Looking for cancer in a strictured CBD

[Guest guest]

Hello All,

I posted some weeks ago regarding my CBD being so strictured and narrow

that multiple attempts at ERCP have not been able to get through it. I

think bile is still flowing (based upon the color of things) and I'm not

turning yellow. Blood work has not shown an increase in bilirubin.

Earlier this month I had an Endoscopic US, where the doctor biopsied the

area around the stricture from the outside. That yielded a normal

outcome (No cancer thank God). the Gastroenterologist says the

stricture starts about 1cm in past the Ampulla (spelling? opening into

the small bowel) and runs for about 6cm. The doctors aren't sure if its

a dominant stricture caused by the PSC or if it's a cancer ... so they

keep looking for cancer.

Now they want to do a " NEW " procedure using what they called a

" SPYGLASS " scope. With this they say they can visualize the CBD, biopsy

it from the inside and hopefully (If it's not cancer) open it up (dilate

and stent). I'm supposed to be the first to get this done in the

Louisville area.

Has anyone else had this procedure done?

If they find cancer, I'm told it will eliminate me from ever being on

the LTx list. Is that everyone elses experience?

Are there any PSCers in this group living with cancer?

What's the life expectancey for having cancer in that area?

- 45

PSC, Crohns 2000 (one bout of jaundice, no other symptoms)

[Guest guest]

Hello ,

I hope I'm not the only one to respond, but I'll give you the general info I

have on this topic of cholangiocarcinoma (CCA). If the CCA is caught early

enough, and you're otherwise a candidate for a transplant, then you MAY

receive chemo & radiation for the cancer, and then a liver transplant. This

is still experimental, and being done at the Mayo clinic. Do a google search

of Mayo Clinic cholangiocarcinoma to find out more. I have Kaiser insurance,

and Kaiser apparently contracts with the Mayo Clinic to do this; your

insurance may do the same. We do have a PSC member who is going through this

but not at Mayo, at the Univ. of Utah. His family has a blog about his

experience, which is located here:

http://bbfranson.blogspot.com/

Thus, this treatment may not be so experimental anymore - your hospital may

follow the Mayo Clinic model, just as the Univ. of Utah hospital does.

As you may know, the problem with CCA is in finding the it early. The good

thing is that your doctors seem to be using every avenue available to locate

the CCA, if you have it. The test that your doctor's are proposing sounds

like something worth doing. The prospects for CCA are not good, but with the

Mayo clinic experiment, the prospects may start looking a little better.

probably has something about CCA on the PSC Literature web

site. Otherwise, you can do a google search of cholangiocarcinoma, and look

for a harvard.edu, columbia.edu or nih.gov (National Institutes of Health)

type of site to read more about it.

CCA is serious stuff, but the outlook is a tiny bit better now than it was a

year ago, and hopefully at some point there will be tests to detect it

early. In the mean time, it sounds as though you are at least in good hands.

-Marie

_________________________________________________________________

Now you can see trouble before he arrives

http://newlivehotmail.com/?ocid=TXT_TAGHM_migration_HM_viral_protection_0507

[Guest guest]

Hi ;

The only material I have read about the new " SpyGlass " procedure is

these two abstracts published this year from a group in Denver, CO:

________________

Gastrointest Endosc. 2007 May;65(6):832-41.

SpyGlass single-operator peroral cholangiopancreatoscopy system for

the diagnosis and therapy of bile-duct disorders: a clinical

feasibility study (with video).

Chen YK, Pleskow DK

Division of Gastroenterology and Hepatology, University of Colorado

Health Sciences Center, Denver, Colorado, USA.

BACKGROUND: Clinical implementation of cholangioscopy for direct

visual examination of bile ducts, tissue sampling, and therapeutic

maneuvers has been slowed by limitations in available technology.

With 4-way deflected steering and dedicated irrigation channels, the

single-operator SpyGlass peroral cholangiopancreatoscopy system is

designed to overcome some of these limitations. OBJECTIVE: To

evaluate the clinical utility and safety of the SpyGlass system for

diagnostic and therapeutic endoscopic procedures in bile ducts.

