September 4, 2008 at 4:45 am #22375
We have had a meeting with the oncologist and he said “please forget the statistic on this kind of cancer, I can tell you all statistics of other cancers such as breast, stocmach, lung…. but this CC, I CAN’T, since it is too rare to make a proper statistic”. He also recommend us a Chemo, normally patients start chemo 6 weeks after the surgery, however for my Mum, since she had a lot of complications so she need a longer waiting period (8 months), it means we may have Chemo by the end of September.
Hope everything is fine. Thank you so much for your advices. As the oncologist said, we believe that “this is the time to FINISH CANCER!!! Why dont we do it???”
Be cheerful and take care, my dear friends…!!
Hai MinhSeptember 2, 2008 at 12:28 pm #22374kristinParticipant
My original tumor was about 4 cm, they removed it completely with clean margins and no lymph nodes were involved. (They also took out half of my liver.) So, that was the best-case scenario. The surgery was really hard on me, so afterwards I was VERY happy to hear that no further treatment was recommended. I feel now I should have asked more questions. I also think that the radiation I had after my recurrence was a very effective treatment, and the side effects weren’t too bad (fatigue and heartburn.)
To correct what you said, I haven’t had chemo yet (except for Xeloda) so I don’t know how hard that will be. Keep in mind that patients always have to wait at least a month after surgery to have chemo or radiation, because both of those interfere with the healing from the surgery.
And Kris, thanks so much for the kind words. YOU are a big inspiration to me! I was lurking on this board for months before I started posting, and your grit and determination and humor always give me encouragement!September 2, 2008 at 1:23 am #22373
These are really useful information and reccomendations, thank you all for your great supports. Ofcourse, everyone will choose to have chemo as a piece of mind, even the doctors.
We have asked the doctors to have chemo but they said we need to balance the good and bad sides of this, chemo may destroy you before the cancer recurrence. He also said “if I could not achieve the clear margin (during the surgery, he had a further cut and he saw no cancer cells under the microscopic in 2mm margin to the liver) and the lymph nodes were positive, for sure I will suggest you to have chemo and radiotherapy”.
Is chemo really something awesome?? if she cannot stand it, can we stop the chemo at any time?
Anyway, I catched your ideas from your messages, and I will follow it. We will see the oncologist tomorrow to mention this again, at least this is the best thing that we can do for her now, and hope that everything would be fine.
One more problem is she has been 6 weeks since the surgery already, and she only can have poridge for 2 weeks more due to the bowel obstruction. All blood test is good. Can she have cheme now? If we have to wait longer, is it too late for her to have chemo. Kris, how long had you been late for the chemo after the surgery?September 1, 2008 at 8:37 pm #22372
I had clean margins, my tumor was a bit bigger than a pea. They removed a whole lobe of the liver, they were going to remove more, but when they saw how small the tumor was they just removed the lobe that was affected. I had no lymph node involvement. Dont know about the blood tests.
From pubmed, a selection of journals and titles the suggest chemo after resection helps survival
Surgical management and prognostic factors of hilar cholangiocarcinoma: experience with 115 cases in china.Yubin L, Chihua F, Zhixiang J, Jinrui O, Zixian L, Jianghua Z, Ye L, Haosheng J, Chaomin L.
Hepatobiliary Department, Guangdong Provincial People’s Hospital, Guangzhou, No 106, Zhongshan 2 Road, Guangzhou 510080, PR China. firstname.lastname@example.orgQuote:CONCLUSION: Resection with anastomosis and postoperative chemotherapy results in longer survival time compared with no chemotherapy postoperatively. Positive excision margins, metastases, adenoacanthoma-type tumor, poor or unknown histological differentiation
Outcome of surgical treatment of hilar cholangiocarcinoma.Otani K, Chijiiwa K, Kai M, Ohuchida J, Nagano M, Tsuchiya K, Kondo K.
Department of Surgical Oncology and Regulation of Organ Function, Miyazaki University School of Medicine, 5200 Kihara, Kiyotake, Miyazaki 889-1692, Japan.Quote:Adjuvant chemotherapy may increase long-term survival.
Prognostic factors in patients with advanced cholangiocarcinoma: role of surgery, chemotherapy and body mass index.Farhat MH, Shamseddine AI, Tawil AN, Berjawi G, Sidani C, Shamseddeen W, Barada KA.
Division of Hematology- Oncology, Department of Internal Medicine, American University of Beirut Medical Center, Beirut, 110 72020, Lebanon.
