CT results and new panic...

[Scared1234]

This seems to be never-ending. I had previously posted about being worried about Pancreatic Cancer, maybe liver and then Ovarian. I finally went to the ER yesterday because I wondered if I had a kidney stone. I still had blood in my urine but nothing else to indicate UTI.
They did a CT scan and my pancreas looked fine, didn’t mention anything abnormal on my liver, but my kidneys both have multiple cysts on them. I’m not too worried about that. What I am worried about and the ER doc didn’t seem super concerned was... I now have mild intrahepatic bilary ducts dilation and the common bile duct is dilated up to 8.9 mm but in one section more normal at 5.0 mm. They said it was probably due to my gallbladder being removed. I do know it was only 3 mm 5 years ago when I had my ultra sound scan for my gallbladder done. I also had bilirubin in my urine and it was elevated by 1 point on my blood work and that’s not normal for me. I’m hoping it’s from the antibiotic I was on because the pharmacist said it could cause changes in my urine color, etc. So needless to say, I’m now panicky over having bilary duct cancer. I know it’s rare, and I know I’m on the younger end of it, but having these bilary ducts so dilated and having the elevated bilirubin concerns me. The prognosis for Bilary Duct Cancer is super poor.
Wouldn’t you think if there was a tumor blocking the duct, the CT scan would have shown that? It says nonspecific and probably related to my gallbladder removal. My other blood work for the liver was fine. So the dr said he wasn’t concerned about my level of bilirubin. But I read it’s a sign of bilary duct cancer. I have had some itchy hands and feet but that’s when I was worried about my liver and pancreas and thought it was a symptom. It’s never a ton of it itchiness either. I’d think if it was from bilirubin it would be extreme itching. Of course I didn’t think to ask the dr if I should be worried about bilary duct cancer because it wasn’t on my radar, although I do know someone who died from it. I’m just sitting here waiting for my bilirubin to increase more and cause me to be jaundice. That’s when I’ll really freak out because apparently that’s the first symptom of bilary duct cancer.
Any thoughts? I’m so tired of being worried but I do want to figure out if it’s something serious but I’m so scared and worried.

 

[Bobnnat]

Two things to remember. The doctor was not concerned. He did not recommend further investigation. I just read up about it out of curiosity. I looked for an especially high level, professional study. In the western world ( US, Canada, UK are mentioned) the incidence rate for women is between 1 - 100,000 and 1 - 200,000. That didn’t give age-specific rates so your age makes it even less likely.

You can’t sit around “waiting for jaundice” Look and you’ll think you see it. I know. Of course what you see will be normal. Seeing what we fear is similar to anorexia. The person is clearly not overweight, but the person swears they see that they are.

 

[Scared1234]

I also read on the CT that my liver was 15.7 cm and when I looked it up, it says anything over 15 is considered enlarged. Why wouldn’t the doctor mention that? The only thing on my document was the renal cysts and then what I went in for (abdominal pain and back pain).
Unfortunately, I’m the last week, I’ve had pain on my right side, which isn’t common for me. The hope I’m holding onto: surely if it was large enough to cause issues, it would have been seen on the CT scan??!!

 

[JustMe]

Can you call where you went and ask for a better explanation of your results and go over your questions with a dr or nurse there?

 

[Bobnnat]

That’s minimally over 15, and you’re basing your conclusion that it’s a problem based on the internet. If the liver size concerned them it would be on the report as a problem and you’d be told to follow up with your doctor. The pain is likely muscular, aggravated by the tightening caused by anxiety.

BTW, gall bladder cancer, as rare as it is, is the most prevalent of the biliary duct cancers. You don’t have a gall bladder so my goodness it’s like 1 - 1,000,000!

 

[Scared1234]

Can you call where you went and ask for a better explanation of your results and go over your questions with a dr or nurse there?

I doubt it because I ended up in the ER because I was hoping it was a kidney stone causing my concerns. Can you just call an ER and ask that? I figured I’d have to wait until I can get in touch with my PCP.

That’s minimally over 15, and you’re basing your conclusion that it’s a problem based on the internet. If the liver size concerned them it would be on the report as a problem and you’d be told to follow up with your doctor. The pain is likely muscular, aggravated by the tightening caused by anxiety.

BTW, gall bladder cancer, as rare as it is, is the most prevalent of the biliary duct cancers. You don’t have a gall bladder so my goodness it’s like 1 - 1,000,000!

