Pamela wrote:

Oh my goodness, Lori. Thank you for listening to what I had to say about U of M. I am so happy that you decided to go with them. They are such a top notch facility. We are so happy with Lauren's treatment there. Good luck tomorrow and let us know the plan of attack. All the best to you and your family.

-Pam

Pam, my husband got his new patient packet tonight, and his appointment tomorrow is actually with Dr. Sonnenday.  Given the wonderful things you've had to say about him, we're feeling very positive.  We're finding everybody in the U of M system so far to be so communicative and helpful, which is such a change from, basically, two months of doctors not telling us anything.

Lori

Pam,

I just wanted to thank you again for encouraging me to contact U of M.  My husband has an appointment with them tomorrow, and we are so far thrilled with how seriously they are taking things and how willing they are to work with us.  We just had such discouraging, frustrating encounters with the other doctors he'd seen.  But since we've got the ball rolling on getting him into the U of M clinic, I really feel like a weight has been lifted, and I can relax because he'll be working with people who have seen symptoms like his before, will know how to diagnose him, and will hopefully be able to successfully treat him, whatever it ends up being.

Lori

Derin, thanks for your message.  We've both been wondering why they aren't being more aggressive about going in surgically, because from what they've told him, surgery is going to be required whether the stricture is benign or malignant.

Again, we're hoping the U of M people will know more about what's going on and have an action plan.  Because it looks like nothing has spread so far, we are VERY anxious to have them remove the stricture as soon as possible.  From everything I've read, it makes a huge amount of difference, with this cancer, if they remove before the cancer has spread.

Thanks for all of the support and replies.

We haven't really gotten anywhere yet.  The new PCP my husband saw was unable to refer him to the UM center because he's contractually obligated to only provide in-system referrals.  Even though, as he admitted, there's nobody in-system who he felt comfortable referring my husband to.  But, we were able to get an insurance override to change PCPs faster than normal (there's usually a 30-day waiting period) and got my husband an appointment to see a UM PCP next Thursday.  In the meantime the UM liver tumor clinic is receiving all of his information, so hopefully they'll be able to get him in quickly.

I feel very positive that they don't just want copies of his paper records, but have requested the actual images from all of his scans and the tissue samples from the ERCP.  I'm hoping that, since they've seen this before, they might be able to diagnose based on what's already been done.  But we do feel like the U of M clinic is the best way for us to go right now, and I'm feeling relieved that they're going to be taking over his diagnosis and care.

Thanks again, Pamela.  I actually just got off the phone with their liver tumor clinic.  They were so helpful.

I explained our situation, and that the surgeon DH was working with had never worked with anybody with both CC and PSC, and asked if any of their surgeons had.  She said that all of their surgeons had dealt with CC in the context of PSC.  So that really makes me feel a lot better.  We're going to start getting stuff faxed and sent over there tomorrow.

6

(1 replies, posted in General Discussion)

Figure I'll just dive right in with the questions.

As I said in my introduction, my DH right now is facing a possible diagnosis of PSC, CC, or both.  He had an MRCP and ERCP a few weeks ago that found a 3 cm stricture in his common bile duct (which was stented, although the stent doesn't seem to be working all that well) and evidence of PSC.  The brushings from the ERCP were "suggestive of cancer," whatever that means.

But, as of now, he has neither a PSC or CC diagnosis.  His discharge sheet from his inpatient stay lists PSC as his diagnosis, but it hasn't been confirmed since then.  (The medical people we're dealing with are just not very communicative, even when I ask tons of questions.)

He met with a surgical oncologist last week, and he had said that he'd never worked with a patient with both PSC and CC.  That surprised us.  I'd assumed that, given the high prevalence of CC among PSC patients, and the low incidence of CC overall, anybody working with CC patients would have seen people with both conditions?  But, I guess not.

Anyway, my question is how important it is for DH to work with somebody who has experience with both conditions.  He sort of feels like, since this guy has seen CC before, he's fine.  I feel like he should be working with people who have experience dealing with CC in the context of PSC. 