World J Gastroenterol. 2008 May 28;14(20):3224-30.Quote:CONCLUSION: Our data show that palliative and postoperative chemotherapy as well as a bilirubin level < 10 mg/dL are independent predictors of a significant increase in survival in patients with cholangiocarcinoma.
Our experiences in surgical treatment for hilar cholangiocarcinoma.Maeno H, Ono T, Yamanoi A, Nagasue N.Hepatogastroenterology. 2007 Apr-May;54(75):669-73.Quote:Postoperative adjuvant radio-chemotherapy after resection improved their prognosis (p = 0.010).
There are more, but I am getting sad reading about it all so I need to stop searching for you for my own good. I do hope these have helped.
KrisSeptember 1, 2008 at 7:42 pm #22371lucianParticipant
My partner got treatment in China, sort of combined chinese medicine with chemo small amount , his case is inoperable intrapetic CC, there i heard from the doctor that statistics tells that the higher survive rate from the people who had operation but no chemo, this to support the theory that chemo may destroy the immune system, which is very important to fight cancer. This is just for reference, I am not a doctor, I tell only what I heard.
Also for info, this hospital claim their medicine be effective on reducing the chance of reocuurence after surgery, and cancer be treated as chronic disease like high pressure, by taking the medicine, the tumor can be hold still. It is my wander how mature/real is this but it is the hope we have.
My partner got the first treatment June last year (diagnosed in April 07), it was so effective that stent could be removed afterwards. Treatment continues and CT-scan about each 3 months, CT-scan result showed regression until last scan which was in last July, the size was slightly increased than the one in last April 08, (3.5cm~3.1cm) hospital report called it stable though. He worked like a dog in May so it was not really surprising to me. Now plan to finish the 6th treatment then see what next.September 1, 2008 at 7:31 pm #22370jeffgMember
Haiminh…. From years of research, I’ve concluded one thing is that this cancer is systemic. Despite clean margins as I was told upon completion of my surgery, the CC did return, as so with many others. Clear margins simple means success for that particular tumor removal and does not mean that something that can’t be seen is still present. Chemo after surgery would in my opinion, if it is going to help, a few rounds can give you a peace of mind. Like you said, at least you to it one step further to make sure you in the furture you wish you did. Ask your Oncologist, is or is it not a systemic disease and if there is some chance chemo just might knock out any free radicals floating around awaiting to find another nesting spot? Go from there my friend. We all have opinions and we all have to make those gut wrenching choices.
Jeff G.September 1, 2008 at 1:23 pm #22369
Hi Kristin and Kris, ofcourse we dont just rely on the statistic, because even they say under statistic the survival rate is 99%, it doesnt mean that we will not fall into the rest 1%. But we should believe in God , everything shall be fine!!
What I want to know is how about the result of your surgeries: Did they completely remove the tumor? Did they test the lymph nodes? Was the margin clear? and if possible, how about the blood test before and after your surgeries??
I understand that it is not proven that chemo is useful for this kind of cancer, however I still want a chemo after the surgery, so in case of recurence, we will not have any regret. But the doctors, they still recommend us that we should not have a chemo at this time, because of the success of the surgery. That’s why i need to have your advice and the result of your surgeries.
Kristin, im very happy to hear that you are doing well and no side effect from the chemo, and it was wonderful that the chemo has been useful to stablise the tumor. Best luck to your next time!!!September 1, 2008 at 11:15 am #22368Kristin wrote:Every case of this disease is so different. You really can’t go by statistics, I feel.
I definately agree about the statistics…I hope I didnt come across too statistic based. Those statistics are based over long periods and dont refect new developments or increased doctors experience or who you are and your determination, health choices and mental and genetic makeup. But sometimes it is nice to know if things are more or less likely (not impossible or definate of course!!).
BTW Kristin, how wonderful you are feeling so good. Like Jeff and Peter, you are an inspiration.
KrisSeptember 1, 2008 at 11:09 am #22367kristinParticipant
I had surgery for a Klatskin tumor in Feb 04 (no radiation or chemo afterwards) and a recurrence in August 06, and was then treated with radiation and Xeloda. That kept the tumor stable until July 08, but now it has started growing again and I’m going to start chemo in the next few weeks. I’m doing well and still feel ridiculously healthy– no symptoms at all– and I ran six miles on Friday.
Every case of this disease is so different. You really can’t go by statistics, I feel.
The best of luck to both of you!
