Cirrhosis Support Group

I need a hug, I got bad news today. Got results of my lab work and ultrasound of abdomen. Saw my gastro doctor and pulmonologist. Tomorrow I see my hematologist/oncologist, who will also handle the growths on the liver, which I have. My gastro dr feels the oncologist should be tracking any growths or changes in my AFP. In my CAT scan in September the report showed two nodules on my liver, one being 3.9 x 3.9 x 3.3. The report by the radiologist on the ultrasound I had last week only mentioned one mass on liver, measuring 4.8 x 3.4 x 4.8. So it has grown slightly, but two different imaging devices were used. My AFP went from 7 in September to 9 now. My labs are pretty consistent with what they were with a slight increase in alkaline phosphates (156 to 175) and my ALT went from 48 to 43, and AST went from 64 to 69. Platelets still at 69. Don't know my MELD as they didn't test my creatine. Gastro doctor thinks I should go back up to Univ Hospital in Denver (where the transplant center is located, as well as all the liver specialists in Denver) and have them look at the report. But he wanted to see what my oncologist/blood doctor says tomorrow. Perhaps she'll want me to have another CAT or PET scan. My pulmonologist wants me to start treatments for the alpha-1 in my lungs in the hope they will stay healthy enough for surgery, should I need it. I AM SO SCARED. I have been praying every day for the past year that things would improve. But just keep getting worse and worse. Is there any other treatment for a nodule to keep it from growing before a liver becomes available, if I even meet the criteria for a transplant. Let you know what happens tomorrow, but just need to tell someone as I don't like to lay too much on my kids. They have jobs and young children to take care of, and I don't think they really feel I'm that sick because I don't look or act sick. Thanks for listening!

There are treatments. If I were in your shoes, I would be making an appointment with the transplant center doctors ASAP. Your doctor may be able to push things along given the results of your test.

oh big HUGS! Mike's right, there are treatments. Definitely get into the liver/transplant docs and see what they say. You will be in my thoughts and I'll send all the positive energy to you for strength! I know what you mean about not laying too much on the kids, I'm in the same boat. They know but I choose to let them continue to see me thrive. I want to teach them that there is always a positive way to look at things, but sometimes when it's our thing...it's hard. You will get through this!

Post edited by: 1polarbear, at: 01/11/2012 07:09 AM

pmary,

Mike is right there are treatments. And I agree I would be seeing my liver specialist now. It's a good thing your appointment is tomorrow with the oncologist. But the liver Dr needs to know what is going on.

I'm sending Hugs and prayers.

Thanks to you all that responded. Today I saw my hematologist/oncologist, and she is quite worried about my nodule (lesion, mass) growing. She put in immediately for a referral for me to go to Denver to see the liver specialists there, and hopefully it will be real quick. She said nothing else matters now except to get a biopsy and determine treatment for the liver. However, one thing she said surprised me, as she said they can sometimes do a resection if there's only one mass, but not if there's more than one. She also said they do not to transplants for liver cancer, even if it's just contained to the liver. I guess I must have misread some things as I thought that moved you up on the wait list and that they do perform transplants for liver cancer. If anyone has info out there, please let me know. I am so scared, as it's hard to comprehend how I can feel so well and be so sick. Please keep me in your thoughts and prayers.

That's what I'm talking about! If an appointment is urgent, the doctors will get on it.

I think it is that they do not do transplants FOR liver cancer, but if one is needed otherwise and the cancer is not to large they will do one DESPITE liver cancer.