anyone with a 6cm ILC tumor and only 1 node with cancer?

well surgeon took out 7 cm during lumpectomy and i had no clear margins in any direction ... path report from mast indicated a lot more was found but fortunately large margins were obtained ... had micromets in sentinal node and other 3 nodes they removed were clear ...

Hey Agnes,

I had IDC, not ILC, but my tumour was 8cm! With 2 nodes. I couldn't believe it had become so big, I remember when the GS told me, I was shaking with fear, but it's not the be all, I got over it and just do everything now to minimise my risks of it coming back 😀

agnes i had adriamycin (every two weeks), followed by taxol (every two weeks), followed by cytoxan (every two weeks), then 33 rads, then 10 years of arimidex ... onc took me off the arimidex last summer so flying solo

At diagnosis my ILC was estimated to be less than 2 cm but after lumpectomy it was found to be 5.9 cm with cells overflowing one sentinel node. Margins were relatively but not absolutely clear. My surgeon said it was often difficult to estimate the size of ILC prior to surgery because it does not form a discrete lump.

My tumor was 5x4 cm and the sentinel node was negative. I just had a PMX of the other side and there was no cancer found. I am cautiously optimistic that I am cancer free, but also very happy to be taking Letrozole for the next 5 years to hedge my bet.

my ILC was 4.9cm and I only had one node affected. That node had extra capsular extension. Neoadjvant chemo (a/c then taxol) shrank that node down significantly. Hang in there --carlymel is right--lobular is slow growing and large tumors are not uncommon - the finger-like growth pattern doesn't make if feel like a lump, a grape, a marble that the Komen group has taught everyone to look for when checking for BC.

I had 3 tumors of ILC in one breast all about 4.5, this was my second time in the right, then I had IDC in my left, at the same time.... BMX. The thing is they found the IDC a first...that lector finding all the other ILC.

Hi I was diagnosed initially with a 1.5cm tumour but after surgery it was 9.6cm ILC with 1 node out of 26 infected. I have had a double mastectomy as ILC is a sneaky one and has a slightly higher chance of infiltrating the other breast. Also because of the score on oestrogen 8/8 I had my ovaries removed and now take Letrozole as this has a better outcome with ILC. Stay positive I am 43 now it has been 3 years since my diagnosis. There is light at the end of the tunnel although it doesn't feel that initially. Good luck xx

My largest tumour was 4.2cm at the time of surgery. Imaging prior to surgery indicated it was less than 2cm; so more than twice the size. This is often the case with ILC. I had one positive node and three other smaller tumours.

As you are having chemo first you may never know the "true" size of your tumour Kamiecake. I hope the chemo does it's job and shrinks your cancer considerably. Some Oncologists believe that neoadjuvant therapy works better on IDC than on ILC.

Wishing everyone well. Donna.

Did you do an Oncotype DX test MFalabella? Those with 1 to 3 positive nodes and a low "Onco" score are sometimes given he option to skip chemo but of course other factors need to be taken into consideration.

I had a mastectomy with very good margins. I did 4 rounds of chemo but no rads. The Oncotype DX test is not covered by Medicare here in Australia meaning I would have had to pay the full amount myself. As I had multi focal disease, the positive node and didn't have the test I felt more comfortable having chemo even though I know higher grade cancers do respond better. Mine was all Grade 1.

Wishing you well. Donna.

MFalabella, I had node removal 6 yrs ago and no sign of lymphedema yet. It's not always a given that node removal will result in lympedema.

First Dr started out thinking I had 2 1 cm tumors. He also initially said I only had LCIS after doing 5 biopsies.What I actually had was a 10 cm and a 1 cm with macromets in sentinel node. The rest were clear.

Kamiecake,

It is possible that it will be larger than the imaging so far. I don't know the answer, but I think the question for you is would it make sense to remove it first, then decide on chemo or hormone therapy after you know what you are dealing with. That was my second opinion MO recommendation before I started chemo, but I went with my first MO's recommendation to start with neoadjuvent chemo, then surgery 5 months later. In retrospect, I wonder if I should have been attacking the remnants of the excised tumor and any possible micrometastesis with ovary shutdown plus AIs during these 5 months, instead of the other way around. If I had gone with this concept, we still could have decided to also attack with chemo, if indicated.

Dear JRM99,

Welcome to the community. We are sorry for your diagnosis but glad that you reached out here to our members. We hope that you will stay connected and keep posting. While you are waiting for some responses you may want to check out this link to our Main Site's information on Treatment for ILC. Let us know how things go for you. Feel free to PM us if you need any help navigating the boards. The Mods

Not doing too bad, thank you for asking. Trying to keep busy and distracted-- some days are better than others of course. Going to a pre-op appointment today so at least mentally I feel closer to surgery!