Ouch!

[Guest guest]

Hi All,

I went into see my new doctor @ Scripps today...again thinking I was going to hear I was stage 1 or 2 with my PSC...Why? Because I've been feeling great because of the URSO & cholestyramine he put me on two weeks ago....and I get....(That I might have cancer) along with my PSC and in my bile ducts....something to do with a blood test they did and my count was 300+? After my Dr. said that.... my brain went into comatose state...and I think heard the words CT scan with die and exploratory surgery.... Mayo clinic..yada, yada yada!

I just went outa body...weird..can anyone relate...?

Don B...PSC/UC-11-08

PS Rule number 1 don't go to the DR. by yourself....I can't even remember the drive home!

[Guest guest]

Hi Don,I feel for you. I was in the same exact situation. I knew that I have something on my liver, and I knew that I do not have cancer but I went through the Cat Scan, they confirmed a mass on my pancreas and with that I was referred to the Cleveland Clinic, Surgery unit. Here I got told that I have pancreatic cancer. My option is the exploratory operation with the chance of the Whipple procedure. The exact word of the surgeon was than, I see you in 2 weeks on my table. Have a nice day.I do not know how I drove home, I used every swear word in the english and german dictionary, driving instead 60 m/h I drove 80 m/h on the highway. I went through 2 weeks of horror nightmares, not knowing how long do I have to live, do I survive that operation etc. I was laying on the table 2 weeks later, no kind words of a nurse or a doctor, as far as I remember the last words I heard was, we do the Whipple procedure. I started crying like crazy and off I went to happyland. 2 hours later I woke up, the surgeon told my husband that he could not find any kind of cancer. He removed my gallbladder and saw than, that the bile ducts of my liver was scared and narrowed and that I have PSCV. He was 200% sure, that I had cancer and he apologized to my husband (never to me personally) that he assumed that I had cancer. 28 staples later and 1 week in hospital I was send home. A couple months later I was back in the Clinic for jaundice and for internal/external stents. I stayed one week and that was already enough for me. The surgeon was the worst doctor I ever met in my life, no manners and rude from top to toe. I said to my hepatologist, if I ever have to come back to the Cleveland Clinic for any reason, I do not wish to see him, and he was not allowed ever to operate on me again. Now I have a new hepatologist here in Canton OH and in case I have ever to go for a transplant, I will be send to Pittsburgh as I will refuse to set foot in Cleveland again. I can relate to your experience in every way, as I had to go through that kind of nightmare as well. I hope that you will find a doctor who is more patient oriented and cares about you as a person.Take care,JuttaPSC/2004To: CC: mtc.wells@...; rhodesdavid1@...; jdruk59@...From: culsaws@...Date: Thu, 19 Feb 2009 18:46:42 -0800Subject: Ouch!

Hi All,

I went into see my new doctor @ Scripps today...again thinking I was going to hear I was stage 1 or 2 with my PSC...Why? Because I've been feeling great because of the URSO & cholestyramine he put me on two weeks ago....and I get....(That I might have cancer) along with my PSC and in my bile ducts....something to do with a blood test they did and my count was 300+? After my Dr. said that.... my brain went into comatose state...and I think heard the words CT scan with die and exploratory surgery.... Mayo clinic..yada, yada yada!

I just went outa body...weird..can anyone relate...?

Don B...PSC/UC-11-08

PS Rule number 1 don't go to the DR. by yourself....I can't even remember the drive home!

Windows Live™: Keep your life in sync. Check it out.

[Guest guest]

Yes......my husband was diagnosed with PSC when he went in for an outpatient procedure to remove what we thought was a stone in his bile duct in May of 2007. After immediate surgery (his biliruban was 19), and MANY complications, he came home surviving all odds 7 1/2 months later from a very grueling stay in ICU. That following spring a team of doctors said after having a barrage of testing, that he could be a candidate for a liver transplant. However, since he he had had bladder cancer in 2005 and not declared cancer free until November of 2006, he could not be considered for a liver transplant unless he was cancer free for 2 years. We had to get to November of 2008. In April of 2008 his cancer returned. The 2 year count started over and in December his cancer returned

again. This time, because of the stage of his PSC they can not do chemo.........we know what numb is and looking at doctors lips moving and no sound coming out is........

However...Do NOT give up hope..we still have not.......we make every day count! Our prayers are with you!Bobbie

Subject: Ouch!To: Cc: mtc.wells@..., rhodesdavid1@..., "john drukker" Date: Thursday, February 19, 2009, 8:46 PM

Hi All,

I went into see my new doctor @ Scripps today...again thinking I was going to hear I was stage 1 or 2 with my PSC...Why? Because I've been feeling great because of the URSO & cholestyramine he put me on two weeks ago....and I get....(That I might have cancer) along with my PSC and in my bile ducts....something to do with a blood test they did and my count was 300+? After my Dr. said that.... my brain went into comatose state...and I think heard the words CT scan with die and exploratory surgery.... Mayo clinic..yada, yada yada!

I just went outa body...weird. .can anyone relate...?

Don B...PSC/UC-11- 08

PS Rule number 1 don't go to the DR. by yourself.... I can't even remember the drive home!

