Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)

@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

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.

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......

@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!

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?

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?

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!

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.....

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.

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?