Topic: Sort of diagnosed?!?

Hello, my husband is 54 and in general good health.  He was diagnosed as diabetic almost 4 years ago.  Last week he had his routine bloodwork done and it showed elevated bilirubin levels.  This was the 10th of September.  On the 12th he had an ultrasound and we were told it was a gallstone.  He had more bloodwork done on the 13th.  On Friday the 14th he was admitted to the hospital for a CT Scan.  They also ordered a MRI.  We were told there was an "obstruction" in the hepatic duct.  He had an ERCP on Monday and they inserted a stent.  After the procedure the Dr told me there was a tumor and his gall bladder was "a mess".  I started to cry and he told me "not to worry until I tell you to worry" and to pray that it was not in his pancreas.  He also told me not to tell my husband or anyone in the family until we were able to see a specialist in Cleveland.  There was no need to worry anyone until we knew what we were dealing with.  So I didn't.  My husband had terrible nausea after the ERCP and slept and threw up for the past two days.  On Tuesday I was able to talk to another Dr from the Gastrionoligist office who informed me there was a large mass in the tail and middle section of his pancreas plus the tumor in his common hepatic duct.  His CA 19-9 number was 3720.   He used the term Klatskin's tumors and wrote down Cholangio Carcinoma for me.  My husband came home today and has been sleeping well, his jaundice is all but gone and he is not as nauseated.  The Dr that did the ERCP came in before discharge and told us that my husband has an "obstruction" that could be anything from calcium to cholestrol and that he was sending us to Cleveland University Hospital to have a scope ultrasound and he is confident that this doctor will be able to help us.  He was so calm and upbeat I almost forgot what the other doctor had already told me.   I have been searching the internet for any information I can find and came upon this wonderful forum.  I would welcome ANY information.

Re: Sort of diagnosed?!?

Randyswife....welcome to our site.  I agree with the later.  Until all information has been compiled and evaluated, I would think that you may be jumping ahead of yourself.  Our Peter once said:  "don't put the horse before the barn."
You would not want to worry yourself over something that may or may not be the case. 
Therefore, please keep us posted. I am thrilled to hear that you husband is feeling much better and my fingers are crossed and crossed for the best possible news heading your way.
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: Sort of diagnosed?!?

Thank you... I believe I will take your advice.  We are going to Cleveland sometime next week, I'll let you know.

Re: Sort of diagnosed?!?

Dear Randyswife, welcome to our remarkable family. I so agree to take each step  at a time until all tests have been had and doctors seen. I am so glad your husband is feeling better and will keep everything crossed for the news that you want to hear. Please keep us posted as we truly care. Safe travel and tons of good luck on the Cleveland trip.

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: Sort of diagnosed?!?

Hello,
I am a patient at the Cleveland Clinic and have been very happy with my specialists. I have also heard wonderful things about the Seidman Cancer Center at University. Please feel free to contact me if you want to talk. 330-903-6868.
Lisa Craine

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: Sort of diagnosed?!?

We are being set up to see Dr Christopher Siegel at Cleveland University Hospital.  I have read and heard nothing but good things about him.   I'm doing my best to put on a happy face until we can see him and find out what exactly is wrong.  The doctor that showed me his file and procedure reports was confident of the diagnosis he gave me.  I wish I knew I was doing the right thing in not telling anyone but I honestly haven't been given any conclusive formal  information yet and I think the question of when to tell anyone should be my husbands call.... My husbands parents are in their 80's and live close by, we have 3 children, Bryan - 29 years old married and lives close by, Amanda - 25 who just moved to Columbus about 3 1/2 hours away, and Mark - 24 who lives in New York City.  Thank you for listening, I feel so alone in all of this right now.  But even writing this information down makes it too real.

Re: Sort of diagnosed?!?

Lisa, Thank you.

Re: Sort of diagnosed?!?