DESIGN: Prospective observational clinical feasibility study.

SETTING: Two tertiary referral centers. MAIN OUTCOME MEASUREMENTS:

Procedural success rate defined as the proportion of SpyGlass

procedures in which the diagnostic or therapeutic objectives of the

procedure were achieved. RESULTS: SpyGlass procedures were performed

in 35 patients: 22 with indeterminate strictures (63%), 5 with

indeterminate filling defects (14%), 5 with stones (14%), 2 with

cystic lesions (6%), and 1 patient with an indication for gallbladder

stent placement (3%). The rate of procedural success was 91% (95%

confidence interval 77%-98%). Twenty patients underwent SpyGlass-

directed biopsy, and the specimens procured from 19 patients (95%)

were found adequate for histologic evaluation. The preliminary

sensitivity and specificity of SpyGlass-directed biopsy to diagnose

malignancy were 71% and 100%, respectively. SpyGlass-directed

electrohydraulic lithotripsy succeeded in 5 of 5 patients (100%).

Procedure-related complications occurred in 2 patients (6%) and

resolved uneventfully. LIMITATIONS: No control group was included.

Follow-up for determining preliminary sensitivity and specificity was

limited. CONCLUSIONS: SpyGlass procedures proved to be clinically

feasible, provided adequate samples for histologic diagnosis, and

successfully guided stone therapy. The procedures were safe and well

tolerated. Prospective multicenter clinical trials of the system are

underway. PMID: 17466202.

__________________

Gastrointest Endosc. 2007 Feb;65(2):303-11.

Preclinical characterization of the Spyglass peroral

cholangiopancreatoscopy system for direct access, visualization, and

biopsy.

Chen YK.

Division of Gastroenterology and Hepatology, University of Colorado

Health Sciences Center, Denver, Colorado, USA.

BACKGROUND: Current cholangioscopes are restricted to 2 deflection

angles and require more than 1 operator. The newly developed Spyglass

peroral cholangiopancreatoscopy system provides 4-way deflected

steering by a single operator. OBJECTIVE: To evaluate access and

biopsy in all simulated biliary-duct quadrants with the Spyglass

system, high-level disinfection of the reusable Spyglass optical

probe, and feasibility of in vivo biopsy. DESIGN: Laboratory

simulations comparing biliary-duct access and biopsy with the

Spyglass versus a conventional system, laboratory determination of

high-level disinfection effectiveness, and observational

investigation of biopsies in a porcine model. SETTING: Research

laboratories. MAIN OUTCOME MEASUREMENTS: Rate ratios (RR) and 95%

confidence intervals (CI) for successful access to all quadrants and

simulated biopsy. RESULTS: Success rates for access in all quadrants

were significantly higher with the Spyglass system than with the

control system, both without (RR 1.71, 95% CI 1.39-2.29) and with (RR

2.00, 95% CI 1.56-2.78) biopsy forceps loaded. Higher success rates

were also attained by using the Spyglass system to access biopsy

targets (RR 2.09, 95% CI 1.60-2.91) and to perform simulated biopsies

(RR 2.94, 95% CI 2.05-4.52). Microbial species log reductions of 6.0

to 7.0 were achieved by high-level disinfection of Spyglass optical

probes. In 31 in vivo porcine biopsies yielding adequate gross

specimens, the quality for histologic examination was excellent to

adequate for 90% of specimens. LIMITATIONS: Study procedures were

performed by a single nonblinded operator. All data were collected ex

vivo or in animals, and clinical applicability remains to be

determined. CONCLUSIONS: The Spyglass system allows access and biopsy

in all quadrants and merits clinical investigation. PMID: 17258991.

__________________

As you have already noted, it's pretty new, and so not much is known

about its utility in diagnosing cholangiocarcinoma (CCA).

If CCA is detected, then your best bet would be to go to Mayo Clinic

(as already mentioned by Martha) where they have a lot of experience

in treating early stage CCA:

__________________

Aliment Pharmacol Ther. 2006 May 1;23(9):1287-96.

