Topic: New to Board, to CC, that's what they think I have now...

Hi everyone. I just found this site last night and have been poking in every corner!

I was diagnosed 8/1/07 with adenocarcinoma in my liver - of unknown primary (they didn't know what kind it was) I had a biopsy that confirmed the cancer, but still no origin. So they treated me with several courses of chemo. I've had Gemcitibine and Carboplaxin and then Carbo and Taxol. The first batch wasn't bad, but the second really wore me out, lost my hair, etc.

Since then and many CT scans, they have found no change in the tumors in my liver. No growth, no shrinkage...at all. So they stopped the chemo and for the last 13 weeks (another CT in between with no change) I have been just sitting here wondering "what the heck?"

I have a CT scan tomorrow. My oncologist called me yesterday to tell me she was not going to be there for my appt. next week for the results (AUGGH!) but she told me that she had my biopsy slides re-evaluated and worked with the GI expert who thinks I have cholangiocarcinoma!!!!!

Now I do not have any symptoms. certainly nothing like you all on this board talk about. But then, the only reason they found the masses in my liver (many, 3 main ones up to about 4mm) is because I had a CT scan due to a lingering cough. Recently I'm getting pains in my right side, but that's it.

Do you know Anyone who presents like this? Am I just so early that I don't have the jaundice, etc? My doctor told me that if it is cc that it's "intra" within my liver, not outside and though I've had PET scan and many CT's, nothing has shown up. I don't know much about my blood tests, apparently nothing to indicate anything specific. BUT the biopsy is confirmed for adenocarcinoma.

Having cancer of unknown primary (it's called CUP and is rare too) is bad enough, and I am sort of wishing I knew at least what kind of cancer I have, but from poking around on this site (thanks SO MUCH it exists!!) it sounds like I've jumped from the frying pan into the fire!

Prognosis for mets cancer to the liver with unknown primary is pretty dismal too. I'm already half way through THAT guesstimate!

It would be a dream if I could consider a surgical procedure - they said a definite NO before, but I've been hearing that Mayo will consider it for cc if there are no lymph nodes involved. As far as I know to this point, all of my masses are all over my liver, but no where else.

Anyone have any comments or insight or suggestions for me? I go to the Az Cancer Center (UMC) which is supposed to be pretty good, but with an unknown cancer type no one has really known what to do with me anywhere! 

Thanks for letting me spout off, and if you don't mind, I'll hang around here for a bit. :-)

Re: New to Board, to CC, that's what they think I have now...

Hello Patti,

I hope you find answers to your many questions on this site and support.
Sorry you had to come here, but we are here for you.

Stay positive and strong~

celoi  (Charlene Eloi) daugher of David Cook

3 (edited by marions Fri, 29 Feb 2008 18:20:49)

Re: New to Board, to CC, that's what they think I have now...

Hello Patti,
My initial response would be to gather the CT Scans, lab results, anything and everything pertaining to the diagnoses and to forward those to other liver cancer specialists for a second, third, or even a fourth opinion.  Using the

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: New to Board, to CC, that's what they think I have now...

I'm glad you found this site too.  My husband Charlie was diagnosed 5/07.  He never had jaundice and still hasn't.  I think Charlie's was adenocarcinoma also - still don't know origin, don't guess we ever will.  He also had Gemzar with no shrinkage or growth.  Please don't give up.  Look into 2nd and 3rd opinions.  Charlie was told no surgery either until we found a surgeon who was skilled enough to do it and removed over half his liver in 11/07.  Do you have someone in your family or a close friend who can help you navigate through all this?  It can really be overwhelming. 

Spout off all you want and let us know how things are going for you.

Carol

Re: New to Board, to CC, that's what they think I have now...

Hi - my mother had intrahepatic and the only way they could make a positive diagnosis was through a biopsy - I know you've tried that, but they may be able to target a different area with the cc in mind. My mother also had no jaundice (until the very end), no need for stents, just fatigue and some discomfort in her right side.

