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Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)

Posted by ilcpfighter @ilcpfightee, Sep 8, 2022

I was diagnosed with ILC Pleomorphic Type Level 3. I am waiting for my Oncotype and was wondering if anyone here had a similar diagnosis and what your Oncotype Score was? Mine was ER+ PR- HER2 -. Waiting is so hard!

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ilcpfighter | @ilcpfightee | Sep 22, 2022
In reply to @auntieoakley "Here is some information, just a bit, but it might be helpful. If only to add..." + (show)
@auntieoakley

Here is some information, just a bit, but it might be helpful. If only to add more context to conversations.
This is from the NIH
https://pubmed.ncbi.nlm.nih.gov/35137951/
It shows there is benefit in some cases of chemo with lobular cancer. That high oncotype number is the difference in this context. I hope you are able to have a second opinion and you have the right to put off chemo an extra week to get it and feel comfortable with your plan, but please don’t wait too long.
Are you currently scheduled for that second opinion?

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I have a second opinion scheduled at MSKCC the day after they want to put the port in. I want to put that all off for one week, but that makes me nervous. I am guessing one week, in the grand scheme of things would be okay. I would be 9 weeks post-op when I start instead of 8.

Thank you for the article, I will read that for sure! Oncotype I also read isn't a good predictor with lobular, so many conflicting studies make it hard, or maybe I am just looking for a way out of chemo, lol.

Is it true that lobular can spread without being in nodes? My problem is only one node was taken as that is the only one that took dye, so not real good stats with that being negative either.

Sigh......

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2 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | Sep 22, 2022
In reply to @ilcpfightee "I got my Oncotype today and the number came in at 34. They recommended chemo but..." + (show)
@ilcpfightee

I got my Oncotype today and the number came in at 34. They recommended chemo but I have read studies that chemo doesn't really work on Invasive Lobular Carcinoma. Has anyone else had Invasive Lobular with such a high Oncotype? If so, what did you do?

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I don’t know about spreading without nodes. I am glad you are getting a second opinion. I can understand wanting to avoid chemo.😂 I would ask all these questions of the second opinion doctor or your regular doctor. Make sure you feel well informed about your treatment and expected outcomes.

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sybille | @sybille | Sep 22, 2022
In reply to @ellerbracke "@sybille: May I suggest the tumor was likely 11x15 mm, not centimeters? It’s easy to get..." + (show)
@ellerbracke

@sybille: May I suggest the tumor was likely 11x15 mm, not centimeters? It’s easy to get it wrong if you haven’t grown up with the metric system. 11 cm is over 4”, which seems unlikely. Great news that you have been cancer free since you experienced the diagnosis, and treatment, 10 years ago!

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Nope,you read that right-11 by 15cm.I only noticed it when it started to bulge out,it had been invisible on all three mammograms I had prior to discovering it.

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1 reply
vegada | @vegada | Sep 22, 2022
In reply to @ilcpfightee "I have a second opinion scheduled at MSKCC the day after they want to put the..." + (show)
@ilcpfightee

I have a second opinion scheduled at MSKCC the day after they want to put the port in. I want to put that all off for one week, but that makes me nervous. I am guessing one week, in the grand scheme of things would be okay. I would be 9 weeks post-op when I start instead of 8.

Thank you for the article, I will read that for sure! Oncotype I also read isn't a good predictor with lobular, so many conflicting studies make it hard, or maybe I am just looking for a way out of chemo, lol.

Is it true that lobular can spread without being in nodes? My problem is only one node was taken as that is the only one that took dye, so not real good stats with that being negative either.

Sigh......

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I would definitely check the tailorX trial to make sure your type of cancer was part of the research because this study is used to support the Oncotype results. You could also try another genomic test like Mammaprint and others just to get another result to see if that test would indicate chemo or not. I did that and they differed. I had Stage 1 grade 1 IDC and one test showed a high risk of recurrence and the other test showed low risk of recurrence. So I am sure you will get multiple opinions which should help bring some clarity.

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ellerbracke | @ellerbracke | Sep 23, 2022
In reply to @sybille "Nope,you read that right-11 by 15cm.I only noticed it when it started to bulge out,it had..." + (show)
@sybille

Nope,you read that right-11 by 15cm.I only noticed it when it started to bulge out,it had been invisible on all three mammograms I had prior to discovering it.

