Re: Doctor suspects cancer sending for ERCP and brushings

[Guest guest]

Nichole,

Good luck with ' ERCP. I hope that no unusual cells will show up.

You're in my thoughts.

Ricky

PSC 2003

Doctor suspects cancer sending for ERCP and brushings

> When went to the doctor on Wed. his hepatologist said that the

> CA19-9 and the CT scan have him worried that there is cancer. > Nichole

> (wife of PSC & UC 08/2004

> and niece of Gwen PSC & Chron's died 2004)

>

>

>

>

>

[Guest guest]

Nichole,

Good luck with ' ERCP. I hope that no unusual cells will show up.

You're in my thoughts.

Ricky

PSC 2003

Doctor suspects cancer sending for ERCP and brushings

> When went to the doctor on Wed. his hepatologist said that the

> CA19-9 and the CT scan have him worried that there is cancer. > Nichole

> (wife of PSC & UC 08/2004

> and niece of Gwen PSC & Chron's died 2004)

>

>

>

>

>

[Guest guest]

Nichole,

Good luck with ' ERCP. I hope that no unusual cells will show up.

You're in my thoughts.

Ricky

PSC 2003

Doctor suspects cancer sending for ERCP and brushings

> When went to the doctor on Wed. his hepatologist said that the

> CA19-9 and the CT scan have him worried that there is cancer. > Nichole

> (wife of PSC & UC 08/2004

> and niece of Gwen PSC & Chron's died 2004)

>

>

>

>

>

[Guest guest]

Hang in there Nichole,

I will be thinking of you both and hoping for the best.

Lee

[Guest guest]

Hang in there Nichole,

I will be thinking of you both and hoping for the best.

Lee

[Guest guest]

Nichole and Gharles,

I am so sorry you have this worry, but at least your doctor is taking

it seriously. I really hope that this is a false alarm, but the only

way you are going to know is to investigate it thoroughly. What I'm

going to say now I hope you won't take as alarmist, and I sincerely

apologize if anything I say is incorrect, and if it is, please do let

me know.

Since the MELD system doesn't give points for atypical cells I would

go straight to the experts at Mayo because of the wait for a liver.

Also since CCA detection is so difficult, any atypical cells might be

only the tip of the iceberg, and if there's real cancer it might not

be seen until the transplant surgery begins and then there will be no

transplant. If you can't go to Dr Gores at Mayo in Rochester MN, at

least get your physician to consult with him and bring some of their

expertise to you. The other thing I'm concerned about is that I think

your doctor still hasn't ordered an MRCP? Dr Gores' articles, and Dr.

Aubrey here also, have said that it is the best imaging test for CCA

(not that it's anywhere near good enough, but worth a try). If CCA is

confirmed, I thought only the Mayo clinics and I think U Neb. Omaha

are allowed to do cadaveric transplants by UNOS, and the criteria are

very strict as far as tumor size and spread, and there's a strict

series of chemotherapy they have to do first. So if it's CCA would

they really be able to do the transplant in Charlotte? If you find out

more, please educate us on it.

In doing the ERCP brushings, most labs do conventional histology. The

sensitivity of conventional histology in detecting CCA is not so good,

anywhere from 15-60% depending on who's doing it. Dr Gores and the

clinical labs at Mayo in Rochester do a more sophisticated analysis,

looking at specific changes in chromosomes and looking at the amount

of DNA in the cells (cancer cells may have extra chromosomes, and

thus be brighter with a fluorescent DNA stain). His papers show that

these tests have better sensitivity. My doctor talked with Dr. Gores

so that he could send the samples from my ERCP to the Mayo labs.

Unfortunately, it failed because he didn't get enough tissue. My

insurance might not have paid for it, but they did pay for the

conventional histology the Mayo labs did, even though it was out of

state. I thought it was worth the expense at any rate, but in your

case, with the CA19-9 and CT scan results, maybe you should think

about having the ERCP in Rochester so you can get everything done as

well and smoothly as it can be done. Maybe Mayo in ville would

be able to do the same, but Dr. Gores is the real expert nationally.

You will be in our thoughts as you struggle with these decisions.