I don't have much info - just wanted to say welcome and hope you find some answers here - and GOOD LUCK! Read up on all the people who have been fighting this and doing GREAT and you'll feel a little better! As everyone here likes to say, you're not a statistic, whether it's cc or unknown primary.

Best of luck,
Joyce

Re: New to Board, to CC, that's what they think I have now...

Hi again, and thanks for the responses. What I don't get, and am sort of afraid of, is if I don't have symptoms, am not in pain, should I just continue to do this "wait and see" or is it, like I fear, just waiting for something bad to happen and then they can "deal" with that?

Re: New to Board, to CC, that's what they think I have now...

PattiB,

I also had intrahepatic cholangiocarcinoma.  It was found incidentally when I was (probably) having a gallbladder attack.  I had a 5.5 cm tumor in the right lobe of my liver. I have a fantastic doctor, a liver specialist/oncologist/surgeon who was able to take it out right away.  I am now 13 months after resection and am doing well.  I go for CT scans every 3 months, with my next one March 11. Then I will start going every 6 months.

I don't believe I ever had pain or jaundice DIRECTLY RELATED TO THE CHOLANGIO.  I was having pain, which sent me to the hospital, but I had a big stone in my gallbladder, which did cause jaundice days later, for a couple days.  But if not for the GB attack, my cholangio would not have been found until it was too late. 

So, I guess what I am saying is if you do have ICC, there is a good chance that there will not be any pain or jaundice.  Please keep looking around for doctors. Get 2nd, 3rd, 4th opinions.  It's important. 

I wish you all the best. Know that we are all here, ready to help in any way we can. You are not alone.

Take care,
Sue

Today is a new day. Congratulations, you are already a survivor!

8 (edited by Ron Smith Thu, 28 Feb 2008 05:15:39)

Re: New to Board, to CC, that's what they think I have now...

Hi Patti

I found your post very interesting since I am experiencing very similar thoughts just now.  I was diagnosed with ICC in July 2006  when I had an ultrasound scan for suspected gall stones.  I had a partial resection of the right lobe and removal of the gallbladder in August 2006 but the tumours returned and I had the full right lobe removed in March 2007.  Again the tumours returned and I have been told there are no further surgical options available.  I have never had any symptoms and basically live my life as normal.  The only chemotherapy I have had was as part of a clinical trial but this only lasted about 3 days because the drug (Xeloda) brought on an angina attack, which eventually required angioplasty and stenting.  I am now attending the oncology centre in Glasgow and their advice is not to start chemo since I am feeling well and to wait until I have symptoms. 

At this stage nothing apart from palliative chemo is being suggested as anything else, including pre-emptive chemo, is likely to cause more damage than it can heal.  Interestingly, they are also not very keen on giving me CT scans.  This I have found strange but their reasoning is that there is no benefit to me knowing that the tumours have increased in size or number if I still have no symptoms.  I can understand that to a point because you do get depressed if the scan shows bad news and that cannot do you any good.  So I feel as if I am presently feeling fine, know bad things are happening inside me, but doing nothing about it until I am unwell, by which time it may be too late.  I feel I should be doing something positive now but at the same time am scared to tamper with things.  I have persuaded them to give me a 6-month CT scan and will keep my fingers crossed that it does not give a depressing result.  Should I have bothered with the scan?  It is difficult to know what to do for the best.

All the best

Ron

Re: New to Board, to CC, that's what they think I have now...

Hi Patti- not sure if you have read any of my posts, but Dave's CC is almost exactly the same as yours except he has multiple large tumors in the left lobe but nobody has ever really seen any bile duct tumor and he has never had any typical symptoms.

Hypercalcemia almost killed him which was what brought him to the hospital.  That usually goes with lung cancer so they did a CT scan of his lungs and saw the liver tumor. 

Initially they called it CUP but then after a second bx at Mayo they decided it "may be CC".   His blood work does not indicate anything.   We went to Mayo but they said too many tumors for transplant and that "it" would probably go to the new liver.   He then had 5 rounds of Gemzar and Oxcilliplatin with no change except pulmonary edema that again almost killed him.  In fact he stopped breathing and I resuscitated him. 