Review article: the modern diagnosis and therapy of

cholangiocarcinoma.

Malhi H, Gores GJ

Mayo Clinic College of Medicine, Rochester, MN 55905, USA.

Cholangiocarcinomas are epithelial neoplasms that originate from

cholangiocytes and can occur at any level of the biliary tree. They

are broadly classified into intrahepatic tumours, (extrahepatic)

hilar tumours and (extrahepatic) distal bile duct tumours. In spite

of well-understood predispositions, most cholangiocarcinomas arise in

the absence of risk factors. In suspected cases, the diagnosis can be

established with non-invasive imaging studies. Biliary invasion

should be reserved for patients with obstruction. In high-risk

patients, advanced cytological tests of aneuploidy (digital image

analysis and fluorescent in situ hybridization) aid early diagnosis.

In the absence of primary sclerosing cholangitis, curative surgical

resection has 5-year survival rates of 2-43%, higher survival

observed in patients with clear surgical margins and concomitant

hepatic resection for hilar tumours. Patients with unresectable

cholangiocarcinoma or pre-existing primary sclerosing cholangitis

should be considered for liver transplantation with neoadjuvant

chemoirradiation, in specialized centres. PMID: 16629933.

__________________

A group that has had a lot of experience in the treatment of

carcinoma of the ampulla of Vater (including carcinomas

with " unfavorable features " ), is a group at Stanford:

__________________

Arch Surg. 2001 Jan;136(1):65-9.

Adjuvant chemoradiotherapy for " unfavorable " carcinoma of the ampulla

of Vater: preliminary report.

Mehta VK, Fisher GA, Ford JM, Poen JC, Vierra MA, Oberhelman HA,

Bastidas AJ

Department of Radiation Oncology, Stanford University Medical Center,

300 Pasteur Dr, Stanford, CA 94305, USA.

HYPOTHESES: Adjuvant chemoradiotherapy decreases the risk of local

recurrence in patients with adenocarcinoma of the ampulla of Vater

and high-risk features. Adjuvant chemoradiotherapy for this

population can be administered safely and without much morbidity.

DESIGN: Controlled, prospective, single-arm study. SETTING: Tertiary

care referral hospital. PATIENTS: From June 1995 to March 1999, 12

patients (7 men and 5 women; median age, 66 years; age range, 38-78

years) with " unfavorable " ampullary carcinoma were treated with

adjuvant chemoradiotherapy. All patients underwent

pancreaticoduodenectomy, and all pathologic findings were confirmed

at Stanford University Medical Center, Stanford, Calif. Unfavorable

features were defined as involved lymph nodes (n = 10), involved

surgical margins (n = 1), poorly differentiated histological features

(n = 3), tumor size greater than 2 cm (n = 6), or the presence of

neurovascular invasion (n = 4). INTERVENTIONS: Four to 6 weeks after

undergoing pylorus-preserving pancreaticoduodenectomy with regional

lymphadenectomy, patients began adjuvant chemoradiotherapy consisting

of concurrent radiotherapy (45 Gy) and fluorouracil by protracted

venous infusion (225-250 mg/m(2) per day, 7 days per week) for 5

weeks. MAIN OUTCOME MEASURES: Local recurrence, distant recurrence,

overall survival rate, and treatment-related toxic effects. RESULTS:

All patients completed the prescribed treatment course. Toxic effects

were assessed twice a week during treatment and graded according to

the National Cancer Institute Common Toxicity Criteria Scale. One

patient required a treatment interruption of 1 week for grade III

nausea/vomiting. No grade IV or V toxic effects were observed. At

median follow-up of 24 months (range, 13-50 months), 8 of 12 patients

were alive and disease free. One patient was alive but had disease

recurrence. Three patients died of this disease (liver metastases).

