Awaiting diagnosis…why is this taking so long?
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Pamela,
Thanks for the U-M recommendation. We were actually wondering about their liver tumor clinic, but didn’t know anybody who’s ever gone there. I actually had my first child at the U of M hospital and didn’t have a great experience there, but I guess childbirth and bile duct tumors are two different animals.
We’re only about 40 minutes from Ann Arbor–much closer than Rochester!We’ll mention that to the new GP. DH has been seeing people at Karmanos, but we’re not really thrilled with them right now. The surgeon he’s talked to has never seen anybody with both PSC and CC (which surprised us, given the high incidence of CC in PSC patients) and that didn’t really fill us with much confidence.
Dear Twoforjoy,
Welcome to the site. Have you ever considered going to University of Michigan Hospitals Cancer Center. We live in Ohio and drive there for my daughter, Lauren’s care. It is at least a 3 1/2 hr. drive for us. My daughter has had nothing but top notch care by very qualified staff. When we first started going there, I wondered if it was the best place because not many if any people from this site went there. The liver surgeon we saw said that we could go to Mayo or MD Anderson, but he assured us they would do the same thing as we get here. We have had much success and Lauren is now being evaluated for radioembolization. If this works, she will be considered for a resection. This is such a miracle because when she was first diagnosed, the doctors didn’t hold out a lot of hope for surgery due to the large size and placement of her tumor. Things have changed and it is all because of the aggressive and wonderful care by her oncologist and surgeon. You may wonder why we chose this hospital. My oldest daughter, Kristen, is an anesthesia resident there along with her husband, Bruce. They have been in the OR with the liver surgeon and absolutely love him and his expertise with the liver. In my opinion, waiting until May just for an appointment is way too long. You could at least try to get in to Michigan sooner and then if you wanted to go to Mayo, go later and compare what each had to offer. I am in no way trying to persuade you to go to Michigan. I just feel Lauren is getting the best care possible and wanted to let you know about a great hospital close by. I wish you all the best. Please feel free to e-mail me if you have any questions. I would love to help.
-Pam
Thank you, Lainy. I hope so! I have found that, when there’s stuff to actually do, I do better. It’s all this down time of just waiting for tests and appointments that wears me down. I think at this point we both just want to know what we’re facing and what’s coming next.
TFJ, I can promise you one thing, when the true diagnosis is made and a game plan is in place, the anger and the fright will turn to fight. Then everything calms down. It’s more the not knowing about anything that is so disturbing. Hope this happens more quickly for you than later.
I just wanted to say, too, that I appreciate the advice about not dwelling on the past. (Which is not to say that, if things are bad and could have been prevented by a more timely diagnosis, we won’t be considering a lawsuit. There’s been, at this point, at least 4 weeks of delay due to tests that were unordered, test results that were never sent, and/or test results that were just ignored for a week or so.)
But a lot of my anxiety about this situation is coming out as anger. I’m mad at the doctors. I’m mad at my in-laws for not being here to help us out (DH is still quite sick, and I’m worn out from caring for him and the three kids). I’m mad at the universe. I’m just mad about not having answers and mad about the answers we might get.
The good news, we think, is that the surgical oncologist seemed to think nothing had spread outside his common bile duct. We’re not sure how he could have such a large stricture there with so many symptoms without anything having spread, but we’re hoping it’s true. It also gives us some hope that maybe it’s benign, since while a 3cm benign stricture is pretty rare, it would also be pretty rare, from what we’ve read, to have a 3cm malignant stricture that hasn’t spread anywhere. So, whatever he’s got, it’s rare.
I was so tempted to buy a ticket for the $640 million lotto. I figured that all of this happening to my husband is so statistically improbable that maybe anything could happen and weird luck could work *in* our favor, too.
I had contacted Mayo when PSC and cancer were put on the table. DH talked to them on the phone, but I think he framed it as more of a PSC consult.
