I felt a large lump while in the bathroom.  A lumpectomy showed it to be DCIS but they also found very small tumours of ILC with a lot of lymph channel involvement.  A following mastectomy revealed more small ILC tumors and two positive nodes.  So if I hadn't felt the larger tumor there could have been a lot more postive nodes of ILC when the surgery was done. 

Mine was discovered in an unusual way.  I had decided, at the age of 59, to finally have a breast reduction.  I had considered it many times over the years, but for some reason I decided to do it this time.  Now mind you I have faithfully had mammograms and a yearly physical exam since I was 40 years old.  So my plastic surgeon called 4 days after surgery with the news that the pathology report indicated breast cancer.  You could have blown me over right there and then.  The last thing I ever expected, especially since I had had a mammo just 2 months before.  I know that this was God's hand in my life - how else do I explain deciding to have the breast reduction, when I had thought about it for so long, and finally it felt like the right thing to do?  I am blessed that the ILC was found, and we will never know how much longer it would have stayed in my body before it was discovered.  As my surgeon said - you just had the largest lympectomy I know of.

I am presently in the middle of radiation, no chemo.  My onco score was 18 and I have become part of the TailorX Clinical Trial.  My randomization was "no chemo" -- and I will admit I was glad!!!

 If anyone else discovered their BC this way, I would love to hear your story.

May God bless you all.

My tumor was discovered on a routine mammogram.  I can't stress enough:  GET YOUR ANNUAL MAMMOGRAMS.  I was very lucky that it showed up as my understanding is that lobular carcinomas often don't show on a mammogram.  I never did feel it - even with the ultrasound tech trying to help me find it at my request.  I wish MRI's were more routine as I believe that procedure would pick up all lobular carcinomas.

This is an interesting issue for me. Especially as I see the promotion on this website that yoga can assist cancer survivors. Yoga and Thai yoga massage [a vigorous form of massage where you are moved through an intense yoga class/poses by masseuse] helped me feel the problem in my right breast. In yoga there are contorted positions we would never get into in normal life such as King Pigeon pose where if you are able to flatten out, there is some pressure on either the right or left breast - depending on which leg you have curled up. Similarly, there is a position in Thai yoga massage where you are on your stomach with one leg or the other bent and in the massause's lap - which means a lot of body weight is posited on one breast or the other. It was during these activities that I felt a discomfort in my right breast - I call it a "spikiness" but it was more like a grisle or tough bit of internal breast flesh which had not been there before [I has been doing these exercises for 2 years] and which meant I had to pick up and move my right breast into a position where the spikiness was not felt. No such problems on left side. Two GP's felt right breast and said "no palpable lump" so I took myself off to Australia's excellent free mammogram screening service. Had a mammogram and was then recalled. Had many more mammograms on the recall day, then an ultrasound same day, then 6 core biopsies same day then met surgeon the same day. That was a Tuesday - I met surgeon on his surgery on the Thursday and received the formal diagnosis and had lumpectomy and one sentinel node removal the following Thursday. Everything paid for by Australia's public health system except for AUS$76. If it were not for the weird yoga poses I would never have detected the breast anomoly.

Hello Anna,

 Thank you very much for the positive thoughts. I went in to the doctors on tuesday and my ultrasound is this tuesday and the meeting with my surgeon is on thursday. Waiting for these appointments seems like torture. Do you know if they will tell me anything during the ultrasound? Or do I have to wait until I meet with the surgeon on thursday?

Jess~

Hello All,  This is my first post.   I was one of those lucky people who had a 'clear' mammogram in  Aug 09.  On Oct12, 2009 I was getting dressed for work when I felt a hard lump in my left breast.   You all know the words that came out of my mouth.  I am an OR nurse and have felt many tumors over the years.  This one had 'that' feel.  Fortunately I was able to see a good breast surgeon that day.  Over the next  three weeks I had sonogram,  needle bx. MRI x2 and surgery x2.  SNB was clean but margins needed to be adjusted.   Since then  I have completed chemo (cytoxan/ taxotere x4) and rads x30.  In fact yesterday was my last rad tx.

