When to seek a 3rd opinion?

@ginkle999 Hi and welcome to Mayo Connect. Have tests confirmed that the tumor is cancer? Have you had any symptoms? What would you hope to get from another opinion? Thanks.

The doctors are waiting for the labs to match the tumor. My labs for the past year have been AFP 1400-2400, and in July 2025 AFPL-3 (fractionated AFP) of 59.9 (top of range 9.9). My lesion is stable at 9 mm for the past year. The MRI L-Rads is L-3, 50/50 chance of benign/cancer. I forgot to mention on my earlier post that I had Hep C for around 50 years, was treated with Harvoni 10 years ago, and have had continuous scans and labs for the past 35 years since the Hep C was diagnosed. But no confirmation that I have cancer. My doctors were going to treat me based on the labs and history, they think I have cancer. After so many scans and countless labs and a year of stress and worry, I'm looking for answers, what is going on in my body? My doctor can't find any other case like mine. I have no real symptoms besides being slightly more fatigued than usual, all of my labs are normal, LFTs normal, everything. You post an excellent question "what would I hope to get from another opinion"? I'm hoping for more a definitive answer besides waiting for my tumor to get bigger. Thank you for reaching out.

@ginkle999 What are nuke scans? I never heard of those terms before. I was unaware that AFP was a way to diagnose hepatocellular carcinoma or any other cancers? It can detect HCC, but it is usually used to determine if cancer treatment is working? What kind of doctor is ordering the tests, evaluating them, and determining your treatment? I understand your concern.

I say "nuke" instead of nuclear, it means I am injected with radioactive material. As soon as my AFP started elevating (to 56), my NP gastroenterologist sent me for an MRI. That was April 2024 and there were no lesions present. The next AFP was 2400 and that was November 2024, and a .9 cm lesion was found (the MRI reports are inconsistent about measurements for some reason, I said yesterday it was mm but it's cm). My NP sent me to an Interventional Radiologist, and she has been treating me ever since. Both of them read an elevated AFP as a warning sign of HCC, especially with my Hep C history. Also they are finding that even if the virus is cleared, there is still a chance of liver cancer. Since a tumor so small would not produce so much tumor marker, they sent me to a series of other scans to look for a primary cancer, none was found. No metasteses was found. Then they recommended radioembolization Y-90, which ultimately was cancelled due to the Tumor Board's decision. The Tumor Board has oncologists and various specialists. My next MRI will be in January 2026. I had thought about seeking another opinion from a cancer center or hepatocellular oncologist. I am not hardy enough to travel, so I would either go to a doctor here or via telehealth. I reached out to this discussion group because I found a discussion about Y-90 on it.

Hi I hesitate to chime in as you guys seem to know more than me re Y 90 than me already. But 2 cents from the peanut gallery. I had liver cancer (3 tumors) 2 years ago. My local doctors insisted my only hope was a liver transplant. But it would be a race to get on the list and get one before the cancer spread outside of the liver which would disqualify me. So during the months of going through those hoops I had Y-90 procedures 2 times.
Both events were at a hospital and was there about 8 hrs, went home same day. It was not fun but not terrible.
The 2 doeses were successful as while they did not kill the cancer but they shrunk the tumors greatly. Which did prevent the cancer from spreading until I had a successful transplant in 2024. Don't know if any of this helps but the very best of luck.

@craigcraig This is interesting, I had read that the Y90 was for shrinking tumors, not "curative," so I planned on asking my doctor about that, then the procedure was cancelled. The procedure itself sounds awful, but you say not terrible. I wonder what you would consider terrible. I don't like getting contrast dye with my MRI, especially when they have trouble getting a hit. Tolerable. Congratulations on your successful liver transplant. All information helps paint a fuller picture.

Hi. The local doctors had told me the Y 90 would not be curative for me. But hopefully would shrink the tumors to buy me time. And that worked like a charm. I cannot say if it was not curative just for me or for all cases. It may be for someone else ? Just guessing no as my tumors were caught early and on the small side but that is a call for your doctors.

For both of my procedures.... I live in a suburb of Denver. My wife drove me downtown to a hospital to start the procedures by 8AM. Prep then I went under and came out mid morning. Was not in bad pain either time but both times after I was told I had to remain 100% motionless in the bed. Don't recall why but was called out by the nurses for just moving my head a little. That and bathroom issues , I was not permitted out of the bed those days while there. Had to stay like that till late afternoon. Was back home by 5PM both times. Not really painful but uncomfortable, difficult and unpleasant recovery afterward. But just for one day and very much worth it for me. Hope that helps. Best of luck.

@ginkle999 Do you know what radioactive material you were injected with? I don't understand the roles of your care team. For example, I was diagnosed with stage 4 pancreatic cancer in 8/22. It spread primarily to my liver and bones. Treating my liver has been just as important as my pancreas. My liver had innumerable lesions with the largest being 8cm. I have the support of a multidisciplinary team that includes healthcare professionals from primary care, oncology, cardiology, pulmonology, hepatology, and others. They each have defined roles but collaborate to provide me with the best care possible. Most tumor boards are similar. In my experience, the lack of defined care team roles leads to confusion in diagnosis and treatment. If you don't feel comfortable with your current care, I highly recommend getting as many opinions necessary until you do feel comfortable. Use the process to interview healthcare professionals and assemble the best care team for you. Let's hope your lesion is benign and further care isn't warranted. But, it never hurts to have an alternative plan in place and a team assembled should the need arise. Make sense?

If you are interested in getting another opinion from Mayo, here is a link to initiate that process. https://mayocl.in/1mtmR63

@craigcraig As it was explained to me, the Y90 treatment is in 2 visits, the first one to "map" where to go in the liver and the second one to inject the drug. Is that your two visits or did you have two full procedures (so 4 visits total)? Just curious, do they do this procedure the same way or do different doctors do it differently? Both procedures involve the same steps, catheter threaded from my groin to my liver, CT scans to make sure it's in the right place, lots of drugs before during and after, the second procedure around 2 weeks after the first. All of the side effects would be after the second procedure when the radioembolization takes place. I'm allergic to CT dye, so extra medication to ward that off or ease it (hives). I'm also in recovery for 35 years and don't like taking anything other than Advil so the loading up on various drugs isn't great. What you describe as not being able to use the bathroom for hours after you wake up sounds barbaric. And I have trouble staying still, my body stiffens up and needs to move. But glad you told me, in case I do have the Y90. Thanks for your help.

@tomrennie I hope I'm not posting twice, this site confuses me a bit. Yes it makes perfect sense to assemble a care team should the need arise, and I'm researching doctors and facilities, Mayo among them. Right now we are still on hold until the tumor is large enough to biopsy or shows as cancer on the MRI. The PET/CT radioactive shot was FDG, a tracer. I also had a nuclear bone scan, which used Tc-99m MDP. I trust my doctor and her NP, but can't help but wonder if there's a more definitive answer out there or a different angle to come at this from. Am I really the only one with this particular set of lab/scan results? Maybe there are studies out there. If not, then someone should be writing me up. It sounds like you've been through a lot. I'm amazed at the stories I'm reading.