Topic: Not an official member yet

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!

Re: Not an official member yet

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.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Not an official member yet

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.

Re: Not an official member yet

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

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Not an official member yet

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.

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: Not an official member yet

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!

Hope, love, strength...2013 and for the years to come, Porter.

Re: Not an official member yet

FNTN.....I too would like to welcome you to our site and share a few additional thoughts.
We have seen that needle biopsies most often are either, inconclusive or negative for CC hence, your experience is not unusual.  The upcoming MRCP should offer additional information and may eliminate any additional testing.
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: Not an official member yet

Hello fntn,

My mother's needle biopsy came back negative for cancer, but PET scan showed concern. They obtained sample via ERCP  which came back at positive for the cancer. 

I pray that you will receive good results!

Anna

Re: Not an official member yet

What a wonderful site this is, thankyou!

I'll be going in again for the biopsy so I hope this new set of doctors will give it the best chance of a proper sampling. We'll see.

Seems quite a number of others have had different forms of cancer in the past. Myself included, renal cell carcinoma, and missing some plumbing because of it. Is there any strange correlation with this or just bad luck?

Re: Not an official member yet

fntn....I have been told that some people are more susceptible to cancer than others are.  Why this is happening - no one knows.
So glad that you have found us.
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: Not an official member yet

My mom was diagnosed with renal call carcinoma approx 12 years ago. Partial nephrectomy took care of that, but unfortunately, she was diagnosed with this 12 years later.

Anna

Re: Not an official member yet

A quick update and seemly no progress.

The second round of needle biopsies were negative again but they said things looked unusual. They want to wait for 3 more weeks and do another MRI/MRCP in February which makes it 3 months since the previous MRI. Meanwhile my liver  enzymes have been slowly increasing (now up to: alt=37,ast=44) and the alp remains elevated around 180 or so. The WBC count is still high at 10 and my serum calcium level has slowly risen to 10.7, slightly above the normal high (I've read that CC can cause hypercalcemia ??).

Now I have the Univ of Mich Hospital involved as well for the second opinion and should hear back from them soon. They've taken my case to their tumor board for any additional input.

Waiting hardly seems like the thing to do but there seem to be no other choice. Multiple doctors have concluded that the MRI results indicate ICC but they remain reluctant to commit to surgery or any other course of action.

Re: Not an official member yet

Hi fntn,

I am happy you sought a second opinion at U of M. I have nothing but great things to say about them. I hope you will see Dr. Chris Sonnenday and Dr. Mark Zalupski. They were my daughter's surgeon and oncologist and are very wonderful doctors that really care about their patients. They have a great deal of experience with CC as well. I'm sure they will come up with a great game plan for treating you. I am 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: Not an official member yet

marions wrote:

fntn....I have been told that some people are more susceptible to cancer than others are.  Why this is happening - no one knows.
So glad that you have found us.
Hugs,
Marion



Hi Marion, I have been a sugar addict for the past 20 years, but after my husband died, my addiction accelerated.  I ate cakes, doughnuts, lots of pastries.  I was also a 1 gallon of milk every other day person.

I believe that the liver and other organs could not properly process all the sugar.

I will go to my grave believing I was responsible for my cc. Sugar kills.

Re: Not an official member yet

Oh no, I don't buy that.  Why this cancer occurs has not been identified.  Researchers have pointed to certain risk factors and obesity may contribute to the development of Cholangiocarcinoma however; there has not been a scientific explanation as to the molecular behavior of this disease and why these cells multiply the way they do.  If indeed sugar consumption was the main culprit, then we would see a much higher patient population diagnosed with CC.  Although, sugar and salt consumption in my opinion is way too high, but we cannot single out sugar and dairy as the reason for developing our cancer.
Please, do not put this on you.  You have no reason to believe that you have caused this cancer.   
Hugs and love
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: Not an official member yet

Pat, I agree with Marion. My Dad had a Candy store downtown Kansas City and he loved his candy his whole life. Lived to be 93 with no diseases at all. He actually played Tennis until he was 85! I on the other hand ate little candy, don't even care for chocolate, lactose intolerant and I get Diabetes! Go know. Like one Doctor said a few years ago it seems to just be the luck of the draw! We really don't know enough yet to know what causes CC. Like they say, stay tuned for the rest of the story.

