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Does ILC not show up on PET scans? Anyone tried different contrast?

Community Member

2 months ago

I was diagnosed with stage 4 ILC about 6 months ago. They found out that the tumors I had from my hysterectomy 3 1/2 years ago were actually ILC so I was essentially misdiagnosed for 3 years. My question is about ILC and PET scans. On my scans basically nothing shows up. The only thing that shows the cancer is MRI’s. They are using ctDNA to determine treatment response. They confirmed that both my previous tumor from the hysterectomy and from bone metastasis in my spine is indeed ILC via genetic testing. I wonder if anyone else has had this happen. I had a regular PET scan and it showed basically zilch but I have MRI’s that show it in my spine pelvis ribs sternum and arms and in the beginning I pushed hard for a PET because I was scared about where else it was that I had not had an MRI. I know there is a PET scan that uses a different type of contrast and is better for ILC. Has anyone had this type of PET and did it show your metastasis.

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Community Member

2 months ago

Many patients with ILC do experience challenges with standard PET scans showing limited uptake, which can make monitoring more difficult. The specialized PET scan you're thinking of is likely an FES-PET (estrogen receptor imaging), which can be more effective for detecting hormone receptor-positive breast cancers like many ILCs. It's encouraging that your medical team is using ctDNA testing as an alternative monitoring approach, and combining MRI imaging with these blood-based markers can provide valuable information about treatment response even when standard PET scans aren't as helpful.

Community Member

a month ago

Same. I had to switch hospitals to get the one with contrast.

Community Member

a month ago

Hi I’m sorry that they missed it first time. I have mILBC was diagnosed first in 2011 then in 2023 they were trying to figure out what was going on…. Not enough uptake but I’m full of it now. We found it when I thought I had appendicitis….. my cancer was in the appendix, in my adhesions, on my omentum. Then when I had a follow up EGD it’s now in my stomach. The gastroenterologist was shocked I have breast cancer in my stomach. Our cancer grows in single file that’s why it’s so hard to detect. I’m 2years 8 months on my first treatment. Ibrance, Fosledex and Xgevia. He just reduced my dose of Ibrance because my wbc were low. Be strong keep your mind right….we got this

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Does ILC not show up on PET scans? Anyone tried different contrast?

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