Confused

Originally I thought I had a sudden and very severe case of reflux. Then I got itching and jaundice and ended up in ER. They thought it was gallstones/gallbladder and did a MRCP and CT. On Jan 21, they did an endoscopty (sp?)  to  remove what they thought was a gallstone with plans to remove my gallbladder a couple of days later. They discovered that my bile duct was blocked and put a stent in. That doctor told me that odds were it was cancer and sent me to an oncologist.

When I met with the oncologist, the blood tests for indicators had not come back in yet and he told me it could just be scar tissue or completely curable cancer and sent me on to a surgeon. I met with the surgeon this past week. He said that, if it is where the other doctors (from the hosipital) siad it was, he was just going to take out the bile duct, gallbladder, lymph nodes and re-route my intestine. But he said if it was up against an organ or involved the blood vessel going to my liver, then there would it would be more invloved (he mentioned a roux de Y).

I had a second CT done on Thursday with a higher contrast done so the surgeon could get a better idea. I got a call from the hospital yesterday about coming in for pre-op. One of the things she mentioned was the possibilty of a Whipple (I'm assuming mentioning it was standard procedure to make sure they have all bases covered, just in case).

Needless to say I am getting a bit nervous and confused as this seems to be possible getting more involved as time goes on. I know they never know the full extent of things until they actually get in there, but shouldn't there have been some sort of indication via blood tests or when they went in with the endescope?

The stent has me pretty back to normal - jaundice and itching are completely gone and I have not had any other symtoms. Surgery is scheduled for this coming Friday. This is happened so fast that I haven't had time to fully digest it all and my head has just now stopped spinning enough to start saying "wait a minute, this doesn't make sense".

 

I understand your confusion in this whirlwind.  Just the idea that you appear to be a surgical candidate is a good thing.  However, you have every right to expect to understand what the planned surgery is all about, while you accept that things don't always go as planned.  Also, while you do need to move very quickly, you also need to take a deep breathe and ask yourself if you have the right surgeon for the procedure.  It is tough to find the right balance between understanding your options and being aggressive and quick.

Best wishes to you.  Please let us know you how proceed.

Thanks. My surgeon used to work at MD Anderson which is a good thing. He moved back to Austin because there was a lack of cancer surgeons in the area. My oncologist said that he is the only surgeon in the area that he world recommend and that this guy knows his stuff. My other option was to go to MD Anderson but I didn't want to make the commute and, at the time, really did not understand the full extent of what was going on as everybody else seemed to have downplayed this.

I was very comfortable with him when I met hm last week and he was very open and specific as to what he would be looking for/doing. My problem was that I walked into something that I was not expecting and so did not know what to ask at the time. 

 

 

On 2/16/2008 TexasMiom wrote:

Originally I thought I had a sudden and very severe case of reflux. Then I got itching and jaundice and ended up in ER. They thought it was gallstones/gallbladder and did a MRCP and CT. On Jan 21, they did an endoscopty (sp?)  to  remove what they thought was a gallstone with plans to remove my gallbladder a couple of days later. They discovered that my bile duct was blocked and put a stent in. That doctor told me that odds were it was cancer and sent me to an oncologist.

When I met with the oncologist, the blood tests for indicators had not come back in yet and he told me it could just be scar tissue or completely curable cancer and sent me on to a surgeon. I met with the surgeon this past week. He said that, if it is where the other doctors (from the hosipital) siad it was, he was just going to take out the bile duct, gallbladder, lymph nodes and re-route my intestine. But he said if it was up against an organ or involved the blood vessel going to my liver, then there would it would be more invloved (he mentioned a roux de Y).

I had a second CT done on Thursday with a higher contrast done so the surgeon could get a better idea. I got a call from the hospital yesterday about coming in for pre-op. One of the things she mentioned was the possibilty of a Whipple (I'm assuming mentioning it was standard procedure to make sure they have all bases covered, just in case).

Needless to say I am getting a bit nervous and confused as this seems to be possible getting more involved as time goes on. I know they never know the full extent of things until they actually get in there, but shouldn't there have been some sort of indication via blood tests or when they went in with the endescope?

The stent has me pretty back to normal - jaundice and itching are completely gone and I have not had any other symtoms. Surgery is scheduled for this coming Friday. This is happened so fast that I haven't had time to fully digest it all and my head has just now stopped spinning enough to start saying "wait a minute, this doesn't make sense".

