Husband had Hcc

[Janrick78]

My husband was diagnosed in Feb. & Passed in Apr. How do they overlook all the enzyme tests without any scans?

[bwpickard Caregiver]

I’m so very sorry you lost your husband so quickly and fully understand your frustration if MD’s were not following up on elevated enzymes. My husband was diagnosed with cirrhosis with elevated enzymes And had a CT, a biopsy and a scope that all showed no cancer. His enzymes returned to normal and GI MD said wouldn’t even know he had cirrhosis had they not done the work up. I repeatedly asked about further monitoring and we were assured just needed periodic lab work and ultrasound .....the ultrasound missed a 10 cm advanced tumor that was diagnosed within the next year at stage too advanced to have surgery. We know now Self education and advocacy are critical. I know this doesn’t make your situation better but hope it helps you feel less alone with the frustration of this terrible disease. Prayers for you and your family.

[Eastwolf Patient in reply to bwpickard]

I am sorry for losing your husband. I think of death all the time and i can only imagine how he must have felt. I’m sorry

[andersoncathl Caregiver]

Hi There - I'm very, very sorry for your loss. If I understand you correctly, your husband had elevated enzymes but they didn't do a scan? Maybe they thought they could monitor it and then follow up with a scan if it remained elevated? I don't know much about this because my husband presented with pain initially and they did scans right away given the intensity of the pain (they could probably feel the large tumor on exam too) and the blood work came later. I know that looking back to think about what could have/should have been done differently is certainly something we do. Hindsight is always 20/20 and we all do the best we can do with the info we have at the time. Be kind to yourself. When we enter this journey with a loved one, it is so truly traumatic. I was often upset with how the doctors dealt with us. Following intuition and being a patient advocate is definitely something we should do but it can be very hard to do in the midst of a new battle with cancer. HCC is so aggressive as well that there often really isn't much time.