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Topic: Choosing No Chemo

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Aug 2, 2008 06:20PM

MazeDancer wrote:

Does anyone know any studies about ILC prognosis without chemo? Using (hormone) drugs and radiation only? My friend has ILC, got clean margins with a lumpectomy of a 1.5 cm mass. She had clean sentinel node on the table, so they put in the temporary mammosite balloon. But subsequent test showed positive sentinel. Balloon out. Then back for axillary. Zero nodes were positive. All of them clean and clear. 

She doesn't want to do chemo therapy. Thinks it may only change from 80% average recovery to 89% and prefers the risk to side effects. I found one Lancet study that seemed to indicate a larger risk, but wanted more. I also found one study at MD Anderson by a Dr. Cristofanilli on neoadjuvant chemo with ILC being proven not necessary. And some tantilizing quotes about gee, this seems to be a different kind of cancer we should think about treating it differently. But can't find any solid info anywhere else. Didn't see further clinical trials on MD Anderson site. Went and combed through the San Antonio presentations. But didn't see anything. Any ideas? (p.s. I'm helping my dear friend because, fortunately, I can at least a little, because I'm used to reading medical research studies from consulting with non-profits.) Last resort we'll call Cristofanilli and see if he does phone consults. Many thanks for all assistance.

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Aug 3, 2008 12:36AM - edited Aug 3, 2008 12:39AM by nash

Hi, Maze. A positive sentinel node will pretty much buy chemo, regardless if it's ILC or IDC. You're right--there haven't been any further studies done on ILC and chemo after that one by Dr. C.

The reason a lot of ILC probably responds better to HT than to chemo is b/c a lot of ILC is grade 1 and hormone positive. I had a grade 2, pleomorphic ILC, which is considered the equivalent of a grade 3 IDC (there's also some debate among pathologists as to whether ILC should be graded with the SBR scale like IDC or not). Grade 2 and 3 tumors respond better to chemo than grade 1 tumors do. 

We have some ILC girls on this site who have had neoadjuvant chemo and had their tumors respond, even grade 1 tumors. So it's not an absolute thing that ILC should not be treated with chemo. I had 4 doctors tell me I had to do chemo, partly b/c of age (38) and tumor size (2.7cm), even though I had negative nodes. 

How hormone positive is your friend's tumor? If it's expressing ER/PR in the 80-90% range, it may be a good course of action to go straight to HT. Mine was in the 30-50% range, depending on the sample, so that was another reason I wasn't comfortable with HT alone.

Have you plugged her numbers into Adjuvant Online? If you haven't, you can access it at www.adjuvantonline.com. It's a calculator that will give you the benefit of chemo and HT, both alone and combined.

I'm not sure if Oncotype DX can be run if there's a positive sentinel node--I think that still may be in trial right now, but you can ask her onc if s/he'll run it anyhow on her tumor. That test will give a score that puts the patient in a low, medium or high risk of recurrence category. Low scores also indicate that the tumor is hormone sensitive, and will respond better to HT than chemo. Conversely, a high score tumor should have a good response to chemo. I was an 18, which is the low end of the medium risk category, so my Oncotype really didn't help much. But I did have one onc tell me that if it came back low, say under 10, that he'd put me on HT only.

So, basically, the things to consider are: how old is your friend, how hormone positive is the tumor, what is the tumor grade and what does Adjuvant Online say? Also see about the feasibility of Oncotype DX with the positive SNB.

Don't know if Dr. C does phone consults--he may. I wanted to go see him b/c he's the only onc in the country with a clinical interest in pleomorphic ILC, but then I met a woman who sees him for her Stage IV PILC, and she said that he doesn't make a big deal out of her subtype at all. So for all I know, he's taken to lumping ILC in with IDC like the rest of the onc world.

Good luck to your friend--she's lucky to have you helping her! 

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Aug 3, 2008 02:54AM MazeDancer wrote:

Nash, What excellent info. Thank you, thank you. Didn't know about adjuvant online, will go there. And will get the percentage numbers on how much positivity of her nodes.

Oncotype DX is currently not used for a postive sentinel node. (They don't really have the research with positive nodes.) But their online "is this right for you" quiz responds with a hedgey this may be right for you talk to your doctor. So maybe, one day, they'll do more research, if only in the hopes to sell more. 

Enormous gratitude for your kind help.

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Aug 16, 2008 11:26PM cshamber wrote:

I'm sorry to butt in to this coversation, but it just happened to catch my eye. They have ordered a oncotype for my mother and she does have a positive node. I don't if there are different types of tests or not?? We are really new to all of this, but I know for sure they are waiting for a company from Ca. to contact her to see if her ins. will cover this test. They said if her number is low enough they do not want her to do chemo as they feel there will be no benefit.
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Aug 19, 2008 02:26PM nash wrote:

cshamber--I know some oncs are ordering Oncotype with a positive node, and it's in trial, too. Here's a link to some info on Oncotype with positive nodes:

professional.cancerconsultants... 

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain

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