Want to hear from ILC with positive nodes.

I'm on this one.  Tumor was 1.8cm, but all 4 nodes taken out were positive.  After my surgery I asked my surgeon how the nodes looks and her exact words were "nothing looked suspicious, they weren't enlarged or clumped together."  So at that I figured I was home free, until the darn path report came back.  Originally we thought my tumor was large from 8cm-10cm.  Now that it was taken out and on the smaller side my Onc. says I am in a better position with a small tumor with pos. nodes, then with a large tumor and neg. nodes.  Not sure about the rhyme or reason to that one either, but I guess he should know what he's talking about.

Sue

Henson, i had a large tumor, 5 cm and of the 13 nodes removed they originally (Dec 06) said none involved.  Upon microscopic they found 1 of the 13 had micro node involvement.  I was just recenly dx'd with mets to the femur bone. (Dec 08)  Heading out in a few minutes to the rad onc who will have my recent PET/CT results to go over and to start rad planning.  No rhyme or reason seems to be the answer. 

 I had mast, chemo AC x 4, taxol X4, rads and followed that with a prophy mast to the "good" breast which was cancer-free.  My HER/FISH was negative but the subclass of the lobular was pleomorphic which is suppose to be more aggressive.

Sometimes this Lobular thread is quiet so hang in there.  We ALL need the support.  Hugs, Marsha

I searched for the Harvard site and can't find it.  If you have the exact site name can you send it to me? I'll keep looking.

Adjuvantonline did not put a factor in for lobular or ductal. You entered your age, tumor grade, er/pr status and node status.  I agree I think it's a bit outdated.

You are right it's a real big guess.  You hear of stories of women, men who had cancer x # of years ago and are ok today.  I recently found out my mom's brother had breast cancer twice, way back when I was a teenager, almost 30 years ago... he's now well into his 80's.

Hang in there Judy!

Sue

Judy, thanks for the site info. I just plugged in #'s.  The % rates are not much different actually then adjuvantonline. Difference is you get to put in the histological type of the tumor , but I did both lobular and ductal cause they say ductal is more aggressive and yet the rates were pretty much the same.  Sometimes it makes me crazy looking at this #'s.... I mean really who knows!?!?

Judy,

I did neoadjuvant, dd CA+F prior to my bilat. mast which I just had on 12/9 with tissue expanders.  Originally they thought my tumor was extremely large just on clinical exam. So we were out to shrink it to get a better outcome, ie: clear margins after surgery. I always knew and would have opted for anyway, a mast.  So I did 4 CA+F from Sept-Oct.  Nothing lit up on my scans including nodes so we always thought my nodes were ok.  The path from surgery came back with a 1.8cm invasive lobular along with a whole list of abnormal cells... schlering adenosis, stromal fibrosis with hyalinication, columnar cell hyperplasia, ADH, and LCIS.  So with all this my breast got enlarged and hard. So all my doctors thought this hardness and swelling was the tumor.  I see my onc. tomorrow morning for the exact treatment plan, this is cause of the darn nodes.  He mentioned Taxotere or Taxol and possibly adding carboplatin on to that. I'm not looking forward to Taxotere if he chooses that cause I have heard horror stories about it.  I probably will start at the end of next week.  Then after that I start rads. Also had extranodal extension so they'll zap my supraclavicular(sp?) node area.  Oh and between all this I go for expansion fills to my plastic surgeon.  How did you do on the Taxol??

On the BRCA testing.   I always forgot about my Uncle, so we always said I had no family history so my insurance co. did not want to pay for the testing. But I will tell them now about my Uncle and see if they will pay for it now.

Sue

Yes the 1.8cm and 4 nodes were after the 4 rounds of AC. The AC was tough especially the last one.  They assume the 1.8cm was larger prior, but no one could say how large it was.  The breast got a little smaller and a little softer after the chemo, but not much.  From what I have read I think the taxol is the stuff that will get anything that is lingering on.  My eye lashes and brows JUST came back too... oh well.  Hey I have 3 wigs that should last me another 6 months anyway. Ho Hum.

