new and need advice
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Beth…….the blood test is one of several diagnostic tools in providing a more accurate diagnoses. Hang in there. We are here for you.
MarionBeth,
I was 32 when diagnosed. When we were running the initial tests and scans,I asked the surgeon, is it definately cancer? His replay was there are things that masquerade as CC, but it is very rare. He was right in my case.Hang in there. Read about different therapies. There are several people here who were told no surgery, but after chemo and other treatments, surgery became possible.
Hold on to your strength and hope and love. You never know what is around the corner, and sometimes it is a good suprise.
Kris
Dear Beth, welcome to our world, wish you didn’t have to visit. Indeed this is extremely scary and even though you read and get upset, it is so important to be informed so that you can become your husband’s best advocate and will know what questions to ask. Soon, the scary will turn into fight and that is a good thing. Ask us all the questions you can think of and we will be happy to respond. Remember, there are always more doctors and we highly recommend more opinions if you feel not enough is being done. Above all, HOPE & ATTITUDE is the best RX. Please keep us updated.
Thanks for all the fast response and helpful advise.
Just to answer some questions…..they have done blood tests but i have no idea what the results really say…we are in cincinnati ohio and he will be treated at unversity hospital here by a Dr we were told is very experianced in this field.
I am anxious to hear more advise from all of you.
Thanks again!Beth,
I too want to welcome you and assure you that you are in good hands. You will find the most loving, caring & knowledgable people here to help and support you in any way we can. We all know & understand what you are going through.
I am thinking of you and hoping for the best results for your husband.
Love & Hugs,
DarlaHi Beth,
Sorry to hear your news..we were all right there in your shoes at one point and understand what you are feeling.
The biopsy is usually done through a procedure called an ERCP or PTC
( external drain) . They take brushings of the tissue. Beware that these brushings are only 25% effective in detecting cancer. If they add genetic testing to it ( takes days) then the effectivenes is only 45%. Another indicator is the CA 19-9 tumor marker, which is done by a blood test. They should also test the IGG4 through the blood because there is a small chance that the tumor may be benign and treatable with prednisone. We learned all of this through my mom’s experience at the Mayo clinic, where we went for a 2nd opinion. Our first doctor did not test for 1GG4 (my mom had CC anyway) and never told us the brushings were not very effective. The best advice I can give it is make sure you are in the hands of experienced doctors. CC is very rare.
Additionally, they would not biopsy the obstruction ( tumor) itself in fear it may spread if it is CC. As a result you can be diagnosed without having a positive biopsy but rather a combination or factors that point to CC ( ie: high CA 19-9, visible tumor, PSC disease, etc). There are surgical procedures that may be available or even transplant – all usually depend upon location, size and spread of the tumor. Recently website members started collecting data on which hospitals are more experienced with CC. If you don’t find the locations quickly, reply back to the group and tell us where you are and I am sure someone will provide you with a recommendation of where to go in your area. Good thoughts are being sent your way.
AshleyHello Beth and welcome! It’s very freightening to sit and wait for results- that’s for sure. It is good that a panel of specialists are working together. It’s always a good idea to get second or third opinions when it comes to cc – and it’s not to early to start lining those appointments up. Per your question, certainly, anything could be possible, and you are right to look for hope, because nothing is written in stone. The catheter (if it’s a bili cath to divert the bile) should bring your husband some relief from the itching, and a lemon use to help settle the metallic taste for my Dad, before meals- so that he could enjoy food better.
I’m sure you’ll receive lots of responses, and help at this site- it’s a wonderful community that knows what you’re going through. Wishing you and your husband the best.
Tess
Hi Beth, The blockage could definitely cause some of those symptons. If something is preventing the bile from flowing, it will back up into the liver and cause jaundice and color changes to the stool and urine.
They must do a biopsy to know for sure if it is cancer.
Why are they waiting so long to do the biopsy, it shouldn’t take that long to schedule that…i would really question the Doctor about that.
What section of the bile duct is the tumor…is in inside the liver or outside the liver?
There are many, many smart people on this site and I’m sure will chime in shortly.
What hospital is he in? This cancer is so rare, you want to be sure you have a doctor experienced with this cancer. Many doctors have never seen a patient with it and you don’t want to be their first.
LuluI am new to this so bare with me.
My husband was diagnosed yesterday with CC. It started with problems like light colored stool and dark urine and jaundice. The itching and metallic smell have been present as well. He has had no pain and has felt fine,and has just recently started to get more tired. He has always been healthy and is only 33.
The Dr that he saw said that the tumor that they found (via CT) is near the main artery and surgery may not be an option. He is meeting with a panel of specialists tomorrow the work out the best option. They will be putting in a catheter and do a biopsy early next week.
I have tried to research as much as I can on the internet but it has only sent me into panic mode.
I am wondering if it is possible that this diagnosis may be a bit premature…could the obstruction be benign? They have not completed a biopsy yet. maybe I am just looking for a bit of hope. What I have read leads me to believe that they proceed as is it is CC until proven otherwise. Could the symptoms be linked to the blockage only?
Any advice for a scared wife?
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