Please help ILC

Hi Kayla,

Lobular cancer is dxd in about 15 % of women with BC. I have ILC. This page from the main site here has lots of good information.

Lobular cancer grows more as a thickening, rather than making a lump. I had checked my breasts every month since I was a teen and never felt anything different. It has often been called an older woman's cancer, but I was 44 when dxd, and my medical team seemed to think it could have been there for 10 years.

As for symptoms, well there really aren't any, but that is the case for most cancers until you find a lump or it is found by screening. With your family history, perhaps you need to consult a good doctor and start from there. Best wishes.

Hi Kaylay. I was on vacation and notice a pain in my breast. I didnt pay attention at first but i eventually rubbed the area and i felt this strange thickening. I wirk in radiology and when I went back to work I had several mammo techs examining it. They called the breast center and git me an appointment for mammo, us, and biopsy. I went to work two weeks later and printed out my pathology report. ILC. Take care and know what your breast should feel like. I didnt and i had like a 3.5. cm mass that I was also told had probably been growing fir 10 years too

Hi Kayley - You are smart to be asking questions and to be proactive for yourself. You'll read a lot that ILC is seen in older women but there are plenty of not so old women on the boards who were diagnosed with ILC. Still, 28 is young to have BC of any kind. Has your doctor spoken with you about genetic testing? If not, I would ask him/her about it, especially BRCA 1 and 2 testing. If I were you, I would look for a doctor at a breast center. You can usually find them at teaching hospitals but at some private hospitals too. If you need help finding one, send me a private message.

Kaylay, I forgot to tell you I was 42 at diagnosi

Kaylay, you should be working with and being screened through a high risk breast clinic at a major university medical center who can determine exactly a schedule and types of screening for you and at what ages. You should probably have genetic counseling.

Also, even if you have a genetic predisposition to breast cancer, don't get hung up on it just being ILC. Because you have an inherited dispostion doesn't mean you would get the exact same kind of cancer your mom did. You would probably be at least, if not more likely, to develop IDC.

Jules

Not useless. Even with dense breasts abnormal calcifications can usually be seen which really cannot be seen on any other test and can help direct the ultrasound. Although in general younger women have denser breasts they don't always, and at least one view of each breast should be obtained somewhere along the way in your workup.

My oncologist claims that about 80% of bc is caught by mammos and 20% by ultra sound. But that's a generalization in terms for bc. I found mine myself after just getting a clear mammo, ack....I felt so protected but who knows how long it was there, hiding? I found it through a breast self-exam, because I was skinny enough to feel it and it was nearly on my ribs, in the tissue under my arm.

As it was I had 5 "clear" mammos before I found it; the last mammo finally reported dense breasts which hide ILC because of the different way it grows. I wish I had known earlier that dense breasts hide bad things. I would have demanded an US or an MRI.

Finally, as for rarity of ILC--it's the second most common form of breast cancer, which kind of flips the rare designation on its head, doesn't it?

Everything the above posters have written is good advice. Genetic testing is the way to go, and then I think you can more easily ask for better screening than a mammo.

Claire

Jkay,

My breast cancer was found because of something suspicious which resulted in an ultrasound. Then biopsy and MRI and another biopsy. I had several mammograms in a row before the breast cancer was found. I asked a radiation oncologist about just skipped mammograms and going right to ultrasound or MRI. He told me that ultrasound is much more useful and helpful after a mammogram. He also said that MRIs result in false positives. The new digital mammograms are much improved.

I agree with the others. Find a breast specialist in high risk for breast cancer and potential hereditary breast cancer. Push for genetic testing. There are now many more markers than just BRCA 1 and 2.

Kare