What I'm asking, I guess, is how much the PSC would matter if he's dealing with CC.  Does it make a significant difference in treatment?

Thanks.  I hope I'm not asking too many questions.  It is just so hard to find information about this, and most of what I'm finding is not particularly encouraging.

Liz2011 wrote:

Just wanted to say hello as we have potentially similar situations...

I'm 35 and my husband was diagnosed with CC in the common hepatic duct but unfortunately with 2 mets to the liver (which have shrunk enough to render them invisible...sitting in MD office now awaiting recs on further pursuing resection). Anyway, we have just 2 kids but ages 7 and 3, similar to yours.

I can't say it gets "easier", but you do get stronger! And more educated which makes the fight easier.

Hoping for a good outcome for you guys!!!!

Thank you!

I'm already feeling completely worn out.  DH is just feeling crappy much of the time.  He has no energy.  So I feel like I've now got all of the childcare responsibilities on me, all of the household responsibilities, plus I'm taking are of DH and doing most of the phone calls/research for his medical care.  It's like I suddenly have three full-time jobs. wink 

Thankfully the babies are too little to really get anything that's going on, but I worry about my oldest.  He is very smart and very sensitive.  We're not telling him much at this point, but he knows that his dad is sick and I'm sure he sees we're worried.  I just feel so badly for them.  I mean, as unfair as it seems to me for DH to be going through all this, it seems so much more unfair that our kids have to to through it.  It's just a lot to deal with for such little people.

We're fortunate that DH's work is being awesome--they are fine with him working from home as he's able--and, even though we have no family nearby, we live in a great community with wonderful friends.  When we went to the appointment where they were supposed to be able to tell us if it was cancer, we had three families hanging out at our house watching our kids and waiting so they'd be there when we got back. So I can't really complain.  But I am kind of missing the days when I could lay down for an afternoon nap!

jathy1125 wrote:

TFJ-Welcome and sorry you had to find us. I am a CC survivor. I will be cancer free 3 years in May 2012. I am not sure why you are waiting for doctor referals, you can contact some of the best doctors and hospitals on your own, is it an insurance issue?

It's pretty much an insurance issue.  Our insurance will only cover things that we get a PCP referral for.  And, right now DH has an awful PCP, which is making things difficult.  He is meeting with a new PCP on Wednesday, and he'll be talking about getting referrals then.  He's more comfortable asking for a referral to UM than to Mayo, so hopefully he'll do that.

If we had a cancer diagnosis, cost wouldn't be a factor.  We'll get him the best treatment we can.  Our concern is just going tens of thousands of dollars (or more) into debt trying to get the diagnosis, especially if we are going to be going out-of-network for treatment.

There's also, like I said, the denial factor.  I keep telling DH we can just call these places, explain what's going on, and they'll probably want to see him, and see him soon.  He seems to think (hope?) that they'll say we're crazy and overreacting and refuse to see him unless he has a diagnosis.  I don't think he is really accepting how serious this is and how seriously it will be taken.

I do think we need to look elsewhere for a diagnosis, and I really appreciate the input here.  Like I said, I don't get, at this point, why they are doing an EUS.  They already took brushings.  They already looked at the cells and found them suggestive of cancer.  It's my understanding that it would be relatively unlikely, given that and the size of the stricture, for the stricture to be benign.  So I don't get why they're waiting two weeks to do an EUS and take more brushings.  From what I've read, the brushings tend not to be definitive anyway (and it doesn't sound like they are planning to send them out to any of the labs where they are able to make a more definitive finding).  So they do the brushings, find more abnormal cells, then what?

Rather than sitting around for another 8 days waiting for the EUS and then waiting for the results, I feel good knowing that I'm not crazy for thinking we should try to get DH in somewhere else where they might be able to diagnose this more quickly.

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. wink  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.

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.

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. wink

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.

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?

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.