tell your Radiologist about Lobular Before your scan

Thank you Nash and everyone for the great links and info which is so important to Lobular patients.

As the scan I was having is an FDG PET scan I emailed them the presentation below from Dr Gary Ulaner, Memorial Sloan Kettering Cancer Centre which was presented at breast cancer symposium - specifically speaking about lobular and imaging. Here is link to his part about lobular FDG PET scans. I also did my best to transcribe some quotes from his presentation as I had been told that it's just easier sometimes to read something rather thank click links which sometimes don't work. These comments below are specific to Lobular and it's ability to be non FDG Avid - requiring the radiologist to beware and to scrutinise the scans.

https://youtu.be/lKhNOtLjofg

Some key points from his presentation:

“When dealing with lobular patients it is important for people to realise that the FDG/PET is less sensitive for Lobular than Ductal and we know there's different propensity for the sites of Mets between lobular and ductal - both of these things make Lobular cancer harder to see in FDG PET CT.”

“A warning to interpreters that lobular is harder to detect. Although the majority of lobular Mets are avid you just have to be cognisant that there are a minority of patients whose lobular will not be FDG avid. So scrutinise the CT to be certain there's no evidence there of disease and don't rely on just the FDG PET.“

“There is a substantial minority where Lobular Mets are seen on CT but NOT on FDG PET."

“Some PET interpreters may look at the PET and say "there's no FDG Avid malignancy therefore these are benign. BUT as we see in the patients prior image these osseous lesions are new and these are non FDG avid. So these lobular Mets show up on CT or MR but not on FDG PET. Be wary of Lobular."

"Despite no FDG Avidity in an earlier scan there's new schlerotic lesions which represent lobular Osseous Mets picked up on CT scan but again not on FDG PET. "

“And this is not just with the bones. Lobular cancer unfortunately goes to uncommon areas like GI tract, peritoneum - and so we see thickening of stomach wall but again NOT FDG avid - but the CT findings were suspicious."

"The Radiologists have to scrutinise CT images for any evidence Of malignancy and NOT rely on Just the FDG PET for finding the lobular Mets."

"It is critical that the Radiologist realises that FDG PET is less sensitive for lobular than ductal."

“Lobular bone Mets are almost always schlerotic whereas ductal Mets are lyric"

"Finally Lobular cancer deserves one chance to be FDG Avid. But beware."
ENDS

Thank you again to everyone who replied and offered their thoughts and copied links - I am so grateful to each and every one of you, we are definitely stronger together.

I hope others can use this information too when having FDG PET scans.

Best wishes to everyone and thank you again.

Greetings everyone. My scan came back all clear.

It noted that I have a “23 mm round apparently simple cyst within the rightovary is nonavid. A fibroid is suspected in the the fundal uterus.“ Thank you again to everyone.