? I’ve never seen this asked on this board ???

[marions]

Patty….in regards to disease progression you are “stable” and that in itself is something to hold on to. In fact with this disease it has taken on a meaning of high value. You are doing great.
Hugs and love,
Marion

[patty-in-illinois]

My doctor in Houston, Texas states I have had intra hepatic CC for atleast 3 years BEFORE they found it and I have had the diagnosis for almost a year. I had no signs but pressure in the chest. Dr did sonogram of my heart, stress test (appr. two years before diagnosis), and I passed them with flying colors. So I didn’t ask anymore questions about why I was feeling pressure and the dr acted like I was a nut so I blew it off until one evening I had the extreme pain in my chest radiating around my back. Went to e-room (on a Friday evening) and they stated I was having a gall bladder attack. Gave me pain meds and told me to call a gasto dr on Monday. I did, had surgery date to take out gall bladder, but they decided to do a sonogram the day before surgery and that is when they found the tumor inside my liver. Surgery was cancelled. I have seen three mojor cancer doctors who specialize in CC and they all say that my tumor is too big to remove. In the year that I have known about my tumor, it has not grown (with chemo and tarceva)but it also has not shrunk.

[candrews]

When I asked Dr. House the surgeon how long I had CC, he said about 1 year. Now that I look back, I wonder how many symptoms I overlooked for years. Like acid reflux and IBS? Our family Dr. just acted like they were no big deal.

[pam]

My dad passed away last November from cc. Looking back, we think he had cc at least two years before it was found.

[marions]

This is what I have learned: Due to the lack of early detection the majority of patients are diagnosed at an advanced stage of this disease. Cholangiocarcinomas are usually slow-growing and generally do not metastasize quickly. These cancerous tumors can start anywhere along the bile and eventually will cause blockage to the ducts.
We know that the symptoms of advanced stage disease include: chills, clay-colored stools, fever, itching, loss of appetite, pain in the upper right abdomen that may radiate to the back, weight loss and yellowing of the skin.
We also know that choledochal cysts, infection with parasitic worm, liver flukes, primary sclerosing cholangitis, and ulcerative colitis are known risk factors for this disease.
However, it is my personal opinion that chronic biliary irritation should be a red flag for the physicians and cause him/her to investigate the biliary system via: Abdominal CT scan, Abdominal ultrasound, CT scan-directed biopsy, Cytology, Endoscopic retrograde cholangiopancreatography (ERCP,) Magnetic resonance holangiopancreatography (MRCP,) or Percutaneous transhepatic cholangiogram (PTCA.) A liver function test should be performed and alkaline phosphatase or bilirubin levels should be checked.
Will we have to fight the insurance companies? Most likely we will. Will this lead to early detection for all patients? Most likely it will not. But I strongly believe that many of our patients will benefit from the extra attention given and yes, I believe that it could lead to earlier diagnoses of Cholangiocarcinoma. We know for a fact that those patients with early diagnoses and a possible, curative resection have the greatest chance of survival.
My love to all,
Marion

[pcl1029]

Hi,
From my personal experiment .Before my 2nd resection, I monitor the growth of my tumor from 0 in size to 2.1×2.3×3 cm ( 3cm is based on the pathology report,2.1×2.3cm is based on cat scan)in about 12 month. So you may suspect a 5x6cm tumor appeared on cat scan will take about 20 -30month . That is my best guess based on my experiment.
God bless.

[pamela]

Lauren’s doctor said there was no way of knowing. She only had symtoms for 6 months. Pain, weight loss, feeling full after eating a few bites. Thought it was gall bladder problems. First doctor told her she had bad posture and needed physical therapy!!

[betsy]

My surgeon told me based on the size of the tumor, I probably had it for 2 years.

betsy

[kris00j]

My surgeon said the tumor probably started about 9 months before it was found. I finally went to the dr. with pains radiating around from my back to my chest. She said it was classic gall bladder symptoms. I had had 3 previous attacks, but went to the chiropractor as I thought it was my back bothering me again. Adjustments must have dislodged the gallstones, because until the last attack, the pain stopped immediately after adjustments.
I had had the pains for about 2 or 3 years, and sometime after the 4th attack my gall bladder collapsed. That’s how bad it was. But I didn’t have bad gastro problems, nor bad pain very often. No itching or jaundice or any other symptoms.
About a year before diagnosis my ex-husband and I separated and started divorce proceedings, so I was under a lot of stress about the time the tumor started, if Dr. Fong’s guestimate was correct.
Kris

[grover]

Any idea how long you had this cancer before being diagnosed?

Reason? I found swelling under my ribs in the abdomen and knew that was not right. Got appt. late May with family dr. who also felt it, followed with CT scan, the rest is history after tests. On July 8th met with the Oncologist and in the discussion, I asked ” Because I found this swelling, Do you think I caught it early? He answered ” I think you’ve had cancer for 2-4 years.”

I was shocked, floored when they said I had cancer, stunned when it was CC, and shocked when I have had it for 2-4 years.

Obviously, that’s a lot harder to try and track down any situation in your life during that time frame that may have set this CC off in my body. Just wondering if anyone else has asked that question and gotten any kind of answer.

Grover

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