November 16, 2016 at 2:17 am #82331
Thank you so much for your response. I’m adding it to my notebook of information.November 4, 2016 at 6:35 pm #82332jpmskiParticipant
You need to widen your search. You don’t need to ‘go’ anywhere to find a surgeon, at least preliminary, you need to get them the information they need to make a determination.
Even if you drove 2,000 miles to meet with the best surgeon in the world, they’re still going to say ‘Let me review everything’.
Have your package put together and start sending it anywhere that will take it. You can fly somewhere just do the surgery and then come back to your home base for other treatment options.
That’s what we did. We live in Denver and the surgeons at University Hospital here said “This is totally inoperable, and I’m a 100% right. Ask anyone.” (That is almost literally what he said, what a total dick). I found a doctor at Univ Southern Cal in LA, Dr. Prahrek. Once I got them all the info the needed, which took a while, they immediately came back and said “Yeah, we can totally get that out. I don’t know what your Denver doctor’s issues are.”
Once you have the ‘curtain pulled back’ on the medical community you see that it’s all about confidence, experience, and honesty about those two things.
JoeNovember 4, 2016 at 3:00 pm #82333
Thank you Marion!November 2, 2016 at 10:32 pm #82321marionsModerator
Dr. Kim, Moffitt, Florida is on our medical advisory board:
And, as mentioned, Emory, Atlanta, evaluates and treats many cholangiocarcinoma patients as well.
MarionNovember 2, 2016 at 3:25 pm #82324
Thank you so much! I will look up information on both of these locations. THANNNNK YOU!!November 2, 2016 at 4:46 am #82322lainyMember
Hi Keshia, since you are in Georgia and Dad is in Florida I would highly recommend the Moffitt Cancer Center. I googled them and they actually list CC as a Cancer they treat. We also have had others go there and they liked it and had good results. They are located in Tamps, FL. Best of luck.November 2, 2016 at 1:29 am #82323googilyMember
How about Mayo Jax? Maybe the location helps split the difference between your Fla. and Ga. locations?November 1, 2016 at 11:59 pm #82325
I would like to start by saying THANK YOU SO MUCH to everyone who has took time out of their day to provide suggestions thoughts and guidance! I am making notes from each reply given so that I can talk with my Dad.
He currently lives in Florida and I am in Georgia. He is still waiting to get an appointment from the VA who is referring him to an oncologist. I just feel like they are dragging their feet. Most of the comments I read stressed time is of the essence, but it doesn’t appear that way. I am so frustrated!!
Can anyone give me suggestions for Doctors or places I can go to try and get help in Florida and Georgia? Maybe to have someone else review his case. I need help, so any advice I am open to. Thank you so much to everyone again!October 28, 2016 at 9:04 pm #82326mvprattMember
Good afternoon Kay!
I have read your post and the great answers from others. I too want to agree with what they had to say and explain some of the importance.
1. It is not normal that pathology reports come back inconclusive ….. it is something that can happen and with rare cancers much more frequently. Often it is because the medical provider did not get an appropriate amount of tissue to do the needed testing. I was surprised in your story that the doc was able to get a good and appropriate amount of tissue due to the blockage in the duct.
2. It still sounds like a surgeon is needed ASAP. Something is blocking the bile duct and it appears there is no confirmatory diagnosis. It might be wise to try and find a center that has a great hepatabilliary team… I see Marion has suggested Emory… You definitely need a diagnosis before anyone will be able to treat you..
3. It also sounds like you are in need of updated scans…whether it is an ultrasound, ct, or PET someone should be looking to make sure there are no other areas that could possible be related to the bile duct blockage.
4. Make sure appropriate blood work is being done so that you can know the exact state of his liver and biliary system. It will also be helpful in regards to possible markers, and his overall health. Ask for copies so you can have them for any other appointments or questions.
5.Keep your dads nutrition up and make sure pain is being managed. If he has any underlying conditions such as diabetes or high blood pressure make sure he is in good control. This will help with the doctors talk about what kind of treatment and the risks for it … especially surgery. Those folks in overall good health appear to do better in surgery and recovery.
6. This cancer does not act in one single way…. some of us have had the privilege of time as our cancers are slower growing but there are others that move very very quickly… Time is of the essence. Don’t take no for answers and if docs are needed too much time to give you guys a proposed treatment plan than jump ship and find another. I was very fortunate to have a fantastic surgical team that had me on the table within a month of my diagnosis.
7. Make sure you have someone that can support you. You will need someone to hold you up as you help your dad on his journey. Taking care of yourself is vital to this process….