Best wishes this Easter,

Martha (MA)

>

> When went to the doctor on Wed. his hepatologist said that the

> CA19-9 and the CT scan have him worried that there is cancer. He will

> be having an ERCP soon. He said that if they find cancer or funny

> looking cells that may not yet be cancer but may be pre-cancer that

> they will probably go ahead and list for a transplant. We

> mentioned that we had always talked about temporarily relocating to

> Florida to get transplanted in ville and his hepatologist said

> they could transplant him in Charlotte but if he wanted to go to Mayo

> that they did have a good protocol for dealing with this. I wasn't

> really prepared for this. Now, we are just waiting to find out when

> his ERCP will be.

>

> Nichole

> (wife of PSC & UC 08/2004

> and niece of Gwen PSC & Chron's died 2004)

>

[Guest guest]

Nichole and Gharles,

I am so sorry you have this worry, but at least your doctor is taking

it seriously. I really hope that this is a false alarm, but the only

way you are going to know is to investigate it thoroughly. What I'm

going to say now I hope you won't take as alarmist, and I sincerely

apologize if anything I say is incorrect, and if it is, please do let

me know.

Since the MELD system doesn't give points for atypical cells I would

go straight to the experts at Mayo because of the wait for a liver.

Also since CCA detection is so difficult, any atypical cells might be

only the tip of the iceberg, and if there's real cancer it might not

be seen until the transplant surgery begins and then there will be no

transplant. If you can't go to Dr Gores at Mayo in Rochester MN, at

least get your physician to consult with him and bring some of their

expertise to you. The other thing I'm concerned about is that I think

your doctor still hasn't ordered an MRCP? Dr Gores' articles, and Dr.

Aubrey here also, have said that it is the best imaging test for CCA

(not that it's anywhere near good enough, but worth a try). If CCA is

confirmed, I thought only the Mayo clinics and I think U Neb. Omaha

are allowed to do cadaveric transplants by UNOS, and the criteria are

very strict as far as tumor size and spread, and there's a strict

series of chemotherapy they have to do first. So if it's CCA would

they really be able to do the transplant in Charlotte? If you find out

more, please educate us on it.

In doing the ERCP brushings, most labs do conventional histology. The

sensitivity of conventional histology in detecting CCA is not so good,

anywhere from 15-60% depending on who's doing it. Dr Gores and the

clinical labs at Mayo in Rochester do a more sophisticated analysis,

looking at specific changes in chromosomes and looking at the amount

of DNA in the cells (cancer cells may have extra chromosomes, and

thus be brighter with a fluorescent DNA stain). His papers show that

these tests have better sensitivity. My doctor talked with Dr. Gores

so that he could send the samples from my ERCP to the Mayo labs.

Unfortunately, it failed because he didn't get enough tissue. My

insurance might not have paid for it, but they did pay for the

conventional histology the Mayo labs did, even though it was out of

state. I thought it was worth the expense at any rate, but in your

case, with the CA19-9 and CT scan results, maybe you should think

about having the ERCP in Rochester so you can get everything done as

well and smoothly as it can be done. Maybe Mayo in ville would

be able to do the same, but Dr. Gores is the real expert nationally.

You will be in our thoughts as you struggle with these decisions.

Best wishes this Easter,

Martha (MA)

>

> When went to the doctor on Wed. his hepatologist said that the

> CA19-9 and the CT scan have him worried that there is cancer. He will

> be having an ERCP soon. He said that if they find cancer or funny

> looking cells that may not yet be cancer but may be pre-cancer that

> they will probably go ahead and list for a transplant. We

> mentioned that we had always talked about temporarily relocating to

> Florida to get transplanted in ville and his hepatologist said

> they could transplant him in Charlotte but if he wanted to go to Mayo

> that they did have a good protocol for dealing with this. I wasn't

> really prepared for this. Now, we are just waiting to find out when

> his ERCP will be.

>

> Nichole

> (wife of PSC & UC 08/2004

> and niece of Gwen PSC & Chron's died 2004)

>

[Guest guest]

Nichole and Gharles,

I am so sorry you have this worry, but at least your doctor is taking

it seriously. I really hope that this is a false alarm, but the only

way you are going to know is to investigate it thoroughly. What I'm

going to say now I hope you won't take as alarmist, and I sincerely

apologize if anything I say is incorrect, and if it is, please do let

me know.

Since the MELD system doesn't give points for atypical cells I would

go straight to the experts at Mayo because of the wait for a liver.