Actuarial overall survival at 2 years was 89%, and median survival

was 34 months. One surviving patient developed a local recurrence and

a lung lesion. Actuarial overall survival and median survival were

better than in a parallel cohort with resected high-risk pancreatic

cancer (n = 26) treated with the same adjuvant chemoradiotherapy

regimen (median survival, 34 vs 14 months; P<.004). CONCLUSIONS:

Adjuvant chemoradiotherapy for carcinoma of the ampulla of Vater is

well tolerated and might improve control of this disease in patients

with unfavorable features. PMID: 11146780.

_________________

For further details on ampullary carcinoma, please see

http://www.emedicine.com/med/topic123.htm

I am very sorry to be passing on such dismal reading material, but I

hope that this helps answer your questions, and points you to

specialized centers where you might seek treatment if cancer is found.

Of course, I'll be hoping and praying that it is a stricture and not

cancer!

Best regards,

Dave

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

[Guest guest]

and Marie,

Thank you for responding. They will perform the procedure in the next

couple of hours. If I'm coherent, I'll post.

Thanks again and please pray for no cancer.

- 45

PSC, Crohns 2000 (1 bout of jaundice, no other symptoms)

>

>

>

> Hello ,

>

> I hope I'm not the only one to respond, but I'll give you the general

info I

> have on this topic of cholangiocarcinoma (CCA). If the CCA is caught

early

> enough, and you're otherwise a candidate for a transplant, then you

MAY

> receive chemo & radiation for the cancer, and then a liver transplant.

This

> is still experimental, and being done at the Mayo clinic. Do a google

search

> of Mayo Clinic cholangiocarcinoma to find out more. I have Kaiser

insurance,

> and Kaiser apparently contracts with the Mayo Clinic to do this; your

> insurance may do the same. We do have a PSC member who is going

through this

> but not at Mayo, at the Univ. of Utah. His family has a blog about his

> experience, which is located here:

>

> http://bbfranson.blogspot.com/

>

> Thus, this treatment may not be so experimental anymore - your

hospital may

> follow the Mayo Clinic model, just as the Univ. of Utah hospital does.

>

> As you may know, the problem with CCA is in finding the it early. The

good

> thing is that your doctors seem to be using every avenue available to

locate

> the CCA, if you have it. The test that your doctor's are proposing

sounds

> like something worth doing. The prospects for CCA are not good, but

with the

> Mayo clinic experiment, the prospects may start looking a little

better.

>

> probably has something about CCA on the PSC Literature

web

> site. Otherwise, you can do a google search of cholangiocarcinoma, and

look

> for a harvard.edu, columbia.edu or nih.gov (National Institutes of

Health)

> type of site to read more about it.

>

> CCA is serious stuff, but the outlook is a tiny bit better now than it

was a

> year ago, and hopefully at some point there will be tests to detect it

> early. In the mean time, it sounds as though you are at least in good

hands.

>

> -Marie

>

> _________________________________________________________________

> Now you can see trouble before he arrives

>

http://newlivehotmail.com/?ocid=TXT_TAGHM_migration_HM_viral_protection_\

0507

>

[Guest guest]

Hello ,

I have Cholangiocarcinoma and am on the transplant list for the south

west US. I have just finished 25 days of external radiation with

three days of chemo.

The study at the University of Utah is headed by Dr. Schwarts.

(801)585-27089 (leave him a message and tell him Franson

referred you). I asked him about sharing the information with the

group. He said that he would personally speak with anyone that has

questions about the Cholangioocarcinoma. Liver Transplant study.

Dr. Schwarts was at the Mayo before he came to U of Utah. I have

complete confidence in him and the other doctors that I am working

with. The study began just months ago and there are currently 2

patients on the study. (They are hoping for 5-7 per year)

One of the main focuses of the study is to identify cancer markers or

other indications that will help find the cancer sooner.

Cholangiocarcinoma is hard to detect. They found mine from brushing

during and annual ERCP to open us strictures.

There is hope and I feel like this is a good treatment choice for me.

The cancer was found in the cellular state.

I asked why they don't just transplant without the cancer treatment.

He said that the number of survivors of transplant without the cancer

treatment is very low. There is controversy in the medical world

about the protocol that I am on cancer treatment and transplant.

