Infiltrating Lobular Carcinoma (ILC)

I had no idea there were "types" of breast cancer until the day I found out I had cancer. It was found in an incidental exam because I had highly suspicious looking calcifications in my left breast. In addition to the calcifications, the radiologist noticed a "density" which he believed to be nothing. I do believe if not for those calcifications which were no where in the vicinity of the density, the cancer would have just been an "area of interest," for future screening.

When I took the films to be reviewed, two different types of biopsies were done. Calcifications removed (stereotactic) and the density was sampled (core). The core biopsy is done using ultrasound and they had a difficult time finding the density. Very excellent doctor did find it and this part I remember (despite chemobrain). She was sampling the thing and she was showing me the screen so I could see the thing breaking apart. She was 90% sure it wasn't cancer. And, she was right. Statistically, lobular represents about 10% of the breast cancer.

I was called within days and told there were abnormal cells in the density and "we don't leave atypia in anyone" so I met with the surgeon. That radiologist gave me the best advice and I never forgot her words. At the time, I had no idea what she meant and this is so important for all of us. "Be Your Own Advocate." And she advised me to tell the girls I needed a quick appointment because Dr. S told me I had a bad biopsy finding.

Surgical biopsy (actually a lumpectomy) was done two months later because again, 90% of the time these things are nothing. I fell on the wrong side of the 90%. When I went for my post op appointment, I was told I had an invasive cancer. I expected bad news and I was fully prepared with a million questions. I think I expected a DCIS dx. She explained how lobular cancer hides in between the fat cells and is not a lump but rather a series of small tumors. She drew me a box and put dots inside the box. Explained clean margins and what surprised I had no questions. I remember saying that I did have tons of questions but I knew nothing about this lobular stuff.

Gathered as much information as I could and because that was a "sneaky cancer" and unlike "ductal," there was a chance (may have been as high as 30%) that it was in my other breast, I opted to have a bilateral mastectomy. The surgeon readily admitted they never catch lobular quite as early as mine was caught but this whole tiny tumor thing still bugs me today. Despite chemo, I wonder. Could there be a tumor cell still floating around somewhere waiting to make trouble? After all, I DID see the "density" breaking up on that monitor.

That was the most difficult decision I ever had to make. I researched everything I could, had genetic testing because my mom was a BC patient and still wasn't sure what to do. I REALLY wanted to be told by the doctor. But, there were options and since neither option was a clear better choice, it was solely in my hands. I do remember thinking that so many times over the next three or four weeks as I was sent for MRI's and a sentinel node biopsy. SOMEONE please tell me what to do.

I never looked back upon my choice and I was "lucky" to see a little bit of atypia and lobular carcinoma in situ in the pathology of the good breast. There was a good chance I would have been back in there with a recurrence or a second primary. At that point they would have recommended mastectomy anyway.

I had no idea there were "types" of breast cancer until the day I found out I had cancer. It was found in an incidental exam because I had highly suspicious looking calcifications in my left breast. In addition to the calcifications, the radiologist noticed a "density" which he believed to be nothing. I do believe if not for those calcifications which were no where in the vicinity of the density, the cancer would have just been an "area of interest," for future screening.

When I took the films to be reviewed, two different types of biopsies were done. Calcifications removed (stereotactic) and the density was sampled (core). The core biopsy is done using ultrasound and they had a difficult time finding the density. Very excellent doctor did find it and this part I remember (despite chemobrain). She was sampling the thing and she was showing me the screen so I could see the thing breaking apart. She was 90% sure it wasn't cancer. And, she was right. Statistically, lobular represents about 10% of the breast cancer.

I was called within days and told there were abnormal cells in the density and "we don't leave atypia in anyone" so I met with the surgeon. That radiologist gave me the best advice and I never forgot her words. At the time, I had no idea what she meant and this is so important for all of us. "Be Your Own Advocate." And she advised me to tell the girls I needed a quick appointment because Dr. S told me I had a bad biopsy finding.

Surgical biopsy (actually a lumpectomy) was done two months later because again, 90% of the time these things are nothing. I fell on the wrong side of the 90%. When I went for my post op appointment, I was told I had an invasive cancer. I expected bad news and I was fully prepared with a million questions. I think I expected a DCIS dx. She explained how lobular cancer hides in between the fat cells and is not a lump but rather a series of small tumors. She drew me a box and put dots inside the box. Explained clean margins and what surprised I had no questions. I remember saying that I did have tons of questions but I knew nothing about this lobular stuff.

