atypical cells from my ERCP brushing

[Guest guest]

Hello everyone,

I had my follow-up ERCP today to have my stent taken out and more

dilation. I was told that my last ERCP brushing showed atypical cells,

but I had a negative CA19-9 blood test and he felt that it

didn't " look " like cancer. MY question is how concerned should I be?

Has anyone else had abnormal cells and it be ok? I'm pretty nervous

even though he didn't feel it was anything to worry about.

As far as the ERCP he was able to dilate further up the CBD but

still unable to inject any dye at all in the intrahepatic ducts and he

thinks they are all shot. He is refering me to Los Angeles for a

transplant eval. even though he still feels like it is a couple years

away.

I would appreciate any input on the atypical cells from the brushing.

Thanks

Sands

UC 2002, PSC 11/07

[Guest guest]

Hi

Three years ago I had atypical cells from an ERCP brushing. My ERCP doctor actually went beyond calling the cells atypical and referred to it as “suspected cancer”. It doesn’t sound like your doctor used that term, so that could be good.

At the time I felt well. I didn’t have any of the visible symptoms such as itching, jaundice, fatigue, etc. After getting the ERCP results, I was fast tracked for a transplant operation because of the fear of spreading cholangiocarcinoma. My sister went through all the tests and was prepared to be my live donor. The day before the planned transplant they opened me up to do an exploratory surgery to see if there was cancer, and if so, to see if it had already spread too far to make a transplant viable.

After doing biopsies they found that there was no cancer at all. My primary bile duct leading from my liver was really strictured though, so they took it out along with my gallbladder and brought a piece of my intestine up to substitute for the primary bile duct. It turned out that I didn’t have cancer, and that I didn’t need the transplant operation at that time.

It was certainly scary. Since being diagnosed with PSC 7 years ago I have approached it with an attitude of knowing that one day I will have to have the transplant operation, and I can deal with that – I just don’t want to develop the cholangiocarcinoma that would prevent me from being able to have the transplant.

If you’re feeling reasonably well, then draw confidence from that. Throughout this whole process, we become pretty good judges of how our liver function is doing.

But by all means make sure your doctor knows how concerned you are. If there are additional tests that can be done to rule out cancer, and you want them, then ask for them. The PSC can eventually be handled with a liver transplant. But if cholangiocarcinoma develops and spreads, you may not have the opportunity for the transplant.

The cholangiocarcinoma fear has been the toughest thing for me to deal with in having PSC. You want to live as long as you can with your own liver and postpone the transplant and the immunosuppresant drugs. But at the same time, the longer you go without the transplant, the longer you have the risk of the cholangiocarcinoma.

Just within the past 6 months I have finally developed the visible symptoms of PSC. Fatigue, itching, and now jaundice. I was recently activated on the short list to receive a new liver. In fact, earlier today my wife received a call from my transplant coordinator telling me to have a bag packed and be ready to go to the hospital at any time for the transplant operation. If and when it happens, I’ll let you know how it turns out.

God bless you, and stay strong!

Todd Schluesche

Wisconsin

PSC diagnosed 2000

Hello everyone,

I had my follow-up ERCP today to have my stent taken out and more

dilation. I was told that my last ERCP brushing showed atypical cells,

but I had a negative CA19-9 blood test and he felt that it

didn't " look " like cancer. MY question is how concerned should I be?

Has anyone else had abnormal cells and it be ok? I'm pretty nervous

even though he didn't feel it was anything to worry about.

As far as the ERCP he was able to dilate further up the CBD but

still unable to inject any dye at all in the intrahepatic ducts and he

thinks they are all shot. He is refering me to Los Angeles for a

transplant eval. even though he still feels like it is a couple years

away.

I would appreciate any input on the atypical cells from the brushing.

