Lobular Sucks!

Okay, fellow lobular cancerites.

I had a CT yesterday. I've got the report in my patient portal already, but I don't have a Telehealth appointment with my MO until Jan. 25th. For the most part, it looks stable. However, there were a few terms on there that I hadn't seen before on a readout on a CT, and I'm wondering if anyone else has had these and what the upshot was. I have mets to my liver and to my bones.

Comment #1 related to my liver. So first, understand that that radiologist said that his observation was similar to that in October, where this terminology was not used AT ALL -- this was the terminology: Pseudocirrhotic appearance to the liver -- then the rest of the sentence proceeded to state that it was treated sections of my liver (I've had microwave ablations three times to my liver). I understand that pseudo cirrhotic roughly means "false cirrhosis," but I found an article that made it sound that this is not a good thing in our situations. Anyone out there seen this on a report?

Comment #2 related to my mesentery and omentum. This one said: New mesenteric/omental haziness and then said a small amount of ascites. However, I tripped over my daughter's very large dog about a month ago and really whacked my liver area and then bounced and hit my ribs in the back (damn dog). Re the ascites, I know that I tend to develop these with any disruption to my abdominal area -- developed them after one of my microwave liver ablations and the interventional radiologist at that time said they would go away once the area calmed down (and they did.)

Thanks for any info that you might be able to provide. This is me with my post scanaxiety, freaking out.

Thanks, KBL, that's useful info. Right now, after Rabbit passed away, I don't know how much credence to put in any of these scans, but I figure I should try to see if this has happened to others.

Thanks, Lilly, I appreciate it. I'm pretty sure the dog incident did something to me -- I now truly understand "getting the wind knocked out of you" -- and I feel like that, more than anything, affected the CT, but we'll see what my MO says.

ShetlandPony, please check in if you can and let us know how you’re doing.

SP- Hope you are home, comfortable, warm, and getting relief from recent issues! Thinking of you

ShetlandPony, I responded in your other thread as well. Just sending you extra hugs. I totally understand not commenting when you’re so weak. Please know you are in my thoughts.

SP-Hugs

ShetlandPony- Hugs to you, my friend.

SP thank you for letting us know. I hope you are having a nice cup of tea right now and enjoying a warm climate. I am asking Enhertu to be good and to help you. That's what it is designed to do.

Sending you hugs.

Hi, ladies. Did any of you have a 18F-FES PET/CT using the imaging agent 18F Fluoroestradiol (Cerianna)? I searched the forums, and found a few previous discussions, and would like to see if there is any more recent experience.

My mom was diagnosed of ILC a month ago and we are still awaiting on the staging conclusion. CA27-29 is 10 times of the normal upper limit which indicates metastasis. Bone scan shows 2 uptake spots on the opposite side ribs. But the FDG PET/CT is negative - the SUVmax of the 6cm original ILC tumor is even lower than the baseline liver SUVmax (meanwhile a separate CT with contrast says on the liver there are a few punctate low density lesions "too small to definitively characterize"), which probably means the FDG PET is also useless for the liver when the whole liver has a higher SUVmax than the tumor. I read that ILC has low sugar uptake, so mets may not show on the PDG PET.

One of the MOs we saw for additional opinion said he never ordered FDG PET for lobular patients because it's not sensitive for ILC. He also mentioned the new Cerianna agent and is checking if their radiology department can offer that.

If any of you had the 18F-FES PET, can you share your experience regarding how it compares to the FDG PET? Does it detect things not shown on FDG PET? Or did FDG PET help identify things for you? Any advice is truly appreciated!

IVIA - I went down to Hoag Center this September to see a radiologist, Dr. Ulaner, in Southern California who is running a FES PET clinical trial to see how well it can identify ILC. It wasn't able to find any mets during my visit., but previous FDG PET's couldn't either. Finally a month later a FDG PET /CT with Contrast did pick up some activity in my pelvic fluid and omentum. My markers had risen dramatically and it took at least 4 months to locate the source so I could immediately switch drugs (I went from Xeloda to Taxol) which has dramatically reduced the markers as of today. You can call him and ask him questions, he is very knowledge and readily shares his opinions and information about FES and Lobular Cancer. In the past FDG has picked up some lobular spots for me (liver, anal node) so the blanket statement from the MO about no FDG for a ILC patient does not sound very professional.

Thank you for sharing your experience, KBL and Nina. My mom's CA27-29 is in the 300s and she has some abdominal pain, so I'm worried if there are other things besides the two rib uptakes shown on the bone scan. Haven't done a bone biopsy yet. What range are your tumor markers, if I may ask?

I found Dr. Ulaner's page at Hoag and also read a couple of his published papers. Found his corresponding email in the papers and will try to reach out. I'm in the process of talking to the MOs about how to get the FES PET study and will report back. Thank you again.

Hi, KBL and Nina. Another question - how long was your wait time between the injection and the actual scan, for FES and FDG PET, respectively? I remembered my mom's FDG PET wait time was 45-50 min...was wondering if that's adequate. I saw some cancer centers' FDG PET instructions say 60-90 min wait time. Not sure about FES. Thank you!

I only wait 50 min for FDG, can't remember how long for FES but I do remember you don't have to fast! - you can eat whatever you want up to the scan. I think. NINA

KBL, the different scans saying different things makes me feel crazypants. I've had reported biapical scarring in my lungs on my scans, and I ended up meeting with a pulmonologist (because I was having a dry cough). She said I had minimal scarring due to chest wall radiation in 2020 but it was so minimal it would not result in a cough. Turns out I have post-nasal drip 🙄. Better than more cancer, obviously, and I try to chuckle that of course I assume ANY symptom I have now is more cancer.