They stopped the chemo and said go home and wait and see.  He felt quite good for awhile but then the hypercalcemia came back and he spent most of the time in bed from fatigue. Still no typical symptoms but the tumors were enlarging.

In January we went to Cancer Treatment Centers of America and it was the best decision we have made.  Unfortunately you can only go there if you have a PPO insurance, and can come up with the co-pays, but the treatment there has been beyond incredible.  They have provided a lot of hope and different options for treatment and actually care about you which is a big change from the Boston Hospitals.  I can't recommend them enough.  Dave may not survive this but we feel we are getting the best and most progressive treatment available.

CTCA has 5 hospitals in US now with a new one opening soon in Phoenix.  Hope this is of help to you and that you will stay connected with us here on this site as it has been a life-saver for us having access to other people fighting this horrible battle. 

Our Doc at CTCA is checking out the new drug we found out about on this site....triphendiol.   It looks very promising for reducing liver tumors. Sorry to be so long-winded but it can be difficult to try to go back and re-harsh people info, so thought i would make it easier by giving you a synopsis.  Best to you.

Patrice

Re: New to Board, to CC, that's what they think I have now...

Hi again,
Thanks so much for your thoughtful responses! I feel better knowing that I'm not the only one in this situation! I had the CT scan yesterday and now have to wait until next Thursday for the results.

How do you go about getting a second opinion? Do you have to find someplace/someone you think might be good? Do you just tell your Dr that you want one and who do they recommend? It seems kind of silly but I have no idea what the protocol is, and to be honest, I feel a little scared to tell my Oncologist this.

In January, after the first 6 weeks of waiting, I asked my sister to come down from Minnesota to go with me (I'm on my own down here in Arizona). We worked for hours on specific questions and still the interview didn't go well and it seemed my Dr. got a bit defensive. I just don't know how to go about this thing I guess. Any suggestions would be greatly appreciated!

Re: New to Board, to CC, that's what they think I have now...

PattiB, just remember that you are the patient and therefore the customer.  If your doctor gets defensive I would take this as a warning sign, you have every right to seek a second opinion and should.  any doctor worth his salt should not only not mind your wanting a second opinion, but should encourage it.  If he/she is offended by that I would not have a lot of faith in that doctor, but that is JMHO.  You can start here by looking under the Major Cancer Centers, they all have contact information and will tell you what kind of information you need. 
Don't be scared of your oncologist, remember, it is his RESPONSIBILITY to take care of you, it is NOT your responsibility to take care of him.  You have been given a very serious diagnosis, it IS your responsibility to make sure that you are being given the correct information.  Good luck

Barb aka "the commander"

12 (edited by JeffG Fri, 29 Feb 2008 16:01:44)

Re: New to Board, to CC, that's what they think I have now...

Hi Patti-I agree 110% with the Commander.  My CC is of unkown primary and always will be.  I had Oncologist actually verbally slamming each other over where it originated.  It really hasn't matter to me.  I still went the routine of half of liver removed and gallbladder.  Then monitor with Ct scans.
If I had to do it again I would have  a round of chemo after and that would be it.  You need a surgical opinion on if the liver tumor is resectable with clean margins and get rid of that troublesome gallbladder at the same time. That's just my opinion.  Have you been told if the tumors are on one lobe or both?  Patti, it's so awfully confusing at times I know.  The bottom line is if it is DX as intra CC it is considered systemic (in your blood) eventually chemo may be the choice to keep it under control but long term chemo will eventually wear out your bone marrow and weaken your on immune system so you have to draw the line at some point with chemo as well. You may have to start and stop chemo giving your body time to recoupe.  Patti, March 16th will be nine years fighting this miserable disease.  Yesterday I saw my oncologist and my blood counts, BP, and about everything else was within normal range. The oncology Nurse commented in amazment this was the best I've seen your vitals in 3 years.  I just told her it was amazing how the power of the human mind and balance of energy can do for ya.  Listen to the Commander Patti, and get a second or third opinion, oncology and surgically. Positive state of mind and self advocation as scary as it may be, is the way to go.  1. resection if possible (more than one opinion)2. Chemo if you want and then only if it is working. If not working try another type of chemo 3.  Radiation There are different types (some real high tech procedures available).  You also mention you were having some pain in your side-- Don't hesitate to ask for MRI of pelvis,abdomen, and chest.  Listen to your body.  I hope this was not to blunt patti, but the point is take the bull by the horns and you can manage this disease for a long time in my opinion. Again this is just my opinion, we all have them. After saying that, it also depends on when it is found, where it is found, how advanced and wheter it is low grade or high grade which determines how rapidly it progresses. the pathologists can determine that by how active the biopsy sample is.  We all have different DNA and unfortunately different outcomes. At least remember the Lord helps those who help themsevles I believe anyway. Don't forget to maybe consider meditation/visualization/and other techniques that you can be doing while all else is going on.  CC is still uncharted waters and changing course as your body and minds feels may be needed.  Sorry for rambling, Just want you to know this disease can be manageable to a larger degree than some might think.  I wish ,hope, and pray that you get the answers your looking for and have positive outcomes.  I don't want to sugar coat nothing, you will experience and I think you already have with chemo a bumpy road.  Some more than others.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: New to Board, to CC, that's what they think I have now...