I read that about 8,000 people a year get bilary duct cancer and most are over 60. So I know it makes my chances low. I guess it worries me more bc my bilirubin was 1.1 and I also had it in my urine sample.

 

[Jgriffin]

This seems to be never-ending. I had previously posted about being worried about Pancreatic Cancer, maybe liver and then Ovarian. I finally went to the ER yesterday because I wondered if I had a kidney stone. I still had blood in my urine but nothing else to indicate UTI.
They did a CT scan and my pancreas looked fine, didn’t mention anything abnormal on my liver, but my kidneys both have multiple cysts on them. I’m not too worried about that. What I am worried about and the ER doc didn’t seem super concerned was... I now have mild intrahepatic bilary ducts dilation and the common bile duct is dilated up to 8.9 mm but in one section more normal at 5.0 mm. They said it was probably due to my gallbladder being removed. I do know it was only 3 mm 5 years ago when I had my ultra sound scan for my gallbladder done. I also had bilirubin in my urine and it was elevated by 1 point on my blood work and that’s not normal for me. I’m hoping it’s from the antibiotic I was on because the pharmacist said it could cause changes in my urine color, etc. So needless to say, I’m now panicky over having bilary duct cancer. I know it’s rare, and I know I’m on the younger end of it, but having these bilary ducts so dilated and having the elevated bilirubin concerns me. The prognosis for Bilary Duct Cancer is super poor.
Wouldn’t you think if there was a tumor blocking the duct, the CT scan would have shown that? It says nonspecific and probably related to my gallbladder removal. My other blood work for the liver was fine. So the dr said he wasn’t concerned about my level of bilirubin. But I read it’s a sign of bilary duct cancer. I have had some itchy hands and feet but that’s when I was worried about my liver and pancreas and thought it was a symptom. It’s never a ton of it itchiness either. I’d think if it was from bilirubin it would be extreme itching. Of course I didn’t think to ask the dr if I should be worried about bilary duct cancer because it wasn’t on my radar, although I do know someone who died from it. I’m just sitting here waiting for my bilirubin to increase more and cause me to be jaundice. That’s when I’ll really freak out because apparently that’s the first symptom of bilary duct cancer.
Any thoughts? I’m so tired of being worried but I do want to figure out if it’s something serious but I’m so scared and worried.

I'd go back in and ask for a print out summary or maybe you have one and call you doctor and ask for a call back and just say I feel like I'm freaking out and just wanted to tell you the findings and make sure I don't need to get in with you right away.

 

[Scared1234]

I have a print out summary. I have a dr appt already scheduled for next Thursday anyway but I did send a message on the portal but I’m not sure when the doctor will be back in to answer the questions.
The only “diagnoses” on my discharge papers was : kidney cysts and blood in urine

Would they have listed the biliary issues if that’s what they had wanted me to follow up on?
Seems like they aren’t worried bc it’s common to have the ducts dilated after gallbladder removal. If it wasn’t for the fact my bilirubin was 1.1, I probably wouldn’t worry as much. But elevated bilirubin and dilated ducts point toward an obstruction, but non were noted.

 

[Jgriffin]

I have a print out summary. I have a dr appt already scheduled for next Thursday anyway but I did send a message on the portal but I’m not sure when the doctor will be back in to answer the questions.
The only “diagnoses” on my discharge papers was : kidney cysts and blood in urine

Would they have listed the biliary issues if that’s what they had wanted me to follow up on?
Seems like they aren’t worried bc it’s common to have the ducts dilated after gallbladder removal. If it wasn’t for the fact my bilirubin was 1.1, I probably wouldn’t worry as much. But elevated bilirubin and dilated ducts point toward an obstruction, but non were noted.

Not sure on any of that. I've had my gall bladder removed but haven't had a need for a scan in that area. I went to the er once years ago and they said my liver was enlarged. Went to my doc the next day and she said you sound like you have the sniffles. I said yes I have a cold. She said that's why your liver is enlarged, your fine. Its been 15 years, I survived

 

[Scared1234]

Good to know...they didn’t say mine was enlarged. I should not have googled the average size or what it meant to have the enlarged biliary ducts. The only diagnoses: kidney cysts is the least of my worries now!
I do believe the doctor in the ER would have put that on my follow up list if he was worried. I just hope they aren’t blowing it off because of me having my gallbladder removed. And then it turning out to be cancer. My scan showed scarring on one lung lobe and he didn’t even verbally mention that to me and it wasn’t on the findings section. So it makes me wonder if it’s worse that the biliary ducts IS listed in findings.