Gathered as much information as I could and because that was a "sneaky cancer" and unlike "ductal," there was a chance (may have been as high as 30%) that it was in my other breast, I opted to have a bilateral mastectomy. The surgeon readily admitted they never catch lobular quite as early as mine was caught but this whole tiny tumor thing still bugs me today. Despite chemo, I wonder. Could there be a tumor cell still floating around somewhere waiting to make trouble? After all, I DID see the "density" breaking up on that monitor.

That was the most difficult decision I ever had to make. I researched everything I could, had genetic testing because my mom was a BC patient and still wasn't sure what to do. I REALLY wanted to be told by the doctor. But, there were options and since neither option was a clear better choice, it was solely in my hands. I do remember thinking that so many times over the next three or four weeks as I was sent for MRI's and a sentinel node biopsy. SOMEONE please tell me what to do.

I never looked back upon my choice and I was "lucky" to see a little bit of atypia and lobular carcinoma in situ in the pathology of the good breast. There was a good chance I would have been back in there with a recurrence or a second primary. At that point they would have recommended mastectomy anyway.

It's a great question! To address first the issues of having lobular, I'm not sure I ever did find anyone else with it, nor do I think it mattered much since the treatment protocols are similar to those of patients with invasive ductal carcinoma. (Today they are often classified together as Luminal A, Luminal B, and so on anyway.)

As for where I turned, I think the most significant issues for me related to having been diagnosed at a relatively young age. My first concern was helping my son understand what was going on, and that took resources with particular knowledge, that frankly I did not find early enough. Today things are much better in that regard!!

As for my own support...my friends and family stepped up in truly moving and inspiring ways. In addition to a husband who never left my side, I had a tight circle of friends who were there for me each step of the way. That said, sometimes we need people who have "been there" when it comes to cancer...

One of the very best resources I found was the online community at the Young Survival Coalition (http://www.youngsurvival.org/). In addition to being a great place to ask questions (Talk About Health wasn't around!), the women there fully understood the complexity of parenting through cancer, feeling "too young," facing fertility issues, the limited treatment options for pre-menopausal women, building a career through cancer and so on.

Sometimes, after treatment, there is a drop that patients experience, and that was when I sought a local support group at weSPARK (http://wespark.org/). It was as inviting as walking into someone's living room, with services that ranged from traditional support groups to reiki, tai chi, meditation and reflexology, to support groups for my husband and son. They even have a gym next door that helps support women thought treatment and recovery! They also gave me the chance to "pay it forward" though support groups and scrapbooking classes I was able to lead.

Unfortunately they can be hard to find, but there are some amazing resources out there...and the online community makes them accessible, even for people in the most remote of areas. It's not always easy, especially as women, to acknowledge that we can't do it all alone. I try to remind women that in this, like it most things, we do best when we are in community...that seeking support is not "taking" but a process of give AND take. It's a great question! To address first the issues of having lobular, I'm not sure I ever did find anyone else with it, nor do I think it mattered much since the treatment protocols are similar to those of patients with invasive ductal carcinoma. (Today they are often classified together as Luminal A, Luminal B, and so on anyway.)

As for where I turned, I think the most significant issues for me related to having been diagnosed at a relatively young age. My first concern was helping my son understand what was going on, and that took resources with particular knowledge, that frankly I did not find early enough. Today things are much better in that regard!!

As for my own support...my friends and family stepped up in truly moving and inspiring ways. In addition to a husband who never left my side, I had a tight circle of friends who were there for me each step of the way. That said, sometimes we need people who have "been there" when it comes to cancer...

One of the very best resources I found was the online community at the Young Survival Coalition (http://www.youngsurvival.org/). In addition to being a great place to ask questions (Talk About Health wasn't around!), the women there fully understood the complexity of parenting through cancer, feeling "too young," facing fertility issues, the limited treatment options for pre-menopausal women, building a career through cancer and so on.

Sometimes, after treatment, there is a drop that patients experience, and that was when I sought a local support group at weSPARK (http://wespark.org/). It was as inviting as walking into someone's living room, with services that ranged from traditional support groups to reiki, tai chi, meditation and reflexology, to support groups for my husband and son. They even have a gym next door that helps support women thought treatment and recovery! They also gave me the chance to "pay it forward" though support groups and scrapbooking classes I was able to lead.

Unfortunately they can be hard to find, but there are some amazing resources out there...and the online community makes them accessible, even for people in the most remote of areas. It's not always easy, especially as women, to acknowledge that we can't do it all alone. I try to remind women that in this, like it most things, we do best when we are in community...that seeking support is not "taking" but a process of give AND take.