Hi Patti,

My dad also had intrahepatic cc, and like Joyce's mother, did not have jaundice or pain until very close to the end.  In fact, he never complained of pain and never took the pain meds until the very end, when he was sedated.  His cc was discovered at his regular check-up.  When the doctor pressed on his abdomen over his liver, he felt mild pain.  This prompted a CAT scan, followed by a needle biopsy.  He was diagnosed by a gastroenterologist in the Quad Cities.

My mother asked his primary care physcian to arrange a second opinion at Mayo Clinic in Minnesota (she specifically asked for Mayo MN), before he even met with a surgeon locally.   His Mayo appointment was 5 days later.  We took a CD with his CAT scan pictures and copies of all his lab results.  One thing we did not have were slides with his biopsy.  If you get a second opinon elsewhere, make sure these are sent so you can see an oncologist wherever you go.  We met with the Mayo surgeon (Dr. Gores or Gore), but were not able to meet with the oncologist because the slides had not been sent.  We didn't know to request them.

In my father's case, this did not really matter, because it was inoperable - (the tumor was against and partially surrounding the vena cava), relatively symptom free aside from weight loss and fatigue, and elected not to do chemotherapy.  He never saw an oncologist, even locally.

I would urge you strongly to seek a second opinion.   My dad was comfortable with his decision not to seek chemo, and we were able to support him, because we went to Mayo.  That decision is such a personal thing - but that visit to Mayo was really a comfort to my mother and I, even though they essentially said there was no hope in my dad's case.   If it were me, I would have kept seeking a third or fourth opinion, but it wasn't me, it was my Dad.  And he was able to make a better decision for himself because of that visit.

I don't post often here, because it makes me cry sometimes, but I visit regularly and can answer questions you or anyone might have about my Dad's experience, either here or privately through my e-mail at rwojdylo@semo.edu.

My prayers are with you, and everyone on this board.

Rae

Re: New to Board, to CC, that's what they think I have now...

You guys are amazing! It's just great to read your notes and hear your support. Since I live alone and don't have much in the way of family or friends here in Tucson, I get sort of sick just listening to myself! :-)

The thing that got me wondering about my Oncologist was that from the beginning they said I had three masses, all pretty small, in my liver. Still I was told because it was mets from "someplace" else, surgery was not possible. THEN about the 4th CT scan, she says, well, you have too many tumors in all quadrants of your liver. I said "WHAT?" They'd only ever talked about the three, and how they had not grown nor shrunk. She said the others were too small to really track. That got me going. 1st, why did no one ever mention them before? 2. If they don't track these small ones, how do they know if they are growing, shrinking or if there are more or less of them each CT scan? My trust went down.

That's when I asked my "big sis" the lawyer, to come and hold my hand for the next appointment. I'd been 6 weeks with no Rx and was worried sick. Still we didn't get too far, but I felt some reassurance that they were doing everything possible and really, if there was no change from the beginning, why rock the boat?

