Large ILC Tumous

I didn't have the large tumor but would like to hear how the neoadjunct chemo is working for your ILC. Has it shrunk the tumor? What were your other stats?

sandogger....I am asking about the chemo because much of what I read says chemo doesn't work for ILC. Since you are having this before surgery you will know if the chemo works. What was the grade of your tumor...1,2,or 3? I would be interested to hear what size it shrinks to after the chemo.

sandogger...What type of chemo are you being given? I am interested since you are being treated by the best. I live in small town Wisconsin and am getting the best offered here, I hope my onc is up to date on everything. I had dose dense 4 AC and dose dense 4 Taxol. This was done after my mast. I had 25 tx radiation. I am now on arimidex.

sandogger...I live in Wausau. I wish you well. I was happy to hear the ACT combo worked on you. They do not stage you usually until the surgery is done. They need to know what lymph node involvement there is. I am 57 so I had already hit menopause so I didn't experience the hot flashes. I had a few when I started the arimidex but that has stopped. I have been very lucky since the chemo went very well for me. I am now having some pain in my other breast so I am off to the onc today to have that checked out.

Just came from the oncs. The pain I was feeling is a problem with a gland. He isn't sure if it is from starting the arimidex or something else. We talked a lot. He said getting rid of the other breast would not increase my survival odds. I really hate when they keep bringing that up. But if mentally it would make me feel better we can get rid of it. I have my 3 month follow up early March so told him I will think about it until then. I am still leaning towards having it removed. I wish I would have done that intitially since I wouldn't be facing another surgery.

My ILC tumor was large (5.2 cm, as I recall), but I had a bilateral mastectomy so didn't have neoadjuvant therapy.  Although there wasn't any cancer in the other breast when they removed the tissue, I knew that it often recurs in the other breast and didn't want to take the chance.

My onc felt sure I would need chemo, but since I had negative nodes and was her2 negative, when the Oncotype Dx score came back, it was only 11, so I didn't need it.   I think that shows that even with a very large ILC tumor, it isn't necessarily as serious a situation as a smaller one that has other "issues" involved. 

My ILC was found in aug 08. The MRI showed a 7 cm tumor. Nuclear grade 1. After one AC treatment my tumor was measured at 1/2 its original size. It very quickly became non palapable. My repeat MRI, done after 4 rounds of AC showed only a tiny shadow of tumor, not clear or distinct, and therefore hard to measure by the radiologist. I, too, heard that ILC didn't respond to chemo like IDC....but that just wasn't the case with me. I have since had a whole bunch of Taxol AND taxotere. I am curious to hear what the surgeon finds when I have my bilat next month. I'm betting a whole lotta NOTHING!!  

Sanddogger Hello!  I was diagnosed with ILC back on 22 July '08.  I am 56, I am both estrogen and progesterone positive, and HER/2 positive.  My tumor was very, very large, 10 cm and highly vascular, this thing grew very fast!  I was given neoadjunct chemo and it did shrink my tumor a lot. After chemo it was about a fourth the size, no hard areas left with most of the swelling gone.  I had 12 weeks of chemo (Taxol and Herceptin) and then another 12 weeks of cytoxon, Epirubicin, 5-FU and Herceptin once every 3 weeks.  I just had a modified radical mastectomy and will find out in about 8 days exactly how much cancer was left.  Chemo was tough, Taxol gave me really bad muscle and joint pain, but I took it one treatment at a time.  Doctors gave me anti-nausea medication which worked wonders and I took it at the first sign of nausea, that way it didn't get its ugly foot in the door.  I will find out next week if I will have any more chemo.  Hang tough, sometimes it seems like it is endless......  Just take it one step at a time!

I was dx'ed in 2003 with ILC.  The only test that dx'ed was a needle biopsy; no imaging tests showed anything (mammogram, ultrasound, cat scan, pet scan, and bone scan...nothing showed).

I did neoadjuvant chemo to shrink the mass that measured from the outside top quadrant 10+cm's.  4 AC followed by 4 Taxol, bilateral mastectomy (by choice, left breast was prophylactic), 28 rounds of rads...no reconstructive surgery.

This May (the 13th), I will be completing 5 years on arimidex.

I'm doing well, thank God...and as far as I'm concerned, chemo saved my life!  It shrunk the mass to the point where the pathology reports after surgery only showed residual tissue...goes to show you that chemo works! 

Hi Sand:  I have Stage IIIA ILC, triple negative in left breast with some clinically positive nodes.  I did neoadjuvant chemo for 4 months, the first week of each month I was given epirubicin, cytoxin and abraxane.  The following two weeks I was given abraxane only.  Other than low white counts and a bout with pneumonia in Dec. I had no bad side effects.  MRI in Jan. 09 shows NOTHING!  They cannot find the tumors or nodes.  A follow-up magnified digital mammo with ultrasound showed the same thing.  I'm having bi-lateral mast. on Feb. 23, followed by more chemo and radiation.  Chemo DOES work on ILC.  I don't know where the information saying it doesn't is coming from.  TAKE HEART!  If you have ILC, chemo can work for you.  Stay Strong!   

Ok, I got my path reports today from my surgeon. The tumor was completely gone in the breast tissue. Originally it has been 7 cm!!  However, of the 11 lymph nodes removed, 7 of them had cancer cells in them. The doctor couldn't be sure it that was live cancer cells or dead scar tissue that was found in the lymph nodes. In any case, now i get Rads!! yippee skippee.(just kidding)

Hey Peggy,

i was a little relieved...but actually the 7 lymph nodes sorta put a damper on my happiness. My original PET scan only showed 4 nodes involved, so i was thinking there would be fewer than that on my path report. Oh well.

My Cali Grl is cuz I was born and raised in California. I only moved to Omaha, NE in 2004. I always use my email address for my log on names....and cali grl has been my email for many years now. It's just kind of stuck.

hugs to you,

Stacy