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Hi , and welcome to the board. I just wanted to let you know that I had lots of blood work, CT scans, and MRI. I did have 2 biopsys done. The first one came back normal and reported no malignancy (or so they said at the time but also informed me that they wanted to do a second biopsy). I was diagnosed with ICC after the second biopsy and I have heard that there is concern for seeding to occur with the biopsies but for me, at that point that concern and risk outweighed needing to get a definite diagnosis. They were puzzled for quite some time and although hearing that I had ICC was one of the hardests things I have ever had to sit through, I finally had a definite diagnosis. And shortly after I was able to start treatment and my journey to fight this fight head on. Always, whatever you decide is your choice and everyone here will support you no matter what. That being said I would def. encourage you to have the second biopsy done. And yes, please keep us updated. Good luck!
Dear FNTN WELCOME to our elite club that no one hopes to have to join. I can only say if it was me (it was my husband) I would listen to the ONCs because they can’t treat something they have not proven! I don’t see as you have a choice. The sooner you get on a treatment regime the sooner your fright turns to fight!
As you can see already this is the best place to be if the DX turns out to be CC. Please keep us updated as we truly care.HI There,
Also hoping you will have no reason to be here, but am welcoming you and hoping that you will stay if you need to as the help, knowledge and support is phenomenal. I too am not an expert but have learned a lot from my experiences. As I was reading your post my first thought was apprehension about the second needle biopsy for just the reasons you have already mentioned. That said, as Kris mentioned, you do want to find out quickly what is going on and what you are dealing with. Unfortunately from all I have learned, ICC is very hard to diagnose. It sounds like you were referred to the right team to get the help and information you need. Sorry I can’t be of more help and am hoping others will be on soon that can give you more insight. Please let us know how things are going and know that you will get as much knowledge and support from everyone here as we can possibly give.
Darla
Hi,
I am not a doctor but from talking to my dad’s doctors on the issues you raised, here are some thoughts for you and questions for your doctors.
1) Pathology result of tissue is the most reliable indicator of what a tumor is (benign or malignant, and type of malignancy). While some diagnostic radiologists can tell what a tumor is from looking at scans (CT/MRI/PET CT etc.), even they will say it usually is not with 100% certainty until confirmed by pathology work. Having said that, since you already have multiple scans, and a MRCP coming up, you could get copies of those scans and ask for second opinoions from multiple radiologists, especially ones familiar with liver tumors, to see what they say. You would want to know if the tumor is i) benign vs. malignant, and ii) if malignant, with how much certainty is it cholangiocarcinoma or hepatucellluar, or something else.
2) Seeding is a concern in biopsy, but multiple doctors have told me that the likelihood of it is very small. You’d want as experienced a doctor to do it as possible so getting it done at a major hospital is worth it and likely decreases the chance of seeding happening. The percentages quoted on the internet are averages that don’t take into account the quality of care of different institutions so the numbers can be misleading.
And as a personal anecdote, my dad’s tumor was ~5cm when it was diagnosed and his surgeon at UCLA (Dr. Busuttil) recommended resection right away without a pre-operative biopsy. I don’t know if that is conventional or not, but the diagnostic radiologist felt strongly the tumor wasn’t benign so from the surgeon’s perspective, given the size, it made sense to remove it sooner rather than later, and biopsy with pathology results afterwards, which indicated it was intrahepatic cholangiocarcinoma.
Hope this helps.
Hi. First off, welcome to the family. Maybe. Hopefully you won’t be joining us on this journey. Maybe there is something else going on that is hopefully much easier to “fix”. (My humor is sometimes a little off)
I wish I could be more help. As long as you are in the care of cc specialists, you are going in the right direction. I, too, would not like a 2nd biopsy, but in your case, I would much rather know what I am dealing with and pray for good results.
Please let us know how things go. While we are mostly not members of the medical field, I feel many have a degree through experience. We are all here to try to help and support each other to the best of our abilities.Hello to all.
I have a 5 cm tumor in my right liver lobe. The MRI results indicate that it’s ICC and several doctors have all come to the same conclusion.
A percutaneous needle biopsy was performed by doctor number two but no cancer was found in the samples. He referred me to a hepatologist who looked at the data and he immediately referred me to a liver and pancreatic cancer team. They looked at the data and now want to do their own biopsy asap.
I’m hoping the experience and knowledge on this board will give me some extra insight into this problematic diagnosis.
(1) Are there any other non-invasive procedures that can confirm or reject the icc diagnosis? I’ve had a CT and two MRI’s. A MRCP is in the works shortly.
(2) Should I not do a second needle biopsy? I’m worried about the seeding issue of course. The team is hesitant about doing it but feel it’s the only option left to confirm the diagnosis. They also feel that the original biopsy wasn’t done in the way they would have liked.
My blood serum levels are all normal except for a continuous, isolated elevation of ALP …. around 180 or so. My RBC count has been running low but I haven’t read that this is consistent symptom for ICC.
Thanks for any help!
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