[Guest guest]

Yes......my husband was diagnosed with PSC when he went in for an outpatient procedure to remove what we thought was a stone in his bile duct in May of 2007. After immediate surgery (his biliruban was 19), and MANY complications, he came home surviving all odds 7 1/2 months later from a very grueling stay in ICU. That following spring a team of doctors said after having a barrage of testing, that he could be a candidate for a liver transplant. However, since he he had had bladder cancer in 2005 and not declared cancer free until November of 2006, he could not be considered for a liver transplant unless he was cancer free for 2 years. We had to get to November of 2008. In April of 2008 his cancer returned. The 2 year count started over and in December his cancer returned

again. This time, because of the stage of his PSC they can not do chemo.........we know what numb is and looking at doctors lips moving and no sound coming out is........

However...Do NOT give up hope..we still have not.......we make every day count! Our prayers are with you!Bobbie

Subject: Ouch!To: Cc: mtc.wells@..., rhodesdavid1@..., "john drukker" Date: Thursday, February 19, 2009, 8:46 PM

Hi All,

I went into see my new doctor @ Scripps today...again thinking I was going to hear I was stage 1 or 2 with my PSC...Why? Because I've been feeling great because of the URSO & cholestyramine he put me on two weeks ago....and I get....(That I might have cancer) along with my PSC and in my bile ducts....something to do with a blood test they did and my count was 300+? After my Dr. said that.... my brain went into comatose state...and I think heard the words CT scan with die and exploratory surgery.... Mayo clinic..yada, yada yada!

I just went outa body...weird. .can anyone relate...?

Don B...PSC/UC-11- 08

PS Rule number 1 don't go to the DR. by yourself.... I can't even remember the drive home!

[Guest guest]

I had a similar experience. After multiple high fevers and

chills, they determined that I had a stricture in my common bile duct. The GI

guy referred me to a surgeon. He came into my room the night before surgery and

said, “you are here to deal with this cancer, period.” Sheesh – what do you say

to that? Then after surgery the first thing he said was “no cancer.” While I

was out they did a Rue-en-Y, no Whipple.

It still took two more years of periodic fevers before I got a

diagnosis of PSC.

nita

=====================

2 hours later I woke up, the surgeon told my

husband that he could not find any kind of cancer. He removed my gallbladder

and saw than, that the bile ducts of my liver was scared and narrowed and that

I have PSCV. He was 200% sure, that I had cancer and he apologized to my

husband (never to me personally) that he assumed that I had cancer.

[Guest guest]

I had a similar experience. After multiple high fevers and

chills, they determined that I had a stricture in my common bile duct. The GI

guy referred me to a surgeon. He came into my room the night before surgery and

said, “you are here to deal with this cancer, period.” Sheesh – what do you say

to that? Then after surgery the first thing he said was “no cancer.” While I

was out they did a Rue-en-Y, no Whipple.

It still took two more years of periodic fevers before I got a

diagnosis of PSC.

nita

=====================

2 hours later I woke up, the surgeon told my

husband that he could not find any kind of cancer. He removed my gallbladder

and saw than, that the bile ducts of my liver was scared and narrowed and that

I have PSCV. He was 200% sure, that I had cancer and he apologized to my

husband (never to me personally) that he assumed that I had cancer.

[Guest guest]

Hi Don,

It's been a couple of years now but I went through a similar

experience. Was told they thought I had liver cancer because I all of

a sudden lost a lot of weight, became really sick, and had some really

funky labs. I went brain dead and numb. Life just kind of happened

for a while. It turned out that I had really bad B-12 defficency. I

have 2 more cancer scares since then. If I ever do develop Liver

cancer I am not going to believe them at this point.

Any way. take each day as it comes. DOn't get ahead of your self.

This may be nothing it may be something but today is all you have. I

don't know if that make sense but that was the lesson that I learned

from my experiences with being told I might have the big C.

I will keep you in my thoughts.

Dawn

>

> I just went outa body...weird..can anyone relate...?

>

>

> Don B...PSC/UC-11-08

>

> PS Rule number 1 don't go to the DR. by yourself....I can't even

remember the drive home!

>

[Guest guest]

Hi Don,

My husband had a similar experience where he was told his "numbers" were high, and that he probably had lymphoma. When he went in for surgery, the lymph nodes were enlarged, but not a speck of cancer to be found. I hope your scare turns out to be nothing too. I know it certainly is stressful waiting to find out what's going on. I'll be thinking good thoughts for you.

Alison B.

Subject: Ouch!To: Cc: mtc.wells@..., rhodesdavid1@..., "john drukker" Date: Friday, February 20, 2009, 2:46 AM

Hi All,

I went into see my new doctor @ Scripps today...again thinking I was going to hear I was stage 1 or 2 with my PSC...Why? Because I've been feeling great because of the URSO & cholestyramine he put me on two weeks ago....and I get....(That I might have cancer) along with my PSC and in my bile ducts....something to do with a blood test they did and my count was 300+? After my Dr. said that.... my brain went into comatose state...and I think heard the words CT scan with die and exploratory surgery.... Mayo clinic..yada, yada yada!

I just went outa body...weird. .can anyone relate...?

Don B...PSC/UC-11- 08

PS Rule number 1 don't go to the DR. by yourself.... I can't even remember the drive home!