Rare Types Of Breast Cancer

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.