I talked to the advocate at the cancer center and told her my frustrations and how for the second time, my Oncologist said she was going to have my biopsy slides looked at again. I think it was due to the advocate's pushing that it really happened this time! AND, now she consulted with the GI cancer specialist and he thinks it is bile duct cancer. What do you know?

All this long winded stuff is in response to is there a surgical solution. My onc says no, or did anyway. Having tumors "all over" my liver doesn't sound too good, but then I've never had any symptoms of blockage or pain. I have no clue if the tumors are in places that make surgery impossible, or if the sheer numbers (if that's true) preclude surgery. I got the idea from some of your wording that taking my tests to a SURGEON as compared to an Oncologist, might yield different answers. My clinic is an National Cancer Institute designated "comprehensive cancer center" with tons of specialists. You'd think they could consult??

Re: New to Board, to CC, that's what they think I have now...

I remember those early days of my husband's diagnosis very well. We, too, were involved with a community hospital, large university (NCI designated) hospital, then yet again another large university hospital in another state.  The sheer red tape and detail managing of it all was mind-numbing.  There were days where I spent the entire day on the phone.  Other days with sheer frustration of unreturned phone calls, trying to schedule something, worry, and research, and more worry.

What I hated most of all was that everyone we encountered would tell us the tumor was agressive and that we needed to move quickly, yet the next appointment/test/consult would be scheduled weeks away.  No one ever seemed to get the story straight.  I still want to cry when I remember my poor optimistic husband dragging around his medical records, films, CDs, and slides from place to place looking for some good news.

Things will get better when you settle into a plan and a routine.  Best wishes to you.

Re: New to Board, to CC, that's what they think I have now...

I wholeheartedly agree with all the recommendations to get more than one opinion.  This is still a rare cancer and I believe it helps to find a clinic that has more experience with this diagnosis.  On the other hand, after reading the posts over the years you realize every case is different and there are so many different options being employed today.  You are in AZ so a trip to the Mayo Clinic in Scottsdale might be a good starting point or they may refer you directly to MN.

As far as the multiple tumors, my wife had that issue after she had two liver resections.  She ended up being treated with Therasphere at Mayo Clinic and it worked very well for her.  Maybe chemoembolization is also an option for you.

Good luck and I would say please keep pursuing different options until you find a doctor you trust who has a game plan you feel comfortable committing to.

Bill

Re: New to Board, to CC, that's what they think I have now...

Thanks for the encouragement. That's what I'm going to do. My appt. is Thursday and it's going to be with my Oncologist's Nurse Practitioner, as my doc is out of the country. I was upset about this at first, but now I am going to tell the Nurse that I want a copy of all of my records and my biopsy slides. That feels easier to do right now than with my Oncologist herself.

Then I'm going to contact Mayo. As it turns out, my family lives in MN and my brother actually had a liver transplant in 1999 at Mayo in MN (not cancer) so I'm going to contact them.

I may go to the Phoenix Mayo however as it is closer and I have major financial issues so staying in-state my help. At this point I don't know.

When this all started it was "rush rush" too and they all acted like I was going to be incapacitated soon. During the chemos, etc I dropped to very part time work and my insurance wouldn't cover so I went on the state's insurance (very low income). As part of that I was to apply for disability. So I did and that got rushed through because of the stage IV cancer. BUT, now that I qualify for ssdi I "make" too much money for the state insurance, so they just cut me off of that as of March 1st. Right now I have no insurance at all! Lovely the way the government works.

Re: New to Board, to CC, that's what they think I have now...

Your insurance dilemna is unacceptable and the U.S. needs to fix this problem immediately (I will be scrutinizing the presidential candidates' health care proposals carefully) .  I hope this does not stop you from pursuing the right options for you. 

If you go to Mayo-MN, I highly recommend Dr. Stephen Alberts or Dr. Lewis Roberts.  I am confident you will at least have a better idea where things stand and at best have some viable options to treat your cancer.

Good luck.

Re: New to Board, to CC, that's what they think I have now...