The Mayo numbers are really good they increased the 5 year survival

rate from 20% to 82%.

My prayers are with you, I hope that if this is a problem for you

that it is found soon.

Franson

[Guest guest]

,

Thank you so much for your words of hope. I just finished the SPYGLASS

procedure and I'm a bit doped up. Once again the doctors couldn't get

through the darned stricture and are now recommending a Roux en Y (or

Hepaticojujonostomy - spelling?). I ask for prayers from you and the

group that this is not cancer but PSC showing up as a stricture.

The 5 yr survival rate being 82% sounds good and it appears they are

making big strides.

The fact that you are on the LTx list is also great news.

Perhaps I don't have cancer and this is the way this cruddy disease is

showing up in me. But again , thank you giving hope in a

potentially hopeless situation.

May God richley bless you.

Mchael - 45

PSC, Crohns 2000

>

> Hello ,

>

> I have Cholangiocarcinoma and am on the transplant list for the south

> west US. I have just finished 25 days of external radiation with

> three days of chemo.

>

> The study at the University of Utah is headed by Dr. Schwarts.

> (801)585-27089 (leave him a message and tell him Franson

> referred you). I asked him about sharing the information with the

> group. He said that he would personally speak with anyone that has

> questions about the Cholangioocarcinoma. Liver Transplant study.

>

> Dr. Schwarts was at the Mayo before he came to U of Utah. I have

> complete confidence in him and the other doctors that I am working

> with. The study began just months ago and there are currently 2

> patients on the study. (They are hoping for 5-7 per year)

>

> One of the main focuses of the study is to identify cancer markers or

> other indications that will help find the cancer sooner.

> Cholangiocarcinoma is hard to detect. They found mine from brushing

> during and annual ERCP to open us strictures.

>

> There is hope and I feel like this is a good treatment choice for me.

> The cancer was found in the cellular state.

>

> I asked why they don't just transplant without the cancer treatment.

> He said that the number of survivors of transplant without the cancer

> treatment is very low. There is controversy in the medical world

> about the protocol that I am on cancer treatment and transplant.

>

> The Mayo numbers are really good they increased the 5 year survival

> rate from 20% to 82%.

>

> My prayers are with you, I hope that if this is a problem for you

> that it is found soon.

>

> Franson

>

[Guest guest]

>

> If they find cancer, I'm told it will eliminate me from ever being on

> the LTx list. Is that everyone elses experience?

>

> Are there any PSCers in this group living with cancer?

>

Up until two weeks ago, I was. I've been a member of the group here

for seven years, but don't post very much anymore. My PSC was dormant

for most of the ten years since I was diagnosed in 1997. Then,

earlier this year, my fatigue started to get worse and I began to lose

weight. I had an ERCP done in mid-June, and the biopsies from both

internal bile ducts came back positive for cancer. An EUS that was

done two weeks later revealed a 1 centimeter mass near where the CBD

exits the liver. Needless to say, I was devastated, since nothing had

ever come up on any of my previous blood tests to indicate the

presence of CCA.

In mid-July, I began a five-week chemo and radiation treatment program

at University Hospital in Denver in hopes of shrinking the tumor and

allowing a transplant to take place. All subsequent tests had showed

that it had not yet spread beyond the liver. My MELD score was only

13, so it was extremely unlikely that I was going to get a cadaveric

liver. However, I had several living donor candidates step forward on

my behalf, and my 34 year old nephew was scheduled to fly out from New

York City on Aug. 13th to be tested.

On Aug. 9th, my MELD got bumped up to 21. Four days later, Aug. 13th,

I got the call at 1:30 in the morning to come down to the hospital by

6:00 a.m. since they had a liver available for me. I live four hours

away in the mountains, and jumped in the car and drove like mad to get

there in time. At ten o'clock that morning, I got my new liver.

Everything went very smoothly. I was on the table for four hours,

took one unit of blood, and was out of the hospital in eight days.

