Spot on the liver: looking for advice

In My Humble Opinion
1

It’s not my liver, it’s my sister’s. But she’s asked me to go to her doctor’s appointment because “you are better at talking to doctors”. So I’ll mostly take notes, but I also want advice on what questions to ask.

My sister’s new PCP has done a bunch of tests and scans (I forget the complete story of why) and a spot showed up on my sister’s liver that they want biopsied. She was supposed to get it biopsied last Thursday, but they failed because the spot is in a weird location, maybe it’s close to the heart? The doctor thought she might need surgery to get a sample. But she has escalated and some other doctors are brainstorming if they can just do a biopsy somehow. She’s bringing the scan to her appointment on Wednesday, to talk to the guy who does liver transplants locally. (Not that she’s looking for a transplant, but I guess he’s supposed to know his way around livers.)

She’s anxious, because she asked her PCP if it looks normal for a benign thing, and he said “no”, but on further questioning, it seems the answer isn’t “no, it looks malignant”, but “no, it looks weird and we have no idea what it is.”

Anyway, I’m probably mostly just moral support. But what questions ought I ask the liver surgeon?

2

Oh, and they didn’t find the spot because she was having liver-related problems. She got scanned because she was having heart issues. They did a CT scan on her heart and found a mass on the liver, next to the heart.

She had weird EKGs and doesn’t remember what else was wrong with the heart. I suggested she ask her doctor.

3

I’ll throw this out there in case it’s helpful: Ask if it’s possible the spot is an artifact. When I had appendicitis a few years back, they did a CT. In examining it later, they saw a spot on the pancreas. I had an MRI. The spot turned out to be an artifact, but they found another spot on the pancreas. This time, I had to be admitted so they could do an ultrasound. (The pancreas can’t be reached by regular ultrasound, so they send an ultrasound device into the stomach.) That time, the spot turned out to be a vein.

Since the docs are talking about biopsies instead of repeat scans, I’m assuming this isn’t likely, but it doesn’t hurt to ask.

4

Thanks. Yeah, and she says her PCP doesn’t want to jump to “surgery to get a sample”, either, so hopefully they figure out a way to do a simple biopsy. Or a different scan. Or…

5

I don’t have any specific advice about the liver issue, but I will say that having two people at the appointment is an excellent idea. One person talks to the doctor and the other takes notes and makes sure that all your questions get addressed. Get your list of questions together in collaboration with your sister and WRITE THEM DOWN. Don’t expect that your sister or you will remember anything that you wanted to bring up, or anything that’s said during the talk. In fact you might want to make an audio recording of the whole conversation on your phone (ask the doctor if they’re ok with this). Bring in your list and check things off as they get answered.

Just off the top of my head, some things I’d ask are:

  • How likely is it that the thing seen in the scan is cancerous?
  • If it’s cancerous, is it likely to be primary or secondary?
  • If it’s cancerous, what stage is it? What would the treatment be?
  • If it’s not cancerous, what else could it be? Would any of the other possibilities be serious or need treatment?
  • Are there other tests that should be done in addition to the biopsy? (Hepatitis? Other blood tests?)
6

As a physician I’d want to know the following:

  • Is the lesion cystic or solid?
  • Size and location?
  • What imaging studies have been done? MRI/CT/Ultrasound
  • Any other abnormalities seen on the scans?
  • Any evidence of liver disease like hepatitis or cirrhosis?
  • Is watchful waiting (with a repeat scan in 12 weeks or so) being considered?

Once I had that info, I’d focus my further questions from the answers to those.

7

Thanks.

So far it’s just the one CT scan, unless they also scanned to attempt to guide the biopsy. And I’m pretty sure she would have mentioned if there were any other evidence of liver disease, like hepatitis or cirrhosis.

I’ll write all these down and run them by my sister and we’ll bring a list.

8

I’d throw in there “What sort of symptoms should we be keeping an eye out for, if this turns out to be something important.” Might not be readily answerable without more testing, though.

9

Definitely IANAD, but if it seems they are concerned it might be cancer, you might ask if a PET scan should be performed.

10

Update:

We saw the doctor today. He walked through what was known to date, and in that process, addressed most of @Qadgop_the_Mercotan ’ s questions – some by asking my sister, and others by looking at her record. He seemed very engaged and smart, and he was very kind, with a good “bedside manner”.

This has been going on for a lot longer than I realized.

My sister had a heart CT in 2022 to do calcium scoring, and these lesions weren’t noted at the time. She had another in Mar of 2023 after an abnormal EKG, when this was first noticed. (There some calcification near the heart, but it’s basically fine.) A follow-up ultrasound didn’t spot it. So she had an MRI in August, with contrast agent, which did.

It’s 2 or maybe 3 lesions. They are not cystic. The two that were imaged clearly were 1.6CM and 2CM, and both are on the lobe of the liver close to the heart.

