Hi, everyone. I'm new here, and very frustrated.
About a year ago, my husband started having stomach discomfort. We just assumed it was stress (at the time it started, I was pregnant with our very unexpected third child and he had tons going on at work) or that he was eating meals that were bothering him. He was also having dark urine, but we figured he wasn't drinking enough. He probably should have seen a doctor, but he hadn't seen a doctor in seven years and wasn't about to start going.
Then, six weeks ago or so, we both came down (we think) with a horrible stomach bug. He had several days of diarrhea, I threw up for days and got so sick I ended up in the ER with dehydration. Then, about a week after his symptoms had passed, he noticed his eyes were looking yellow and realized that he'd had itching and light stools for a while. Concerned about jaundice, he went to urgent care.
Urgent care kept him for about five hours, did a blood panel and an abdominal U/S, and sent him home with a diagnosis of hepatitis. He had a follow-up that Monday where they were supposed to go over the results, but the blood tests results were there, so they ran the hep tests again. The following week, all the hep tests were negative, and they ran some autoimmune tests. A couple of those weren't ordered and had to be re-run, and he was in the process of waiting for those when he got really, really sick. He was extremely yellow, in horrible pain, dizzy, confused, and freezing cold. I took him to the ER, and he spent 9 days in the hospital.
At the hospital, they ran a bunch of tests: U/S, CT, MRCP, ERCP, tons of blood panels. They kept changing their diagnosis, but it was hard to know what was going on, because they were extremely uncommunicative with us. They released him 3 days after his ERCP (where they inserted a stent in his common bile duct that seems to be working some but not great; after the procedure he was in the worst pain he'd been in for about 48 hours). The ERCP showed, according to his GI, that his liver ducts "looked weird" (seriously, that's what he said). From the procedure reports we now have copies of, we know that from his very first U/S at the first ER visit, he showed intrahepatic duct dilation, so we're not sure why this came as a surprise at the ERCP? The ERCP showed "beading" of his bile ducts, and the tissue brushings they took showed abnormal cells. They sent him home with a diagnosis of PSC, although nobody has confirmed it. We were told they were sending his file to "experts" and at his follow-up we'd have a definitive diagnosis and a treatment plan.
Cut to this past Thursday (a week after his release). It appears that the GI did NOTHING since his release. They had no new information for us. The histography of the abnormal cells were suggestive of cancer, but we only know this because a nice resident there was honest with us (said this GI doctor was not up for the job of handling my husband's case) and gave us copies of all the files he had access to, where we were able to read that. The GI doc, as well as his PCP's, have told us nothing. I've asked question after question, and they won't answer even the most basic ones. Honestly, at this point I feel like I know more about both PSC and cholangiocarcinoma than either one of them does, and all I've done is spend a few sleepless nights on the internet. The resident gave us a referral to a GI oncologist he says is very good, and after hours on the phone, I was able to get my husband in this Tuesday. We hope we'll know more then.
Anyway, I'm just so overwhelmed and confused. Why is this taking so long? I'm reading about people being diagnosed with PSC after routine check-ups; how could they not diagnose this definitively after 9 days in the hospital? Why is there so little communication with us? If they knew ten days ago that his brushing showed abnormal cells and this cancer is highly aggressive, why didn't they get an oncologist in to look at him sooner (like when he was still an inpatient)?
We are both 34, and we've got a 7 year old, 2 year old, and 8 month old. This is all so completely out of nowhere.