Congrats on your last rad!

Sue

Alyson,

What did they say was aggressive? I see you were Grade 2 which is supposed to be a low grade and less aggressive cancer ... was it because of the nodes.. 23.. wow. This is all just too much!  Glad to hear you are doing well today!

Sue

Hi there

There has been debate about the grade but the cancer cells in the nodes were said to be very aggressive! You couldn't feel the tumor- it was just like a shadow. It is all a very strange thing and each of use is different.

I do agree about taking all the treatment you can get. I want to live till I am at least 80.

Alyson 

Nash, my onc has close ties to the research community and was well aware back in 2006 of the studies being done which were indicating Zometa might be a potential preventive not only for bone mets but possibly all mets. I began taking IV Zometa 4mg doses every 3 months starting in August 2006 after I completed my chemo and rads.  I did not meet the current criteria of documented osteopenia/osteoporosis or Stage IV bone mets but my onc was strongly urging me to take it based on what she felt would soon be statistically proven data of its benefit in locally advanced BC.

Due to my pathology of all 23 nodes being positive it was medically presumed that my cancer had already spread but was not yet detectable by PET or CT scans.  Based on this medical opinion, I was able to have my infusions covered by insurance.  For all I know I did have microscopic mets and possibly the early intervention of Zometa has eradicated or prevented those cells from taking hold anywhere.  After 18 months on 3 month infusions my onc switched me to every 6 month infusions based on recent data showing the benefit is still provided at that dose schedule.  I will be getting my 9th infusion next week.

OK--I had 3 positive sentinel nodes. The next 20 were clear, but no one could know that until they were out, so bye-bye. One of the three positives had a 6mm mass in it--the other two had much smaller ones. I suspect my tumor has been there for some time, and is one of those "indolent" ones, to use a wonderful word that I found in one study, because it takes a while to get a mass that size in a node.

The first oncologist I was referred to insisted that if I had posistive nodes, chemo was a "no-brainer," and he proposed an aggressive AC+T regimen.  By this time I had already read enough to know that A is not particularly effective on HER2- tumors, and is also cardiotoxic. I proposed TC.  He wasn't enthusiastic. So I asked to be referred to another oncologist, and also requested  the Oncotype DX test, which is now available for node positives. The score came in low-risk-- probable zero benefit from chemo. So if you have 1-3 node involvement or even more, chemo is not a no-brainer, according to this method of assessment. Chemo benefit kicks in around the score of 20 and increases with the score.

I'm doing rads and some form of hormonal therapy, which I think has a better chance of working for me. I wouldn't recommend that anyone stop reading, because reading probably saved me a long period of ineffective, unpleasant, and risky treatment.  Just don't get too hung up on hypothetical number games. Adjuvant Online is seriously outdated, as some of you have noted, and so simplistic that I wouldn't consider it serious science.

3 tumors in breast and 8/12 positive nodes.  Next month is my 3 years since Dx.  My Tx include bilat, chemo, rads, ooph and AI's. I think we always fear a re-occurance or mets - or at least I do.

Rhonda,

I don't know if it helps, but I had an immediate mastectomy with expander and went through the implant exchange a year later. I'm a total of 2.5 yrs out from the initial surgery and 1.5 yrs from the exchange, and my radiated side held up just fine.  Hopefully, yours will too.

Peace

Bobbie

I fit in here as well.

I have a 2.2cm tumor and 4/10 nodes possitive.

I had a bilateral mastectomy on Dec 3rd with expanders.

I just had my first chemo jan 6th.

I will have radiation and ooph (and who knows what else)

My oncologist is very possitive...she just thinks AHEAD which is very nice. I believe we all have a great outlook for the future now, with all the new research.

I am on TC...had minimal problems with round 1...5 to go.

On a slightly different note...how numb are you all with expanders? I am stilll pretty numb.

robin