This led to a failed attempt at a biopsy – the doctor practicing in a suburban clinic said it was too close to the heart for him to biopsy, and recommended a surgical biopsy.

That’s when my sister called in the affiliated major urban hospital. The guy she spoke to today is in their liver transplant unit. He’s pretty sure that they have the tools to do a biopsy. Unfortunately, the hospitals don’t natively share images (they do share test results and such) so my sister brought a CD from the suburban hospital with the relevant images. Unfortunately, a system was down and they couldn’t upload them, so this doctor only read the descriptions, and could not see the actual scans.

There don’t seem to be any other liver abnormalities. The rest of the liver looks okay, and her latest blood tests show normal liver enzymes, and a lot of other normal blood test results. She has a few years of normal liver enzymes in her record.

She does not have cirrhosis, and probably doesn’t have hepatis, although the doctor ordered tests today for Hep A, B, and C, because “you are in a liver clinic, we always do that. And if you aren’t immune, we may recommend vaccines for Hep A and B.” He also said he would check for AFP, a tumor marker. He said with her solid history of normal liver function he wouldn’t be doing a large battery of other blood tests.

The doctor asked about a family history (lung and kidney cancer, no history of liver problems) and also asked if she ever took hormones, which can be associated with liver problems. She hasn’t, but as a young adult she saw an endocrinologist because she was abnormally sensitive to the normal levels of hormones in her body. (She grew heavy sideburns despite having ordinary female levels of testosterone, for instance.) He also asked about alcohol, tobacco, and other recreational drugs. Or maybe the woman who did intake and took her pulse and stuff did that. Anyway, she probably drinks less than a bottle of wine in a year, and that’s it, so nothing there.

He says that the first round of doctors ruled out a hemangioma and invasive cancer, but it could be focal nodular hyperplasia, or a hepatic adenoma, and there is a chance that it’s a cancer that doesn’t yet look invasive on the scans. (or something weirder, I guess, but that’s what he’s thinking.) He says that when there’s a lesion in a liver that has a lot of other damage, they think cancer, but lesions in apparently healthy livers are usually benign. But the fact that it’s (at least) two lesions increases the odds of cancer.

His plan is:

  • He’s bringing her case to the “tumor board”, which is a multidisciplinary group of everyone in the liver transplant unit. They will look at the scan together and discuss what they think she should do. That will meet in 2 weeks.
  • He’s scheduled her for a biopsy. “It can be cancelled if the board doesn’t think it’s needed, but I expect they’ll want to do it”. He thinks they can do a CT guided biopsy even if it’s too hard to do an ultrasound-guided biopsy. But also, the folks who do the biopsies will be at that board, and can judge if they can do it.
  • He’s scheduled her for a follow-up appointment in 7 weeks, after these would have been done. (The people who do a biopsy will also talk to her, shortly after that happens.)
  • He’s scheduled her for a repeat MRI in 3 months. Again, it can be canceled, but many of the possibilities would suggest checking to see if the thing is growing, or just sitting there.

And I guess we’ll know more after whatever combination of these things actually happens.

Oh, and the two questions he didn’t explicitly hit that I asked were whether the lesion was cystic or solid, and what sort of symptoms she should be watching for. He said if she gets bloated, her belly fills with fluid, she develops jaundice, or she has abdominal pain that is abnormal for her (so not her usual GERD symptoms) that she should check back.

11

Wow. My late first wife got absolutely first class care which kept her alive a lot longer than anyone expected. IMO Sis is getting the ideal full-bore program of smart, well-equipped folks working hard for her. Whatever her fate, it sounds like this team can maximize it.

Color this totally amateur but highly experienced spectator very impressed. Hugs to you both.

As to bloating, belly distension, and jaundice: daily weighings will pick that up before ill-fitting clothing, tight skin, or other things will. My poor wife was gaining a pound of fluid a day when things first started going off the rails for her. Up one lb one day is not a cause for panic or even much concern. Up one pound a day for 3 straight days is time to sound Battle Stations and get to the clinic ASAP. IOW weight fluctuates naturally. An upward trend however is bad. Overreact early and avoid the rush.

Here’s hoping her issue proves to be mostly false alarm, not mostly worst-case.

12

Thanks! I’ll pass that along to my sister. And my condolences for your first wife.

13

Make sure she knows to keep a routine for the weighings, so she has apples to apples comparisons as much as possible. I weigh myself before I shower, without any clothes on, in the morning. Ideally it would be before I drink my morning coffee, but that never happens, and I drink the same amount of coffee most days. The important part is to minimize variance, like wearing shorts with no shoes one day, and jeans with sneakers the next.

14

My read is that the doctor was downplaying the likelihood of cancer in large part because there’s nothing anyone can do about it until they have the information they are planning to gather. And worrying doesn’t help. But I also think that he thinks it’s fairly likely to be one of the less serious possibilities.