To say that the last two weeks have been a whirlwind for me would be a

extreme understatement. Two months ago, I was told that I had CCA and

might have six months to live. Today, all indications are that the

cancer was contained within the liver and did not spread. They may

have me complete the chemo and radiation program as a precautionary

measure, since I had only done three of the five weeks before tx. I

will also get a PETscan in three months.

So the answer to your question, , is that yes, people with CCA

can still get a transplant, for which I am extremely grateful!

Gene

[Guest guest]

Gene,

Thank you for sharing your story with us. As you can imagine, we're all a

bit worried about CCA and if we have it we want it caught early. It also

appears that it's no longer just the Mayo Clinic that is treating CCA in

patients with PSC. The Univ. of Utah and now Univ. Hospital of Denver are

also treating CCA in patients with PSC. That is good news indeed. It also

appears that the ERCP test is the test for early detection of CCA. Now I

just have to get my doctor to agree to it. So far he's refused because he

feels the risks outweigh the benefits.

-Marie

>

>

>

>Up until two weeks ago, I was. I've been a member of the group here

>for seven years, but don't post very much anymore. My PSC was dormant

>for most of the ten years since I was diagnosed in 1997. Then,

>earlier this year, my fatigue started to get worse and I began to lose

>weight. I had an ERCP done in mid-June, and the biopsies from both

>internal bile ducts came back positive for cancer. An EUS that was

>done two weeks later revealed a 1 centimeter mass near where the CBD

>exits the liver. Needless to say, I was devastated, since nothing had

>ever come up on any of my previous blood tests to indicate the

>presence of CCA.

>

>In mid-July, I began a five-week chemo and radiation treatment program

>at University Hospital in Denver in hopes of shrinking the tumor and

>allowing a transplant to take place. All subsequent tests had showed

>that it had not yet spread beyond the liver. My MELD score was only

>13, so it was extremely unlikely that I was going to get a cadaveric

>liver. However, I had several living donor candidates step forward on

>my behalf, and my 34 year old nephew was scheduled to fly out from New

>York City on Aug. 13th to be tested.

>

>On Aug. 9th, my MELD got bumped up to 21. Four days later, Aug. 13th,

>I got the call at 1:30 in the morning to come down to the hospital by

>6:00 a.m. since they had a liver available for me. I live four hours

>away in the mountains, and jumped in the car and drove like mad to get

>there in time. At ten o'clock that morning, I got my new liver.

>Everything went very smoothly. I was on the table for four hours,

>took one unit of blood, and was out of the hospital in eight days.

>

>To say that the last two weeks have been a whirlwind for me would be a

>extreme understatement. Two months ago, I was told that I had CCA and

>might have six months to live. Today, all indications are that the

>cancer was contained within the liver and did not spread. They may

>have me complete the chemo and radiation program as a precautionary

>measure, since I had only done three of the five weeks before tx. I

>will also get a PETscan in three months.

>

>So the answer to your question, , is that yes, people with CCA

>can still get a transplant, for which I am extremely grateful!

>

>Gene

>

_________________________________________________________________

Puzzles, trivia teasers, word scrambles and more. Play for your chance to

win! http://club.live.com/home.aspx?icid=CLUB_hotmailtextlink

[Guest guest]

>

>

Besides the hospitals below that treat CCA, Columbia-Presby in

NYC also treats it to.

>The Univ. of Utah and now Univ. Hospital of Denver are

> also treating CCA in patients with PSC. >

> >

> >

> >

> >Up until two weeks ago, I was. I've been a member of the group

here

> >for seven years, but don't post very much anymore. My PSC was

dormant

> >for most of the ten years since I was diagnosed in 1997. Then,

> >earlier this year, my fatigue started to get worse and I began to

lose

> >weight. I had an ERCP done in mid-June, and the biopsies from

both

> >internal bile ducts came back positive for cancer. An EUS that

was

> >done two weeks later revealed a 1 centimeter mass near where the

CBD

> >exits the liver. Needless to say, I was devastated, since

nothing had

> >ever come up on any of my previous blood tests to indicate the

> >presence of CCA.

