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

Hi. I had a NET in my liver that caused uncontrollable high blood pressure, type 2 diabetes, severe anemia, and extreme swelling in my feet and ankles. The swelling was unlike swelling seen in allergic reactions or other causes. I could not walk or drive; the swelling was so bad, you could hardly see my toes and even my husband's shoes were too small. Some of my torso and my face were swollen but not to the extreme degree of my feet and ankles. I used pressure stockings, I used massage guns, had physical therapy at home. I did not see any real results. I had Y90 nuclear beads procedure on the NET April 28, 2024. On May 5, 2024, the swelling in my feet and ankles left and did not come back; the other effects of the tumor, including the diabetes, left. I write this in hopes that treatments for the liver might also lead to some relief to you from the ankle and feet swelling.

@tomrennie he does also have a little swelling in his abdomen that has been there a while. He normally weighs around 260-270. He is currently close to 240. I included his weight information just to provide some perspective on the size of his belly (if that makes sense). Because of his former weight we didn’t really notice if he was experiencing swelling in his abdomen.

@rcochran1 can you tell me more about the Y90 nuclear beads procedure?

I had a lot of foot and ankle swelling in the hospital. It got worse after hepatic artery embolization, which caused high fever and kept me from walking for several days. Was on IV then and fluids got so bad near the lungs that I needed thoracentesis to remove fluids so I could breathe (this happened twice in hospital, a 3rd time after discharge).
Swelling remained while on chemo, prednisone and diazoxide. Finally a consulting oncologist (god bless her) went through my whole meds list, told me to get rid of this, taper off that and see what happens. That plus getting active again (walking and as soon as possible bicycling) got the swelling under control.
She also reduced my chemo dose (still got sick) and got me interviewed for PRRT at another hospital.

@tgsenn70
I am new here; I hope this reply works. We went with Y90 procedure because no surgeon would operate on NET liver tumor. Three procedures, all out patient, about a month apart each, led by an interventional radiologist worked to first take a biopsy to confirm the tumor was a NET; then one to pump in dye to "map" the tumor, last one to insert the beads. I was "radioactive" for a few days later and told to stay away from humans and pets. The recovery left me without an appetite and much fatigue. Nearly 2 years out from Y90, we cannot see new tumors, but we keep hunting as we don't trust me to be one of 200 reported cases with a NET originating in the liver. NET specialist at Ohio State University James Cancer Center leans to thinking it came from the small intestines and traveled to liver. Endoscopy and needle biopsy of pancreas recently ruled it out as a source. Hope this helps address your question.

@tgsenn70 I would share the swelling with your care team especially the abdomen. When I first got diagnosed, I had similar swelling. A subsequent scan showed it was ascites from my liver being compromised from the cancer. My oncologist coached me to inform him anytime swelling includes the abdomen. I suggest that you do the same, if you haven't already. That's why I asked, if the swelling was anywhere else. Let me know, if you have any questions.

@tgsenn70
I am new here; I hope this reply works. We went with Y90 procedure because no surgeon would operate on NET liver tumor. Three procedures, all out patient, about a month apart each, led by an interventional radiologist worked to first take a biopsy to confirm the tumor was a NET; then one to pump in dye to "map" the tumor, last one to insert the beads. I was "radioactive" for a few days later and told to stay away from humans and pets. The recovery left me without an appetite and much fatigue. Nearly 2 years out from Y90, we cannot see new tumors, but we keep hunting as we don't trust me to be one of 200 reported cases with a NET originating in the liver. NET specialist at Ohio State University James Cancer Center leans to thinking it came from the small intestines and traveled to liver. Endoscopy and needle biopsy of pancreas recently ruled it out as a source. Hope this helps address your question.

@tomrennie they are aware. He was hospitalized a couple of weeks ago so they saw it. The next step for us is to get the PET scan which is scheduled for 3/30, then we will meet with oncologist and determine the next step. Thank you very much for sharing your story.

@rcochran1 Hi and welcome to Mayo Connect. Since I am seeing more folks ask about Y90, is there anything that you can suggest that may help others prepare for their procedure? Thanks.

@tgsenn70 You are welcome. Please let us know how 3/30 goes ok?