The thing is that my DH and his family are in complete denial about cancer right now. They will not accept it as a possibility. They sort of think I’m a crazy person, I think, for taking this so seriously and being so aggressive about it. They would be perfectly content to let his PCP handle it. I think DH, after talking to the oncologist, is coming around a little–he alternates between complete despair that it’s cancer and denial, swearing that nothing at all is wrong. But his parents pretty much refuse to entertain the possibility that this is serious, and they’re calling him a few times a day, and making it really hard for me to convince him that we need to act decisively and aggressively about this.
But I am going to talk to him about getting a Mayo referral from his new PCP. He’s bringing all of his files. Hopefully they’ll see that this is a complicated case and we need to get moving.
Dear twoforjoy, you cannot keep thinking about what has happened or may have been, as you need to spend your mental energy now on getting your husband in to Mayo. #1 it is one of the best and #2 it’s time. I am not sure who got him in to Mayo for the 14th of May. Might be worth a call to Mayo and explain what has happened and can they give you some advise on how to get him in quicker. My husband was much the same way. Itching we thought was allergeries. His Bili only got to 5 but he totally yellowed and was in distress. This CC is such a puzzle and sometimes it is extremely hard to diagnose. Can you go to his GI guy and ask him to see if he can help you get your husband in sooner?
Thanks, Kathy. Yes, we’ve just started getting copies of all of his records and keeping them in a binder. We have been getting little to no meaningful communication from his doctors, and most of what we know is from his records.
His total bilirubin was about 16 when he was first in the ER. It was up to about 23 at his second ER visit. It went down to about 15 again after the stent was put in (they did do a stent), but then shot up to 22 a few days later. Last time we saw the numbers, it was 10.3, which was the lowest it’s been since all this started.
I’m still frustrated, knowing what I know now, that they sent him home from the ER that first time with a viral hepatitis diagnosis given his bilirubin levels, that his bloodwork was pretty much a classic obstructive profile, and that he had no known risk factors for Hep A, B, or C. I’ll be honest and say that I think he received substandard care because of where he was seen. We live in Detroit, they deal with a population that engages in many high-risk behaviors, Hep B infections rates are pretty high here, and we think they probably just assumed he had Hep B based on that, and overlooked a number of signs that something else was going on.
He’s actually in the process of getting a new PCP. Before all this started, he hadn’t seen a doctor in 8 years. He was assigned to a clinic at the ER, and we are very, very unhappy with the care he got here. At his first visit with the doctor there, the GP basically thought nothing of the fact that he’d lost 25 pounds in a month, was yellow, and had a bilirubin count over 15. He was just concerned that his cholesterol level was high and sat there discussing the pros and cons of cholesterol meds versus diet chances with my husband for about half an hour. My husband was there alone, and he’s not as direct as I am; I would have asked why the hell he was talking about cutting red meat out of his diet when my husband, at that point, could eat hardly anything at all. And the GI doc is really no better, and the resident who was working with him came right out and told us (off the record) that we should switch to somebody else.
So my husband is meeting with a new PCP, recommended by a colleague within the other big medical system in our city, on Wednesday. He’s going to explain the whole story, try to get a referral to one of two very good liver doctors we’ve had recommended to us in the city, and maybe get a recommendation to Mayo. We’d just like to get a move on things. (I’d also like for them to confirm the PSC diagnosis, finally, because once that happens my husband can do things like get a case manager for our insurance to deal with all of the paperwork we’ve been dealing with and start thinking about things like medical leave or disability.)
I guess I’m just surprised they haven’t done more to figure this out. As far as I can tell–I haven’t seen all the bloodwork yet, so I don’t know–they didn’t run a CA-19-9 until his appointment with the oncologist (I don’t know the results). If they’d been considering cancer as a strong possibility, which it sounds like they had, why hadn’t they done more?
Sounds like you need to vent. I feel so bad for you and your husband having to go through this. The delays just make it harder.
May 14th seems a long time away. Is that the soonest you could get in, or the time you wanted? I had my first appt at Mayo within a week. If you want in sooner, ask your GI doctor (or your GP doctor) if they will make an appt for you.
Was a stent put in the bile duct? Do you know his total Bilirubin count? Ask for copies of lab work etc. It’s good to keep all this in a file.
Kathy
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.
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