Topic: Another Newbie

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.

Re: Another Newbie

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another Newbie

Dear Denise,

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.

Clare

In the stars now . . . .

Re: Another Newbie

Denise
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.
Willow

Willow

Re: Another Newbie

Hi Denise,

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.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096127/
http://www.ncbi.nlm.nih.gov/pubmed/22178463

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.

Best wishes,
Eli

Re: Another Newbie

Hi Denise,

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.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

7 (edited by marions Fri, 05 Jul 2013 11:16:26)

Re: Another Newbie

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.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another Newbie

Hi Denise,
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.
Hugs
Lisa Craine

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Another Newbie

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????

10 (edited by marions Tue, 09 Jul 2013 17:51:01)

Re: Another Newbie

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. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another Newbie

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another Newbie

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.

Re: Another Newbie

Denise,  enclosed are a few links
Moffitt
http://www.cholangiocarcinoma.org/punbb … =465464550 and this on Mayo - Jacksonville
http://www.cholangiocarcinoma.org/punbb … 1476519381
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another Newbie

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.

Re: Another Newbie

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.

Re: Another Newbie

Dear Denise I want to wish you good luck tomorrow. What ever it is at least you will then have a plan in place and can get on with it, what ever it is! Don't you just love 'their' dialog. You are ATYPICAL, what? Well I think you are a lovely woman and not typical at all! Wishing you the very best for tomorrow and I know you will give us a report. You go girl!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another Newbie

Hmmm...Denise, so sorry.  I know that work is in process for the updated website.  Wondering whether that is the problem?  I will try to find other links for you.  Good luck with the biopsy, dear Deniese.  Please keep us posted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another Newbie

Hmmm...Denise, so sorry.  I know that work is in process for the updated website.  Wondering whether that is the problem?  I will try to find other links for you.  Good luck with the biopsy, dear Deniese.  Please keep us posted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another Newbie

Hi Denise,

I would like to welcome you to this site. Good luck with your needle biopsy. Make sure they numb it up well. My daughter had two of them. The first time really hurt so she made sure the second time that they really numbed her well and she didn't feel a thing. Bless you and wishing you all the best.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Another Newbie

Deniese,  these links "must" work: 

http://www.cholangiocarcinoma.org/punbb … hp?id=7547
http://www.cholangiocarcinoma.org/punbb … hp?id=1345
http://www.cholangiocarcinoma.org/punbb … hp?id=8526
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another Newbie

Hi Denise,

Ask Mayo doctors about transplant option before doing needle biopsy.

I heard that needle biopsy may disqualify the patient from receiving the transplant, because of the risk you mentioned (spilled cells).

Mayo is the leading transplant center. I'm sure they know what they are doing, but I thought I'd mention this anyway.

Re: Another Newbie

They said that I am not a candidate for transplant.  I'm not sure why?

Re: Another Newbie

They said that I am not a candidate for transplant.  I'm not sure why?  Of course we thought of all kinds of questions after the fact.  Like, if the tumor is around the portal vein, why not take it all out and just do a bypass vein, it's done all the time with aorta and other coronary arteries.  Who will be doing the biopsy?  Is the surgeon I saw or some guy in special procedures?

Re: Another Newbie

Denise....I have learned that segmental resection and wedge excision of the portal are difficult to perform and that it is in fact quite controversial. 
Here are some links:
http://www.ncbi.nlm.nih.gov/pubmed/11174708
http://www.ncbi.nlm.nih.gov/pubmed/21775914

As far as I know, in most instances, the radiologist will perform the biopsy.

Make sure to have copies of everything because you would want the opinion from a  "very aggressive" and "very experienced" surgeon(s.)

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another Newbie

We got the call from the surgeon at Mayo yesterday, it is indeed choangiocarcinoma.  Hopefully, we will see an oncologist at Mayo Tuesday if they can get us in.  Chemo and radiation is first up to try to shrink it before surgery can be done.  Even then he said that if it didn't shrink in the right place, i.e. away from the portal vein it would remain inoperable.  So what's the chemo of choice?  I'm ready to get it on!