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When to seek a 3rd opinion?
A year ago, my AFP went from normal range to 2400 and a lesion was found on my liver, too small to biopsy and too small to make my AFP so high. After a year of MRIs and nuke scans etc., no primary cancer was found, which my doctor had suspected. They were going to treat me with radioembolization but the Tumor Board said "wait till the labs match the tumor." This makes sense, that was October 2024. My next labs/MRI are in January 2026. They say my tumor is too small to resect, so now it is a waiting game (MRIs every 3 months) to see if tumor has grown. My question is, should I be seeking another opinion (Interventional Radiologist and Tumor Board being first and second) or should I just stay the course? Has anyone had this experience?
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@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.
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1 ReactionThe 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.