How was your ILC or IDC diagnosed?

I have read many times that ILC can be very hard to diagnose due to it being difficult to see on mammo and US. I hear it looks a lot like normal, fibrous tissue and can present without lumps or spiculations. So how we're you finally able to get a diagnosis? Did you convince your doc to keep digging, even though imaging came up clean? Did you have a hunch, or wait it out until it got large and or painful? Please share your stories with me, as I am at the end of my rope with my doctor and am still having sharp pains, heaviness and soreness with clean scans. I don't know what else could be wrong with my breast. Maybe I'm crazy being so worried about a dx, but a hypochondriac, I have never been.

ILC is definitely very hard to diagnose. I have been having regular mammograms for years and was called back for US often. Last year, however, I was sent for a 3D mammo after the US and biopsy was ordered immediately. It came back positive and I was told the tutor was small - less than 2cm.

After surgery it turned out to be 6 cm. My surgeon told me ILC is more often like this than not and I would be getting 3Ds from now on. I think I was lucky to only need the 3D as many women need an MRI.

I'm still very new to this but just had a chance to talk to the radiologist who studied my scans. I felt an enlarged lymph node under my arm which prompted my GYN to send me for diagnostic mammogram. I paid extra to have the 3D scan included. These scans were not suspicious but the breast center followed up with an ultrasound anyway since the lymph node was palpable. The radiologist credits the experienced ultrasound tech for even finding breast areas worth getting a biopsy. The biopsies came back positive for ILC (but without enough cancer tissue to run all the tests the doctor wanted). The radiologist went back to my mammogram scans after knowing there was breast cancer in both breasts and still couldn't see anything!

I then followed up with an MRI,which is supposed to be the best scan for ILC. Again, the results don't show anything for the breasts, although the lymph nodes under one arm did show up.

So, I'm supposed to be having a PET/CT scan but having to "self advocate" between an inept coordinator at the doctor office and my health insurance. Hopefully soon. I'm ready to move on to treatment.

Like many many women who were diagnosed with ILC, I had regular annual mammograms. I even pay the extra for 3D imaging since it was first offered (maybe 3 years ago at my center). I don't think they do a good job at informing patients of the limitations of these scans.

My boob felt denser than normal when I had my mammo in October, but came back negative. The technician at the time made no recommendation to get it checked out when I mentioned the dense feeling. A month later, I found a small lump and had my gyno check it. She just told me it was a cyst and not to worry about it (I later sent a complaint for negligence), no testing done. Seven weeks later, still concerned, I went to my primary who ordered an ultrasound which finally came back as suspicious, and then confirmed as ILC on a biopsy. Demand the ultrasound and/or MRI since ILC does not show up on a mammogram. Better safe than sorry. Lucky for me, mine was only 8mm, 0 nodes, 18 RS, but risk lowered on Adjuvant!Online

IDC here. Simply went in for my normal, routine annual screening mammogram, no symptoms whatsoever. The next morning I got a message in my patient portal inbox that they found a "focal asymmetry" not present in previous mammos, and to make an appt. ASAP for diagnostic spot-compression mammo and ultrasound. My gyne called me that aft. I wanted to come in right away, but the soonest they could get me in was a week later--and even that took some string-pulling. The imaging confirmed something not likely to be a cyst--BIRADS 4, “suspicious for malignancy.” Had biopsy 2 wks later (was traveling) and my gyne’s office called the next night with my diagnosis. Weird thing was that I was in the best shape and (otherwise) health I’d been in decades. BC is a sneaky little bastard--glad they found it before I could have.

My IDC would never have been picked up if it weren't for my persistence and simply following my gut feeling.  I was diagnosed 2 weeks after a clear mammogram and a clear whole breast automated ultrasound. A student doctor examined me during my physical and noticed a tiny lump (6mm).  This was dismissed by my doctor as a cyst due to the fact that I just had my two annual screenings that showed nothing.  I then went to another doctor for a second opinion which led to a diagnostic US, biopsy and diagnosis. I can't help but wonder was the lump missed on both tests or was it on the small side for detection? I'm just grateful that it was close enough to the surface to feel.

