July 11, 2013 at 1:26 am #73303
Thanks everyone, so the spyglass came back as “atypical”, but no decisive diagnosis. So tomorrow I’m at Mayo for a needle biopsy. I really wanted to avoid this because of the possibility of spilling cells. But I can’t start treatment without an affirmative diagnosis. Anyway, any advice is appreciated. Marion, thanks for the link, the mayo clinic is where a I am right now, but the links you posted didn’t work for some reason.July 10, 2013 at 11:54 am #73304bonnie5Participant
I am 49 years old and the hardest part for me initially was all the waiting. the best test as far as I am concerned is a PET Scan it can see everything that is cancerous from what I know. I am inoperable but just knowing what you are dealing with is much easier than the unknown.July 10, 2013 at 4:23 am #73298
Denise, enclosed are a few links
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=465464550 and this on Mayo – Jacksonville
MarionJuly 10, 2013 at 3:14 am #73297
Has anyone ever been to cancer treatment center of America? We keep seeing commercials on tv about it. They will fly us up there to Atlanta, the closest one to us. I think I have read on the forum that there is a Moffit in Tampa? Thanks for all the help.July 10, 2013 at 12:26 am #73296lainyParticipant
Denise, ditto what Marion said. We are huge believers in 2nd and 3rd opinions. The most important thing is to have an ONC and a Hospital that has treated more than a few CC patients. I am hoping that a member or 2 will pop up here ti advise you of some ONCs in your area.July 9, 2013 at 11:49 pm #73295
Denise…..as things still are inconclusive I would search out one or two additional physicians “very” familiar with this cancer. There are a few doctors willing to look at the scans and supporting notes without a personal appointment.
MarionJuly 9, 2013 at 11:15 pm #73294
Thanks for all the advise. Things have moved along a little bit although still no diagnosis. The brush biopsy came back negative so the Doctor ordered the spyglass, I had that done yesterday, no results yet but in the meantime had a MRI at Mayo. We met with the surgeon today to go over the MRI results. There is a 4 by 4.7 tumor way up high on the ducts. It is hugging the portal vein but not invading it. If it is cancer the course of action would be to do chemo and radiation to shrink it before they can operate. The doctor said it is inoperable at this time because he can’t get clear margins due to the tumor hugging the portal vein. I hate living in limbo, although I saw the MRI there is a tumor there, what else would it be? So here are my questions of all you great folks, should we look for another opinion….in doing so it prolongs starting treatment. If it is not cancer, what is it????July 6, 2013 at 7:00 am #73293lisacraineParticipant
Welcome to this wonderful group of caring people. I was diagnosed almost three years ago with ICC, I have had two liver resections. If you would like to talk please feel free to call me at 330-903-6868.
Lisa CraineJuly 5, 2013 at 5:15 pm #73292
Denise…I would like to echo everything said so far and especially focus on the fact that your diagnoses came at a very early stage. The majority of patients receive late stage diagnoses and much of our postings reflect comments based on that. But please try to focus on the fact that you are eligible for a resection and that your cancer appears to be confined to the blockage only. All is very good news indeed. Hang in there, Denise; you have a fantastic prognoses. Good luck with your upcoming appointment. Tons of support is heading your way.
MarionJuly 5, 2013 at 1:49 pm #73291gavinModerator
Welcome to the site. Sorry that you had to find us all here but glad that you’ve joined us as you’re in the best place for support and help and you can expect loads of each from all of us here. Not much that I can add really to what the others have said but I wanted to join in with them in welcoming you here.
That is great to hear that your CC is resectable and I hope that you get more good news from your meeting at Mayo on the 9th. Please keep in touch with us and let us know how that goes. My dads CC also came out of nowhere as he too was reasonably healthy with no apparant risks etc. First symptom he had was jaundice and itching for a few weeks then into hospital for all of the testing then we got the news of his CC and it being inoperable.
I know that you are in shock and scared right now. We were too on hearing my dads diagnosis and that is very normal. But I know that you will start feeling better about this soon once you start fighting back. As I said, I am glad that you have joined us here as you will get so much support so please keep coming back here. We are all here for you and we care.
