Question about ILC

zayb

I haven't been diagnosed with ILC but I have been diagnosed with some type of highly Er/PR+ Her2- BC on my right side. Almost 6.5 years ago I had invasive triple negative on the left, successfully treated. A little over 5 years ago I had a right mastectomy which found several but very small in with cancers and I believe some atypical hyperplasia. I had good margins, no further treatment.

In July I felt something on my right side, had a FNA biopsy that came back positive for cancer. I then had surgery which removed a grossly enlarged lymph node plus 3 other nodes, all negative for cancer. But, according to ultrasound the big node that was FNA biopsied is still there. It is not palpable and is not what I was feeling in the first place. I am having a hard time believing I had a recurrence directly to the node after in situ cancer and think there must be a local recurrence to go with this enlarged node. I am thinking maybe it is ILC since nothing is palpable and that maybe there is a local recurrence there. Has anyone heard of someone recurring with ILC rather than IDC after a mastectomy? I was wondering how ILC presents after a mastectomy? Is it difficult to detect? My impression was that with a mastectomy anything would be easy to feel, but had I not had another lymph node become enlarged (a noncancerous one) I wonder how long it would have taken to detect the cancerous lymph node. Drs. Think it is good that these nearby nodes and all the tissue were clear of cancer but the whole thing is still baffling. I am going to ask at the surgical consult tomorrow, but I was just wondering if anyone had ILC either after a prophylactic mastectomy or a mastectomy for in with disease and how it presented? Was it hard to detect?

KSil

Hi Zayb,

I had a prophylactic double-mastectomy after having DCIS in my left breast in 2005. It was stage 0, and I thought I was in the clear.

8-years later (in April of 2013) I discovered what felt like a small pea-sized bump in the left breast. I was almost certain that it was scar tissue, but went to my BS for peace of mind. Turned out to be a new primary; and it wasn't ductal. I had a 6 cm ILC tumor in the small amount of breast tissue that remained. The ILC spread to 4 of my lymph nodes (with extracapular extension) which meant that cancer was spilling out of the nodes into the surrounding breast tissue. I had no pain, or symptoms. In retrospect, I did feel an occassional tingling feeling in that area, but I thought it was nerve regeneration (wishful thinking perhaps). I also think I may have felt a thickening upon finding the pea-sized bump, but it was before I even knew to look for a thickening, as I really didn't research ILC. Big mistake on my part. My surgeon ended up removing my entire pedicle tramflap, which the ILC tumor was growing in. She had never removed a tramflap prior to me. That was almost 2 1/2 years ago and I have been fine so far.

Best of luck to you. Hugs...

Karen

zayb

Ho KSil, thanks for your response. I am scheduled for surgery in two weeks. They have ordered a modified radical mastectomy, even though I have already had a mastectomy. I don't have reconstruction either. The surgeon is going to revise my mastectomy, remove the excess skin that was left when my expanders were removed, then remove all the nodes. They told me the enlarged node is a level 1 node. I have already had 4 level 1s removed and they were all negative, so I think this is good, especially since they were up higher, closer to the armpit than this node. The node is long and skinny/narrow/flat-ish but they said it looks like a single node. Nobody can feel it, even though it is right there when the ultrasound thing is placed in the area. I will be glad when it is finally removed. I think it was found completely by accident because I had another palpable noncancerous node.

zayb

I did ask them about ILC and they couldn't tell from the FNA biopsy, but they did do whatever test there is that showed it was breast cancer/cancer that started in the breast.

KSil

Hope all goes well with your surgery, Zayb.

I often think that there were probably a few LCIS cells that were left behind after my first mastectomy because I did have a small area of LCIS in the mix with the DCIS. But since my DCIS was a 3 cm, high-grade tumor, with comedo necrosis, that trumped the LCIS from what I gathered, and I never really was concerned with the LCIS. I was so terrified of the DCIS, and ultimately it was the LCIS that ended up becoming invasive. Bottom line, I will never know if my ILC was residual cells, or a new primary.

Sending you positive thoughts for your surgery.

Karen