 

Hello,

My name is Iris and I live in the Netherlands. I am very sorry to hear your story. Though I can understand how confused you must be, be happy that doctors act quickly. The fact that the jaundice calmed down as well as the itching does not mean problems are over. The stent takes care that your bile fluids can flow, but there is a problem underneath. The sooner they find out what's the matter, the more chance you have that something can be done.

I wish you all the strength that you need and will be thinking of you. Please keep your progress posted.

Love, Iris.

The Whipple operation is extremely complex and I hope that you did a bit of internet research besides for what the surgeon told you. Make sure that he did more than a few of them before he tries it on you :).

Also, realize that until they actually open you up, they don't really know what's going on inside. That is what happened to my sister. They thought that her bile ducts were operable and that she was only in stage I or II. It ended up that they couldn't surgically do anything for her.

 

  My heart goes out to you!  I have gone down that same road as you!  All my pre-op tests showed hope.  Even that the biopsy was pre-cancerous!  I had the best doctor in this field.  When they opened me up April 4, 2007, their eyes told them that it truly was cancer & it had spread to my liver & pancreas.  Now almost a year later, I am still here.  But, I have stopped chemo treatments (14 days on & 7 days off for 9 months straight).  I have recently had another bile duct stent infection (5 in one year's time).  It is not any easy road for me or my family.  There is no cure for bile duct cancer.  Follow your heart & make peace with your loved ones & with God.  Not everyone has the knowledge of their impending death.  Some people walk out their door in the morning & never get a chance to say goodbye to those they love or to make peace with them.

 

On 2/16/2008 TexasMiom wrote:

Originally I thought I had a sudden and very severe case of reflux. Then I got itching and jaundice and ended up in ER. They thought it was gallstones/gallbladder and did a MRCP and CT. On Jan 21, they did an endoscopty (sp?)  to  remove what they thought was a gallstone with plans to remove my gallbladder a couple of days later. They discovered that my bile duct was blocked and put a stent in. That doctor told me that odds were it was cancer and sent me to an oncologist.

When I met with the oncologist, the blood tests for indicators had not come back in yet and he told me it could just be scar tissue or completely curable cancer and sent me on to a surgeon. I met with the surgeon this past week. He said that, if it is where the other doctors (from the hosipital) siad it was, he was just going to take out the bile duct, gallbladder, lymph nodes and re-route my intestine. But he said if it was up against an organ or involved the blood vessel going to my liver, then there would it would be more invloved (he mentioned a roux de Y).

I had a second CT done on Thursday with a higher contrast done so the surgeon could get a better idea. I got a call from the hospital yesterday about coming in for pre-op. One of the things she mentioned was the possibilty of a Whipple (I'm assuming mentioning it was standard procedure to make sure they have all bases covered, just in case).

Needless to say I am getting a bit nervous and confused as this seems to be possible getting more involved as time goes on. I know they never know the full extent of things until they actually get in there, but shouldn't there have been some sort of indication via blood tests or when they went in with the endescope?

The stent has me pretty back to normal - jaundice and itching are completely gone and I have not had any other symtoms. Surgery is scheduled for this coming Friday. This is happened so fast that I haven't had time to fully digest it all and my head has just now stopped spinning enough to start saying "wait a minute, this doesn't make sense".

 

Sorry to hear of your recent discovery, the best to you.

Tulsa Oklahoma has a Cancer Center of America with expert oncologists in treating this type of cancer, as well as Mayo Clinic, Johns Hopkins, MD Anderson, Dana Farber,Boston, etc.

Mayo was my choice and they have appts within 2 weeks, to review and recommend the best possible options, especially if surgery is an option for you, and it sounds like it is.

I would highly recommend that you check with an oncologist at one of the best centers who perform large numbers of the Whipple Surgery, as this is a delicate and extensive operation. The right steps are important and you will be personally evaluated by a team of professionals and experts in the field to determine best treatment options specifically for you.

I know it gets confusing with so many voices, but I am sure you will be better informed if you take the time to make sure that the drs in your area are on the right track. This is a deadly disease and finding the best measures to treat it is the key to survival.

Just my opinion.....

Blessings to you in your quest and surgery.

My sister's voice

eaglessoar