Doctor says not to worry about findings on my CT scan. I'm worried. Whom should I go to for reassurance/confirmation?

December 29, 2012 7:43 AM

CT scan shows choledochocele and liver cysts, should I really not worry?

Hello.
After a routine, oh you're fifty now, exam at a urologist, he said ultrasound showed a ureterocele and a possible choledochocele. He said don't worry but get a CT scan just to make sure he was right.

He was right. I have a ureterocele, which basically if it doesn't cause harm, leave it alone. Also a choledochocele, which he also said is probably benign, but go see a Gastroenterologist since this isn't his specialty. He said I have nothing to worry about.

Of course as soon as got home I looked up choledochocele and learned it is a cyst on my bile duct. Different medical sources say it is a problem, and has a small but significant chance of leading to cancer, to others saying that a choledochocele is different from a bile duct cyst and that it is *not* a risk factor for cancer.

As an added bonus, I saw the CT scan report from the radiologist and it mentioned 'at least 6 cysts' on my liver. My urologist didn't mention that. I didn't notice it until I got home. Of course the Internets basically say that lots of people have liver cysts and they are almost always benign and of no consequence, especially if asymptomatic. A lot of people don't even know they have them until they get a CT scan for something else. My experience, no strangeness in blood, no symptoms at all, but still the nagging thoughts in the back of my mind...

When a layperson hears somethingocele, mass, cyst in his or her innards,said layperson will likely freak out. Even if told it is nothing. Even if this was probably a condition he had lived with unknowingly his or her entire life. Intellectually I know this, and I also know there are no guarantees but the odds are incredibly good that it is of no account. Yet *someone* has to be the rare unlucky exception statistic.

So I know YANMD, but if you are a medical professional with some knowledge, or if you have similar experiences any added or firsthand info would be greatly appreciated.

I do have an appointment with a gastroenterologist on Jan3rd (first day I could get). She comes extremely well regarded from my wife and a friend who've both gone to her.

Bonus question, should I go instead to a hepatologist, since it is liver + bile duct?

posted by xetere to health & fitness (3 answers total)

Think of it more like a mole that you just noticed. I don't think most people freak out about those. Just let the doctors track it for a while and see of it does anything weird before you start getting anxious.
posted by empath at 7:58 AM on December 29, 2012 [2 favorites]

I'm not your doctor, and I'm nowhere near a gastroenterologist or a hepatologist, but I do a lot of abdominal CT scans looking for things. Almost every day I see scans on older people that reveal some kind of cyst, nodule or whatever somewhere. It's extremely common. We call these sorts of findings "incidentalomas".

One problem with the increasing frequency of CT scans (aside from radiating people and increasing their risk for future cancer, and the cost) is that more and more incidentalomas are found, and oftentimes when you find an incidentaloma, follow-ups are advised by radiology and/or the patient gets worried and starts doing things about it, like booking appointments with specialists, and the more that those things happen, the more they lead to more CT scans, more ultrasounds, biopsies, needle aspirations, blood work, surgery, and what have you. All these things involve time, energy, money and sometimes medical risk. This is why it is so frustrating that there are places out there that will do full body CT scans for people "just to screen for anything unusual". Anecdotes about such things are not helpful, because it really doesn't matter if someone out there got their cancer diagnosed in a similar way - that just drives the anxiety and money spending and so forth of a million other people who are going to turn out to have nothing, a similar phenomenon to cancer screening tests that are not 100% specific for cancer, false positives can lead to more problems/costs than the true positives are diagnosing/saving costs on.

Can't comment on your case specifically. But if it were me, I'd rather see a nice, highly recommended gastroenterologist than an unknown hepatologist. Choledochocele is generally considered a type of bile duct cyst, and potentially a risk factor for developing cholangiocarcinoma. Consider how your reaction might differ to a situation in which your doctor diagnosed you with a risk factor for esophageal, colon, gallbladder, kidney, thyroid, and pancreatic cancer, amongst other diseases - I'm talking about obesity. Would you be freaking out like you are now?
posted by treehorn+bunny at 8:55 AM on December 29, 2012 [4 favorites]

Thank you treehorm+bunny. That is very reassuring. For some reason, getting an opinion from a stranger 'in the business' resonates.
posted by xetere at 10:54 AM on December 29, 2012