Also since CCA detection is so difficult, any atypical cells might be

only the tip of the iceberg, and if there's real cancer it might not

be seen until the transplant surgery begins and then there will be no

transplant. If you can't go to Dr Gores at Mayo in Rochester MN, at

least get your physician to consult with him and bring some of their

expertise to you. The other thing I'm concerned about is that I think

your doctor still hasn't ordered an MRCP? Dr Gores' articles, and Dr.

Aubrey here also, have said that it is the best imaging test for CCA

(not that it's anywhere near good enough, but worth a try). If CCA is

confirmed, I thought only the Mayo clinics and I think U Neb. Omaha

are allowed to do cadaveric transplants by UNOS, and the criteria are

very strict as far as tumor size and spread, and there's a strict

series of chemotherapy they have to do first. So if it's CCA would

they really be able to do the transplant in Charlotte? If you find out

more, please educate us on it.

In doing the ERCP brushings, most labs do conventional histology. The

sensitivity of conventional histology in detecting CCA is not so good,

anywhere from 15-60% depending on who's doing it. Dr Gores and the

clinical labs at Mayo in Rochester do a more sophisticated analysis,

looking at specific changes in chromosomes and looking at the amount

of DNA in the cells (cancer cells may have extra chromosomes, and

thus be brighter with a fluorescent DNA stain). His papers show that

these tests have better sensitivity. My doctor talked with Dr. Gores

so that he could send the samples from my ERCP to the Mayo labs.

Unfortunately, it failed because he didn't get enough tissue. My

insurance might not have paid for it, but they did pay for the

conventional histology the Mayo labs did, even though it was out of

state. I thought it was worth the expense at any rate, but in your

case, with the CA19-9 and CT scan results, maybe you should think

about having the ERCP in Rochester so you can get everything done as

well and smoothly as it can be done. Maybe Mayo in ville would

be able to do the same, but Dr. Gores is the real expert nationally.

You will be in our thoughts as you struggle with these decisions.

Best wishes this Easter,

Martha (MA)

>

> When went to the doctor on Wed. his hepatologist said that the

> CA19-9 and the CT scan have him worried that there is cancer. He will

> be having an ERCP soon. He said that if they find cancer or funny

> looking cells that may not yet be cancer but may be pre-cancer that

> they will probably go ahead and list for a transplant. We

> mentioned that we had always talked about temporarily relocating to

> Florida to get transplanted in ville and his hepatologist said

> they could transplant him in Charlotte but if he wanted to go to Mayo

> that they did have a good protocol for dealing with this. I wasn't

> really prepared for this. Now, we are just waiting to find out when

> his ERCP will be.

>

> Nichole

> (wife of PSC & UC 08/2004

> and niece of Gwen PSC & Chron's died 2004)

>

[Guest guest]

-----Original

Message-----

We mentioned that we

had always talked about temporarily relocating to Florida

to get transplanted in ville

Please be sure to find

out if the hospital and doctors in Charlotte will care for if he gets his transplant out of state.

We recently found out

that Baylor (and the Tx & Hep doctors) will not

care for anyone who has a tx out state for the first year post tx. So a couple we know,

has to go back to Indiana every time anything happens.

This has become a huge burden for them.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

_

[Guest guest]

> Please be sure to find out if the hospital and doctors in Charlotte

will

> care for if he gets his transplant out of state.

>

I know that his hepatologist will still care for him if he has his

transplant at Mayo out of state in fact he said he has referred people

there before. Do I need to find out about any other doctors in

Charlotte besides his hepatologist?

[Guest guest]

I am sorry I have not replied to all of the nice postings of support

and e-mails that were sent to me. I really do appreciate them. I am

feeling very overwhelmed and very frustrated.

I just want to vent:

We still don't have the appointment for his ERCP

I called today to request that they also do an MRCP (based on the

advice here) - since Mayo isn't in-network I want to have as much

done here as we can.

We have been looking into the Mayo options and I could kick myself

for not checking into this before. March was the month for selecting

or changing health plans (his runs Jul.1 - Jun.30) we stayed with the

same one. His does not have Mayo as in-network although the other

option offered does have Mayo as in-network. He has dual insurance

coverage and my insurnace (his secondary insurance) has Mayo as in-

network but they said that the doctors don't do a write-off based on

the secondary insurance and so because his primary doesn't have a

contract we may still have to pay part of the diffence between the

UCR and the amount charged (but not all of it since we have dual

coverage).

does not want to cancel oul late-May family vacation to

Hawaii. I could rant for a couple hours on this one but I won't.

