FES PET scan for lobular

I missed this thread somehow until today, thank you so much KBL for starting this, and for going to participate in the clinical trial. I'd vaguely heard something about the FES PET, somewhere, something I'd read. I'm really sorry it can't show everything, like liver, small bowel, etc because if we can't see it, how in the heck do we know if treatment is working?! But seriously thanks for all the information.

Hi KBL- It's nice having this thread just for FES, I get lost talking about it on other threads.

Where did you have your FES Clinical Trial? I'm in the process of sending my medical records to the Hoag Cancer Center in Irvine California where they are having FES trials. Hopefully it will let me know what is happening to my ILC mets. Previous PET scan shows nothing one month ago, but CA15-3 marker getting close to 1000. Previous mets found in ileal and and rectal wall in May 2020 resolved with Xeloda. I don't know if the CT scan would show anything different than a PET. I can have either before I do the FES (they need a comparison scan for mets). they also said they would have to a biopsy a week later, if possible, if something is found. I live in the San Francisco Area and would like to not have to travel for this. Anyone know of a closer place? Are you sure it doesn't show bowel or small intestine or just not as reliable? For all I know I could have it in my stomach now.

SF Cakes- What are you taking for the stomach mets?

Has anyone ever seen a simple list of which ILC mets locations are usually well-visualized on FES PET and which are not? How about which sites are often better-visualized on FES PET vs. FDG PET vs MRI vs CT vs Ultrasound vs Endoscopy vs Colonoscopy? In other words, a guide to say if you suspect mets in x location, try this mode. Or if you can't find the ILC mets, what are your best bet scan modalities.

KBL- Thickening of the wall in the small intestine was bad enough that they went in for exploratory surgery and took out a piece of ilium being squeezed by an ILC tumor. They were able to see fluid backed up in the small intestine with not much in the colon on a PET. Are your thickening walls in your stomach? Is your GI a GI surgeon?

I just posted on Lobular Sucks- Hi- Tumor Markers now over 1000 and continue to get higher every three weeks-no physical symptoms.

I talked to the office where FES PET clinical trials are being done in southern California and they are ready for me with 2 days notice to give me one, after I talk with the Doc. tomorrow. I will schedule a regular PET here in two weeks and then go down south the next week for a follow up FES PET. Two months ago NEAD on my PET- only laugh was they again thought I had a hysterectomy (2nd time they wrote that). Doesn't give me much confidence in their scan reading ability. Just cut and paste from a previous wrong report that was corrected. Good to know KBL that they were able to find ILC in your stomach with the FES. I guess if they find something they will immediately take me off of Xeloda and put me on Taxol (had it 22 years ago but can have it again). I feel like stopping Xeloda right now and changing meds even if they don't know why.

KBL- My regular GI doc was useless. At least yours was willing to do a biopsy with endoscopy. It was the the surgeon who looked at the CT and said I needed surgery. Don't know if a PET would have picked it up since I didn't have them then. How did they see the thickening in your stomach? on a CT scan? Since the CT shows thickening of walls, I don't know if a PET could pick up the same information. I'll ask the FES doctor tomorrow when he calls.

I have an appointment for Sept. 17 for FES PET with Dr. Ulaner. They are also going to try and get my insurance to cover a contrast CT at the same time even though I just had a FDG PET on Thursday (it was clear, again)- markers over 1000. Again, for the third time the written PET report had me "post hysterectomy". Seems you are not allowed to change a report, only amend it and no one looks at the amendment. I'm Nervous about what they will find next week, and then back for a biopsy if they find something. Just gave my dog a abdominal scan, she's beginning to fail, of old age. We are both on shaky ground.

I have an appointment for Sept. 17 for FES PET with Dr. Ulaner. They are also going to try and get my insurance to cover a contrast CT at the same time even though I just had a FDG PET on Thursday (it was clear, again)- with markers over 1000. Again, for the third time the written PET report had me "post hysterectomy". Seems you are not allowed to change a report, only amend it and no one looks at the amendment. I'm Nervous about what they will find next week, and then back for a biopsy if they find something. Just gave my dog a abdominal scan, she's beginning to fail, of old age. We are both on shaky ground.

KBL-Thanks for asking. Mixed reviewS. The CD I brought of my recent PET was crap. No information on the disc! The good news was that he didn’t see any malignancies on the FES but He did see 2 things on the CT that he needed to compare with a previous CT to see if they were new - one was fluid in the pelvic area. the doctor was great but FES wasn’t for me. I’ve tried to order another disc but Kaiser does not make it easy.
I spoke to my MO and he had a bit of an attitude- I think it was end of the day irritability. He said only two reasons my markers are high (they just went up another 300 in 3 weeks). 1. I have cancer that is not showing up, more cancer cells or. 2. The existing cancer cells are shedding more antigens. If the scans don’t show anything just wait until I have symptoms.

KBL I decided to look at my MO's phone conversation as it is his problem, although I feel a bit bullied. It's not been our usual interactions so I'm gonna cut him some slack, for now. What medications are you going on? I'm on Xeloda now 16 months and continuing until something shows up,-is that your next drug? I called my FES doc and they said they are still following up with trying to receive records. Sigh.

Yes, KBL, hopefully your new drugs will put you back to eating normally and giving you a good long time of nothing going on.

Nina, reading that nothing showed on your FES PET made me think of some clinical trials like this one:

ClinicalTrials.gov Identifier: NCT00602043

"This phase II trial is studying how well F-18 16 alpha-fluoroestradiol (FES) imaging works in predicting response to first-line hormone therapy in women with hormone receptor-positive metastatic breast cancer. Diagnostic procedures, such as FES imaging, may help predict how well patients will respond to hormone therapy and may help plan the best treatment."

I believe this is the theory they are testing: If this patient's cancer does not show on FES PET, it might not be estrogen-driven (even if ER+ on pathology), so hormonal therapy might not work. So I'm thinking maybe the results you got may provide some useful input for the discussion about what treatment to use next. You might mention that trial to your onc.