Randy's wife, we learn very quickly here that there is no right or wrong, and that we learn to listen to our gut. I always say I feel like I graduated from GUT 101. With that said, I swear to you, that once you see Dr. Siegel, and a game plan is in place your fright will turn to fight. Believe it or not,  one of the hardest parts is what you are going through now. The waiting is the worst.
From the onset, for my husband, we told everyone everything as we found that talking about it let it all out and we talked and talked. It was cathartic for us as is writing on this Board. There were no surprises for anyone. But, that is what worked for us. We were out of town visiting family in Milwaukee, and that is when the CC hit the fan. Our 2 week trip turned into almost 3 months!  You are NOT alone in this as we are all right here with you and please feel free to vent whenever you feel the need.  You never know how strong you are until "strong" is the only choice you have!

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: Sort of diagnosed?!?

Hi Randyswife,

I wanted to welcome you to this site, one Ohioan to another! My daughter, Lauren is the one with CC. We are in Uniontown, Ohio near Canton. I know we have some cancer centers in Ohio, but we choose to go to University of Michigan Hospital for Lauren's treatment. I would be happy to answer any questions you may have and I write a blog you may be interested in. We met our dear friend, Lisa through this site and meet for lunch every so often. I am hoping for a good outcome for your husband and hope to hear from you again. All the best.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Sort of diagnosed?!?

Hi Randyswife,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what Randy is going through as well. But I'm glad that you have joined us all as I know that you will get tons of support and help here from everyone. There is not much that I can add to what the others have said to you already, but I wanted to welcome you here too.

Yes the waiting game, grrrr... That is something that we all hate but have all gone through in one way or another. Whether it is waiting for scan results, waiting for treatment, waiting to see an Onc or specialist. It is a pain but know that we all know what you are feeling and going through right now. And like Lainy says, you will feel better once a game plan is sorted and then the fight back will commence.

From what you say, it sounds like your husbands stent is starting to work if the jaundice is clearing up and I am very glad to hear you say that he is feeling better as well. We are all here for you so please let us know how everything goes, you are not alone.

Best wishes to you and your husband,

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: Sort of diagnosed?!?

Dear Randyswife.
My mom was diagnosed last year. We live in the Cleveland area and we chose to be treated at the Cleveland Clinic Foundation.  We've been with the Clinic for many years and received nothing but the best care from great physicians. If you have any questions, please e mail me.

Anna

Re: Sort of diagnosed?!?

It has now been 5 days since Randy's scope.  When we went into the hospital my husband walked in with no pain and some sign of jaundice.  On Monday they did the brushing and endiscope, after which he started vomiting profusely.  They kept him on antinausea medicine every two hours which kept him pretty much out of it until Wednesday.  He was given an IV saline solution on Wednesday (the first and only) and sent home Wednesday evening.  Since then he has been on no medication except for his usual insulin and high cholesterol medicine.  I can't get him to eat anything.  He is drinking alot of water and I've managed to get two ensure in him yesterday which caused him alot of chest pain.  Hot liquids also do the same.  He hasn't been throwing up at all but he hic ups alot and has alot of gas pain.  He has been sleeping most of the time.  The doctor said that the vomiting was a rare side effect of the procedure and he would be back to "normal" in a few days.  I don't know what to do for him now.  I tried smoothies, ensure, applesauce, rice, broth, toast, cereal.  He ate about 1 cup of cheerios yesterday.  I'm going to get him soy milk, since I've heard that dairy products aren't good.  I can only get him to drink small amounts and I'm looking for any ideas.  What is causing all the nausea and is this to be expected?  He has to have the ERCP in Cleveland and I was wondering if this will start it all over again?  This man has never been sick a day in his life.  I don't know what to do for him now.

Re: Sort of diagnosed?!?

His urine is still dark and the yellow is still in his eyes.  He had a stent put in Monday... how long will it take to clear up?

14 (edited by Lainy Fri, 21 Sep 2012 09:24:44)

Re: Sort of diagnosed?!?

