Topic: New to site--July 08 cc diagnosis

Hello.  I am a 64 year old RN diagnosed with a lemon sized cholangiocarcinoma in the left lobe July 08.  Dr. Curley at MDA resected the left lobe and found clean margins and no mets;  PET negative.  I return every 4 months for followup, and so far so good--wth no further findings, and no chemo or rad recommended.  I feel very fortunate to have discovered the tumor early--my only symptom had been a little shortness of breath (apparently because the tumor was pushing up against the diaphragm) which I had been attributing to just being out of shape and getting a little older. The tumor was discovered during x-rays to rule out some other stuff--an "incidental finding" as they say in the medical world.  So, I join you all in this cc world feeling, so far, really lucky, but also very grateful for all the information you share on this site...I shall come here often to keep up as I head down this scary path.  One question:  anyone else share a similar story, with no chemo or rad in followup?  I guess I am wondering, despite every confidence I have in Dr Curley, whether chemo and or rad are routine post op courses for most folks.  Again, thanks for sharing   Judy

Re: New to site--July 08 cc diagnosis

Hi --

Your story sounds kind of similar to mine. I am 44 and the tumor (intrahepatic) was an incidental finding. Unfortunately, surgery to remove the tumor was unsucessful. I have no particular symptoms at this point with the exception of a general fatigue and some ongoing bowel problems (which existed to some degree for most of my life.)
At this point I've chosen no traditional treatment, as I am not truly convinced that chemo does more good than harm in cases like mine.
I am interested to hear that you were not asked to do chemo or rad as a follow-up to surgery; it seems like lately most docs have more or less insisted on this, even though there seems not a lot of evidence to suggest that the chemo does a whole lot, either on its own or as an adjunct to surgery.
It is a scary path indeed;  I am not certain that anyone on the planet not experiencing this can understand how it feels to live with this every second, every minute.
-Irene

Re: New to site--July 08 cc diagnosis

Irene,

You are so right. Unless you have lived with it or been touch by it in some way, you can not possibly understand what it is like. There is nothing even close in comparision.  I am not a doctor or nurse, but my personally feeling is that in cases such as yours & Judy's I too would opt for no chemo or radiation. I also am convinced that it may do more harm than good. Again, this is just my personal opinion. Each person has to know there own body & make ther own choice in these matters as to what they feel is best for them considering everything that is involved. I do wish you both the best of luck on this scary journey that you did not chose to go on but are now having to cope with.

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: New to site--July 08 cc diagnosis

Hello Judy & welcome to you! You are a lucky gal, incidental findings are nothing short of large miracles.....  I wish you all the best on your continued journey to good health!

-Tess

Re: New to site--July 08 cc diagnosis

Hi Judy

Your story is also so very similar to mine.  A mass (3 cm) was noted in my liver on a gallbladder ultrasound.  I had never had any gallbladder problems before this and my surgeon felt they were entirely unrelated.  So, an incidental finding as well for me, a very fortunate finding.  I had surgery in May 2008 and all else was negative,  wide negative margins, negative lymph nodes and a negative PET/CT.  All my blood work and markers have always been negative as well.  I also had no additional treatment.  I did get quite a few opinions and they were all unanimous for no additional treatment and actually pretty adamant in stating that.  The medical oncologist that I saw gave me a 70% cure rate, and he's not known for his optimism!  I think it's an issue of risk versus benefit.  But, I still wonder if I should have, despite that.  I do go for a CT scan every 3 months and that will be extended to a longer interval after my end of March scan.

You're so right in saying that it's a "scary path".  It's so difficult to learn to live ones life with this.  I go back and forth between fear and then confidence that I will be fine...that I'm cured.  The one thing I know is that everyone here understands and that it's OK to say anything here, to ask anything. 

Welcome Judy!  I am so glad you found us here.  I'm so hoping that you will continue to do well and  keep reporting good news.  We all love to hear good news here!

Jean

Re: New to site--July 08 cc diagnosis

Hi Judy,

Welcome and congrats!  Not many people are able to traverse the path you have...  I, too, have been one of the lucky ones. My tumor (5cmX5cm) was also found incidentally during a gallbladder ultrasound.  I had surgery in January of 2007 with clear margins.   So far, so good!  I am now at CT scans every 6 months with my next one on March 18.  As always, the nerves will ramp up here very soon, but I just keep telling myself that all will be well. 

My doctor gave me a 50/50 chance to live 5 years. That has been her experience with patients that are able to have resection and have clear margins.  Well, I am at two years, so I am getting there!!!

I also have IBS issues and reflux.  I STILL have abdominal pain, not sure if it's from the nerves that were cut during surgery, or the scar tissue. No one can find a real reason for it. I only know that it's real and I wish someone would make it go away.

But, overall, I feel better than I did prior to finding the tumor (something was obviously wrong, but I had no idea...) and go about my life in a fairly ordinary way. 

You will find a lot of help on this site. The people here are fantastic and there is always good advice if you have any questions.

Welcome!
Sue

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

Re: New to site--July 08 cc diagnosis

Thanks!!! It is SOOO nice to have such quick and empathetic responses!  I leave for Houston on Sunday for the every-4-months CT, CXR, bloodwork and doc talk--we stay for 3 days--and my precheckup anxiety has been calmed a bit by having contact with you folks.

I too was given the 50/50 figures, with the added info that, for the 50% that have a return of the cancer, 85% reoccur within the first two years (hence, t he every 4 months checkups right now).  So, Sue, you really are well on your way through the odds!! 

Also nice to hear that the no chemo/rad approach appears to be more common than I thought.  My doc said he saw no reason to put the body through any nonspecific chemo program since there was nothing to target....keep the arsenal in the hip pocket for future use if necessary.  So, I will revisit the topic with him next week--and keep you posted on his comments.

Again, thanks!!  I look forward to routinely checking in here with newfound buddies smile
Judy

Re: New to site--July 08 cc diagnosis

Judy,

I also meant to add...I really questioned her "no chemo" stance after surgery, but she said that there was simply nothing for it to kill.  Well, I know there may have been SOMETHING, but I didn't push that decision. I figured she was the one with all the knowledge.  I will let you know how I feel about that decision at the end of 3 more years (if not before).

Good luck with your test!  I know how bad that anxiety can get, but it sounds like you are doing very well!!!  Keep up the good work!!!

Sue

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

Re: New to site--July 08 cc diagnosis

Hi Judy and welcome to the best little club in the world that no one wishes to join. It must been even more scary to be in the medical profession and to find you have hit the lottery of cancers! Your attitude is wonderful and will do well for you through this journey. Teddy's CC was confined to the bile duct valve and 5 yes 5 Oncologists have all said no chemo it will not help for his particular kind. He did have radiation last summer to shrink its return then cyber knife to zap it in December. All is well for now.  You have entered a world here of wonderful people, glad you found us.

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: New to site--July 08 cc diagnosis

I so love Sue's tag line: 
"Today is a new day. Congratulations, you are already a survivor!" 
THANKS FOR THE SMILE.  I needed that.  -ljg