KristinSeptember 1, 2008 at 11:08 am #22366
I had quite an unusual circumstance. I was diagnosed and treated in Scotland while I was being a bridesmaid at a friends wedding and at the time lived half in Sweden with my now husband, and half in Scotland finishing a PhD. My Scottish doctor really wanted me to have chemo and I asked if I could have it in Sweden and he said that he saw no reason why they wouldnt give it to me. He arranged for my transfer to Sweden so I could be with my husband. The transfer got messed up, I then got sent to a non specialist (my wonderful doctor I have now). We live in a small town and he sent me to the oncologist assigned to our town. She was SLACK. He asked her to read all the new research and she failed. She denied chemo. We fought for it and we ended up in a meeting with her which she again denied chemo because it had now been too long after my surgery because of the transfer problem and her not looking and asking the right people about my cancer. She said that sorry, we cant give chemo after so long after surgery. When I had problems last year, I had to go to a big research hospital in Sweden and talk to the liver specialist there who was appalled that I was not given chemo and that he would have definately recommended it.
So long story but here is my tally….
2 liver specialists—wanted me to have chemo
general oncologist—denied chemo
general surgeon–had no idea, but believed answer was in recent research
I often wonder what things would be like if I did have chemo, but as of now I am almost 20 months post surgery without a reoccurance. The doctors in Scotland were amazed at how small my tumor was and how early I was detected. One told me that in 13 years of working with the cancer, he had not seen a better case than me. Still, I have read the statistics so I dont hold my breath. Yet, part of me is still quite hopeful. I am now 33 and in another 14 months, if I remain cancer free, I can try to start a family. My husband and I are counting the days and looking to the future, yet there is still this dark shadow. I wonder if I would have had chemo, would that shadow be less because I would know that I did everything I could to prevent a reoccurance. I wonder if it does come back will I blame my husband and that false belief in his country’s medical system. Will he blame himself? There are hundreds of things that run through my mind that I think would not be there (or be less) if I had had the chemo.
So, for me, not having chemo was a big blow. Yet, I know that several people here had chemo after and the cancer still came back. There is no right answer, but for me, I want to know that I did everything…which sadly wasnt the case.
KrisSeptember 1, 2008 at 7:59 am #22364
Hi, yes, i think it is Klatskin because it appears at the confluence of the right and left bile ducts, and it has already invaded all the right bile duct. You also have Klatskin tumor? So what about your surgery, and did you have any further treatment afterward?September 1, 2008 at 5:40 am #22365
I am not sure what a Bismuth, Type 3 tumor means. I know that for my type of tumor (Klatskins), reoccurance is almost a given with statistics from some studies ranging from 0 to 10% cancerfree survival at 5 years. New research also suggests for some types of cc that chemo does slightly increase survival post surgery. Like I said, I have no idea what your mothers type of tumor is, but you can search for it at pubmed and read some of the abstracts for some good information.
Best of luck.September 1, 2008 at 3:49 am #1494
Hi all, I’ve posted sometimes but this is the first time I have this introduction.
My Mum was diagnosed with CC on 15 July: Tumor was in the confluence of the common bile duct, and has already spread to the right bile duct (Bismuth Type 3). Portal vein is not affected. Liver also is still good. AFP, ECA index are normal. CA19.9 is 57.
Surgery was performed on 23 July: They already removed the right lobe of the liver + gall bladder + bile duct and rejoin the intestine with the left intrahepatic bile duct. The pathology report showed that the margin was clear (the free-cancer cells distance is 2 mm to the liver), lymph node was negative (they tested 2 lymph nodes surrouding the tumor).
After the surgery, she was bleeding inside and bowel obstruction. However, today everything went through already (we have been staying in the hospital for 7 weeks). We can leave the hospital tomorrow.
We have asked the doctor on further treatment such as chemo or radiation therapy. The Dr said that in my Mum’ case, with a succesful surgery (clear margin, negative lymph node, the tumor was not really aggressive), chemo is not neccesary at all. What we need to do is just to observe her situation and have regular CT scan, if the tumor recurs, they may have radiation therapy. Anyway, they said that the survival rate in my Mum’ case is quite high.
So, I would like to seek your advices on this. Did any one of you have surgeries like my Mum’s? and afterward, did the tumor come back, and how long?
Thank you so much for your greatful help so far, and hope that we can exchange alot of experience through this forum. I have read alot of treatment after surgery in this forum but I still post this here in detail, so you can understand her case further.
All the best!!
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