CT results and new panic...

[Scared1234]

But the thing is, I was told about the biliary ducts but he pretty much said it was more than likely from having my gallbladder removed. I don’t recall him saying to follow up on that specifically. I do remember him saying to follow up about the kidney cysts. I specifically asked him about the kidney cysts and asked if that was like cancer and he said NO!
Maybe he did say to follow up about the duct issue as well?! I was so tired at that point and worried that I’m not sure. It is listed on my scan findings but not on the page that says what I’m following up about. He did say to take all my paperwork and results to my doctor when I went and she could decide what she wanted me to do. I don’t know if that was his recommendation for kidneys or both. I wish I would have asked. I specifically asked if I needed to be worried about the bilirubin being 1.1 and he said no because the rest of my numbers were fine. I wouldn’t be worried about it if I hadn’t had right side pain about 2 weeks before I went in. For the most part, it had gone away, I think, and moved to my lower abdominal. But now it’s back. I’m hoping it’s just my mind playing tricks on me.
I’m also not sure... when they say pain under ribs. I have a hard time deciding if the pain is coming from UNDER the rib or on top of the rib? And it’s in several different places and it comes and goes very quickly.
I’m still waiting on my GI doctor and PCP to get back with me regarding the next steps.
Anybody else with pain on the side of the liver and what it ended up being?

 

[Scared1234]

I can’t tell if my nausea and bowel symptoms are from anxiety or from my liver! It gets so frustrating to not get answers for a long length of time.

 

[SallyHart]

Hello, I am so pleased that your scan was relatively great news. I am also sure if the Doctor thought you were in any danger whatsoever he would have told you to see your pcp as soon as possible...I gather he didn't do that? Now here is a story I will share with you. I was having UTI after UTI for sometime a little while ago. They wanted to check my bladder because it was very painful. I was referred straightaway by the hospital to a Urologist...not to my pcp but straight to the specialist. The bladder was fine but they thought they saw a problem with my kidney so they sent me for a special kidney scan which is different to your average CT. Then I had to go under anesthesia for the Urologist to actually look at my kidneys from the inside. It all turned out well but the moral of the story here is if the ER saw anything remotely suspicious he would have referred you to the specialist and not have you wait to see your pcp. I have been where you are, I have picked apart CT scans and blood results till I am blue in the teeth and non of that helped me at all. I now do not ask for reports or look ay patient portal. I have learnt to help myself I must just wait for the doc to tell me if they are worried. This is just the start of ME helping myself, I didn't do myself any good picking apart the reports. All this did was add fuel to an already burning fire. It has not been easy and I am still struggling. What would I do in your shoes? I would try and see my pcp sooner so that I wasn't sat around going over things. HA drives us beyond despair, it frightens us and takes over our lives. Please be assured if the ER had no concerns then relax a bit with that. I would recommend that you get your cysts evaluated. My aunt has these and goes for yearly scans to check they are not getting bigger. Love and hugs to you.

 

[Scared1234]

Thank you! He did refer me to my PCP but I “think” he said for the cysts so she could decide if I needed to see a specialist. I don’t think he said for the bike ducts. But I don’t think he knew I was worried about that and I went in for lower abdominal pains. Not the upper ones I’ve had off and on for the past few weeks. I think I mentioned them but I really don’t remember. It’s all kind of a blur. Thank you for sharing your story of the specialist. I do know he said there wasn’t anything immediate that I needed to stay in the hospital for so I was good to go home. If they suspected cancer on the bile duct, would they have kept me for further scans?! I don’t think that is considered immediate either. I didn’t ask for my papers, he gave them to me and said it was so I can share them with my PCP. I did do the patient portal to look at an old scan from a different location and that’s when I found out the ducts weren’t dilated 7 years ago! I guess if there was any other logical explanation, I could calm down some. But there really doesn’t seem to be. Everything pretty much points to Bile Duct/Liver cancer. And all this time I had been worried about pancreas and ovaries. Ugh! I’m hoping to hear from my GI sometime soon so maybe then I can get some more answers.
I hear you on waiting for the doctor to say if you should be worried. But my niece is a RN and when she saw my CT findings she said I needed to follow up with that and that’s when I got so worried. I feel like doctors are so quick to dismiss symptoms, especially since I’m younger than average and just brush it off to gallbladder removal. I feel like if I’m not on top of my records and appointments, then I’ll slip through the cracks.

 

[SallyHart]

Anything suspicious would have been noted, even in the bile ducts. What happens is, they get an overall scan. like you had and then if anything further needs attention they will tell you that. If something is seen that is suspicious they would have said....we have seen such and such and it needs a closer look. When they thought I had a kidney issue they said we need to do a special scan of your kidney. If your liver is slightly enlarged, like others have said it is just very minimally enlarged and of no concern to them. I can't speak about bilirubin in urine, as I don't have any experience with that. Ask all your questions when you see your pcp. Write down all your concerns before you go, yes you may have to have further looks at your kidneys but it is better and good that we live in a world where we can be looked at like this. Take it as positive steps. Things change size all the time, my Uterus is smaller than it was 1 year ago, my ovarian cyst is smaller than it was 3 months ago....things will change in our bodies. Love and hugs

 

[Scared1234]

Thanks!

 

[Scared1234]

It’s so hard to know what is anxiety symptoms and what are symptoms that could point to bile duct/liver issues... when I felt a bit nauseous around Christmas, I thought it was because I was worrying about being nauseous over pancreatic cancer. Then it went away and I got my appetite back. Now, since last Thursday, I’ve been nauseous again, and I’m not sure if it’s from nerves or cancer, or both! So frustrating! I’m glad we have this outlet to let us vent though, because most people don’t understand!

 

[Asgmiami1]

It’s so hard to know what is anxiety symptoms and what are symptoms that could point to bile duct/liver issues... when I felt a bit nauseous around Christmas, I thought it was because I was worrying about being nauseous over pancreatic cancer. Then it went away and I got my appetite back. Now, since last Thursday, I’ve been nauseous again, and I’m not sure if it’s from nerves or cancer, or both! So frustrating! I’m glad we have this outlet to let us vent though, because most people don’t understand!

I ask a lot so forgive if Ive already asked, but hiw are you doing now?