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@sybille: Wow. I simply can’t imagine a tumor that large slipping under the radar, so to speak. And for the mammograms to not pick up on that. I feel embarrassed that I questioned the cm vs mm - the latter is almost always applicable to breast cancer…..

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windyshores | @windyshores | Sep 30, 2022
In reply to @delormv "@windyshores - do you know the name of the oncologist who specializes in lobular at Dana..." + (show)
@delormv

@windyshores - do you know the name of the oncologist who specializes in lobular at Dana Farber? I have an appointment there with Dr. Garber on November 4th for atypical lobular hyperplasia and hoping she specializes in this area.
Thank you!
@delormv

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@delormv the doc's name is Otto Metzger

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2 replies
callalloo | @callalloo | Oct 5, 2022
In reply to @ilcpfightee "I have a second opinion scheduled at MSKCC the day after they want to put the..." + (show)
@ilcpfightee

I have a second opinion scheduled at MSKCC the day after they want to put the port in. I want to put that all off for one week, but that makes me nervous. I am guessing one week, in the grand scheme of things would be okay. I would be 9 weeks post-op when I start instead of 8.

Thank you for the article, I will read that for sure! Oncotype I also read isn't a good predictor with lobular, so many conflicting studies make it hard, or maybe I am just looking for a way out of chemo, lol.

Is it true that lobular can spread without being in nodes? My problem is only one node was taken as that is the only one that took dye, so not real good stats with that being negative either.

Sigh......

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I think there is a misunderstanding here unless you're referring to some different usage?

A node 'taking dye' indicates that it is a node where the cancer cells would most likely infiltrate the lymphatic system because the dye is injected in the vicinity of the tumor tissue to identify the lymph nodes most likely at risk. (Usually the nodes closest to the cancer cells but not always. Thus the dye is used to detect the pipeline.)

If the biopsy is negative, there were no cancer cells in that 'sentinel node.' That's good news.

The Oncotype service reps are very helpful. You might want to talk to them to find out the test algorithm dealing with lobular cancers. They have strict protocols for tissue submission so I would be surprised if the test is invalid. And they do reject tissue from tumors submitted for tests that are inapplicable for that particular tumor type or stage, etc. Or with a seemingly incorrect biopsy so are careful about the integrity of the tests' statistical universe appropriateness.

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1 reply
ilcpfighter | @ilcpfightee | Oct 5, 2022
In reply to @callalloo "I think there is a misunderstanding here unless you're referring to some different usage? A node..." + (show)
@callalloo

I think there is a misunderstanding here unless you're referring to some different usage?

A node 'taking dye' indicates that it is a node where the cancer cells would most likely infiltrate the lymphatic system because the dye is injected in the vicinity of the tumor tissue to identify the lymph nodes most likely at risk. (Usually the nodes closest to the cancer cells but not always. Thus the dye is used to detect the pipeline.)

If the biopsy is negative, there were no cancer cells in that 'sentinel node.' That's good news.

The Oncotype service reps are very helpful. You might want to talk to them to find out the test algorithm dealing with lobular cancers. They have strict protocols for tissue submission so I would be surprised if the test is invalid. And they do reject tissue from tumors submitted for tests that are inapplicable for that particular tumor type or stage, etc. Or with a seemingly incorrect biopsy so are careful about the integrity of the tests' statistical universe appropriateness.

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So Oncotype is a good indicator with lobular to indicate cancer that responds to chemo? The dye was injected during surgery and only was seen in one node. That node was removed.

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2 replies
windyshores | @windyshores | Oct 5, 2022
In reply to @ilcpfightee "So Oncotype is a good indicator with lobular to indicate cancer that responds to chemo? The..." + (show)
@ilcpfightee

So Oncotype is a good indicator with lobular to indicate cancer that responds to chemo? The dye was injected during surgery and only was seen in one node. That node was removed.

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Froom 2017:

The utility of the Oncotype DX in decision making for treatment of invasive lobular carcinoma (ILC) has not been investigated as the results reported by Genomic Health are largely in a population with invasive ductal carcinoma (IDC).

There is a lot of advocacy going on about lobular cancers. I would call the company (no longer Genomic Health, now called Exact Sciences apparently) for information on testing for lobular cancer.

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