Topic: hello

Hi,
I am 56 years old and have become a member of the not so desirable club.  Diagnosed in Sept 08, I was to have surgery....opened up and lymph nodes removed.  Three out of seven are positive. 
I have a wierd presentation.  This was found incidentally with no symptoms.  I had a physical and my liver function tests were elevated.  AST and ALT were in the 50s and my alkaline phos..was 398.  I went through all of the tests and then the dreaded words.  You have a tumor in the bile duct.  I saw a surgeon and he thought it to be operable.  It is a small tumor and according to the tests there is no spread to organs or lymph nodes.  But to the surgeon's suprise there were three nodes when he lifted the liver that he was going to remove....that was the plan to remove half of the liver.  So he cleaned out the nodes and closed me back up.  I was told that because the disease was "systemic"....the protocol is to zap with chemo.  I saw one oncologist who painted a very bleak picture.  I am a nurse practitoner and didn't like what he had to say....so....of we go to Tulsa to the Cancer Treatment Centers of America.  I was told there that the "right" thing was done.  I know the stats!  But nothing and I mean nothing about this has been normal.  First of all I have no symptoms....no jaundice, no nausea, no change in bowel, no weight loss, no itchininess.  Nada!  No mets to organs.  The results of the pathology are actually inconclusive.  In fact, the doc at CTCA said he has never seen anything like it.  My tumor markers are normal.  And in fact....before I had any treatment my liver function tests improved.  AST and ALT are now normal and my alk phos dropped to 240.  I want this tumor out.  The surgeon said that the tumor was much smaller than the CT showed.  In fact it is less than 2 cm.  He said that if I respond to chemo he would consider taking the tumor out.  So why the bleep  didn't he do so to begin with? 
I am interested in hearing from survivor's.  I am going to beat this son of a b.  I am appalled that there are few clinical trials because this is such a rare cancer. 
Sorry for the long intro....but I know that there is hope out there.  Attitude is half the battle.....I am going full force!
Lillian

Re: hello

It appears you have read our board well, so I will simply say welcome and sorry you had to join! The one thing we know for sure about CC is that we know nothing! Its bad enough to fight this but worse to feel like you have blinders on while fighting. I guess at this point I would send my records to a 3rd party and see what they say and then go from there. I am sure you will get some very sage advice here from others as my husband has had radiation and cyber knife but no chemo. There is a protocol with CC and it seems most have to have chemo or radiation first prior to surgery. Glad to hear your attitude is fighting mad as that is what it takes and as we say, Attitude is everything. Please keep us posted.

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: hello

Thanks for the words of encouragement.  The worst thing about this is that I am getting chemo which is making me feel ill, when before all of this I felt perfectly fine.  I am scared of course, but I have a good feeling about all of this.  I am not ready to throw in the towel.  I hope your husband is doing well.  I have thought about a third opinion....not sure where to go.  I live in the New Haven, CT area.  I guess New York or Boston.  I will go wherever it takes to remove this tumor.  It just doesn't make sense to me to not remove it!  I have a chemo treatment this a.m. and I am going to disucuss with the oncologist what his thoughts are on this.  I am due for my first scan in Feb.  I am very nervous, but if all is well I am going to push for surgery or radiation.  Will keep you posted.
Lillian

Re: hello

I think you have a right to be nervous and anything else you want to be! You can be all that and still have a good attitude, which I believe you do. Yes, keep asking until you are confident of the answers! My Teddy is doing ok. He just finished his cyber knife treatments. His CC was in the bile duct valve and then returned where his duodenum used to be. You can see my posts when you want something to do.  Good luck with the ONC. Oh, I know there are some board members in your area and I am sure you will be hearing from them also.

