August 18, 2016 at 10:04 am #93022herculesModerator
Brian and Barbara, sorry to hear you are dealing with an uncertain diagnosis, on a positive note, early stage diagnosis is difficult, but also is curable. Your cancer is not so advanced that it is obvious, consider yourself fortunate, Be vigilant and seek answers. I wish you the best possible outcome, you are a prime candidate, remain positive, PatAugust 18, 2016 at 5:22 am #93021aussiejanParticipant
Hello Brian and Barbara
I have just read your post and although no expert I would just like to say having been through this awful journey with my mum that you have to go to the knowledgable experts whatever it takes. This journey can take hold so fast and you think your doctors are advising and doing the right things but YOU cannot wait while they learn about CC . The people on this site really do have the best advice available , go find a CC specialist if that is the route you are on even if it feels wrong to second guess your doctors.
Hopefully you get answers from the meeting.
Thinking of both of you as you wait.
JanAugust 18, 2016 at 2:57 am #93020marionsModerator
Perfect.August 18, 2016 at 2:12 am #93019brianbarbaradoyleParticipant
The team at Moffitt is bringing Barb’s case to the tumor board at 7 AM tomorrow (Thursday) to evaluate the CT, PET, MRCP, pathology and bloodwork. We are looking forward to their thoughts and I will be sure to share them.
Thanks for speaking into this and sharing your counsel.August 17, 2016 at 10:51 pm #93016marionsModerator
Brian and Barb…..I agree with all that’s said. This is a case for a multidisciplinary team consisting of a surgical oncologist, radiologist, pathologist and gastroenterologist from a cancer center treating a high volume of Cholangiocarcinoma patients. Being that you are located in Florida you may want to reach out to: Mayo Clinic, Min., John Hopkins, Sloan Kettering, MD Anderson.
MarionAugust 17, 2016 at 10:01 pm #93015googilyMember
My husband’s path was very similar–it was only when the liver team at Hopkins met to discuss his case that they all decided that it’s intrahepatic CC, after CT scan, MRI, blood work, and biopsy in and of themselves weren’t conclusive.
I’m so sorry you are traveling this path, but you’ve found the right place for people who understand and will help you along.August 17, 2016 at 8:51 pm #93014helpformom2016Member
Im so sorry you are having to go through this. This is not a place anyone wants to welcome another to, but this place is a Godsend. To me anyway. Ive learned so much here, which has helped calm my fears and give me answers between appointments.
My mother, just *confirmed* diagnosed earlier this month after having had multiple scans June-July (MRIs and CT) and they werent 100% sure if it was Intrahepatic Cholangio or Hepatocellular Carcinoma. The process for us has been very long unfortunately.
Initial discovery was a liver mass showing on CT checking for appendicitis after some prolonged mild abdominal pain at the beginning of June.
She presented no real symptoms and all of her blood work, including tumor markers were within normal range. Ultrasound guided needle biopsy confirmed the diagnosis.
Im no expert and only have what I have read and experienced thus far but Im here, if I can be of any help.
Bless you both.
MegAugust 17, 2016 at 4:39 pm #93017lainyParticipant
Dear Brian & Barb, Welcome to our remarkable family but hope you may not need us. In case you do need us this is the best place to be for CC. You are doing all the right things but know that sometimes it is a difficult diagnosis to confirm. We have had quite a few members at Moffitt and getting other opinions is so important, like I said all the right things.
Where does all this sit right now, like what are they suggesting? The only suggestion at this point in time would be to see Dr. Javle at MD Anderson in Houston. He is one of the tops in the CC field.
The not knowing and the waiting is quite burdensome. Please keep us updated on Barb. Below is a site you may find helpful just in case……August 17, 2016 at 3:54 pm #93018debnorcalModerator
Hello Brian and Barb and welcome to our knowledgeable and caring family. I’m sorry that you have reason to find us, but so glad you did, as this is a wonderful place for information and support.
This group of diseases (IHCC, HCC, EHCC) is notoriously difficult to definitely diagnose with current medical testing. Also, most medical centers in the U.S. are unfamiliar with CC and not equipped to treat it effectively. Probably the first thing our members will advise is that it is imperative that Barb be evaluated by a center with expertise in this disease. Good for you for reaching out to Mayo – they have quite a bit of experience with this. We have a list of medical centers that are considered experts posted under the “newly diagnosed” section of this forum, should you wish to obtain second opinions.
As a new patient/caregiver, this is typically overwhelming. Often, this journey includes a long ride with many ups and downs. Most of us find the best approach is to disregard statistics you will read about and stay positive, taking each issue step by step and making the best, most informed decision you can at that time.
I wish you all the best. Please post any questions that you may have, as we have so many experienced members that are happy to share experiences and advice.
DebbieAugust 17, 2016 at 3:23 pm #12695brianbarbaradoyleParticipant
Hi All, I appreciate reading these posts. We are brand new to this adventure.
My wife, Barb, is 53 and looks to be in good/great health but was just diagnosed with likely having Intrahepatic cholangiocarcinoma. I say ‘likely’ because the markers are not clear. We are in FL and have been to Florida Hospital, Moffitt Cancer Center, phone and fax with Mayo as well as local oncologist. We have had CT, PET and MRCP as well as bloodwork and biopsy with pathology. It just is not clear though they are leaning toward IHC
Have others had this experience?
Thanks for your help!
Brian and Barb
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