← Return to Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)

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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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Replies to "I got my Oncotype today and the number came in at 34. They recommended chemo but..."

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

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.....

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!

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.

I’m waiting for my oncotype results. I have invasive pleomorphic lobular carcinoma and lobular carcinoma in my breast. I had a double mastectomy and am waiting for results.
Did you take the chemo and if you did for how long