Join Us

We are 219,622 members in 84 forums discussing 161,608 topics.

Help with Abbreviations

Topic: chemo with intermediate to high oncotype

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

Posted on: Feb 18, 2019 07:18AM - edited Mar 7, 2019 08:36PM by everetta

everetta wrote:

I am 68 and diagnosed with a 1cm lobular carcinoma, ER+, PR-, HER2-, nodes clear, stage 1, grade 2. Chemo was not recommended till got oncotype score of 31, then repeated and got score of 27. Does the fact that it is lobular make it different. Some doctors recommending chemo some saying only 1-2% benefit and not worth risks. Other saying 3-5% benefit and up to me. Does anyone know about lobular and PR- factoring in?

Log in to post a reply

Page 1 of 1 (9 results)

Posts 1 - 9 (9 total)

Log in to post a reply

Feb 18, 2019 09:03AM dtad wrote:

Hi there. Not sure about the PR- but ILC definitely responds better to anti hormone therapy than chemo. Of course up to you but at your age those risk percentages do not seem very high and worth the risks. Good luck with your decision.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Feb 18, 2019 10:43AM everetta wrote:

Thanks so much for the response. I too have heard that ILC does not respond to chemo as well as IDC does. Did your doctor recommend chemo. Sounds like at surgery they found a second tumor and then you had a mastectomy. Did you doctor recommend hormonal therapy and if so which ones. I think there are certain ones that ILC responds to best. Unfortunately most of the data is on IDC and very little on ILC. Thanks for your help and I hope you are doing well.

Log in to post a reply

Feb 18, 2019 12:00PM vlnrph wrote:

I supplied an answer on the stage I forum but will repeat here that lobular CA tends to be multi-focal/centric and I always expected mine to show up contralateral (in the other breast). I assume Everetta had an MRI prior to her lumpectomy and that no additional areas of concern were seen.

A second opinion, from an academic or NCCI facility may be helpful.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
Log in to post a reply

Mar 7, 2019 06:11PM jessie123 wrote:

I'm like you --- waiting on the oncotype score to determine if chemo is needed. Mine is also lobular 2.5cm and grade 2. Did you get a ki-67 score -- that is supposed to tell how fast growing the cancer is -- mine was low. You are progesterone negative and HER2 positive which may have something to do with the need for chemo. You might want to research that before making a decision. Are you as exhausted as I am making all these decisions? They seem too important for doctors to say "it's our decision" .

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Mar 7, 2019 07:23PM - edited Mar 8, 2019 12:02AM by ShetlandPony

I think we need to be very careful about making blanket statements such as “ILC does not respond well to chemo". Classic ILC is ER+ PR+ Her2Negative. Grade 2 is typical. But Everetta's pathology report shows PR negative. PR negative is more likely to be Luminal B, rather than the less aggressive Luminal A. So I would not discount chemo simply based on lobular type. Another thing to know is that as cancers develop they mutate, so their response to particular drugs can change. (I have mbc ILC that has responded dramatically to chemo.)

Regarding hormonal therapy, Studies of ILC in postmenopausal women have shown a better response to letrozole as opposed to Tamoxifen. So it is assumed that any aromatase inhibitor (letrozole, anastrazole, probably exemestane) would be more beneficial than tamoxifen. An aromatase inhibitor is usually prescribed as the standard for postmenopausal women anyway. (I'm not home to look up citations but if you need them let me know. I think one was a study that starts with BIG... )

(Edited after learning that Everetta’s pathology said Her2 negative, net positive.)

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
Log in to post a reply

Mar 7, 2019 07:26PM ShetlandPony wrote:

Jessie, I fired my first medical oncologist, in part because when there was an important decision to be made, he would say, “It’s up to you.” Um, no, I am paying you for expert advice. Excuse me while I go get a medical degree and become a board certified oncologist, then I’ll come back and let you know what I’ve decided. Second opinion, Ladies. Preferably at a NCCN center.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
Log in to post a reply

Mar 7, 2019 08:34PM everetta wrote:

If I wrote that it is HER2+, I was mistaken, it is HER-, but it is ER + and PR-. Yes the decision is very hard. The main reason for the oncotype to be 31 or 27 (it was redone) is because it is PR- which I think makes it more aggressive. I have delayed doing chemo but today I heard although it is ideal to do it in the first 3 months 4 or even up to 6 still is effective. I have had a hard time making decision but I think I will try CMF since the recommendation is not strong, using a less toxic chemo may be the compromise.

Log in to post a reply

Mar 7, 2019 11:48PM Meow13 wrote:

everetta, you could consider anastrozole instead of tamoxifen more effective against pr-.

https://www.cancernetwork.com/articles/anastrozole...


Log in to post a reply

Mar 12, 2019 03:16PM trinigirl50 wrote:

Pr- usually means the tumour is more aggressive and possibly luminal b (though not definitively) which responds better to chemo than classic ILC ER+ PR+. Anyway, it is a tough call, I don't envy you that decision. However if you do decide to go the anti-hormonal route, then Letrozole has performed better for PR- cancer. Although there isn't a huge amount re ILC and PR- status, I think I've read them all.

Good luck with your decision.

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/13/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes

Page 1 of 1 (9 results)