> >

> >In mid-July, I began a five-week chemo and radiation treatment

program

> >at University Hospital in Denver in hopes of shrinking the tumor

and

> >allowing a transplant to take place. All subsequent tests had

showed

> >that it had not yet spread beyond the liver. My MELD score was

only

> >13, so it was extremely unlikely that I was going to get a

cadaveric

> >liver. However, I had several living donor candidates step

forward on

> >my behalf, and my 34 year old nephew was scheduled to fly out

from New

> >York City on Aug. 13th to be tested.

> >

> >On Aug. 9th, my MELD got bumped up to 21. Four days later, Aug.

13th,

> >I got the call at 1:30 in the morning to come down to the

hospital by

> >6:00 a.m. since they had a liver available for me. I live four

hours

> >away in the mountains, and jumped in the car and drove like mad

to get

> >there in time. At ten o'clock that morning, I got my new liver.

> >Everything went very smoothly. I was on the table for four hours,

> >took one unit of blood, and was out of the hospital in eight days.

> >

> >To say that the last two weeks have been a whirlwind for me would

be a

> >extreme understatement. Two months ago, I was told that I had

CCA and

> >might have six months to live. Today, all indications are that

the

> >cancer was contained within the liver and did not spread. They

may

> >have me complete the chemo and radiation program as a

precautionary

> >measure, since I had only done three of the five weeks before

tx. I

> >will also get a PETscan in three months.

> >

> >So the answer to your question, , is that yes, people with

CCA

> >can still get a transplant, for which I am extremely grateful!

> >

> >Gene

> >

>

> _________________________________________________________________

> Puzzles, trivia teasers, word scrambles and more. Play for your

chance to

> win! http://club.live.com/home.aspx?icid=CLUB_hotmailtextlink

>

[Guest guest]

Dear ,

I'm sorry this come too late to encourage your for your spyglass ERCP, and I'm

really sorry

to hear it didn't work. My endoscopist (Dr Pleskow, Beth Israel-Deaconess Med

Center,

Boston) helped develop this scope and he has used it on me twice. The first time

it did not

succeed in opening the stricture, but he got a good look at the duct and did not

see any

abnormal cells at the bottom of the stricture. A year later he got an improved

model

through a stubborn stricture in the right hepatic duct. My stricture was much

higher than

yours is.

Prior to his success with the spyglass, he had referred me to the transplant

team to

evaluate the possibility of doing a Roux en Y hepaticojejunostomy. One step

they wanted

to try before surgery was a PTC, in which a fine needle is passed into the liver

between the

ribs to get into the ducts from above, The plan was to insert a drain so the

liver could

drain to the outside, and it would also have allowed them to inject contrast and

see the

state of the bile ducts inside the liver. In my case it was premature because I

felt well, had

near normal LFTs and normal bilirubin. In your case since the stricture is so

low in the

CBD, I don't know if PTC will make it possible to reach the stricture. There was

a concern it

was cancer but they were very careful to downplay the possibility to me (which

made me

lose faith in the surgical team; I know the risk), and furthermore, they would

have been in

no position to do anything about it because they don't do the Mayo protocol. In

your

shoes I would see the best CCA expert I could get to, if you can travel to any

of the centers

that now do transplants for treating CCA with the Mayo protocol.

There are others here who have had a biliary bypass by roux en Y. In your

situation it may

be appropriate. However, if you are not ill, you may want to consider if it is

premature to

do it.They like to do it early because blocked ducts degrade the liver

relatively quickly.

Are there any other signs that you might have cancer, such as elevated CA19-9,

or any

anomalies on imaging studies? Unfortunately CCA is very insidious and can grow

without

either of these signs, because it tends to grow along the duct walls.

Nevertheless, MRCP,

CT and PET have all been used to try to detect it. Be careful if they suggest a

fine needle

biopsy or exploratory surgery, because if there is a tumor, it can be " seeded "

to new sites

if cells are dislodged.

Stay strong as you face this.

