• From: Millersburg,Mi/USA
  • Registered: Thu, 05 Jul 2012
  • Posts: 31

Topic: Hello new to the site, looking for answers

My husband was diagnosised with CC 2 1/2 years ago. He went through surgery where they resected part of his liver, removed gallbladder, and took his small intestine and hooked up to his liver. He did fine for the 2 1/2 years then started experiencing tiredness, weakness amd jaundice. They did ct scan 2 months ago and said that he had restriction in the bilary ducts. We were sent back to the U of M Hospital where we were told that it was scar tissue. They placed a drainage tube and started stretching to get the blockage open. Now last week they rechecked his tumor marker and it went way up so they repeated a ct scan and said that he has a small liesion of his liver and several lumph nodes are enalrged. Now later this week he has to have a byopsy done on his liver because they believe it has come back.
We were told that chemo would be his only option and it was to just help him live longer. It just seems like there should be something else they should do. He is only 45 and we have 2 kids. I feel lost. All I do is cry.  Just don't know what to do. I have looked every where on the internet if there are any other options.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Hello new to the site, looking for answers

Dear Shel, welcome to our remarkable family but sorry you had to join us. We are big believers in 2nd and 3rd opinions and I am wondering if you have thought about that? It will also give you some comfort that you have covered all the bases. Did the ONC give you a prognosis like what will be if your husband chooses not to do chemo vs doing chemo? Believe me I know how you are feeling, like you have been hit with a bat in the pit of your stomach. I promise though that once you have a game plan in place the fright will turn to fight. You have come to the right place and please keep us informed as to how things are going. Hang in and I am sending prayers your way and lots of positive thoughts.

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.
  • From: Millersburg,Mi/USA
  • Registered: Thu, 05 Jul 2012
  • Posts: 31

Re: Hello new to the site, looking for answers

Thank you Lainy and Liz. We are meeting with his Onc on Thursday and am hoping that the Onc will have more answers for us once the byopsy results are in. I will keep you posted.
Liz prayers are with you and your husband. Good luck with his appointment later today.

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,733

Re: Hello new to the site, looking for answers

Hi,
I am a patient just like your husband for the last 3 years. I had recurrence about a year ago. It really hurts and I totally understand your helpless feeling, your frustration  don't know what to do and depression of why it is happening.
As a patient, the only thing I know how to handle this is to learn about this disease more and in the darkest moment ,I just kneel down and pray to God for guidance.
For you at this point, I think we can less your burden by helping you in the medical knowledge  of this cancer by doing exactly what  you did, asking medical questions and emotional support from all of our members, patients as well as caregivers who had traveled this roller coaster ride before.

For your husband, get a PET scan prescription from your oncologist today or tomorrow before the biopsy to see whether the lymph nodes are metastasis .
the PET scan will also show how advance  of  the  liver recurrence.

But the main point is this, I do not know exactly where your husband's tumor located;it sounds like (ie: from your description it is more located in the bile ducts (the upper third of the bile duct which closely attached to the liver,) So if the biopsy is by using ERCP  brushing procedure, it may be ok but if it is by fine needle biopsy(that is insert a needle to extract specimen from the liver thru the skin),then it may increase the chance of spreading the tumor cells(about 10% chance) which may not be a good idea.

The other thing is that if the PET scan is negative on the lymph nodes;then you will have more options that just systemic chemotherapy. my suggestion is trying to see whether more options can be available to you;but even if not there are still a lot of information that can help your husband in the future.
So if you want to, the steps are as follows:
1. Get a PET scan to check the lymph node .
2. To have the PET scan BEFORE the biopsy unless the procedure they use is ERCP.
3. Relax and hoping for the best.
4. If you like ,you can send the" impression" section of the CAT scan result to me by email  thru this message board and I will see what I can do for you.

