanting any new women joining the "club".  Most of my anger is gone and I suspect that is because I'm trying to put my energy into rebuilding my life.  When my bucket is low on energy I tend to be pretty selfish and keep it for myself.

I had all the warning signs in front of me yet I never asked, or even thought of asking, for an MRI.  My PCP and I had a discussion about this 6 months ago when I went in to have a ganglion cyst removed.  He asked if there was anything that I would have done differently.  (I had kept him informed about my sister's stage III dx and her eventual death along with my mom's family history so we had multiple discussions about options for gene testing, prophalytic mast, propylatic tamoxifen, etc.)  And I told him yes - I said we should have sent me in for an MRI years ago. 

As an internist, dealing with so many different medical issues, he just wasn't aware of how ILC slips through the detection with a mammo.  It's a weird feeling to be educating your internist but he wanted to understand it better from my perspective so he could help the next woman that came into his office.  But he hasn't been getting a clear message with all the controversy around detection guidelines.  Once I started getting cysts in my breasts and was unable to do any worthwhile self exam we should have said "Game over." and sent me for an MRI.

The only time I have stepped up and tried to speak out was when the FDA was taking comments for Avastin.  About a month ago I posted my comment on their website.  But I really don't know if I can make any difference on detection other than one doc at a time.

Aug 3, 2011 02:35 PM elmcity69 wrote:

go for it, Kelly! you don't need permission.

Kat, you are right, unfortunately. I feel like the doctors themselves --at least, many-- are shackled to the old way of thinking. My PCP is a great example. I had a mother and a maternal aunt dead from breast CA, another aunt survived, and the PCP blathered on about how I didn't need mammos yearly because "too much radiation, you'll wind up maybe with an unnecessary biopsy and you don't want that, do you?" And I don't know whom to be more pissed at: him or myself. I really knew very little. I had NO IDEA an MRI should have been ordered.

As the saying goes, life happens when you're making other plans. I tried years ago to get BRCA tested, but the HMO refused. $5000 for a test when I was a pregnant stay at home mom with a toddler? But God, do I wish I had fought that. I try not to think about it. (Of course, once diagnosed, they approved "no problem!" according to the onc's secretary. Uh, no shit, Sherlock.)

Much more needs to be done. The pinkwashed movements of Komen, etc. fail to address this.

Aug 3, 2011 03:15 PM KellyMaryland wrote:

Okay, thanks elmcity. 

I was diagnosed with PLCIS.  I was pregnant when I found an area of thickening (kind of rope like) in one breast, showed it to my gyno and he referred me to a BS.  She biopsed it and it was found to be benign.  I was followed by physical exam and mammo/ultrasound during pregnancy and nursing and thereafter.  It didn't grow but didn't go away and I asked that it be excised, which my BS did.  In the margin of the otherwise benign area removed was the PLCIS.  Began getting MRIs as part of the monitoring and the radiologist told me (much like what was told to Gitane) there were "numerous nodules, too many to count"  all over both breasts and that they were "probably papillomas" but they didn't know and would watch them closely.  I was asked to repeat the MRI in three months and the result of that MRI was a suspicious clustering, which was biopsied with benign results.  Was told to come again in 3 months.  Anyway, I opted for a PMBX which I did this past January.  Many thought this to be overkill but even though the pathology came back with no malignancies, I still felt I had done the right thing for myself.  There have been some recent discussions/a new study released in the medical community about the link between PLCIS (as opposed to classic LCIS) and ILC, suggesting that PLCIS is to ILC what DCIS is to IDC in some cases.  I'll never know if the MRI caused me to jump the gun or saved me from invasive disease, just thought I'd add this perspective to the mix.

All the best,

Kelly

Aug 3, 2011 04:24 PM CML0310 wrote:

I had the test done as well and had a score of 11.  Mine was classic ILC.  I just started the tamoxifin and skipped the chemo.  I'm a numbers person and my oncologist said w/ or wout chemo my odds of recurrence would not be different given the low oncotype score.

Aug 4, 2011 02:35 AM Katarina wrote:

I had 3 different breast specialists (My OBGYN, 1 Breast Surgeon, an entire Breast Mammography Group) on my case for 36 months and giving me mammos and ultrasounds every 6 months looking for cancer.

Not one of them ever suggested any other testing procedures and I certainly didn't know what was available out there.  I think the problem is "neither did they, or they just thought one of the others involved in my care should be responsible for suggesting".  In any case, it shows us that even with focused scrutiny the guidelines and standards fall short for a sizable percentage of women who will get invasive breast cancer.

What scares me is I thought I was being cared for and taken care of. I would have been better off not going to doctors at all. I know I'm not alone and that scares me. Nobody at the American Cancer Society is keeping statistics on stage detection by cancer type. Go onto Susan G. Komen and they have no literature on ILC. I asked them to tell me where I could find it and they came back empty handed. 

 Do you guys know that the only place I've found ILC sisters is here. You ladies. We are THE SUPPORT GROUP.  

I know in my heart that I'm not going to die from breast cancer but I do know that I will experience a recurrence and mets. I will survive this too, and this believe makes it easier to get on with life as Gitane said. I however just wish we had a louder voice and more champions in the BC industrial complex for those who will come after us. I don't know how to leave a different legacy but sure would like too.

Prayers to you all and hugs.

Kat