Best Imaging for ILC mets

Katzi17

Hello ,

I’m in the process of diagnosis of possible stage IV de novo ILC . I’m not ready to talk about my specifics yet as I am in a very fragile state .

1. However , I need advice . Could anyone recommend an oncologist who really knows ILC and can find it on imaging ? Any clinic in the US is fair game for me I will go wherever needed but I’m in Florida

2.) if anyone can make imaging recommendations I would really appreciate it . Which imaging works best to find mets ?

Thank you . I will post my specifics later when I am ready .

Gracejoy

My oncologist is one of the best in the field. He says lobular is hard to detect in scans. He goes by patient symptoms and MRI with contrast in specific area I have discomfort with Also bone scan is very sensetive tool for bone mets for lobular. Blood cancer antigens also will indicate mets also. I hope this helps. Hugs.

Katzi17

HI would you be able to tell me who your oncologist is ? Also if they can’t tell from scans how can they be sure if it is stage 4?

Thank you so much for the reply

Gracejoy

Hi Katzi17,

I just sent you a private message

Icietla

(((Hugs)))

macmomma

Please post this publicly-- hard to find an ILC specialist.

dtad

Katzi17...so sorry you are going through this. IMO you should find a major university teaching hospital to be treated at. Good luck and keep us posted. We are all here for you.

klmpk

Dr. Moreno at the Mayo Clinic in Jacksonville is great. I'm ILC state IV and feel that he is on top of everything to do with breast cancer. He is head of the department and a very kind man.