Topic: Can't get a "diagnosis"

Hi everyone,
I have been scanning this site for a week or two and finally requested to join and got approved.  It was very interesting to me to see Danielle113's post as it is VERY similar to mine.  My situation is that my dad had a fall in Nov. and they did a body scan to see if he had any internal bleeding or to try and figure out why he fell (he has a history of heart disease and stroke).  Luckily he was fine from the fall but they found this "area" that they thought was a mass.  They did an MRCP, an EUS and an ERCP.  All the tests show a dialation of the bile duct but no test is conclusive for cancer.  The doctors say that they show "abnormal cells", "suspicious cells" "cells that appear to be cancer or malignent" but they won't label him as HAVING cancer.  In the meantime, although he was perfectly fine before the fall, he now has bleeding which they can't find the source of and has required two transfusions, nauseau and vomiting, weight loss and fatigue.  We are now going to Jefferson Hospital in PA for a SpyCam.  I've done enough research to know that if this is CC, then his chances are not good since surgery/transplant are probably not an option for him due to his numerous other health issues, but what I am most upset about is not being able to get a diagnosis!  Is this normal?  Is there something else I should be pursuing?  Is this Y-90 treatment showing any impact?  Thank you all in advance for your help and information.

Re: Can't get a "diagnosis"

Hi Comescrap,

Glad you have joined us but sorry you have reason to.  I understand your  frustration.  I can tell you that this type of cancer does seem to be very hard to find and get a definitive diagnosis.  Can't help you much as far as info for the Y-90, but I know others who will be along soon do know more about it.  I'm hoping after the SpyCam you will have some answers.  Stick with us and let us know how things are going.  You will get a lot of help and support from this site and all the caring people on it.

Wishing for the best results for you dad.  Take care.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Can't get a "diagnosis"

Hi sorry too that there is no definite diagnosis and imagine how frustrating that would be.  I will try to chime in a little about the y90 from what I have learned from my doctors.  But I am sure others will come along as well with probably better more informative info.  I was told that y90 is a decent treatment for those who cannot have surgery.  I have heard that "normally" there is an impact but tends to be a somewhat small impact.  That being said  it is considered mostly palliative in possibly showing some shrinkage and decreasing some cc symptoms and prolonging life.  Though, I have also been told that in some cases depending on the original size/placement of the tumor at the time of treatment that it could be possible to shrink enough and surgeons might look into re evaluating.  Initially for me I was on chemo and was told my next step was going to be the y90 and at the time two oncolcogists confirmed that that was going to be a good option for me.  As I have quickly learned this cancer can take a quick turn in any direction.  What might work for some might not for others and vice versa.  Everyone is so different and there is just no set in stone avenue.  Good luck on your journey and please keep us posted.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Can't get a "diagnosis"

Hi,
It is not uncommon to have " unknown primary " for a diagnosis, may be around 10% of the cases.
The link below is a simple road map if you like to check it out.

http://www.cholangiocarcinoma.org/punbb … 006#p81006

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: Can't get a "diagnosis"

Thanks for all your kind words and information.  so what i hear you saying is that it is not uncommon to not have a  diagnosis  My only concern is that prolongs any treatment that he could be getting.  i am curious what you mean by the disease could turn at any moment.

Re: Can't get a "diagnosis"

Hi,
Please refer to specific person (ie: pfox2100 or PCL1029) with specific question next time.
It is not uncommon in the sense that it is around 10% or so, but more important is that , please check out the link I suggested  to start your research  first.
Most people ,including me, state our opinions or our self experience only and by no means is  a guide for treatment or what you have to do, the ultimate responsibility is the patients and their caregivers.
Be discern on your received answers from the web.

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: Can't get a "diagnosis"

Hi, sorry I guess I didn't intend to mean the disease necessarily.  Along my journey and through this site I have learned that a lot of changes and turns along the road can occur regarding everything (the cancer, treatments, how we tolerate treatments, what might not be an option now could be later, and vice versa.).  Does that make sense?  First and foremost keep on looking for answers, do as much research as possible, this site is one of my favorites for information and support.  I hope you guys find a diagnosis soon so they know what they need to treat and get it started.  Best wishes and keep us posted.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Can't get a "diagnosis"

Yes, Porter, makes perfect sense.

Willow

Re: Can't get a "diagnosis"

Comescrap,
So sorry you Dad is going through multiple health issues. CC is not easy to diagnose and you're right, treatment can't be recommended by a dr without a diagnosis. Breathe deeply and ask the DR what the next step us in getting a diagnosis.  Took a while for my sis (and 2 biopsies) and still they don't know if its CC or a mixed type of CC with hepatocellular carcinoma. Time it takes to have tests and results seemed frustratingly slow in the beginning of this journey but it gets easier once you know what you're dealing with and what the plan is. Also, many on this site get multiple opinions from GI oncology docs and GI surgeons. Best to you and your Dad.

Willow

Re: Can't get a "diagnosis"

Thank you Willow.  My dad is on Medicare and I have to look into who will accept it.  He is also 76 with a bad heart.  I am starting to think that doctors aren’t going to do much even if we do get a diagnosis.