November 8, 2010 at 1:28 am #43549
Dear Johanna, I was a little confused, we went to University of Pittsburgh Medical Center, so I was going crazy looking for your doctor, which obviously wasn’t there! I am hoping the chemo goes well and does the job on the tumor!! Take care!! JennyNovember 8, 2010 at 1:18 am #43548
Hi, I’ve actually been checking out the website for a while now but I must not have registered right or something the first time I was on so I re-registered a couple months ago. I will go back and introduce myself again. Sincerely, JennyNovember 7, 2010 at 9:40 pm #43547
The surgeon I saw at Penn was Dr. Giorgos C. Karakouis. A very young surgeon. He said he would consider operating if my tumor shrunk away from the porta. I am hoping for the surgery! Sincerely, JohannaNovember 7, 2010 at 2:52 pm #43546katjaMember
I notice you have posted a few times but not your full story? It sounds like maybe you could post in our good news/what’s working section – is your husband currently doing well?
Thanks for joining us!
KateNovember 7, 2010 at 2:07 pm #43545
I agree with Lainy!! So glad you have a plan set now!! Did you go to UPMC and if so which surgeon did you see? Good luck on Monday, will definitely be thinking of you!! JennyNovember 6, 2010 at 2:04 pm #43544lainyParticipant
Johanna, I am so very proud of you! Look at you, from ‘freaked out’ to wonder woman with boxing gloves! You go girl and good luck on Monday.November 6, 2010 at 11:53 am #43543
I went to U of Penn on Tuesday for a second opinion. I really like the oncologist and the surgeon spent one hour with me. The surgeon wants me to go through chemo first and then reassess the size of my tumor. The oncologist did offer me a phase 2 clinical trial but I opted for the standard protocol.
I had a lung CT yesterday, of course I don’t know the results yet. I start chemo on Monday.
Thanks for all your help on this site. I have my boxing gloves on!!!
Sincerely, JohannaNovember 2, 2010 at 1:15 pm #43542
I found out yesterday that my CC is Stage IIIB intrahepatic carcinoma. I will start on cisplatin and gemzar on Monday to shrink the tumor. I am still holding out for surgery. I go to Penn today and Dr. Pawlin at Johns Hopkins wants to see me also. Thanks again for all your support and ideas. Sincerely, JohannaNovember 2, 2010 at 1:04 pm #43541hopeandgraceMember
My mom’s tumor was initially not resectable (she was perfectly healthy, asymptomatic besides some pain in her left side and they gave her three months to live). Our hope was the chemo could shrink it to where it could be removed. After a chemo-embolization and Gemzar/Cisplatin, it became small enough and in a position that was favorable for them to remove it. Be aggressive with treatment and put on your fighting gear! She was treated at UPMC’s liver cancer center (Pittsburgh).November 2, 2010 at 4:58 am #43540sallypaMember
when my sister was first diagnosed with cc in july she was told her tumor was inoperable. her only chance was chemo in hopes of shrinking the tumor so they could operate. we sought out 2nd, 3rd and 4th opinions. we went to the university of pennsylvania hospital and the dr felt strongly that he could do the surgery. he originally thought by looking at the reports that he would do a bypass of the vein but when he got in there he didnt need to as the tumor was pressed up against the vena cava but hadnt damaged it. he got the tumor out with a 2mm margin. not the best of margins but the tumor is gone. my sister is now going thru to chemo and radiation in hopes that the cancer will not return. the lesson we learned was to keep looking for other opinions. i wish you all the best.November 1, 2010 at 11:46 am #43539
Thank you, I am anxiously waiting for a phone call from a Dr. Hertl from Mass. General today about a resection. If not, I believe I will seek out Johns Hopkins or the Mayo Clinic for a second opinion.
I have been told be 2 local doctors that the tumor is impossible to resect. I appreciate your support-I want to live and will not give up on this. JohannaNovember 1, 2010 at 11:37 am #43538mlepp0416Participant
Tom was dignosed in March 2008, had his resection in Jun 2008, presented with Jaundice in Nov 2009, rad/chemo starting in Jan 2009. His initial tumor was in the left side of the liver and was very small about 2.5cm. His 2nd tumor was also very small but caused a lot of damage/ blockage.
They told tom he had 6 months in Dec 09, and he is still here.
Did you seek another opinoin? Run don’t walk to another doctor or to a center that has experience with CC. Don’t take no for an answer.
You can read more on my husband’s journey under introductions “my husband and Cholangiocarninoma” and “my husband and Cholangiocarcinoma – part 2”.
One thing I have learned is that it’s not necessarily the size of the tumor, it’s the placement of the tumor that can cause all the problems.
Go with God and KEEP KICKIN’ THAT cancer.
MargaretOctober 31, 2010 at 9:50 pm #43537
Thank you Margaret. How long has your husband been diagnosed with CC? I have no jaundice, my bilirubin is normal because the tumor is not impeding the vein or artery.
Do you mind me asking how big the tumors were? My tumor is 10cm.
I hope you don’t mind me asking these questions.
My oncologist told me I have 6 to 12 months to live-I don’t even look sick! I have lost 12 pounds just from worrying before I got a diagnosis.
Sincerely, JohannaOctober 31, 2010 at 9:13 pm #43536mlepp0416Participant
Johanna: That is exactly where Tom’s tumor is and they tell us that it is inoperable. He did have radiation to kill the tumor, but the dead tissue is still blocking the bile duct or may have destroyed the bile duct, therefore they cannot get a stent in and he has to wear a external drain for the rest of his life. We have been to Mayo twice and even they are unable to get an internal stent in.
If the mass were in either the left lobe, or the right lobe then a resection could be done. Tom’s original tumor was in the left lobe and he was able to undergo a left resection, but his new tumor is right at the juncture you explain and they are unable to do another resection. The main vein that feeds the liver is involved and no one would touch it as he would most likely not make it through the surgery due to blood loss.
Go with God.
MargaretOctober 31, 2010 at 5:54 pm #43535
Sorry Lainy-can you tell I am a little freaked out! Johanna
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