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: Not an official member yet

I agree that there's no known reason for getting cc. BUT I agree that sugar is bad! I believe cancer cells feed on sugar and some other processed foods. So, while I don't believe sugar CAUSES cancer, I believe my sweet tooth helped it grow.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Not an official member yet

I have to agree with the others.  In my case I'm the sugar addict and also got worse after Jim passed.  He was a much healthier eater than I and he is the one who ends up with this cancer.  At one point I tried to blame it on cholesterol meds.   In my mind I felt that triggered and accelerated the cancer.  Still really believe in the liver flukes theory, but many with this disease were never exposed to that either.  At this point I think the verdict is still out on what  causes CC.  Sometimes I think it is just the luck of the draw and it is what it is.
Please do not place blame on what you did or didn't do.  This was not your fault.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Not an official member yet

Regarding diet and lifestyle changes --

Well, this is just my opinion, but here goes...

I think it is incredibly easy to be fooled by randomness.  A good illustration from finance is the "stock picking newsletter" scam.

That scam goes like this.

Pick 1000 people and send them a "free stock pick of the month."  The scam part involves sending each one of the 1000 people a DIFFERENT stock pick.

For illustration, assume half the stocks go up after 1 month and half go down.  At this point, there are 500 people that got a "winning" stock pick from me the first month.  Take that group of 500 and send them another "free stock pick of the month."  Again, send all 500 a different stock pick.  After another month goes by, do the same thing to the 250 that have now got two "winning" picks in a row.

Now, after 3 months, there will on average be 125 people that have, for three straight months(!), gotten a stock pick that has turned out to be a good pick.  To this 125 people you send them a special offer to subscribe to your newsletter for the introductory price of $10,000 or some such nonsense.


Anyway, the idea is that the people receiving the stock picks only see the picks made for them (not the picks made to other people).  By shear random chance, a good fraction of them will see a sequence of good picks and will be inclined to buy the newsletter.  That is the stock picking newsletter scam.

In medicine, the same issue arrises.  It is not at all a scam, but rather the issue is that each patient mostly only sees what is happening to them.  For example, suppose 10 cancer patients add a "no sugar" rule to their diet.  Perhaps one of those 10 has a very good response to treatment.  It would be very natural for that patient to attribute some of the good response to the "no sugar" regime.

Similarly, 10 patients might decide to add lots of exercise (or olive oil, or anything really), and again perhaps 1 has a strong positive response.  This person is likely to suspect that exercise played a role in their response.

Now it could just be that one in 10 patients have a strong response by shear chance alone (even if they don't make any major lifestyle changes).

How to combat randomness?  In my opinion, the best way we have to guard against getting fooled by randomness is the clinical trial.

While it could be that certain diet changes have an effect on cancer outcomes, it may not.  Just as the people receiving the newsletters could be fooled by randomness, so can cancer patients.

For me, the take away is to try and be healthy, but don't do things that seriously negatively impact quality of life unless there is good supportive evidence. 

I also believe that participating in a clinical trial plays an incredibly important part in trying to improve patient treatments.  Without clinical trials, randomness can slow down treatment innovation to a crawl.

Again just my take on things.

Jason

Re: Not an official member yet

I think I fall in the random category. I ate very very little in the way of processed foods or sugar, had no risk factors, exercised a lot and had no health issues whatsoever. In fact, right up to the week my eyeballs turned yellow, I felt like I was in the best shape of my life. 

So, go figure.

My takeaway is that eating well and exercising have given me the ability to be in better shape to fight this invasion as long as I can.

Lisa

Impatient patient.

Re: Not an official member yet

Lisa,    You have a great attitude.  I like the way you think.  smile  I'm sure that, along with your healthy life style will definitely benefit you in fighting this disease.
Hoping for the best for you. 

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.