I am not sure if any of this helps.
Michelle PrattOctober 26, 2016 at 1:12 pm #82327helpformom2016Member
I agree with Joe – time is important. Not to make you fearful which Im sure you already are but because there is just so much we dont know and so many variables that differ from person to person.
Mom found her mass early June- asymptomatic. It wasnt until August 1 as part of her liver transplant evaluation that a biopsy was approved. (Previously had 3 sets of images, confused whether it was ICC Or Hepatocellular carcinoma- and didnt want to biopsy a cirrhotic liver with HepC)
Liver Transplant team needed to be sure. Pathology came back ICC- 2 days later PET scan showed 3 spots on thoracic spine and base of skull. (6 weeks prior to PET her Bone MRI showed no lesions)
So some of these are fast acting others are slow. This cancer doesnt come with a bullet list of predictions like other common cancers. There are also various treatment options with surgery being the most successful and sought after. For many however it is non-resectable.October 26, 2016 at 6:40 am #82328marionsModerator
kay….I agree with helpformom and Joe….your Dad needs to be evaluated by a center treating a high volume of cholangiocarcinoma patients. In this case, you would want the pathology slide to be looked at as well. Being that you are in Georgia, Emory would be a good place to start.
MarionOctober 25, 2016 at 11:37 pm #82329jpmskiParticipant
Yes, the come back as inconclusive, or even negative in my mom’s case. If it was me, know what I know, this is what I would do:
1) If the bilirubin is high it needs to come down or else you will lose treatment options. I would take the path of least resistance. You dad has already had a tough go with ERCP’s, and they never worked for my mom as far as stent placements go. They were 100% failure, and she had many of them.
Talk to them about having an external drain, or two, put in. It will allow the liver to drain externally into a bag. You will need in IR doctor for that. They’re not easy procedures but that not as tough as ERCPs, at least from the witnessing standpoint.
It will get the bilirubin down which is want you want. The risk is, if you screw around too much in this phase you (they) may create other problems. In my mother’s case, they nicked something and created internal bleeding, which created a two week hospital stay. And essentially wasted time and her energy.
2) At the same time, if the cancer hasn’t spread, your sole focus is to find a surgeon who will take it out. You may have to look all over. Start putting together your medical records to send out. You need everything. Copies of the CT scans are #1. And then you need to be in constant contact with everyone you send it to.
If one says they can’t do it, you say “next”. From my ignorant POV, surgery is all about confidence and if a surgeon doesn’t have the confidence or experience, he or she is not going to tell you that. They’re just going to say it can’t be done. I have seen two different surgeons come to complete opposite conclusions, with the same information, and they both were 100% confident.
Time is not your friend. And the medical community sucks up time like a dry sponge to water.
JoeOctober 25, 2016 at 8:49 pm #82330helpformom2016Member
I am sorry to hear about your dad. I know the time prior to diagnosis and before any treatment plan is established is a bit like whiplash. Ive been there.
How does his blood work look? What are some symptoms?
I dont know what facility you are going to but a multi-disciplinary team is definitely a must.
Usually made up of a surgeon, oncologist, radiologist and liver specialist. They review cases and decide the best course of action.
An oncologist with experience with this cancer should be at the top of your check list.
Do you have an appointment scheduled yet?October 24, 2016 at 8:48 pm #9976
My name is Kay! I am trying to be proactive in finding out as much as I can along with the correct questions to ask the doctor due to my Dad’s recent dx. I am so happy to have found this site, but not happy I had to. So here is my Dad’s story thus far:
In 2015 after a CT SCAN and Ultrasound came back with something noticeable on the bile duct, he was then scheduled for at ERCP. The ERCP came back blocked. The Dr. could not get through.
_ No follow up_
In 2016 during routine physical, it was noticed that no follow up came from the 2015 report, so a new ERCP was ordered and the Dr. still could not get through the bile duct, so my Dad was referred out where one stint was placed for drainage, which was removed 2 weeks later. The doctor tried to get back in the bile duct but could not, but was able to get some tissue for biopsy. He was told the same day that preliminary report show it was cancer. Bile Duct Cancer.
The pathology report came back inconclusive that it was cancer. My dad has now been referred to a oncologist. We are waiting to hear back for date and time.
I read here that it is normal for pathology reports to come back inconclusive. I would just like to gain as much knowledge as I can. PLEASE the hard, honest and difficult truths that are out there. Please give it to me straight. I NEED ANSWERS……NEXT STEPS…..QUESTIONS I CAN ASK…. Thank you so much in advance, and I look forward to many responses. Thank you.
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