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When to seek a 3rd opinion?

Posted by ginkle999 @ginkle999, Nov 26, 2025

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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craigcraig | @craigcraig | Dec 12, 2025
In reply to @ginkle999 "@craigcraig As it was explained to me, the Y90 treatment is in 2 visits, the first..." + (show)
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@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.

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@ginkle999 Thanks, you just taught me some stuff. Now that I recall "mapping" was definitely mentioned. It has been over 2 years now but I was only at the hospital for that stuff 2 times. So I bet one was mapping and one the event ?? BUT the long day, motionless and bedpan only option was in fact both times, so ?? My second was about a month or more after the first though. p.s. Glad you can use Advil. Mayo has me on Tylenol only which never helps. Used Advil before the transplant and it worked much better for me. Hope things go well. Very very best of luck on your journey.

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craigcraig | @craigcraig | Dec 12, 2025
In reply to @craigcraig "@ginkle999 Thanks, you just taught me some stuff. Now that I recall "mapping" was definitely mentioned...." + (show)
Profile picture for craigcraig @craigcraig

@ginkle999 Thanks, you just taught me some stuff. Now that I recall "mapping" was definitely mentioned. It has been over 2 years now but I was only at the hospital for that stuff 2 times. So I bet one was mapping and one the event ?? BUT the long day, motionless and bedpan only option was in fact both times, so ?? My second was about a month or more after the first though. p.s. Glad you can use Advil. Mayo has me on Tylenol only which never helps. Used Advil before the transplant and it worked much better for me. Hope things go well. Very very best of luck on your journey.

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@craigcraig Sorry. Forgot to mention. While both days were very unpleasant it was just 2 bad days about a month apart. And it worked for me and could be why I made it to transplant and am still standing today , and praise God doing well today. Stay strong (---:

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ginkle999 | @ginkle999 | Dec 13, 2025
In reply to @craigcraig "@ginkle999 Thanks, you just taught me some stuff. Now that I recall "mapping" was definitely mentioned...." + (show)
Profile picture for craigcraig @craigcraig

@ginkle999 Thanks, you just taught me some stuff. Now that I recall "mapping" was definitely mentioned. It has been over 2 years now but I was only at the hospital for that stuff 2 times. So I bet one was mapping and one the event ?? BUT the long day, motionless and bedpan only option was in fact both times, so ?? My second was about a month or more after the first though. p.s. Glad you can use Advil. Mayo has me on Tylenol only which never helps. Used Advil before the transplant and it worked much better for me. Hope things go well. Very very best of luck on your journey.

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@craigcraig This is all good information. Because of the location of the tumor, radioembolization is the only choice. It is at the very top of my liver, under my ribs. At least for now that is the situation, I'm just scheduling my next MRI, more will be revealed. Back at you, very best of luck on your journey.

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ginkle999 | @ginkle999 | Dec 13, 2025
In reply to @craigcraig "@craigcraig Sorry. Forgot to mention. While both days were very unpleasant it was just 2 bad..." + (show)
Profile picture for craigcraig @craigcraig

@craigcraig Sorry. Forgot to mention. While both days were very unpleasant it was just 2 bad days about a month apart. And it worked for me and could be why I made it to transplant and am still standing today , and praise God doing well today. Stay strong (---:

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@craigcraig Thank you for reminding me to be grateful for the excellent care I've gotten so far. My doctor and NP are excellent, available whenever I need them, follow up, etc. I have no complaints except for the waiting. I would do anything to stay alive. My best to you.

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