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Topic: Update and oncotype score received

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

Posted on: Apr 23, 2020 06:16PM

HelloItsMe789 wrote:

I posted here in Feb/March about my initial PLCIS then ILC diagnosis.

I had a BMX last month, got the drains out a couple of weeks ago and have been feeling well physically. Mentally is another story. Sleep is not so good, I was taking supplements that may have been helping that and I'm afraid to take any these days, or maybe I'm still off scheduled from the surgery.

Anyway, my surgeon called with my oncotype score today. I haven't seen the report and I have my first oncologist appointment next week. Also here is my pathology:

Oncotype 19 (no idea on KI67, surgeon just said this score typically means no chemo)

I am 55

Both left sentinel nodes were clear

Right breast was clear

AJCC Anatomic Stage: IIA

AJCC Prognostic Stage: IA





pT2 m, pN0sn


Largest tumor: Histologic Grade (Nottingham Histologic Score): Nottingham Score

Glandular (Acinar) / Tubular Differentiation: Score 3

Nuclear Pleomorphism: Score 2

Mitotic Rate: Score 1 (0-7 mitoses/10HPF)

Overall Grade: Grade 2 (scores of 6 or 7)

The other three say this: Glandular (Acinar) / Tubular Differentiation: Score 3

Nuclear Pleomorphism: Score 1

Mitotic Rate: Score 1 (0-7 mitoses/10HPF)

Overall Grade: Grade 1 (scores of 3, 4 or 5)

Microcalcifications: Present in pleomorphic LCIS

Estrogen Receptor (ER): Positive 6-8/8

Progesterone Receptor (PgR): Positive 6-8/8

HER2: Negative: 0

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Apr 28, 2020 06:01PM beach2beach wrote:

That's great news. Do you feel good with the idea of no chemo? One of the AI's (if you are post-meno) or tamoxifen, would be the next step then.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 28, 2020 07:54PM HelloItsMe789 wrote:

I'm not sure how I feel. I've heard of people who did pretty well on chemo, and of course have heard horror stories. It would be great not to put my body through that. But I guess I feel like I wouldn't be doing enough? From what little I know, my low Mitotic number means chemo wouldn't do much on any random cells.

I do expect a hormone blocker of some sort is the next step. The thing that worries me is they keep saying "no scans" since I had a double with no reconstruction.

Really wish I knew what caused this so I could manage to get through the next 30+ years without worrying about it coming back!

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Apr 28, 2020 08:30PM farmerlucy wrote:

I found through the years that often one answer lead to another question. I was completely devastated when I received my upgrade from ALH/ADH to IDC. I drove myself crazy running numbers, over and over and over. In the end the passage of time turned down the blaring of BC radio in my mind. You’ll get there. I promise. One foot in front of each other. Feel what you feel. Sorry you received this nasty surprise. I get it.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Apr 29, 2020 12:06AM BCat40 wrote:


Fellow ILCer here; I've read that since ILC is so slow-growing, it doesn't respond well to chemo anyway. So you're not missing out much by skipping chemo. :)

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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Apr 29, 2020 08:39AM edwards750 wrote:

Tough call since you want to throw everything at the beast but if chemo isn’t beneficial why put yourself through it? I dodged it because my Oncotype score was 11. 8% chance of a recurrence. 9 years out this August God willing.

I took Tamoxifen for 5 years. It’s no walk in the park but it was manageable for me. A lot of women couldn’t tolerate the side effects. I was lucky.

Good luck.


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Apr 29, 2020 08:57AM ctmbsikia wrote:

I would feel Ok with no chemo. The difference in benefit may only be 1-2% and not worth the risk of the side effects. Especially with no nodes involved and being her2 negative. I had lumpectomy so I still have imaging. Your oncologist will follow you closely and I hope you do fine taking the AI. If you were to ever get some crazy symptom going on they will order a scan of some sort. Best wishes to you!!!

My score was 17 and I had the mixed type tumor. Grade 2. 12% was my recurrence with 5 yrs on AI and 1-3 positive nodes. Chemo would have changed that to 11%. I was grateful to not have to do it.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Apr 30, 2020 09:12PM HelloItsMe789 wrote:

Thanks for the replies! My oncotype result never made it to the oncologist so she just went off the 19 when we talked. She said no chemo, and no radiation (I had a double). She's doing labs to make sure I'm menopausal and then will prescribe an AI if I am. Not sure which yet.

She is ordering a bone density test as well too, and said we'll do another in 2 years.

She did say the oncotype was based off my "worst" tumor which was the 21mm one.

Diane - I wish I had an 11! I feel that 19 is on the high end of 0-25 - or maybe it would be a grey area. I'm still shooting for a second opinion. She did say she has other ILC patients and they are doing well.

She also said no testing for recurrences - too many false positives. Don't know what testing she meant but no thrilled about that.

How accurate does everyone feel about their Prognostic grade? Are there articles about that?

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