I'm sure Connie will be able to explain more & better than I. This is some of Terry's experience.
At first his leisions were small and so they waited to see if they started growing and kept checking his AFP levels to see if there was active cancer. If there is, the AFP level will keep rising. They don't want to do any unnessary procedures.
I think a lot depends on where the tumor is located as to how they will decide to procede. Terry has never had a biopsy because they didn't want to pull any cancer cells out from the liver through the needle insertion point. It could start spreading through his body. Anyway his tumor grew fast (they kept telling us that it was stable-NOT) and into his portal vein. After a tumor reaches 5mm, they will never do a transplant. If it reaches the portal vein, they will never do a transplant. Rules of the UNOS.
Terry had 2 chemoembolizations and then a radiofrequency ablation, which finally dissolved the tumor. There is nothing they can do about what is in his portal vein. We're just hoping that the Nexavar will take care of that. His AFP level has dropped from 50,000 to 8.4. 8 is a normal level. I sure hope it stays there.
I don't know about a resection, as it was not an option for Terry.
Connie will help you more with that. Get your pen & paper ready and write it all down. Make a copy and shove it in their face. That way, when you still forget to ask them somethingeven though it is written down, they will have to look over your list too.
Go to the UNOS web site and see what else you can learn about tranplants.
DUHHHH! They do check him for that everytime we go! One good thing is we are 4 1/2 hrs. from Shand's so we make one day for testing and next day we get results. In reading his last report for April the potal vein, splenic vein and hepatic veins are patent with NO ascites present.
That's a good thing, right?
"In reading his last report for April the potal vein, splenic vein and hepatic veins are patent with NO ascites present."
Yes, Toni, that's a good thing! As to what you should ask when you go in for Will's appt.: Everything you asked here. Write down everything! Do you happen to have a small, handheld recorder? That's another great option, as you can record the entire consult conversation, if they agree (and I've never known anyone to say "no.")
I'm a different case, in that I was having sonograms every year to look for tumors. There were some lesions noted, but that was damage from the hep C and meant nothing. So Wil's are not necessarily cancer--just damage from his hepatitis. They do follow up on those frequently to make sure there's no change. Now, in my case, as I've mentioned, I was going to Shands Jacksonville with no insurance. I was only getting sonograms once a year and blood work every 6 mos. The alpha-feto protein was only done occasionally--and not at all the last few years I was seen there...until the tumor was found. When the sonogram showed a tumor, it was huge--11 cm x 8.5 cm, taking up a good portion of the right lobe of the liver. I honestly think it was missed the previous year, as it was so large. After it was discovered, it did not grow much over the ensuing 9mos. The radiologist's report stated that it was hepatocellular carcinoma. What I basically heard at Shands was "so sorry." A transplant was mentioned, but I would have to go to Gainesville for that. Just getting an appt. to be seen by a cancer specialist at Shands Jax was ridiculously drawn out, and I never did get an appt. with one. The sonogram had also shown metastasis into the inferior vena cava. This is the point where I decided to go to Mayo Jax, after visiting their website. By then, I had acquired Medicare. They will accept Medicaid as a secondary insurance, but not as a primary. They also will not take any HMOs. I had to drop one I had just signed up for. However, I was seen almost immediately, and tests and consults were done very quickly. They questioned why it had been so long from diagnosis until I was seen by them, and I explained I'd been going to Shands Jax and they dragged their feet about everything.
I found out that I was NOT a candidate for transplant due to the metastasis. The hepatologist/surgeon I saw (after an MRI, blood work, a CT scan, etc., etc., but all done quickly at Mayo) told me (when pressed for an educated guess) that I had 6 mos. or less to live. You can imagine the shock! However, he did refer me to an interventional radiologist there who was doing some experimental things. I thought, "What the heck! I have absolutely nothing to lose." It turned out to be TheraSphere and a study would be conducted soon, after they'd jumped through all the necessary hoops. Meanwhile, a chemoembolization was scheduled and performed. That shrunk the tumor a lot, though I felt like hell for awhile after that. After a number of delays, they were finally able to give me the TheraSphere (microspheres of radiation directed into the tumor.) That killed the tumor and miraculously shrunk the metastasized part into the original tumor. It also killed most of that right lobe of liver; thus, the resection of the rt. lobe. That was also to make sure they had gotten all the cancer. The left lobe was biopsied and found to have mild cirrhosis. Even prior to the resection, the left lobe had grown to accommodate the work of the failed rt. lobe. They never told me what stage the cancer was or what stage the cirrhosis was, and I didn't bother to ask. I knew I was alive, and that I would have been dead w/o the treatments, and that's what mattered. I have so much faith and trust in Mayo docs, that I seldom question anything they do, except for my own information. The surgery reports, which I have, don't even mention a "stage," just the size of the tumor and what was done. I never had a biopsy until during the resection, when they biopsied the left lobe of the liver.
Also, I never have had high alpha fetoprotein (AFP) numbers. I think the highest was 12. So in my case, that has not been an indication of cancer. Instead, they do CT scans every 3 mos. and blood work more often than that (but looking at general chemistry and not just the AFP.) We were about to extend to 6 mos. when the 2nd hernia appeared, so now it's still every 2-3 mos.
A biopsy of the tumor was never done until after it had been removed. They always will want to avoid anything invasive, if at all possible. Part of this is due to the possibility of infection. I have had a number of MRIs with Gadalinium. This contrast will enable the inside of the body to "light up like a Christmas tree" anywhere there is cancer. You might ask if they can perform this study on Will. The 2nd time they did this at Shands, the vein "blew" while the contrast was infusing. I had nobody in the room with me, and though it was burning me so badly I felt my arm was coming off, and I was crying and pleading to stop, that it hurt, the technologist ignored me. The result is that I have sizeable scars on my right forearm from that. The only reason I didn't sue was because I was too concerned about the tumor to want to spend time and energy on a lawsuit. At Mayo, they always make sure that someone is there beside me as the contrast is infusing, and they also make the flow a bit slower so as not to "blow" the vein.
As I said, my case is different from most. But don't be alarmed by the "lesions." They are undoubtedly just damage from the hep. Can they turn cancerous? Yes. That is why he needs to have frequent followup with CT and/or MRI and Gadalinium. Blood work does not always tell the whole story.
Hugs, prayers, and much luck,
Post Edited (hep93) : 6/23/2008 4:20:28 PM (GMT-6)
Carol, my reading informed me of the same thing regarding tumors more than a certain size. However, I was never told that at Mayo--just that transplant wasn't an option because of the metastasis. I have been told, though, that if cancer should return in the remaining (left) lobe, then I would need a transplant. So that's one reason they keep a close eye on me.
Carol, that's true. The clinical picture could change. And prayers do help.