Diagnosis problems

Rosalie,

Nothing worrisome is awesome news, but if you are worried or confused ask your Dr. exactly what that means, maybe a better definition will put you at ease. In the meantime…..as Lainey would say….I will do some cartwheels of happiness over this news!

Melinda

Hi Rosalie,

Mom’s operation was in Nov 2013. She then did 3 cycles of Gem/Cis which shrunk the tumor a bit,and then she had first SIRT in Feb. 2014. Although that treatment killed much of the tumor, we decided to attack it again and had a 2nd SIRT in Nov 2014. For the 2nd SIRT, she took xeloda for 2 weeks before and after. Since then, both CT and PET scans have shown no evidence of disease. The doctor used the term remission, and we hope it continues. She gets scans every 3 months and have one later this week.

Best wishes,
Catherine

Rosalie,
I truly hope surgery is in your future. However, if not possible, do no look to outdated statistics that do not apply to all. Mom’s surgery was aborted after they opened her up, so we thought we had our last holiday season with her in 2013, but another one is just around the corner and she’s feeling good. There still is hope.

Best wishes,
Catherine

Rosalie, please do not give up hope, especially if the tumor is localized! Surgery can still be possible with neoadjuvant chemotherapy or radiotherapy (ie. Shrinking the tumor first). My mum was told that they could not perform surgery and she’s currently receiving chemotherapy to shrink her tumor which is working! So please, don’t give up. Much love for you and your family, Tiah.

Rosalie, I am sorry about your diagnosis but like my Teddy used to say, “now we know what’s wrong, lets fix it !” So now you put on your pink boxing gloves and we begin the fight. Many of our members were told they could not have surgery and then after other treatments were able to proceed with our favorite word……surgery! Please let us know what the Scans show.
Trust yourself, the rest will follow! When first diagnosed you will start out walking slowly and before you know it you will be running with the pack!

Hi and welcome, Rosalie,

Sorry for jumping into the discussion late. I’ve been having problems logging in so I’ve been able to read this board but not respond.

Many CC patients test negative for various scans, tests, etc before they are ultimately diagnosed with Cholangiocarcinoma. By nature of the disease, it can be tricky to find and test accurately. In my husband Mike’s case, he had his first symptom (elevated liver function tests) in December, 2014 and wasn’t formally diagnosed until May, 2015 based on a biopsy of tumor material obtained in an aborted resection. Once he presented with medical symptoms (pain, itching) he had several ERCP procedures with negative “brushing” results, CAT scans, an ultrasound, and a PET scan, all of which were negative. CA 19-9 was also normal. Then a “Spyglass” procedure (essentially a fancy ercp) showed suspicious strictures in the bile ducts, but brushings were again negative. Even when Mike finally had a direct biopsy during the attempted surgery, the results were inconclusive. The slides were sent to a specialty lab where the positive diagnosis was made. (I should note though, that subsequent to the diagnosis, the liver tumor was easily visible in an MRCP.) I think our path to diagnosis is longer than most, fortunately.

My husband was ultimately able to have a successful resection and has been healthy with no sign of disease since the January, 2015 resection. Ours is a story of hope and there are more and more successes presented here each week. If I can be of help in any way to you, please let me know. God Bless in your journey.

debbie