I have to order the roses in less than three weeks if I am going to

do the rose sale. I want to do it but I have no idea how I can do

this since we don't know where we will be or what we will be doing.

I called Dr. Gores office at Mayo to at least see about getting

in there and we are in the process of getting everything

together that they need. But, it looks like unless Dr. Gores

specifies something different (after looking over his records) that

he would not be able to see until late May. That is why I

want to go ahead and have the ERCP done here. I would go crazy if I

had to wait until the end of May for the ERCP.

Because we have a 5-year old daughter we want to have a plan for who

will care for her if we are not able to. We had planned before she

was born that it would be my sister and her husband but my sister is

dying with ALS and it is progressing very rapidly. Her symptoms

started in May with problems gripping a pen and problems putting up

shelves. Now she is in a wheelchair, unable to even pull herself

into a sitting position from a laying position, she can only use one

of her hands a little bit, she is slurring her speech, and choking on

her food and the doctors say that ALS is usually consistent in that

if it starts slow it doesn't speed up and if it starts fast it

doesn't slow down. Hers is progressing very fast. Her husband has

stage 4 recurrent inoperable melanoma and is on a study drug. They

have a 13 year old son. We do not know who we want to be Melody's

guardians. Everyone we consider has some pros and some cons.

I am suppose to graduate May 12 with my MBA. Right now I am working

full time and going to school full time. This week, next week, and

the week after are going to be so hard for me. I am so far behind on

all three of my group projects. I don't know how I can pull myself

together and not let down my teams.

I was turned down for a raise at work and told that I may not even

have work next year since this project is ending and they are

undecided about next years projects.

Melody's birthday was March 30 and I have a bunch of thank you cards

to write and absolutely no time right now to write them.

My dad has NASH with cirrhosis, very out of control diabetes, and a

ton of other health problems. The VA refused to increase his

disability so my dad is refusing to have the tests Dr. Purdum (his

hepatologist) wants to do because he says he can't afford the 10% co-

insurance.

I am sorry, I must sound like a real whiner with all this. I just

don't know how much more I can take right now. I need to be

healthy. He feels bad pretty much every day now.

Thank you for listening.

Regards,

Nichole

(wife of PSC & UC 08/04)

[Guest guest]

Nichole,

You have enough worries to exhaust 10 people. All I can suggest is to

break them down before you break down. Prioritize what you HAVE to do

in the next 3 weeks, and postpone everything else. If Melody's thank

you cards don't arrive till late May, your friends will forgive you.

Is it possible to take an incomplete in one of the courses if you

absolutely have to? It would be awful to postpone graduation but if

you have to?

At the large teaching hospital that I go to, ERCPs can be scheduled

within 2-3 weeks for routine, and faster for urgent cases. MRCPs can

be scheduled within 1-2 weeks.

good luck, get some rest.

Martha (MA)

[Guest guest]

Nichole,

You have enough worries to exhaust 10 people. All I can suggest is to

break them down before you break down. Prioritize what you HAVE to do

in the next 3 weeks, and postpone everything else. If Melody's thank

you cards don't arrive till late May, your friends will forgive you.

Is it possible to take an incomplete in one of the courses if you

absolutely have to? It would be awful to postpone graduation but if

you have to?

At the large teaching hospital that I go to, ERCPs can be scheduled

within 2-3 weeks for routine, and faster for urgent cases. MRCPs can

be scheduled within 1-2 weeks.

good luck, get some rest.

Martha (MA)

[Guest guest]

Nichole,

You have enough worries to exhaust 10 people. All I can suggest is to

break them down before you break down. Prioritize what you HAVE to do

in the next 3 weeks, and postpone everything else. If Melody's thank

you cards don't arrive till late May, your friends will forgive you.

Is it possible to take an incomplete in one of the courses if you

absolutely have to? It would be awful to postpone graduation but if

you have to?

At the large teaching hospital that I go to, ERCPs can be scheduled

within 2-3 weeks for routine, and faster for urgent cases. MRCPs can

be scheduled within 1-2 weeks.

good luck, get some rest.

Martha (MA)