Topic: New to the Boards

Hello all,

My father-in-law was diagnosed with a Klatskin tumor the end of December 2011.  He spent several days in the hospital with Pancreatitis (a complication of the ERCP), then developed Cholangitis because of the stent placed during the ERCP.  His liver resection was January 11, 2012.  It was a success!  The surgeon removed his gallbladder, the common bile duct, and the right lobe of his liver.  He found clear margins on both sides where the tumor was located.

His recovery was slow.  He went home with a JP drain, his appetite was poor, and he lost 24 pounds.  Just as we made headway in one area, something else would crop up.  His surgeon finally recommended he eat 3,000 calories a day because his blood work showed malnutrition.  It was very hard for him to eat much for months.  8 weeks after surgery, his incision reopened.  It took another 2 months for that to close completely.  In that time, he has slowly gained back about half of the weight that he'd lost. 

We are just now starting appointments with the oncologist.  The surgeon told us they wouldn't be able to do anything for him in the shape he was in right after surgery, so we just focused on his recovery. 

We just received the results of his first post-surgery PET scan.  Now he has an inoperable tumor on the top of his liver (between the liver and the diaphram), and a strand on the right side of his liver that the oncologist cannot identify.  The tumor on the top of his liver is almost certainly cancer, because of the density.  We are scheduled for a needle biopsy on Monday.

My husband and I are in shock.  We're trying to get our heads around this new information.  We just had so much hope that it was out of his system and gone.

I mainly wanted to say "Hello" and offer to help with advice for caregivers who are looking for tips on helping a loved one recover from a liver resection.  I found the discussion boards helpful when I was learning about cholangiocarcinoma, and came back every time we had a new hurdle during his recovery.  I just imagine I'll be relying more heavily on them, and you all, with this new development.

Thank you

2 (edited by jathy1125 Wed, 11 Jul 2012 17:13:06)

Re: New to the Boards

Misty-Welcome and sorry you had to find us. I am a CC survivor, 3 years cancer free because of a transplant. I have an amazing story to share and over come some unbelievable obstacles to be here, so there is HOPE. Please read my story on my FB page (Catherine Sims Dunnagan).
My first concern is that they are doing a needle biopsy, that is a big no with our cancer, they should be doing a brushing. I would make sure that they weren't just using a general term. The best thing you can do for your father-in-law is make sure you have a knowledgable doctor, our cancer is so rare that it is very important. Since you are in Texas, MDAnderson has a great reputation for treating CC.
Come back  often and ask any thing, because no one has as much knowledge and life expierence as this CC family.
Lots of prayers-Cathy

3 (edited by PCL1029 Wed, 11 Jul 2012 17:23:06)

Re: New to the Boards

Hi,
pet scan is not absolutely 100% reliable ,you can have false positive result.
CAT scan to follow PET to determine whether there are actual" tumor foci" is very helpful in exclusion of the false positive by PET. Especially the SUVmax ( the brightness of the PET) is not that high.(ie: 4-7).
This is my personal experience and I am a patient of this canner for 3years.
Also  2nd opinion on radiation oncology is highly recommended if there are no mets beyond the liver before choosing chemotherapy.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New to the Boards

Dear Misty, welcome to our remarkable family but sorry you had to find us. Your F.I.L. has really been on our roller coaster ride. That is unbelievable that he went through what he did. I agree with what PCL and Cathy said and am wondering where your F.I.L. is being treated. We are big believers in 2nd and 3rd opinions. I so hope things turn around for him and please do keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to the Boards

He's being treated at Medical City, Dallas. 

I'm not sure about the 'brushing' versus another type of biopsy.  I do remember the liver specialist mentioning a brushing during the ERCP, but that was when the tumor was in the bile duct.  I suspect this biopsy is to determine if this new tumor is the same type of cancer, because the oncologist says it is not where they would expect to see a hot spot connected with cholangiocarcinoma.  I appreciate the information, though, and will definitely ask the questions before the procedure.

It is also good to hear that PET scans can be wrong.  I am a complete novice at these types of tests.  I've never been a caregiver for someone with cancer before this, so I'm in a heavy learning curve.  The SUVmax on this tumor is 11.2, so the oncologist is pretty certain it is a carcinoma of some kind. 

Second (and third) opinions are something we need to discuss with my father-in-law again.

Re: New to the Boards

Hi Misty,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what your father in law has been through, he sure has been through so much and I know how much he will appreciate the care that he has gotten from  his family. I was my dads carer during his fight with CC so I can so relate to what you are going through.