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.
  • Registered: Fri, 15 Oct 2010
  • Posts: 1,733

Re: Hello new to the site, looking for answers

Hi, Liz,
Good luck to your husband.
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.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,825

Re: Hello new to the site, looking for answers

Hi Shel,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your husband. But I'm glad that you've joined in with us all here as you have come to the right place for support and help, and you will get tons of both from everyone here.

Thanks for sharing your husbands story here with us all. Have you looked into getting a second or third opinion like Lainys suggested to you? If so, what were you told from these opinions? Just in case you don't know, we have a list of major treatment centres in the US and here is a link that may be of use to you -

http://www.cholangiocarcinoma.org/major … enters.htm

The members here have also created this thread which lists a lot of the centres and doctors in the US that have treated the members here or their loved ones, it may also be of use to you -

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

My apologies if you have already sen these threads, but I thought that they may be of use and interest to you. I hear you when you say that you are lost, we can relate to that. But please do not give up hope. And also know that we are all here for you, so please, keep coming back here.

Best wishes,

Gavin

  • From: Millersburg,Mi/USA
  • Registered: Thu, 05 Jul 2012
  • Posts: 31

Re: Hello new to the site, looking for answers

PCl1029 Thank you for the info.  My husband is unable to have an ERCP due to the surgery he had in 2009. They resected quit abit of his liver and took out the bile duct that hooks to liver and used his small intestine to route back to his liver. We were told with the way he is rerouted there is no way he would have a scope go down through his throat to see into the ducts.

We went to University of Michigan Comprehensive Cancer Center, to have his surgery in 2009. He has also been going there because he developed scar tissue from the surgery that blocked the drainage from the liver so they put in a drainage tube and started doing a ballooning procedure so they can stretch it out so he can get the tube out and the liver will be able to drain on its own again. We were told that they are finding more people that have had these liver surgeries are having scarring issues.

The liver surgeon from the U of M had a scan done a little over a week ago and called us last week saying that he needed a biopsy done and that it could be done up here where he sees his ONC and also he told us there was nothing else he could do for my husband. He said the lesion was about 1.5 cm and there was a few lymph nodes swollen.  He never really told us where this lesion is located on the liver. I don't know if he knows more than he was letting on or what. Would hope he would be straight forward.

I am glad I have found this site. It's nice to beable to talk with other people who know what wer are going through.

It all just gets very overwhelming.

Thanl You,
Shel

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,733

Re: Hello new to the site, looking for answers

Hi,
Then said, has your husband  been seen by an interventional radiologist for possible radiation treatment options?
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.
  • Registered: Fri, 02 Dec 2011
  • Posts: 80

Re: Hello new to the site, looking for answers

Shel;

I am thinking and praying for you and your family.

  • From: Sea ranch, cA. Austin, Tx
  • Registered: Thu, 23 Aug 2012
  • Posts: 1

Re: Hello new to the site, looking for answers

My husband was diagnosed in February with stage four.  The chemo is a two hour drive each way once every two weeks.  He has done well but it is so difficult to tolerate the drive and deal with only 8-5 medical clinic where we live, we are moving to Austin Texas next week.

To complicate matter, my husband has degenerative spine disease that seems to be progressing very rapidly.

  • From: Henderson, Nevada, USA
  • Registered: Mon, 11 Jun 2012
  • Posts: 28

Re: Hello new to the site, looking for answers

Shel,

My father (65 and healthy) is also seen at U of M.  He was diagnosed in May 2012 and receives chemo every two weeks.  As of now his cancer is reacting to the chemo (yesterday was his 6th session).  We were told at his last appointment that he can't be on chemo forever.  After hearing that statement my siblings and I are getting a plan in place for him to be seen at another (bigger) facility where specialists available to work with us.  Please use the lists Gavin has shared.  They hold important information. 

I understand it's overwhelming and frustrating.  I'm still mad.  It doesn't make sense and is very unfair.  Please know that this is a great place to share, release and gain info.  Take care of yourself and keep your head up!

:-)
Suzy