Liver NETs: Anyone has extreme swelling in feet and ankles?

@tomrennie The preparation for the Y 90 procedure itself was the biopsy and mapping with dye; all three under a light anesthesia, out patient in early morning and home by late afternoon. The entry used left a small opening covered with an ordinary size Band Aid and caused no pain for me. The isolation from humans/pets was for a few days. The information I received indicated that in a "few weeks," you'd be "back to normal." I found it more like 4 to 6 weeks with extreme fatigue [a term new to me], loss of appetite and weight. I am retired, but would have needed more than 2 weeks if I had to return to work teaching. Six months after the Y 90, my radiologist saw a small spot left on the liver in my scans and suggested she could "zap it" with a microwave ablation of liver. We did the ablation: outpatient, required full anesthesia, after effects of sharp pain in right shoulder- a "referred pain" [another new term] from nerve running up from liver. I mention the ablation b/c Y 90, unlike surgery with clean margins, is less precise and required this follow up. All credit to my radiologist who found the small spot b/c NET specialist and other oncologist saw it but did not mention the option of ablation. Ablation was not painless, but peace of mind that I had done all possible to "delete" the NET was worth it to me.

@tomrennie I will. We are believing and proclaiming that it won’t show any new findings.

Where is he being treated in Georgia? Great physicians in Atlanta at Atlanta Liver and Pancreas.

@zacharycat So did anything specific cause the lung fluid or was it a combination of everything? Ironically, I had to have a paracentesis three times to remove all of the fluid in my abdomen.

Hi @gamaryanne. He is a patient at the City of Hope. We now have a teledoc appointment set up with a specialist in Tampa, FL on 4/3 to see what he says.

Hello. The results (written interpretation) from his PET scan are published in his patient portal, but we can’t see the images. It was mostly unchanged from the last one he had last August. There appears to be a few small changes that are noted , and we will be going over everything next week with his oncologist. Thank you so much for checking. I know we all have so much that we are dealing with on our own as caregivers and patients, and the fact that you are checking on us makes us feel very loved. So thank you!

@tgsenn70 Awww, you are welcome. I feel privileged to have the opportunity. So in return, thank you. Are the images not on the portal, are they hard to see, or are there just so many slices of the images that you don't know which specific slice to look at? I have had those issues myself. Do any of the noted changes concern you folks?

@tomrennie no, unfortunately the place that we had it done at doesn’t upload the images to the portal. We only went there because it’s convenient and kept us from driving 2 1/2 hours to GA. I am concerned about the new notes. He says we don’t need to get worked up over it until we talk to the doctors.

@tgsenn70 The wait time between reviewing the results and speaking with your doctor can be excruciating especially with changes. I still have challenges with keeping my emotions in check. I usually distract myself with preparing questions for the doctor while I wait but not too many. Otherwise, I can drive myself nuts. Do you have anything that helps you better manage the in-between time? I am open to any suggestions that you might have. Thanks.