 

[Scared1234]

I’m thinking about calling the nurse line or the ER line and asking if there’s a possibility of a blockage in the biliary duct or if that would have been seen. I am still having right side pain and it’s radiating to my shoulder, like it did with my gallbladder. I read that it can be from cancer in the biliary duct or a blockage of a stone or sludge. I’m not sure if I should call and ask if I need to go back in or if I just wait it out until Thursday. I’m still not eating because I’m so worried. I have lost weight the past 3 days because of worries about what’s going on inside of me. I really want answers but I’m scared of the answers. I’m sure it will be a long process of referrals and testing and waiting and my nerves can’t take that! If I knew that the ER would look again at my ducts for a blockage I would probably fork over the money and go again! But I’d look like a crazy fool (which is how I feel right now.). I can’t believe I went in for something else and came out with a probably worse case that wasn’t even on my radar!!

 

[Scared1234]

I am super concerned about the fact I had bilirubin in my urine! That’s not a good sign! It points to liver damage and disease and can be from the biliary duct cancer. I am getting more and more concerned about this. I know the stats of me having this are so low but it has to be someone, so why wouldn’t it be me? Especially when I have so many of the early symptoms?!

 

[Bearcat999]

I am super concerned about the fact I had bilirubin in my urine! That’s not a good sign! It points to liver damage and disease and can be from the biliary duct cancer. I am getting more and more concerned about this. I know the stats of me having this are so low but it has to be someone, so why wouldn’t it be me? Especially when I have so many of the early symptoms?!

The CT scan would have shown exactly what was going on in there.

 

[Scared1234]

I found an old CT scan from a few mo this after I had my gallbladder removed and it showed no dilation in the ducts. It did show a few of the renal cysts but apparently I was never told about them. This makes me even more worried about my liver and the ducts!

 

[Scared1234]

The CT scan would have shown exactly what was going on in there.

Even if the tumor was super tiny?!

 

[Scared1234]

I guess I never realized that digestive issues could be tied to the liver too. Now I’m thinking that what I thought was issues in my tummy, was actually the part of my liver that’s on the left side. I also didn’t realize that diarrhea and occasional floating stools was from the liver. I thought it was from my anxiety. Or food sensitivities. I didn’t realize it was related to bile from the liver. Still hoping that if there is a tumor there, it would have been seen on the CT scan.
Anybody else with similar issues?

 

[bin_tenn]

If you have ongoing concerns your doctor is the best person to consult with. They should have access to your hospital visit records as well. IMO it sounds like typical anxiety, second guessing the clean bill of health provided by the ER.

 

[Scared1234]

But it wasn’t really a clean bill of health. It stated I had dilated biliary ducts and elevated bilirubin. Even though the ER doctor didn’t seem concerned, I realized later that it could indicate cancer. I wish it was just me second guessing. There’s also the issue with the cysts in my kidneys and the blood in my urine. That’s actually the least of my worries right now though.
I’m sure it’s going to be a long and stressful week of waiting for appointments and testing and results...
Thanks for listening...

 

[Scared1234]

I’m securely feel a bit nauseous today. I ate but it was kind of forced. I’m really hoping this is due to anxiety and stress and not cancer. My GI has reviews my portal message but still no response. I also read that your bilirubin could be increased if you hadn’t eaten much or were dehydrated. I’m hoping and praying that’s the case. I’m hoping I can get my bilirubin retested today and get results tomorrow. See if it’s the same or not.
*really, not securely!

 

[matisworried]

it sounds like the only real problem you have is your anxiety.

here's the thing... your scans were reviewed by at least two doctors before you were told about them - a radiologist, who's entire job is reviewing scans like yours, and the doctor that ordered them. if there was anything to be concerned about, you would have been told. even if that's not the case (it is) there is NOTHING you can do about it right now and freaking out about it will do you absolutely no good. even if it were something serious (IT'S NOT) it's not a medical emergency and can wait until your follow-up appointment. i know it is difficult but you really should try and keep yourself busy. stay active. force yourself to lead as much of a "normal" life as you can.