I know you say that this is a heavy learning curve and you are right, it is. Us carers know what you are going through and please know that we are all here for you as well. I'm glad that you have joined in with us all here as you will get a ton of support and help from everyone. And please, if you have any questions at all then ask away and we'll do what we can to help in answering them. Please let us know how everything goes and I hope that you can indeed manage to get further opinions for your father in law.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New to the Boards

Hi Misty,

I'm very sorry to hear about this setback with your father-in-law. A successful, margin-negative resection is considered the first choice "cure" with this cancer, so I'm sure this news is especially difficult to accept after an apparently successful surgery. With this cancer, though, most of us have had to deal with these sorts of setbacks, so we understand and will continue to keep you in our thoughts and prayers.

I will say I am here at this moment because of a second opinion. I was told that I was not a candidate for surgery, but another medical center disagreed. I will also say that as a patient I was too tired and sick to care about seeking a second opinion, but my family was tenacious in getting one, and it saved my life. As others have mentioned, MD Anderson has a great reputation for treating cc.

All the best to you as you go through this challenging process.

Mark

Re: New to the Boards

Pops' biopsy was today.  The procedure today was complicated by his previous liver resection.  Normally a needle biopsy is done through the abdomen, but now part of his colon is taking up the space where the right lobe of his liver was, so they had to go in through the lower part of his chest to get to the hot spot between his liver and diaphragm.  There was a risk of piercing part of the lung, but it went well.

No complications so far!  *Knock wood*  We should have the results in 2-3 days. 

I also had the opportunity to discuss second opinions with him.  He's agreeable to the idea, so it's something we'll follow up with as soon as possible.

Re: New to the Boards

Misty....Great news. In spite of the possible complications, your Pop's biopsy went well.  Now, fingers are crossed for a good biopsy result.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New to the Boards

My FIL had a followup appointment for the results of his biopsy today.  The pathology shows no malignancy, but the radiologist told us that usually is the case with CC before he did the biopsy.  A CT Scan will be scheduled in a couple of weeks, and we visit the oncologist in 3 weeks.  He says we are going to watch it for changes and growth.

Pops asked if there are any treatment centers that focus their study on CC.  The doctor told him there aren't because it's just too rare.  Then we asked about a referral for a second opinion.  The oncologist got very defensive and said that we are looking at this the wrong way.  He said the treatment for CC is pretty standard no matter where you go, and that we should be focused on whether or not Pops is able to handle a treatment with all that he has going on internally (his white cell count and platelets are low).  We have asked 3 doctors about those numbers being low, his MD, the liver specialist, and the oncologist.  None have given us answers as to why they are low and what they indicate.  His answer on the referral was essentially, "No.".

I was infuriated!  Fortunately, Pops had the same reaction I did to this doctor's attitude.  He is contacting his MD to get a referral for a second opinion.  Several of you mentioned MD Anderson, and I know they have a lot of information about CC on their web site.  Have any of you been treated there?

Re: New to the Boards

Misty....Several of our members are being treated at MD Anderson; hopefully they will share the names of their physician.  But that is where you should go.  I strongly believe in second (or more opinions) and I know that you are doing the right thing by obtaining such.  Don't let this bad experience stop you - there are some wonderful doctors eager to consult with you.   
Stay strong.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New to the Boards

GOOD WORK, Misty and POPS! There is not a doctor anywhere who should deny a second opinion especially for a rare Cancer, I am livid right with you and believe me red is not my best color~!  MD Anderson Houston is great, one of the best. We also have a new Banner MD Anderson here in Phoenix. I just signed up there myself and my new ONC came over from the MDA in Houston. Not sure where you live, but if it's closer to the East Coast Mayo, Rochester MN is good or NY Presbyterian or SLoan Kettering. I do know more member will chime in on this. I am wishing for a quick 2nd opinion for you. No one wants to even start with a Doctor who sounds like he is giing up! Be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to the Boards

AH HA! I just saw Irvine TX, PERFECT for MDA HOuston....Dr.. Javle.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to the Boards

My mom sees Dr. Javle at MD Anderson in Houston. He's kind, compassionate and very knowledgeable  and we've never felt like we are being rushed.

Re: New to the Boards

Hi,
If possible, get  an opinion by the radiation oncologist to see anything else is available to him when you are at MDA.
good luck and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New to the Boards

Well, Misty and Pops, I think infuriation is a perfectly natural response in this situation! I'm stunned by what your oncologist said.  I think it shows your treatment options there were going to be limited, and confirms that you are making a good decision in seeking  other opinions. You're staying in my thoughts and prayers.

Mark