Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)

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.

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.....

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

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?

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.

@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?