1

(4 replies, posted in Introductions!)

Just received a call back from Mayo ... My dad is not a candidate for liver transplant because his tumor is too extensive -- 5 cm. sad Disappointed, but still looking for more options.

I put in a call with Dr. Chapman at Barnes Jewish... Hoping we will get better results.

Here's my real issue:
It's been over a month since we have heard that nasty word "cholangiocarcinoma," and yet we have no treatment plans in place. I am so frustrated! I need to get my dad to see an oncologist RIGHT away to get some plans together.

First step, call University of Chicago and set up an appointment with their oncologist.

After that, should I still schedule an appointment to see Dr. Gores at Mayo? His nurse said he would still be willing to meet with my dad and talk about treatment options.

I saw on a few different posts that chemo may be able to shrink the tumor down to put him in the resectable category... Is that true? Has that happened for any of the members out there?

Also, if my dad begins chemo or radiation treatment, will that prevent him from any other surgical options (i.e. resection or transplant) later down the road?

Need prayers and a shot of hope!

THANKS...
Charlene

2

(13 replies, posted in Introductions!)

Katielinn,

I know what you mean when you say the waiting is the worst part! I love Lainy's philosophy that once you have a treatment plan in place, the "fright turns to fight!" I hope she's right, because I'm ready to help my dad take this on. Between second opinions and brushings and all that stuff, I just want a definitive answer so we can begin our fight!

Charlene

3

(9 replies, posted in General Discussion)

Yay! That is inspiring news! So glad to hear you're feeling well, besides your "scanxiety"... So funny. smile

Hi all,

Thanks so much for this forum! I'm so glad there are people to share this awful experience with...

Made the first call to Mayo Rochester today, and our doctor here at University of Chicago forwarded all of my dad's paperwork/labwork on to Dr. Gores. Keep your fingers crossed that after Dr. Gores reviews my dad's case, he is still willing to see him and consider him a candidate for the liver transplantation protocol!

Your kind thoughts and prayers mean so much to me and my family!

Thanks,
Charlene smile

Yes, I am talking about a needle biopsy done during and as part of an ERCP. Yesterday, my dad was scheduled to have an ERCP, an EUS, as well as a needle biopsy. During a previous ERCP, they did brushings but the cytology was unable to confirm the presence of cancer 100%, so they wanted to do a needle biopsy because there is a much better chance of identifying the cancer cells.

Like I said, I am relatively uninformed about all this, but sure am glad the doctor performing the ERCP had this discussion with us prior to the procedure. Otherwise, I would have known nothing about it, and possibly would have ruined his chances at Mayo. The doctor did not say that Mayo DEFINITELY would not consider my dad as a transplant candidate, but she did want me to be aware that it may be an issue somewhere down the Mayo road.

Thanks for posting that prior discussion, as well, Kathy.

Dad had his second ERCP today. Had a great technician! She was very caring and treated my dad as if he were her own parent. Dad was also scheduled to have a needle biopsy done today in order to confirm the type of cancer cell, but thanks to the technician's advice, we did not allow that to happen.

As you already know, the surgeon at U of C has decided that my dad is not resectable and has chosen not to operate on his tumor. Obviously, we were discouraged. This week, he was able to present my dad's case to the tumor board, where it was also presented to the transplantation team. The transplantation team also declined to take on my dad's case. They did, however, indicate that Mayo in Rochester would be our best hope, due to their liver transplant protocol for treating CC.

The reason I am posting this is to share some information that I was not aware of prior to Dad's ERCP and endoscopic ultrasound: Apparently, if the technician had done a needle biopsy, it may preclude my dad from being a candidate for liver transplantation. The reason behind this is that when a needle is inserted to remove cells for a biopsy, some doctors at Mayo fear that some of the cells may be released inside different layers of tissue on its way out, thus possibly spreading the cancer cells and precluding my dad from being a transplant candidate at Mayo. Obviously, that is pure speculation, and I have not done further research on this yet, as we had a very long day at the hospital, but I just thought I'd post this on here to get your points of view.

Additionally, the surgeon, after presenting to the tumor board, would have recommended that the technician replace my dad's plastic stent with a metal one, again precluding him from candidacy.

I'm not saying that Dad definitely is or is not a candidate for transplantation, or that even if we go to Mayo for the second opinion that he will opt for the surgery, but the fact that either the needle biopsy or the metal stent could have ruined my dad's chances at even TRYING to see if surgery is possible... IT MAKES ME LIVID.

He is home now, we are monitoring his temp and making sure he gets plenty of rest to recover from the ERCP, but I wanted to post this as a warning to anybody out there who may be getting a needle biopsy to confirm cancer... I am just so grateful for the doctor who shared this information with me and my family so we could make an INFORMED decision before completely dashing our chances for surgery.

7

(21 replies, posted in Introductions!)

Dad had his second ERCP today. Had a great technician! She was very caring and treated my dad as if he were her own parent. Dad was also scheduled to have a needle biopsy done today in order to confirm the type of cancer cell, but thanks to the technician's advice, we did not allow that to happen.

As you already know, the surgeon at U of C has decided that my dad is not resectable and has chosen not to operate on his tumor. Obviously, we were discouraged. This week, he was able to present my dad's case to the tumor board, where it was also presented to the transplantation team. The transplantation team also declined to take on my dad's case. They did, however, indicate that Mayo in Rochester would be our best hope, due to their liver transplant protocol for treating CC.