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: hello

Lillian,
   It is hard to believe your surgeon wouldn't take out the tumor if it was small and in a location that was operable. That just seems crazy but I think the stats are so bad with this cancer that a lot of Docs just don't believe there's any hope. We have had experience with both mindsets although all of the Docs my husband saw basically or outright told him this was going to kill him and probably sooner than later. He is now 31 months out from his original diagnosis and doing great. I would definitely start on a program of supplements that help build up your immune system and check into the radiation option. After all the time I've been on this site and researching this cancer I've yet to see any definitive evidence that chemo alone really does much other than some shrinkage here and there. I do believe radiation is effective though, along with chemo. Our Docs said the chemo softened the tumor up for the radiation to zap it and it worked! Get a second or third opinion and definitely consult a radiation oncologist. All of these different Docs have a different approach to treatment and how they view your chances. The surgeons and radiation Docs seem to be the most  positive and the oncology(chemo) Docs seem to be the least positive. We've experienced that and I've also watched TV shows where the exact same attitudes were displayed as we experienced by patients and Docs on the shows. These were shows where new cancer treatments were being tested. The oncologists had told the patient there wasn't anything more they could do and go home and get your life in order and the radiation Doc said he could cure it and he did. Radiation has come a LONG way the past few years! Anyway,take care of yourself and keep up the great attitude and start checking into your options as soon as possible!! Best wishes.  Mary

Re: hello

Lilian...If you are considering Boston I would contact Dr. Jensen at the Lahey Clinic, who is quite familiar with CC.  And, definitely,I would make contact with a Radiation Oncologist, as Marylloyd has suggested.  Others may also give you some names and share some of their experiences.  Also, which chemotherapy treatment are you on?  Have you had a recent scan?

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: hello

From our experience with this disease, Drs. Gamblin and Gellar with UPMC's Liver Cancer Center have been quite aggressive and optimistic with surgeries.  They are wonderful doctors and very familiar with this disease.  My mom had three chemo-embolizations done through them along with theraspheres and they were able to shrink her tumor to where they could take it out.  Unfortunately the cancer had spread, so her surgery was cancelled.  Prayers and hugs to you and keep on pushing for options!

Re: hello

Wow...you folks are great.  Thanks for all of the information.  Well....my numbers were great and I had chemo today.  Dr. Levy said that he was contemplating contacting the surgeon to re-consider removing the lesion.  That was good, because that was one of my questions to him anyway.  I will have the scan in 4 weeks.  Depending on that, will depend on the surgery.  If Dr. Salem (the surgeon) does not want to do the surgery then I will find someone who will.  Dr. Levy knows that I am determined!!!  I still feel great and Dr. Levy said that he is extremely hopeful that I have responded to the chemo based on my bloodwork.  Also...we talked about radiation.  Cyber knife is something that is available here so that is an option.  Thank you, thank you all for your words of wisdom and encouragement.
Best wishes to everyone.
Lillian

Re: hello

Lillian...Congratulations on the great results of the blood test.  I recall one of our JeffG's great comments:  If the cancer gets mean - then you get mean.  You are taking great charge of this disease and I am confident that everything will fall in place.  Looking forward to your scan results in 4 weeks.
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: hello

Lillian,
Welcome to the site and congrats on the bloodwork. I hope you find that surgon and get that tumor out! Best of luck fighting the doctor fight and getting a plan together.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: hello

Hi Lillian,  I read that Marion mention that you may consider Boston and she mentioned Dr Jenkins.  He was also my surgeon and in my opinion my life saver!  In case  you are interested in contacting the team of doctors at Lahey Clinic, Burlington MA here is the contact info: Roger L. Jenkins, M.D., F.A.C.S.  Cheif of surgery at Lahey Clinic Medical Center; Professor of Surgery ; Tufts University School of Medicine..41 Mall Rd  Burlington MA 01805  phone # 781-744-2500    Oncologist: Keith E. Stuart, M.D. , Chairman.  Dept of Hematology and Oncology   phone # 781-744-8400  and Radiation Oncologist.  Joshua Garren, M.D. 781-744-8780 they are an amazing team of doctors over at Lahey..and on top of that they have to be some of the nicest people I have ever met.  I owe them my life.   Good Luck to you and we will keep you in our prayers.  deb