Martha (MA)

UC 1979, PSC 1992, asymptomatic

> Thank you so much for your words of hope. I just finished the SPYGLASS

> procedure and I'm a bit doped up. Once again the doctors couldn't get

> through the darned stricture and are now recommending a Roux en Y (or

> Hepaticojujonostomy - spelling?). I ask for prayers from you and the

> group that this is not cancer but PSC showing up as a stricture.

>

>

> Mchael - 45

>

> PSC, Crohns 2000

[Guest guest]

,

I just got back from the Mayo Clinic for my 4 year

checkup with Dr. Gores. I had cholangiocarcinoma

in my CBD and I had the roux-en-y and whipple surgery

done at the Mayo Clinic. I also had chemo and

radiation after surgery. I am in the clear another

year and healthy as a horse, even though I still have

PSC.

Wishing you the best of luck.

Liz Ward

Fredericksburg, VA

PSC 02, CC 03

________________________________________________________________________________\

____

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder

tool.

http://autos.yahoo.com/carfinder/

[Guest guest]

Liz,

WOW ...

I'm not sure how much you've read my topic. I have not been diagnosed with CCA, but have a very blocked CBD. And it's right down near the pancreatic duct, but still in the CBD. I'm scheduled for the Roux en Y on September 10th. I think we'll find out then whether theres CCA or not. Please pray for no CCA.

It's great to hear your story and it gives me hope. I'm glad to hear you are healthy as a horse and still kickin' ...

Are you on the LTx list?

Did they find the CCA with an ERCP brushing?

Why did you go to the Mayo Clinic for your medical work versus perhaps UVA Hospital?

The doctors who head up the transplant team here in Louisville (Dr's Beull and Marvin) have told me that if they find cancer, then I'm no longer eligible to ever be on the LTx waiting list. And long term survival is low. That took my hope away. Thanks for giving some of it back!

- 45

Louisville, KY

PSC, Crohns 2000

>> ,> I just got back from the Mayo Clinic for my 4 year> checkup with Dr. Gores. I had cholangiocarcinoma> in my CBD and I had the roux-en-y and whipple surgery> done at the Mayo Clinic. I also had chemo and> radiation after surgery. I am in the clear another> year and healthy as a horse, even though I still have> PSC. > > Wishing you the best of luck.> > Liz Ward> Fredericksburg, VA> PSC 02, CC 03 > > > > ____________________________________________________________________________________> Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.> http://autos.yahoo.com/carfinder/>

[Guest guest]

Liz,

How long did it take you to recover from the Roux En Y and Whipple?

Did you have any complications?

Thanks ...

- 45

PSC, Crohns 2000

>

> ,

> I just got back from the Mayo Clinic for my 4 year

> checkup with Dr. Gores. I had cholangiocarcinoma

> in my CBD and I had the roux-en-y and whipple surgery

> done at the Mayo Clinic. I also had chemo and

> radiation after surgery. I am in the clear another

> year and healthy as a horse, even though I still have

> PSC.

>

> Wishing you the best of luck.

>

> Liz Ward

> Fredericksburg, VA

> PSC 02, CC 03

>

>

>

>

________________________________________________________________________\

____________

> Choose the right car based on your needs. Check out Yahoo! Autos new

Car Finder tool.

> http://autos.yahoo.com/carfinder/

>

[Guest guest]

Liz -

Congratulations on the wonderful news of your checkup at Mayo! Thanks

for sharing such exciting news.

Joanne H.

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

>

> ,

> I just got back from the Mayo Clinic for my 4 year

> checkup with Dr. Gores. I had cholangiocarcinoma

> in my CBD and I had the roux-en-y and whipple surgery

> done at the Mayo Clinic. I also had chemo and

> radiation after surgery. I am in the clear another

> year and healthy as a horse, even though I still have

> PSC.

>

> Wishing you the best of luck.

>

> Liz Ward

> Fredericksburg, VA

> PSC 02, CC 03

>

>

>

>

________________________________________________________________________________\

____

> Choose the right car based on your needs. Check out Yahoo! Autos

new Car Finder tool.

> http://autos.yahoo.com/carfinder/

>