The reason I am posting this is to share some information that I was not aware of prior to Dad's ERCP and endoscopic ultrasound: Apparently, if the technician had done a needle biopsy, it may preclude my dad from being a candidate for liver transplantation. The reason behind this is that when a needle is inserted to remove cells for a biopsy, some doctors at Mayo fear that some of the cells may be released inside different layers of tissue on its way out, thus possibly spreading the cancer cells and precluding my dad from being a transplant candidate at Mayo. Obviously, that is pure speculation, and I have not done further research on this yet, as we had a very long day at the hospital, but I just thought I'd post this on here to get your points of view.

Additionally, the surgeon, after presenting to the tumor board, would have recommended that the technician replace my dad's plastic stent with a metal one, again precluding him from candidacy.

I'm not saying that Dad definitely is or is not a candidate for transplantation, or that even if we go to Mayo for the second opinion that he will opt for the surgery, but the fact that either the needle biopsy or the metal stent could have ruined my dad's chances at even TRYING to see if surgery is possible... IT MAKES ME LIVID.

He is home now, we are monitoring his temp and making sure he gets plenty of rest to recover from the ERCP, but I wanted to post this as a warning to anybody out there who may be getting a needle biopsy to confirm cancer... I am just so grateful for the doctor who shared this information with me and my family so we could make an INFORMED decision before completely dashing our chances for surgery.

8

(21 replies, posted in Introductions!)

The problem is that since May, I feel like we've been in limbo this whole time. After the first ERCP in June, the gastro specialist was the first to mention the word cholangiocarcinoma, but I don 't think we've gotten an "official" diagnosis yet.  Everybody is treating this as cancer, but we have yet to meet with an oncologist. The surgeon ordered another ERCP to confirm it is an adenocarcinoma, so I'm wondering if after they get the results of the biopsy, they will tell us it is cancer.

As Jim said, time is not our friend, and I feel like everything is taking soooo long.

9

(21 replies, posted in Introductions!)

Thank you everyone for the kind words and support. Cathy, thank you so much for sharing your story with me. I have to say, I was brought to tears reading that article on you, and I am so happy that you were able to see your daughter graduate from college!

My dad's stomach seems to be feeling better already, and he was able to eat dinner tonight without any problems.  As for physical activity, it is more a matter of my dad wanting to be physically active.  Before he became ill, he was exercising every night on his stationary bicycle, and has said that it would be therapeutic for him.

Here is my question about getting a second opinion: My parents are on Blue Cross Blue Shield HMO insurance, and it was difficult even getting a referral to this U of C surgeon. If I were to get a second opinion, would the insurance make it hard for me? For example, if I were to try and contact Dr. Chapman in St. Louis, or Cyberknife Chicago, would we be forced to pay out-of-pocket and get reimbursed?

I am trying to do all of this stuff for my mom and dad so they don't have to worry about it, but it sometimes gets overwhelming and I don't know where to start. Like Jim said, time is not my friend, and I don't want insurance issues to get in the way of helping my dad get well.

10

(21 replies, posted in Introductions!)

One more question for those of you out there reading this:

My dad has been on sick leave from work since his first ERCP in early June. Any thoughts on going back to work or just going on long term disability? Part of me thinks that work might take his mind off of things, as he is currently at home all day long with nothing to do but think about all of this. But another part of me knows how stressful work is for him and how much he dislikes going to work in general.

Also, I was thinking that maybe exercise would be good for him... Maybe getting up and walking around the track a few times in the morning... Might rejuvenate him and give him more energy.

How has CC affected your work life, if you are still working with CC? Does anybody recommend light to moderate exercise? I'm just concerned that it would add to his already sudden weight loss...

Thanks in advance for your input!

Charlene

11

(21 replies, posted in Introductions!)

Thanks, Lainy.

Although this was  my first post, I have been frequenting your site for a few weeks now. I just want to say thank you for making this website available, and to all the many people who have shared their experiences with all of us out there.

We continue to pray and thank you for your words of support!

On my way to the grocery store to pick up some Carnation Instant Breakfast now...

smile

12

(21 replies, posted in Introductions!)

Hello everyone. My dad has been consulting with his PCP, a gastro specialist, and now an oncology surgeon for the past month. He presented with jaundice on May 19, 2011, and has had an ERCP, MRCP, and CT scan. The surgeon at University of Chicago has not yet had an opportunity to present my dad's case to the tumor board, but is saying that this tumor is likely unresectable.

As you can imagine, we are devastated by this news, but I am trying to keep in high spirits so my dad does not get defeated by this disease.

As of right now, the surgeon is ordering another ERCP to get a biopsy to confirm that this is cancer, but everybody is treating it as CC. My dad is 59, with diabetes, but is otherwise quite strong. This morning he had abdominal pains and does not want to eat today, but I told him that he has to! Once they can confirm what type of tumor it is, they can put together some treatment options for him.

Right now, I'm wondering if anybody has had any success recently with Cyberknife? The tumor has invaded his portal vein and is about 4.5 cm.

What should I expect? How is this cancer going to affect my dad? Now that surgery has been ruled out, my biggest concern is making sure that my dad does not have too much pain as he fights this. AND WE WILL FIGHT IT.

I have an 18-month-old son at home, and he lights up whenever he sees his grandfather. I truly believe that my dad was born to be Carter's grandfather, and I just can't imagine that he won't be around to see him grow up...

Thanks for letting me share,

Charlene