Dad diagnosed with CC, then had a PET that was clear?
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Hi Donna…
Sorry for the time laps in the response. I’m just reading your post now.
I also had a Klatskin tumor… Found with ultrasound, and then MRCP confirmed. The ERCP showed narrowing, but brushing biopsy was negative. More than 50% of the time it is a<span style=”text-decoration: underline;”> false negative</span> because CCA is hard to diagnose.
I also had a PET scan that did not show anything… <span style=”text-decoration: underline;”>But my stints obscured the view in that area</span>. This may be the same for your father.
I had a second ERCP with more extensive brushing, and that time it came up positive for Cholangiocarcinoma.
I was able to have a liver resection and the size of the tumor was 1.4 cm (Yet it had not shown on the PET scan.)
If his CA19-9 is elevated and continues to elevate this would be a sign of something. The CA19-9 can elevate from inflammation anywhere in the body (such as from an infection), but usually drops back down. Going from 600 in 2018 to 17000 now I don’t think is normal. (But I am not a doctor)
I agree with Mary’s post and suggestion… It is VERY important to get a second opinion with a specialist.
Best wishes to you and your dad!
Laurie
Thanks so much for the kind words and advice! My reason leading me to think that this is CC is because back in 2018 when he first went to the ER his CA 19-9 was over 600, then when he had to go back in October it was around 17000.
I also found it odd that even though the PET scan was negative, there was no follow up appointments. I would have thought with as sick as he was and having a metal stent placed, and with the MRI and CT showing a large mass that had spread to the lymph nodes, the Dr would at least want to follow up sometime after.
My dad is a very stubborn person so getting him to even go to the Dr. is a task. It usually takes him being so sick that he can’t go any longer so that does not help matters at all!
Hi Donna,
It is nice to hear from you. I am sorry your father is experiencing such an ordeal with so much testing without clear answers. He has really been put through the wringer trying to get a diagnosis so his jaundice and other health issues can be treated.
Cholangiocarcinoma can be notoriously hard to diagnose. I am not a doctor so cannot give medical advice, but my layman’s observation is that untreated cholangiocarcinoma tends to spread and advance. If your dad’s problems have been going on for more than three years without cancer being clearly evident, that would not be very characteristic of this cancer, although a few people do have slow-moving or unusual presentations.
Jaundice is a serious symptom and your father is not feeling well, so it seems important to keep looking for answers. One idea I would suggest is to gather his medical records and scans, and seek a virtual second opinion from a major medical center gastrointestinal practice. Usually our patients consult with cancer specialists, but from you describe, there is no clarity yet about whether this is cancer so maybe a liver specialist would be a good medical specialty to look into. My own diagnosis started with a hepatologist (liver doctor) who also looked into non cancer causes of the mass found in my own CT scan.
Another suggestion if you are still worrying this might be cancer is to look for a doctor specialized in cholangiocarcinoma since this had originally looked like a possibility, and these doctors will know a lot about bile duct concerns. The Cholangiocarcinoma Foundation website has a medical provider map of expert doctors. I will put a link for you at the bottom of this message. There are several internal medicine providers shown who are in Kentucky. But even if a cholangiocarcinoma specialist ends up ruling out cancer, the second opinion may help advance an alternative diagnosis that can lead to treatment and helping your father feel better.
You should be able to get suggestions on a second opinion from your father’s current doctors.
Here is the link to the specialist map:
I hope you and your father can find some answers. He is fortunate to have you helping him to figure out this difficult situation.
Take care, regards, Mary
- Hello, I’ve been reading these post for months now but this is my first time posting.
In 2018 my dad had a sudden onset of jaundice and wasn’t feeling well so we took him to the local ER. There he had a CT that showed a mass in the bile duct. CA 19-9 was over 600. He was sent on to the University of Kentucky hospital where more test were done, ERCP, biopsy brushing and a stent placed. Biopsy came back negative but Drs were still sure he had CC. He was released and scheduled to come back a month later for another biopsy and stent exchange. That biopsy came back negative also, the second stent migrated so it had to be removed and he refused to have another one placed.
He refused to go back to the dr for any more test. He seemed ok for the last 2 years, had some sick spells that got better without going to the dr. - Then in October of 2021 he started getting sick again, very jaundice, short of breath, lost a lot of weight from not being able to eat.
- This time he was sent to St Joseph hospital in Lexington Ky where test where done. CT and MRI showed a large mass, he then had a ERCP and biopsy where they placed a metal stent. The dr that performed the procedure stated that he had a large mass taking up a large part of the right side of his liver and had spread to the lymph nodes. She diagnosed him with CC and said there was nothing they could do and he wouldn’t make it.
That biopsy came back negative also. So they then wanted to do a PET scan to confirm CC. He went the next week for the PET scan and got the results the same day. Dr comes in the office and said he didn’t see anything, no mass.. nothing. He was good to go. No follow up appointments or anything.
It’s now been about 3 months and the jaundice is coming back and he is definitely not feeling well at all, and because the oncologist told him there was nothing wrong with him after the CT he is convinced he’s fine.
I just want to know has anyone else ever had a CT that was a false negative? And should he get a second opinion? Thanks!
- Hello, I’ve been reading these post for months now but this is my first time posting.
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