Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)

Posted by ilcpfighter @ilcpfightee, Sep 8 7:38pm

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!

Interested in more discussions like this? Go to the Breast Cancer group.

@ilcpfightee, I know fellow members like @jodyinpetaluma @mom23boys @kszilvia who were also diagnosed with invasive lobular carcinoma completely understand how hard the waiting is.

I think you'll be interested in this related discussion that @kszilvia started a little while ago:
– How did you decide on breast cancer treatment based on Oncotype? https://connect.mayoclinic.org/discussion/oncotype-result/

When do you expect to get the results of the Oncotype test back? What plans do you have this weekend to keep yourself distracted and bring you pleasure?

REPLY

I am getting my results on the 19th. I emailed and asked for the number but they said they don't have it yet. I check my chart almost obsessively each day hoping it shows up and I don't want to be blindsided when I see them, I like to be prepared.

This weekend I am spending time with family, outdoors things, and things to keep occupied. I am really glad I joined this group. Sad that so many people are going through this, but grateful to have people that understand to talk to about it.

REPLY

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?

REPLY
@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?

Jump to this post

In this day of video medicine
I say talk to specialists available to see you but instead … willing to do a review of your records (test/surgery/bx), and chat with you about your situation. It was so helpful to talk about this logically – not easy- need to be over the raw surprise of the news sometimes. But I talked to one oncologist specialist from a center (years ago – wish I could refer) over the phone after he had my records sent over. He was so kind – he understood i needed new language to even talk about this.
You may have to solicit friends – my IT guy from the building was amazing at Moffitt- he helped me get answers with his logic. Keep reaching out – all the best

REPLY
@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?

Jump to this post

Thank you so much. They say they like to start treatments within 6-8 weeks post-op, and I can't get a second opinion that fast, they are booking out quite a few weeks. I am not sure how mission-critical that time frame is or if I have time to bump this off another week to allow for a consult. It is so hard to know what to do when research shows Chemo generally doesn't work on lobular, but the standard of care says to do it because it is based on ductal. I am at a loss for sure. I asked if chemo doesn't work if cancer moves, how does chemo work now, and got a skirted response that didn't really answer the question. I am so lost…..

REPLY
@ilcpfightee

Thank you so much. They say they like to start treatments within 6-8 weeks post-op, and I can't get a second opinion that fast, they are booking out quite a few weeks. I am not sure how mission-critical that time frame is or if I have time to bump this off another week to allow for a consult. It is so hard to know what to do when research shows Chemo generally doesn't work on lobular, but the standard of care says to do it because it is based on ductal. I am at a loss for sure. I asked if chemo doesn't work if cancer moves, how does chemo work now, and got a skirted response that didn't really answer the question. I am so lost…..

Jump to this post

Find an oncologist who specializes in lobular. There is one at Dana Farber. Also there are advocacy and research groups for lobular that are accessible online.

REPLY
@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?

Jump to this post

I was diagnosed with invasive,lobular carcinoma ,grade 2,stage 3, 10years ago.After a double mastectomy,I had a break for three weeks,after which I was on chemo sessions,once every three weeks,for four months,followed by radiotherapy with 15 sessions.Without chemo my chance of recurrence was 75-I have never heard of chemotherapy not working for lobular cancer.My tumor was 11cm across,15 cm long,nothing looked very promising.I have not had a recurrence since.
Chemo saved my life!

REPLY
@windyshores

Find an oncologist who specializes in lobular. There is one at Dana Farber. Also there are advocacy and research groups for lobular that are accessible online.

Jump to this post

@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

REPLY
@ilcpfightee

Thank you so much. They say they like to start treatments within 6-8 weeks post-op, and I can't get a second opinion that fast, they are booking out quite a few weeks. I am not sure how mission-critical that time frame is or if I have time to bump this off another week to allow for a consult. It is so hard to know what to do when research shows Chemo generally doesn't work on lobular, but the standard of care says to do it because it is based on ductal. I am at a loss for sure. I asked if chemo doesn't work if cancer moves, how does chemo work now, and got a skirted response that didn't really answer the question. I am so lost…..

Jump to this post

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?

REPLY
@sybille

I was diagnosed with invasive,lobular carcinoma ,grade 2,stage 3, 10years ago.After a double mastectomy,I had a break for three weeks,after which I was on chemo sessions,once every three weeks,for four months,followed by radiotherapy with 15 sessions.Without chemo my chance of recurrence was 75-I have never heard of chemotherapy not working for lobular cancer.My tumor was 11cm across,15 cm long,nothing looked very promising.I have not had a recurrence since.
Chemo saved my life!

Jump to this post

@sybille: May I suggest the tumor was likely 11×15 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!

REPLY
@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?

Jump to this post

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……

REPLY
@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?

Jump to this post

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.

REPLY
Please sign in or register to post a reply.
  Request Appointment