I found mine during a self exam.  Just felt a difference from one breast to the other.  One area felt thicker than it did on the other breast.  Turns out I had 6 tumors in all in my left breast.   ILC is a sneaky sucker.  My advice?  Anything different from one month to another....anything....have it checked out.

I had a palpable lump. Had an ultrasound that came back highly suggestive, so had another mammogram that showed nothing. A biopsy came back with benign fibroid, that was corrected a day later with invasive ILC. It was under the lump, I guess. Anyhow, it never did show up on mammo or MRI. They originally thought it was 1.5 and turned out to be 4.5. But that is just the size of the 1st piece they took out in the first lx. I had 2 more lx, and finally gave up (no clear margins). After the mx they said it was in all 4 quadrants and in the nipple. Personally, knowing what I know now, and being 65 at dx, I would have insisted on both off and recon. As it is, I have had DIEP on one side, and if it shows up in the contralateral breast, I'm hooped for recon. Will have to decide on implant or go flat. I couldn't go through another major surgery that an autologous recon demands. I am really disappointed in my BS, who wouldn't give me that option.

Well I did it! I demanded further testing and got an MRI! Next Tuesday morning. At this point, any findings are welcome. Just please, please, pleeeeze don't tell me there is nothing there again. Fibroadenoma, DCIS, ILC, cysts, ANYTHING would be better than nothing. My thermogram detected 4 hot spots (the same areas I identified as being problematic) and gave a score of T-3. It's not a diagnosis, but it says, "O.k. There is something here." We are supposed to start trying for our last child in August, so the urgency to figure this out is very pressing to me. You ladies have been so helpful, thank you for all your experiences and insights. I'll keep you posted.

I felt a small pea size lump in the 1 o'clock position of my left breast, went to my doctor and she could not feel it. Thankfully, she ordered a diagnostic ultrasound along with a screening mammogram. It did not show up on my mammogram and only showed on the ultrasound. It turned out to be 2.1 cm and one lymph node was positive. I elected to have a double mastectomy - the left breast had 2 other small tumors that did not show on the ultrasound or the MRI. The ILC was also present in 5 of the 19 lymph nodes taken. Just started chemo 4 weeks ago. If I had not felt it nor acted on it and if my gynecologist had not ordered the diagnostic ultrasound, I would have gone merrily on my way for another year for a screening mammogram which showed none of it. The place I had my mammograms did not have the 3D technology.

I had dreams, 3 nights in a row and "knew." I kept pushing to get it checked.

My (then) hospital just received a breast MRI machine and they said it was the "gold standard." Sure enough, something lit up. Even though it can produce false positives and my radiologists and doctors were convinced it would be b-9, I insisted on a biopsy. Yup, the dream was telling.

bump

My ILC was diagnosed after a biopsy for IDC. Thank goodness for the very small IDC tumor that led the doctors to find my very large ILC tumor. And all of this after faithfully having my mammoevery year!

I just went in for my annual and my obgyn found it. She didn't call it a lump, but a thickening. I had no idea the little booger was there and it was hard to find once I found out about it. I had yearly mammos and still ended up with a 2.8cm tumor which kind of makes me mad because it is a slow growing tumor (grade 1) which means it had to have been there for awhile. I think previous mammos missed it. Grrrr..

Nancy

I've been having regular mammo for 5 years starting at age 40 due to family history. I had one 6 months prior to diagnosis. Nothing seen at that time. Iwoke up in the middle of the night to go the the bathroom and scratched in my arm pit area and felt a large thick hard spot on the side of my breast. After gyno, mammo and biopsy was finally diagnosed with ILC. Mastectomy done and had a 2cm tumor. I'm glad I had small breasts and could feel it!