Dear Randyswife, I will take a stab at this. Teddy never had the nausea from the ERCP. After his Whipple he had hiccups for 4 months constantly and noone could figure out what to do. We finally met a Pharmacist who recommended Brioske (sp) which you can get at CVS or Walgreens and comes in a blue bottle. It looks like ground up alka seltzer. He took 2 doses in an hour and never had hiccups again! We also have people on here who have had great success swallowing a spoonful of sugar. Diabetes I know but its a one time deal. The hiccups are bad becasue they drain your energy as well as being frustrating!
There are some people on here who have said they cannot do Ensure. We used Carnation Instant Breakfast and he loved the Vanilla and I would blend in a banana. This can take the place of a full meal and 3 X a day if necessary. Has all the needed nutrients. Instead of full meals let him graze all day long. I made comforts foods like home made chicken soup, lightly oiled pasta, scrambled eggs, jello etc. NO dairy at all. Soy milk made him sick. I actually used skim milk and it seemed to work. 
Sounds like he might need something like Prilosec to help settle the stomach and chest pain down.
Most important if it continues call the Doctor. I totally understand how you feel, Teddy never had a sick day in his life.

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: Sort of diagnosed?!?

Randyswife-I have had 10 ERCP's and had nasuea until they did the procedure while getting an IV of zofran, made a difference. I could not do ensure or boost caused a lot of vomitting. I had a feeding tube for months and that made a difference. I also always had a bowl of dry cheeerios by my side.
Lots of prayers and HOPE-Cathy

Re: Sort of diagnosed?!?

Randyswife, I knew I forgot something! Teddy had Jaundiced, I used to tell him I didn't like him in yellow! The itching stopped days after the stents but the yellow, it's like a dye, takes a little longer to wear out.

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: Sort of diagnosed?!?

Randyswife- with stent the bilirubin will slowly keep coming down and yellowness will also fade out slowly. I believe once obstruction clears out, hiccups will also go away. My brother went through all this in March.

-Jyoti

Re: Sort of diagnosed?!?

Randyswife....I would call the doctor's office before the end of day (if you have not seen an improvement in your husbands condition.)
Please keep us posted.
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: Sort of diagnosed?!?

Thank you for the advice... I feel so much better knowing you all are out there.  I'm so sorry that you are (or have) gone through this too.  This SUCKS!  Randy is feeling alittle better.  I got Almond milk and he ate some cheerios.  He also had one of the Ensure fruit punch and it didn't seem to upset his stomach at all.  I did call the Dr. and he assured me this is all normal and his appetite will improve.  I just couldn't figure out why he was so "healthy" when we went into the hospital and after this procedure all hell broke lose?  The Dr told us before the procedure that his throat would be sore afterwards.... we have encountered alot more than that.
I bought some Papaya extract and Ginger root after seeing it on one of the posts here and he took it without any question.... usually he fights me on any vitamins or supplements I try to force on him - lol.

Re: Sort of diagnosed?!?

Sandy....great news.  Things are moving in the right direction. 
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: Sort of diagnosed?!?

Thanks for the update on Randy and I am very glad to hear that he is doing better right now. Fingers are crossed that his improvement continues and that you don't have to fight him on anything supplement wise!

My best to you and Randy,

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: Sort of diagnosed?!?

Hello everyone.... we are still awaiting an appointment with the Dr in Cleveland.  We went today and got the xrays and reports from the hospital Randy was in last week.  The report notes:
The gallbladder is contracted and filled with sludge and contrast. 
Pancreas:  There is a regular mass seen in the body and tail of the pancreas.  The mass causing occlusion of the splenic vein and encasement of the splenic artery.  Significant splenorenal collaterals is noted. Mass in the tail of the pancreas measures 6 x 3 cm in diameter.
The term Klatskin Tumor of the hepatic duct was used.  There was also a cyst noted on his kidney.
Anyone want to give me an idea of what this all means?

Re: Sort of diagnosed?!?

Also, there is a 11mm length area of a severe narrowing or constriction of the distal common hepatic duct just proximal to the insertion of the cystic duct. Proximal to this area of severe near-complete stenosis the common hepatic duct measures about 5 mm.  The common bile duct distal to the area of the stenosis measures about 2 mm.