Thanks

Sands

UC 2002, PSC 11/07

[Guest guest]

-

I think other group members will be sending out emails, likely encouraging evaluation from Mayo. I think I would sleep far better having a second opinion from an expert clinical center.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

Hello everyone,I had my follow-up ERCP today to have my stent taken out and more dilation. I was told that my last ERCP brushing showed atypical cells, but I had a negative CA19-9 blood test and he felt that it didn't "look" like cancer. MY question is how concerned should I be? I would appreciate any input on the atypical cells from the brushing.Thanks SandsUC 2002, PSC 11/07

[Guest guest]

Hi ;

The classification of bile-duct brushings as having "atypical cells" falls into a "cytological grey zone" ... meaning that it can't be said with certainty whether the cells are malignant or not:

Molecular diagnosis of pancreatobiliary malignancies in brush cytologies of biliary strictures.

Gress TM

Gut. 2004 December; 53(12): 1727–1729.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1774308

There are other techniques (some discussed in the above article), and more recent ones described by Gores (below), that seem to be more specific:

Advanced cytologic techniques for the detection of malignant pancreatobiliary strictures.

Moreno Luna LE, Kipp B, Halling KC, Sebo TJ, Kremers WK, LR, Barr Fritcher EG, Levy MJ, Gores GJ

Gastroenterology. 2006 Oct;131(4):1064-72.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed & pubmedid=17030177

So I might recommend going to see Dr. Gores at Mayo Clinic for a second opinion to see whether further tests (such as fluorescence in situ hybridization (FISH)) are needed to rule out malignancy.

Certainly it is a good sign that your CA-19-9 is not elevated.

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

[Guest guest]

,

's cancer markers were 0 but they found CCa cells from this last

brushing. Many dr's looked at the cells and agreed, yes, they were

definitely malignant cells. Since they found it so early, his

prognosis is excellent. It was my understanding that malignant cells

have defining qualities that the pathologist can clearly see.

I do agree, you should have a second opinion; make sure those cells

are examined thoroughly and don't be afraid to ask for the more

experienced opinion. I feel your high anxiety and pray that God will

give you peace of heart and mind.

God Bless,

Franson

wife of (psc 1995, CCa 2007, anxiously waiting for tx and losing

his mind............)

[Guest guest]

> The cholangiocarcinoma fear has been the toughest thing for me to

deal with

> in having PSC. You want to live as long as you can with your own

liver and

> postpone the transplant and the immunosuppresant drugs. But at

the same

> time, the longer you go without the transplant, the longer you

have the risk

> of the cholangiocarcinoma.

That mirrors my pre-transplant sentiments exactly. Unfortunately,

there is no way to know whether ESLD or CCa will come first. In my

case, it was CCa, and I doubt whether I would have accepted a

transplant last year had it been offered to me prior to the cancer

diagnosis since I still felt so good. The risks of transplant

seemed more " real " to me when CCa was still only speculative. When

it became a reality, however, any potential complications from

transplant surgery seemed trifling in comparison.

Most PSCers don't get the opportunity to have a transplant before

they become very ill. If there ever comes a time when donor organs

are plentiful instead of scarce, then maybe people will actually

have a chance to decide whether to get transplanted rather than face

the risk of cancer. Today, though, it's still pretty much an

academic question. We worry about the risk, but we can't really do

anything about it other than to be tested frequently. For myself,

I'm glad that the decision was made for me (and while transplant was

still an option). Women at high risk for breast cancer who elect to

get double mastectomies amaze me.

Gene

[Guest guest]

Hmmm. Can a CA19-9 actually be negative or 0? Mine is usually in the 30's. It's higher than I want it to be, that's for sure.

Marie

To: From: jennielou33@...Date: Fri, 15 Feb 2008 01:29:47 +0000Subject: atypical cells from my ERCP brushing

Hello everyone,I had my follow-up ERCP today to have my stent taken out and more dilation. I was told that my last ERCP brushing showed atypical cells, but I had a negative CA19-9 blood test and he felt that it didn't "look" like cancer. MY question is how concerned should I be? Has anyone else had abnormal cells and it be ok? I'm pretty nervous even though he didn't feel it was anything to worry about.As far as the ERCP he was able to dilate further up the CBD but still unable to inject any dye at all in the intrahepatic ducts and he thinks they are all shot. He is refering me to Los Angeles for a transplant eval. even though he still feels like it is a couple years away.I would appreciate any input on the atypical cells from the brushing.Thanks SandsUC 2002, PSC 11/07 Need to know the score, the latest news, or you need your Hotmail®-get your "fix". Check it out.