 Besides checking my own breasts I also had breast check earlier that spring by my GYN.  Nothing was hard at any time.  My husband didn't notice anything either.  One day it just turned into a rock.

I have been lurking here for some time.  Time to dive in.  I want to tell you all how grateful I am for this forum.  I am awestruck  and humbled by how much there is to learn.  Thank you all.

Just diagnosed after two years. Found the area myself 2 years ago - was told it was nothing - very high up on my chest wall on the edge of my breast tissue.  They have done 3 biopsies over the past 2 years on every other suspicious area and finally after my last call back I insisted they check it  - the biopsy came back with a IDC diagnosis. Just had surgery and the pathology report says it is ILC. The radiologist kept insisting it was just a thickening of the skin and wasn't anything to worry about and it was too high to be seen in the mammogram machine.

Hello all!

I had a palpable lump in the left breast in the 1st dx AND the 2nd dx!! Lucky me!

My mother also had a palpable lump -- she just had an itch and then...hmm...freaked out bc she felt a lump. She called the doctor and was seen the next day. We also didn't realize how lucky she was finding it (sneaky ILC). She no longer has mammograms -- her doctor said she didn't need to at her age (I don't understand that, especially since women in my family live well into their 90s).

hugs xox

I had a lump. But clear mamos and us. But my nipple inverted and I had a dent. Still told it wasn't anything. Finally got an mri. Tumor was 7.3 cm when found. But we still think that lump was coincidental cyst.

There are a couple of polls being taken on the Facebook page,

Lobular Breast Cancer (ILC) invasive lobular carcinoma

It seems many tumours can't be felt and don't show on mammogram or ultrasound so many ILC cancers get to late stages before being discovered. It will be interesting to see if there is a big difference although of course not so many with early stages may be active on forums as those with later stages. I'd like to start some sort of campaign to inform medical organisations and their educators to be more aware of the silent nature of ILC so I don't have to keep reading of women sent home year after year with no referrals and then diagnosed with mets.
All the awareness campaigns every year are wasted when they all talk about lumps and mammograms which mostly don't apply to ILC. Women are dying through lack of knowledge. Please fill in the poll on Facebook if you can.

I wish the doctors I saw in the years prior to dx had read somewhere that itching was a sign. I told more than one that I would have an itchy spot (yup, right on the 7cm tumor) and it was shrugged off. The growing cyst didn't seem to bother them, nor did they ever hear that dense breasts have a higher incidence of ILC. U/S in May 2016 didn't show anything (and nodes were clear, so the report says), Mammo in May 2017 didn't show it (or the smaller IDC hiding in proximity), but the 3d mammo rang the alarm bell. When I was told that dense breasts were part of aging in some people I was relieved it was nothing --- or so I thought. ....

Mine was seen on a 3D mammogram. Then US, MRI and biopsy. I didn't feel a lump, but did notice a smooth ridge in the area of the cancer a few months before mammo. I started paying the extra few dollars for the 3d mammos a year before diagnosis. Glad I did because regular mammo views didn't show the cancer. I had dense breasts and had been asking my gyno for a couple of years to order US &/or MRIs, and he said they weren't necessary & mammos were enough. Convinced my situation would have been a lot worse w/o the 3D.

No lump. Just a "pulling" sensation in the upper outer quadrant left breast. No one could feel anything. Mammogram and ultrasound negative. I insisted on a biopsy, and it was positive.

Yes I definitely had a lump.  I couldn't feel it unless I put my arm over my head.  I had no idea I even had the lump and it was quite large.  In the beginning after the biopsy the surgeon was just going to do a lumpectomy .  He then did a MRI and found out I had a large area of ILC and the lump was the outcome of the ILC if that makes sense. The plan then changed to a mastectomy .  I also had a discharge from my nipple about 4 months before I had my routine mammogram.  I passed it off as just not a big deal.  I should have gone immediately but I was so use to being called back in after the mammogram for a sonogram and it had been so routine for the past 3 mamos.   My surgeon said ILC is very sneaky cancer.  Hard to show on mammograms and can suddenly appear.