Question about cc tumor that has burst
- This topic has 6 replies, 5 voices, and was last updated 15 years, 7 months ago by
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Hi Barbara, I was diagnosed with cc about 20 months ago and recently had another CLEAN scan!
I was also diagnosed with mild colitis about 9 yrs ago, after my son was born. Even then I knew something was wrong but felt like a hypochondriac…and kept my mouth shut feeling the DRS know best. Well I was wrong and so I agree with everyone else you absolutely need to advocate for yourself and don’t stop until YOU are satisfied. Lots of luck and I will keep you in my prayers. DebBarb….I agree with Carol. I believe that you are very proactive and yes, on this board we have seen tumors shrink. Others may be able to respond to this, also. I would however, send my records to another specialist or two (or three) familiar with this cancer. There is a paper trail for everything in re: to your condition. I would include any scan (CT, MRI, Pet-Scan, etc.) and search out the opinions from other physicians. You would want to inquire about any possible treatment such as Cyberknife or, Sir-Sphere, etc.
Good luck and please, stay in touchHi Barbara, some people respond very well to Gemzar and Xeloda. I hope that you will be one of those that do. Usually the side effects for both of those drugs are not too awfully bad. It sounds like you are being very proactive with the change in doctors. Seeing the doctor every 3 weeks sounds good. We only see my husband Charlie’s oncologist once a month or sometimes every 6 weeks so every 3 weeks has got to be good. Everyone here understands the shock of this diagnosis. Keep researching and being proactive like you are now. Keep us updated on your progress. Hoping for a cure. Best wishes to you and your family!
Carol
Thank you both for your replies to my postings. I live in the outer San Deigo area and was diagnosed at Grossmont Community Hospital. I had pain under my right rib cage for about a week and then developed a fever. I ended up in the hospital there where they felt the liver tumor that burst was an adenocarcinoma and a secondary source so they spent 12 days looking for the primary, which they never found. They wanted to put me on a more generalized chemo and I had little confidence in them so I went to a surgical oncologist, Dr Lawrence Wagman, who just left City of Hope in LA to head the Cancer Center in Orange at St Joseph’s Hospital. He thought he could operate until he took his own scan and saw more areas in my abdomen. He diagnosed it as cc. He referrred me to a medical oncologist at UC San Diego and that is where I am receiving treatment. I have had one chemo treatment so far with Gemzar and tablets of Xeloda. Two weekly treatments and then one week off. I am 60 and the only one in my family to every have cancer so they hit my family and me like a truck. I would appreciate any advice, answers, etc. UCSD is a clinic setting where I only see the doctor every 3 weeks. I want to be proactive about this and fight. Do these things shrink? Thank you all.
Hello Barbara……I would like to follow Kris in welcoming a newbie to this site and although, as you may have seen from previous postings I wish we could have met under better circumstances. But, here we are, and together we stay. To answer some of your questions:
The Cholanciocarcinoma Foundation brochure describes:
What are the risk factors for developing Cholangiocarcinoma?
Research has shown that some disorders may increase the chances of developing cholanciocarcinoma. Disorders leading to increased risk include the following:
Primary sclerosing cholangitis: chronic inflammation of the bile ducts
Chronic ulcerative colitis: chronic inflammation of the bowel
Choledochal cysts: sac-like structures forming off the bile ductsWhat I have seen is that there are also other “possible contributers” leading to the formation of this cancer and you might want to “google” bile duct cancer or cholangiocarcinoma.
There are other postings on this site discussing lesions which have formed in the abdominal cavities. Seems, this cancer has a mind of his own and our JeffG describes it as liking to playing hop scotch in our body.
If you don’t mind me asking: where have you been diagnosed and have you considered more then one opinion, so far?
Please, stay in touch and again a warm welcome to you.Sorry I cant offer any insight, but I did want to welcome you to the board. You could try searching the forum for crohns as a keyword. Hopefully someone will come in soon and give you some insight.
Kris
I was diagnosed in October and my tumor in the liver burst and spewed cells into my abdominal cavity and I now have at least 3 lesions that are growing rapidly. Does anyone else have this condition? Does anyone else have Crohn’s or colitis with cc? I have seen information that people with people with these conditions have a high percentage of getting cc. I have Crohn’s and now cc. Thanks. I am a newbie.
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