[Guest guest]

Thanks for the responses. All I know is that he said my Brushings from my ERCP from one month ago showed "atypical cells" he feels that they are just from inflammation and he said that my ca19-9 was negative, he did not give me a number. I have a call into him for more information, including a number and also to see if I can have further testing on the brushings. The only thing that is making feel al little better is that he is sending me to a Hepatologist for a transplant eval. I just hope I can get in soon. I don't want to sit on this for long. If the cells are pre-cancerous do they show up as more than atypical? And how long to pre-cancerous cells go before it becomes cancer? I for some reason can't shake this feeling that something is wrong. Thanks for the support I really need it right now. Sands UC 2002, PSC 11/07Marie Nilsson

wrote: Hmmm. Can a CA19-9 actually be negative or 0? Mine is usually in the 30's. It's higher than I want it to be, that's for sure. Marie To: From: jennielou33 (AT) yahoo (DOT) comDate: Fri, 15 Feb 2008 01:29:47 +0000Subject: atypical cells from my ERCP brushing Hello everyone,I had my follow-up ERCP today to have my stent taken out and more dilation. I was told that my last ERCP brushing showed atypical cells, but I had a negative CA19-9 blood test and he felt that it didn't "look" like cancer. MY question is how concerned should I be? Has anyone else had abnormal cells and it be ok? I'm pretty nervous even though he didn't feel it was anything to worry about.As far as the ERCP he was able to dilate further up the CBD but still unable to inject any dye at all in the intrahepatic ducts and he thinks they are all shot. He is refering me to Los Angeles for a transplant eval. even though he still feels like it is a couple years away.I would appreciate any input on the atypical cells from the brushing.Thanks SandsUC 2002, PSC 11/07 Need to know the score, the latest news, or you need your Hotmail®-get your "fix". Check it out.

[Guest guest]

> And how long to pre-cancerous cells go before it becomes cancer? I

for some reason can't shake this feeling that something is wrong.

>

> ~

Last September (after 3 ERCP)my brushings showed atypical cells

and " rare " atypical cells and I know exactly how you feel. I was

very scared and kept asking my doctors (GI to Hep to Endoscopist who

performed the ERCP)what it meant. From what I understand, it does

not mean pre-cancerous. If it was, they'd call it dysplasia. The

docs said it was just showing inflammation. I also asked this group

about it and got a couple of responses and it put my mind at ease (a

bit); however, I am going to request more regular MRCP, MRI, and

possibly ERCP (annually) if they let me. Not that I want an ERCP,

but I'm still a bit nervous about CCA developing and feel this is the

best way to find it. I hope yours is also just inflammation. This is

a very scary disease to deal with. Good luck with your evaluation.

I just got listed in December.

Liz (CT)

>

>

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> Need to know the score, the latest news, or you need your

Hotmail®-get your " fix " . Check it out.

>

[Guest guest]

I had cancers looking strictures over 3 years ago, with high ca-19 and

other cancer lab high as well and the Doctor told me it was cancer. The

biopsy came back normal (no cancer) and over a period of months the ca-

19 and other lab got went to normal. I think the reason things got

better is I had a different Doctor do and ercp and he finally opened

things up slightly on one side. Before that I had 4 other doctors do

over a dozen ercp on me with no opening.

Also, I would recommend that anyone having an ercp ask for iv-zofran to

cut down on the weeks of pucking and nausia afterward.

Mike in Houston

[Guest guest]

If the cells are pre-cancerous do they show up as more than atypical?Yes, I think. It was my understanding that pre-cancerous cells are actual cancer cells- they just haven't conglomerated into a tumor, yet. Fransonwife of (psc 1995, CCa 2207)