Hi Bill,
Thanks for the reply. You BET it's going to stop me cold from getting full care! I too am looking at the candidates closely, but no one is addressing the gaps.

Once you qualify for Disability (SSDI) you have to wait TWO YEARS to qualify for Medicare. Most people who worked as adults will make too much on SSDI to qualify for their state's insurance programs. We're talking about $100-200 too much PER YEAR.

Arizona didn't FUND it's program to let people who HAD been on their health program, but now were earning a bit too much, from paying a premium (like regular insurance, but based on income) so while the program is on the books, you can't get it.

I actually had private insurance, finally, after years and years of not being able to afford it. Still couldn't, as it was 1/3 of my total income, but I did it anyway and lived "small". During the 2 years I paid for it, they kept changing the coverage until instead of no co-pay for x-rays, CT scans, etc. it was now 20% co-pay and that was on their "most coverage" program! No way can I afford the premium PLUS 20% and that's not even mentioning the Chemo treatments!!! Oh, of course the premiums kept rising despite the reduced coverage in every category! roll

I don't know how I can afford a second opinion, assuming they (whomever) charges fees to review your records and if it requires travel somewhere - like Minnesota for Mayo Clinic, I'm screwed, so ya, desperate situation.

Thank God right now my mets tumors in my liver aren't growing a lot, but how long can I count on that?  I'll know more on Thursday!
Sorry to dump so much, but I'm dealing with this RIGHT NOW trying to find a way to pay for last weeks CT scan, and my temper is short. I've been on the phone all day calling everyone I can think of. I'll chill, and just do what I can by tomorrow.  wink

Re: New to Board, to CC, that's what they think I have now...

All I can say, again, is thank God for our National Health Service here in the UK.

Re: New to Board, to CC, that's what they think I have now...

Hi Patty,

First I want to say I am so sorry that you are in this situation. I haven't posted for a long time, but I read the other posts regularly.

My younger sister had the same problem when she was first diagnosed with this horrible disease. We took her to the Mayo in MN, but we had to put 2500. up front, before they would even see her. Then we got sent back to billing every time they wanted to do another test, and we would need to put up more money. My mom, my brothers, my sister and myself were putting it on our credit cards.  So very frustrating and unfair! She was only 32 years old, and did not have health insurance even though she worked as a med aid/nurse's aid for several years.

It is hard enough waiting for appts, phone calls, watching your loved one in so much pain, but then to have to worry about the medical aspect of it too, it was terrible.

Hang in there and keep looking for resources.  Hugs!!

Karen B.

Re: New to Board, to CC, that's what they think I have now...

Thanks for writing Karen!
At least that gives me an idea of what might happen if I approach Mayo in MN. Fortunately the AZ Ctr will work with me and not deny service, bless their hearts, so I may be restricted to just there, and really, they are wonderful, but as I've been told and told, I really could use a second opinion! Oh well, I will find out tomorrow what they have to say about my CT scan last week. Praying for good news!
Hugs to everyone, this is no fun no matter what your situation!
Patti

Re: New to Board, to CC, that's what they think I have now...

http://www.mayoclinic.org/billing-sct/charity.html

This is what I found on the Mayo Clinic AZ web-site.  I hope it's not just marketing BS. 

My wife, Kathleen, was blessed to have great insurance and no claims or treatment were  ever denied.  I find it tragic that receiving necessary treatment could be based on the ability to buy health insurance.

Re: New to Board, to CC, that's what they think I have now...

It is criminal that in this, one of the richest countries on earth, people have to lose their homes and go bankrupt in order to get health care.  Whether you believe in socialized medicine or not, something has to be done, it's ridiculous!

Re: New to Board, to CC, that's what they think I have now...

Patti,
There are physicians willing to look at your reports without it involving any cost to you.  Dr. Jenkins, at the Lahey Clinic, is one of them and I would think that others had encountered similar experiences with other specialists in this field.  I assume you have had a triphasic scan.  That and all reports plus lab results (including biopsy) should be sufficient to forward for another opinion.
The best of luck.
Marions

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