My Dad was diagnosed with intrahepatic cholangiocarcinoma
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Thanks all for your support,laine my dad is being treated in Lebanon,the surgeon was very good,but i heard from friends that the oncologyst here are not so good,i was thinking maybe i can send his medical file to a specialist in cholangiocarcinoma in the u.s,if anyone know a specialist please let me know
Many thank for all again
Mark:
My thoughts on chemo….my husband Tom had a successful left lobe resection in June ’08…they got clear margins. When we discussed the next steps, I questioned his docs about radiation/chemo and they did not feel that it was necessary because they had clear margins. Knowing what I know now, I certainly wish I had demanded at least a few rounds of chemo. 18 months later, Tom presented with Jaundice and they found a new tumor that involved the hepatic artery, therefore it is inoperable. His then oncologist told us that radiation/chemo would not help and gave him 6 months (at the most) to live.
We did not listen to him and sought other opinoins. He did undergo radiation and oral chemo (Xleoda) and then Gem/Cis for about 4 rounds. To date, he is still here with me. His tumor is shrinking and all his numbers look good. And, by the way, he is now starting the 20th month of life since those words “You have 6 months at the most”.
Tom’s oncologist and cancer team have told us that if he’d had chemo after his successful resection back in ’08 he most likely would NOT be in the position that he is in today. So, my thought is that EVERYONE who hears the words cancer SHOULD have at least a few rounds of chemo (oral or IV) to kill off any stray cancer cells that are most likely floating around in the bloodstream…waiting to attach somewhere and start growing again.
But – it is a personal decision and only YOU can make that decision. Whatever you decide, I’m certain that it will be the correct choice for you. One thing that I have learned since hearing those words “Your husband has cancer, and it’s Cholangiocarcinoma” is that HIS wants and desires and need come first and it does not matter what I want because it is his body and only he knows how he feels.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretDear Mark – It is so good to hear that your dad was diagnosed early which really helps with treatment options. Chemo seems to be the treatment of choice most of the time even when resection is successful. More of a preventive measure. Please let us know. I am so glad that your dad had this report. Keep posting. Blessings, Susan
Mark….a warm welcome from me also and congratulations on the successful resection. It is great to hear that your Dad has recuperated just fine from the surgery. Adjuvant chemotherapy is a hotly debated issue amongst our members and many physicians. I must say though, that within the last two years the trend to follow up surgery with chemotherapy appears to outweigh the non adjuvant treatments. You might want to consider obtaining several opinions from specialists treating Cholangiocarcinoma patients. I believe that the best decisions are those decisions made based on adequate knowledge obtained.
I am hoping for others to also come forward and share their thoughts on this subject, as this is one subject we can never talk enough about.
All my best wishes,
MarionMark, I had similar circumstances. I had a left hepatic lobe resection @ NY Presbyterian 4/09, and still showing no new signs of CC (I think). Following the surgery, at the strong recommendation of my long time cardiologist, I saw an oncologist, who read the final path report a little differently that the surgeon, who recommended no further treatment, given clean margins. The pathologist noted the aggressive nature of some of the removed tissue and the oncologist, based on that recommended six months of chemo (Gemzar), 2 weeks on/1 off.
I would be inclined to go with what the doctors recommend, especially given the likelihood of cc recurrence. Chemo wasn’t all that bad for me, but there were certainly a few low points. The good thing, it has an end in sight, and it may help prevent recurrence. I’m a little over two years and counting from surgery, but still looking over my shoulder.
Good luck with whatever path you choose.
Dear Mark, welcome to our wonderful family. And CONGRATULATIONS on your Dad being a CC Survivor. So happy everything went so well and that his recovery has been so good. One of the biggest decisions our members have is whether to chemo or not to chemo. I would ask the ONC what the prognosis would be with and without. It is a very personal and important decision so make sure you have all the facts. Where is your dad being so wonderfully treated? Please keep us advised of his progress.
Hi all,hope that God will bless all patients and help everybody in need stronger to fight the disease,my dad was diagnosed 2 months ago with a routine check up at the clinic, he had no symptoms at all and was very healthy 65 years old man,the tumor markers showed the ca-19-9 slightly elevated so he had a MRI and a pet scan showing a large mass in the left lobe of the liver with nacrotic character then he had a liver biopsy and the result was intrahepatic cholangiocarcinoma,it was a shock for all the family but then we went to a oncologyst and he recommended us to see a liver surgeon to know if the tumor was rescetable,the surgeon asked for a ct scan,when he had the result he said that he could have a total left lobectomy without any problem,my dad had the surgery done the 6/4/11 everything was good,the surgoen was able to remove all the tumor, he had all the left lobe resected.it has been 1 month my dad did the surgery and he is recovering very good and having back his normal life, we have a appointment at the oncologyst on tuesday to check if he needs chemo or not,the surgeon told us it would be better to have a chemo,but will keep it for the oncologyst decision,i am worry i dont know what is the good choice to take for my dad to have a chemo or not, im really worry, any advise from you people will help us take the right desicion ,many thanks, hope for everyone the best here
) Mark
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