Topic: Strange test results - good or bad?

A brief history:  Initially was diagnosed with CCA in 9/2009 and attempted Mayo Transplant Protocol.  I was enrolled in that protocol until the very end when a last minute CT scan showed peritoneal mets and laparoscopy confirmed.  All prevous imaging had seen only the small Klatskin tumor so we thought we were ok for protocol only to be ineligible at the very end of testing.  I was then sent home and started Gemzar/Oxaliplatin in the first week of October.  Last week, my CA 19-9 came MUCH more elevated than it was before treatment so my Oncologist ordered another CT scan.

This time (only 2 months later!), the scan was CLEAR.  There was no primary and no mets shown on this scan whatsoever (same test, same contrast, etc).  We are absolutely elated about that but wondering why the tumor marker has risen while the imaging has improved.

I want to take this as a piece of very good news, but still am concerned about that tumor marker and wondering if we might have missed something.  What do you all think?

Rick

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: Strange test results - good or bad?

Rick,
i dont want to be a downer, but I dont trust scans too much. I had ct, mri, ultra sound, ultrasound with contrast and everything came back clean but I still had a grapefruit tumor. I would ask for a PET.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Strange test results - good or bad?

Rick, if only anything thing at all ever had the same answer with this cancer we would probably be close to a cure. When Teddy started 4 years ago only the bilie rubin climbed a little. He never had a rise in the CA marker.  A year ago when it returned the bilie rubin did not climb but the CA marker did. Now it has returned again and the bilie rubin is better than normal but the CA is creeping upward quickly. It truly is a roller coaster ride. His radiologist prefers the PET Scan which will be done again in December.  That will be 4 of those this year. Wish I could be more helpful but you can put a call in to your Onc any time and just ask what it might mean. Sounds like maybe the chemo is working well. Good luck.

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.

4 (edited by marions Wed, 18 Nov 2009 15:33:11)

Re: Strange test results - good or bad?

Rick...I agree with Kris in that scans are not definite in the detection of CC.  This is what I have learned so far:  Imaging plates are 1 cm thick.  Therefore, lesions exceeding the size of 1 cm only are visible during open surgery.  This is something you and many others have experienced and it has been confirmed by many others including, surgeons treating this cancer.  Tumor markers are only one of many tools aiding in the diagnoses of CC.  They are used for baseline purposes such as the starting point of a treatment where the trend of the markers will be evaluated in addition too other symptoms.  You can read up on tumor markers on our website by using this link:  http://www.cancer.gov/cancertopics/fact … or-markers.  Has another CT scan recommended by your physicians in about 3 months?  And, are you continuing with your current chemotherapy? The absolute best news is that you have responded so well to Gem/Oxy treatment.  That truly is something to celebrate. I am happy for you.
All my best wishes are coming your way.
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: Strange test results - good or bad?

Well, I got the comparison results back from the scan at Mayo and it definately shows shrinkage/reduction in tumor and improvement in the dilation of the bile duct so I'm going to take it as good news.   I know some of you were skeptical but I think about one of the best things I can hold onto at this point is some hope so I appreciate the positive comments.

With a  young family and 2 very young children I need to hang onto some hope so I'm glad that the comparison has shown that there has been response to the Gem/Oxali regimine and will pray that I continue to respond.  I need to be around as long as possible for my family!

Rick

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: Strange test results - good or bad?

Yeah, Rick what a wonderful early Christmas present!!! You are a survivor! We love news like that!  Thank you so much for the good news.

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: Strange test results - good or bad?

Rick,
I agree we all have to hold on to hope. I am glad you got the good news. I hope it continues.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Strange test results - good or bad?

Rick.....the positive response to your treatments is the best news one can hope for.  I am happy for you.  Congratulations.
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: Strange test results - good or bad?

Yahoo!!! I read your caringbridge post but it did not mention the Mayo results. I'm so happy for you and your family!

Re: Strange test results - good or bad?

Hi Rick,

Thanks for sharing the great news! It is always good to hear good news and I also agree that holding onto hope for the future is always a good thing.

Positive thoughts and I hope the good news continues for you.

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.

Re: Strange test results - good or bad?

Great news, Rick!!  That's so wonderful. xx

"Time may be a great healer, but it's a lousy beautician."

Re: Strange test results - good or bad?

We are all SOOOOO happy for you!

Kristin

Peace, hope, and healing to all!

Re: Strange test results - good or bad?

Rick,

Fabulous news!!!! Here's to a great Christmas for you and your family,

Katie