Hi, everyone. I've been reading here for a bit since CC started being a possibility for my husband.
Short version: About a year ago, my husband started having occasional stomach discomfort after eating, which he had never had before. We chalked it up to stress (I was pregnant with our very unexpected third child and work was crazy for him) and poor diet. He was having dark urine, but he never drinks enough. He was fatigued, but I figured it was stress and maybe some laziness. I suggested seeing a doctor a few times, but he didn't want to, and it didn't seem serious enough to push.
Then, about two months ago, after we were both just getting over a horrible stomach virus, my husband noticed that the whites of his eyes were yellow. He checked it out online, realized that he'd also been really itchy for a few weeks and had had light-colored stools for a while (both of which he hadn't connected with anything) and had lost about 15 pounds in a few weeks, and finally realized he had to be seen. He went to urgent care the next day, and was sent home after about four hours with a diagnosis of hepatitis.
Due to a bunch of lost blood tests and misordered labs, it took about three weeks for it to become clear that it wasn't hepatitis, either viral or autoimmune. During this time, he lost about 20 more pounds and became much sicker. I finally took him to the ER again, and he spent 9 days in the hospital. He had a U/S, a CT, a MRCP, and an ERCP. They discovered a 3 cm stricture in his common bile duct, as well as some intrahepatic duct dilation, and gave him a preliminary diagnosis of primary sclerosing cholangitis.
They took some brushings at the ERCP. We knew when my husband left the hospital that the brushings showed abnormal cells. We were told that they'd have experts looking at his results and, when we went to the GI follow-up 10 days later, we'd have a definitive diagnosis and a treatment plan.
At the appointment 10 days later, we had nothing. All the GI doctor could tell us was that the brushings looked like they could be cancer. A very candid resident there told us the brushings were suspicious of cancer and we needed to take it seriously.
We got my husband in to see a GI oncologist last Tuesday. They also couldn't tell us anything. My husband has an EUS set up for April 10th, where they'll try to take more targeted brushings.
So we don't even have a definitive diagnosis of the PSC yet, and I have no idea when they'll be able to determine whether or not it's cancer. I don't understand why this is taking so long. It's so frustrating. I haven't slept well in weeks. My husband is edgy and depressed.
We're both 34 and have three kids, who are 7, 2, and 8 months. The stress of this is affecting everybody. And I'm not sure why they think they'll be able to do a better job of diagnosis with these new brushings. Why not just go in there surgically, since they're going to have to anyway (if it's a benign stricture, they still need to do a surgical repair because of the size)? Plus, they seem pretty darn sure it's cancer. They don't know what else would cause a stricture that size. So I don't know why everything seems to be moving so slowly. My husband is afraid it's because they've already written him off.
We did, when we first became frustrated with his care, make an appointment at Mayo, for May 14th. So if we're still not getting answers by then, or if it's cancer, we're taking him there. I just don't know how we'll keep it together until then.
Thanks for letting me vent.