GavinJuly 5, 2013 at 12:51 am #73290EliParticipant
Welcome to the forum but sorry that you had to find us.
My wife got diagnosed with extrahepatic CC two years ago, a few short days after she turned 44. Same age as you.
Like you, she had CT, MRI, ERCP with stent placement, and a brushing biopsy. The biopsy came back suspicious for cancer but inconclusive. This is very common. The brushings collect a very small amount of tissue. The pathologists have a hard time confirming or ruling out cancer based on the tiny sample they have to work with.
If all other evidence points to CC, the surgeons may recommend surgery in the absence of a positive biopsy. That’s what happened to us. We gave consent to Whipple surgery even though cancer diagnosis wasn’t 100% certain. CC was confirmed by the full pathology report *after* the surgery.
If your biopsy ends up negative or inconclusive, ask your doctor’s opinion about the following two options:
1. SpyGlass biopsy. It’s an endoscopic procedure similar to ERCP. SpyGlass biopsy uses forceps, so it’s able to collect a larger tissue sample.
The downside of SpyGlass: a negative result cannot rule out cancer.
2. Endoscopic Ultrasound (EUS). Again, it’s an endoscopic procedure similar to ERCP. My wife had EUS done after her biopsy turned up inconclusive. EUS sealed the deal for us. We gave consent to Whipple the day after EUS. My understanding is that EUS is not a very common test. If you end up doing it, try to find a very experienced doctor. That way you can feel more confident about the results.
Welcome again. Please keep us posted.
EliJuly 4, 2013 at 5:49 pm #73289willowParticipant
You are not alone. We are here for you as you navigate unknown territory. Being a nurse can help since you have a good medical knowledge base but can also be scary. You are one of the “lucky” (yeah, right, if having CC can be considered “lucky”) who caught it early and qualifies for resection. Never thought Id be happy for someone to have liver surgery but I happy for you to have that opportunity. On another topic, we are noticing a trend of increasing incidence of CC (Intrahepatic mainly ) and in younger people. I’m determined to find out why by supporting research into this mystery.
Hang in there and know it will get easier once you’re into treatment.
WillowJuly 4, 2013 at 3:08 pm #73288claremParticipant
Welcome to the forum. I’m sorry that you have been diagnosed but as Lainy said, you have come to the best place. The advice is credible and the support is phenomenal.
I to am a nurse and again as Lainy said, there is no way you could have seen this coming. Until my sister was diagnosed, I had no inclination that she was ill – neither did she. Knowledge is most definitely power and there is so much knowledge here that will help you get empowered. Now that you have had the scans and investigations, your doctor can piece it all together and get the best plan of attack in place so that together you can both fight it head on.July 4, 2013 at 2:45 pm #73287lainyParticipant
Dear Denise, Welcome to the best little club in the world that no one wants to join. Scared is the word and that is normal, like getting hit in the stomach with a baseball bat. Trust me though that once a game plan is in place your fright will turn to fight. When my husband’s CC appeared he was 73 and ended up having a Whipple Surgery. I am sure your ONC is not going to give his ideas of plans until he has all the tests back. Read up on CC as knowledge is your best friend in fighting this. Denise, even if you were an ONC you would not have seen this coming. It is the sneakiest little Monster BUT surgery is a GOOD word on our Board, believe it or not. I am awaiting now for your news on the 9th. Much good luck and attitude is not only everything it is the BEST thing! Be strong!July 4, 2013 at 2:27 pm #8569
Hi all, my name is Denise, I’m 44 and live in Jacksonville Florida. I have a tentative diagnosis of CC. So far, there is no liver involvement, no lymph involvement, only on the ducts. I have had Ct’s, MRI and a ERCP with stent placement because the ducts were constricted. The MD feels the constriction is due to the tumor. He took brush biopsies that have not come back yet. I have an appointment on tuesday the 9th with a surgeon at Mayo. I am told mine is resectable, which I’m happy about. We are all still in shock as I am an active person with no health risks. I am an nurse and am very in tune with my body. Any advise would be appreciated. I am so scared.
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