Discussion Board Forums General Discussion Primary Sclerosing Cholangitis – CC Screening?

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  • #43363
    lainy
    Participant

    Hi Z~I guess you are quite the Celeb at Mayo! The PET Clinic is in Phoenix. It’s called PET Scan LLC Phoenix. Perhaps other cities have the same kind of clinic. Google-PET Scans and your city name.

    #43362
    zedition
    Participant

    I’ll head down the route of seeing if I can get more blood screens, just to watch for spikes in LF as well as more follow up with Mayo. I’m already on Mayo’s screen, having been one of Dr. Lindor’s patients when he was just starting to make a name for himself twenty years back. I believe he is only doing teaching/research now, no longer seeing patients. But he was responsible for making Mayo-Rochester the premier PSC institution. I’ve been a patient in a few of their studies including the DR3 link with CC and the current gene-search.

    Any idea who was providing PET’s for $1,600? That’s about 80% less than my local clinic charges my PPO. With my deductible at $2,500 per year, and $300 month in out of pocket meds and co-pays on top of $750 per month in premiums, it’s getting a little tight to have money left over to feed the kids. Saving a few bucks would be useful.

    #43361
    marions
    Moderator

    Zedetion……I would start with the badgering in order to have a consult with the Mayo Clinic. I am a strong believer in second (or, more) opinions.
    Best wishes,
    Marion

    #43360
    lainy
    Participant

    Z~ as I mentioned above I would ask for LAB work every other month. Then I thought of something else as well. At one point the Insurance Company was going to turn down a PET Scan for Teddy. I researched and found a company willing to do it for $1,600.00. Might be worth your peace of mind. No need for a dotor refferal either. Perhaps if you are near a larger city you could find something like that.

    #43359
    zedition
    Participant

    When I asked he said, “They are not good tests”, and was going to have his nurse get me more info. As usual, I didn’t see the follow up info. Small hospitals, gotta love em. I suspect Schulick’s article would be the main reason as it’s publication coincides with when my Hep started getting cagey about the CA19-9 tests. I understand Schulick’s is a metastudy that verified the low reliability of CA19-9 at predicting CC, while it is effective at verifying ongoing CC. With my complications from diabetes and NALF in particular, dramatically increases the production of alpha-fetoprotein as the liver & pancreas attempt to regenerate/repair. CEA also is a poor marker for pre-metastized CC, but is effective for validation. So the short statement, blood markers are not effective at finding early CC after the liver is as damaged as mine is. Of course, my MELD is only 11. No, no, never mind daily pain, severe fatigue, mild hepatic encephalopathy and intermittent asterixes, astices and cholangitis, I’m not sick enough yet… I do wish UNOS would modify their rules for PSC/PBC. Or else, I’m just eating a bottle of Tylenol and dialing 911, that’ll get a liver for me. [sarcasm]

    He also disagreed on more than annual CT/PET scans. Getting my insurance company to sign on for more than one per year would be a fight, and I’d need him on my side. Plus, that’s a lot of milirads – when you are worried about cancer, where is the line between utility and risk?

    A second opinion on the CT/PET is problematic. There is one hepatologist in a 100 mile circle, which makes sense since we have no active liver transplant center. My GI is in the same clinic as my hep, and defers all liver questions to the liver expert. My internist is horrible, I only see her b/c my insurance company requires an internist or general MD as primary caregiver. I am within an overnight drive of Mayo Rochester, which is a fine CC and PSC institution. I can certainly badger my hepatologist into referring me there for a second opinion, but I’m not sure of the benefit. I’d like more frequently screening, but I don’t know if any screening is effective.

    #43358
    rick-kamp
    Member

    zed,

    As both a PSC and a CCA patient, I would say that no screening is too much. The risks are very high. At the very least, you should have the bi-annual bloodwork done as well as periodic MRCP’s and anything else you can think of. If the bloodwork isn’t accurate, is it possible that it will be accurate if cancer were present? It’s a hard decision to make, but I would say the more effort you put into screening the better. If I had proper screening I may have been able to qualify for curative treatment, so this is something I feel very strongly about.

    Good luck to you.

    Rick

    #43357
    gene
    Member

    Zed, I had PSC with all of the same risk factors for CC that you have. For ten years prior to my CC diagnosis, I just had annual LFTs done. When they spiked suddenly in 2007, I was given an ERCP and the brushings revealed the presence of CC. I would think you should be able to convince your doctors to order bloodwork to be done more frequently than once a year to at least measure liver functionality if not directly for CC. If your LFTs were to spike like mine did, they could perform more specific tests to determine why and presumably be able to catch any CC activity early on. Best wishes.

    #43356
    tiapatty
    Member

    Welcome aboard, you are among friends here.

    What is the reason the doctor is giving you for not wanting to continue the tests? I think a second opinion is in order, not sure how easy that is to get with your health care system.

    Patty

    #43355
    lainy
    Participant

    Hello Zedition and welcome to our wonderful family. Not sure we have had this question before but I will take a stab at an answer. If nothing has shown up on your tests for screening for CC, I doubt the Doctor feels he can do much more than he is doing. On the other hand you can always go for a second opinion and 3rd if required. I am wondering if he would just let you do LABS every other month or so. Am also, wondering if the Insurance Company would pay for all the screening due to the fact you have not been diagnosed with CC. Very interesting. Wishing you the best and please let us know what happens.

    #4218
    zedition
    Participant

    My hepatologist recently said we would not do any more blood screening for CC. Does anybody know the best-practices around this these days?

    My CC risk factors are very high. I’ve had PSC without transplant and without remission for 20 years. I had ulcerative colitis, with a colonectomy in 2001. I’m also caucasian of Irish descent, HLA DR3. These factors all correlate with high CC risk. The only way I can conceive of increasing my risk for CC is if I added alcoholism, liver flukes and a diet rich in thallium.

    We had been testing for CC with biannual fetoprotein and CA19-9. Although I am not obese (BMI=22), I developed NALF and Cushing Syndrome / Type II diabetes about three years ago. The conditions likely evolved due either to chronic liver disease, or 20 years of on and off prendisone. These conditions caused both fetoprotein and CA19-9 to no longer give normal results. We’ve moved to once a year CT & PET scans on a 64 slice MRI. The doc doesn’t want to screen more often than that.

    I’m concerned because my hospital is a small regional that has little experience with liver transplant and CC. Is there anything I can ask my physician about/for that will increase my odds of early detection if CC develops in a case complicated by PSC, NALF & diabetes?

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