There are several lymph nodes seen in the periportal/peripancreatic/celiac axis area.  This most likely will represent metastatic adenopathy.

I copied this word for word from the report.  I have no idea what it all means and I really need to know.  Please if anyone could help me even alittle it would mean so much.

Thank you,
Vicky

Re: Sort of diagnosed?!?

Vicky, I can't help on the above but I know someone can tell you something but it's late for many so hang on hang in we are here with you. When I was starting this journey with Teddy 6 years ago this Board was just starting and I didn't want to wait either so I cheated! I Googled each phrase until I put it all together. sure wish these reports came with English translation!

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: Sort of diagnosed?!?

Hi,
First I am just a patient of this cancer for 39 month and I am no doctor.

Based on the last 2 messages that you wrote. the first thought that go thru my head is to let your doctor telling you about the condition of your husband at time of your next appointment; listening to what he said about the prognosis and you should ask  specific questions to get the best pictures of your husband's  current disease situation.Below is a web site about asking questions ;please pay special attention to the staging,treatment,clinical trials and support sections. Ask questions about your husband's PROGNOSIS  is very helpful for you to prepare  the future for you and your husband of this cancer.
http://www.cancer.net/all-about-cancer/ … ask-doctor

Since I understand your deep concern and want to know before the appointment;here I will provide some of my thoughts which may be completely wrong and different than your doctor. so just regard this info. as part of the educational process for this cancer.

1. the gallbladder has no bile in it ,that means it is not functioning normally;the sludge is like the precurser of the formation of gallstone but now this is not an important issue as compare to the cancer.

2."Pancreas:  There is a regular mass seen in the body and tail of the pancreas.  The mass causing occlusion of the splenic vein and encasement of the splenic artery.  Significant splenorenal collaterals is noted."  this is the part I will pay more attention to it. It indicated that in the lower part of the right side of the common bile duct( the total length is about 6-8CM long) that closed to the intestine, there is a mass or lesion or tumor (6x3cm) in size, growing in the body and tail part of the pancreas.In short, this mass is located near the bottom of the common bile duct; and that mass pressured the splenic vein(the blood vessel carries blood back to to liver and to the heart and lungs for re-oxygenation )and thus affecting the returning of the blood to the heart.
The other part '" encasement of the splenic artery." is of  more concern (the blood vessel supplies the oxygen rich  blood back to pancreas,liver and stomach). This artery is encased or surrounded or invaded or blocked  by the same mass or lesion or tumor and that may take away the option for surgery.

3."Also, there is a 11mm length area of a severe narrowing or constriction of the distal common hepatic duct just proximal to the insertion of the cystic duct. Proximal to this area of severe near-complete stenosis the common hepatic duct measures about 5 mm.  The common bile duct distal to the area of the stenosis measures about 2 mm." from this message, it described
another area of lesion  or tumor (the 11mm long narrowing lesion) just the near to the entry of the cystic duct(the duct where the gallbladder connected to the common bile duct) . this narrowing of the duct is  mostly likely blocking the flow of the bile(the digestive juice) from the liver to the intestine
and therefore cause jaundice and itching. BTW, the diameter of the common bile duct is about 5-6mm, and the left and right hepatic ducts are around 3mm wide. therefore from your message description, the report emphasizes ,quoted"this area of severe near-complete stenosis"-- this almost means a complete blockage.

If you consider the left and right hepatic duct and the common bile duct together is an oak tree( shape like a letter Y); that means there is a tumor(11mm narrowing lesion) on the upper middle part of the trunk and there is a 6x3cm mass at the bottom right of the trunk. see below link for physiology and anatomy if you are interested.

http://en.wikipedia.org/wiki/Common_hepatic_duct

As a patient, I sincerely hope everything will go as smoothly as possible in your way.And I hope the Grace of our Lord, will extend His hand, as He had done to me ,to your husband.
Keep in touch 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.