mlidoudou
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Dear Margaret,
May I ask which type of CC did your husband have? Was it Klastskin, intraheptic or distal CC? I am surprised to find that your oncologists said that if your husband had received chemo/radiation, his CC would not come back because we know that adjuvant therapy may or may not prevent recurrence. Some of the people on this site have had adjuvant therapy but their CC still came back. Isn’t this true?
Maggie
Dear all,
We have finally consulted 6 doctors about adjuvant chemo/radiation therapy for my mom who had her surgery 5 weeks ago. Here are the results:
Mom’s hepatobiliary surgeon: no adjuvant therapy because there is no evidence that it is effective in lowering the chance of recurrence and mom’s liver is too weak now to withstand chemo/radiation
Another hepatobiliary surgeon: yes for chemo but no for radiation because this type of cancer will come back even if the resection is successful. If receiving chemo, should wait for liver function to improve.
Another surgeon: no because mom is old and may not do well with chemo and radiation
Canadian oncologist: no because there is no evidence supporting benefit
HK oncologist: no because there is no evidence supporting beneifit and mom’s condition (old age and diabetes) is not favorable
Another HK oncologist (radiation specialist): yes for both chemo and radiation but her liver needs to monitored closely. Chemo/radiation adjuvant therapy will increase her survival by about 12% (this sounds vague and I am not so sure what this is based on). Should start chemo/radiation now (~4-5 weeks after surgery).
So 2 doctors are for and 4 doctors against adjuvant therapy. Even the 2 doctors which support adjuvant therapy have different opinions.
What do you all think? I am quite surprised to find that the two HK oncologists have different opinions because they are both private doctors. I am equally surprised by the different opinions from the two hepatobililary surgeons. I think if I consult more doctors, the opinions would likely split close to equal and this exercise will become meaningless. The majority of my family members feel that we should give up the option of adjuvant therapy for my mom and we will not present this to her as an option. This way her burden is less, both psychologically and physically. I hope our decision is right and only time can tell.
Best wishes to all of you,
MaggieMy mom has started her coriolus versicolor a few days ago and has improved appetite as predicted by the Chinese doctor. It is supposed to help reduce the side effects of chemo and radiation too.
Maggie
Dear Dale, Minh and others:
I would like to know your experience with post-surgery liver enzyme levels. My mom’s ALP and GGT levels were high (~500 and 1500 respectively) when tested 1 month after surgery. Her bilirubin level was within normal range. Her CA 19.9 dropped from 900 (pre-surgery) to ~40 after surgery. The other enzymes (AST and ALT) were normal or closed to normal. Did you notice that all these enzymes became normal again after surgery? If so, when? Also, I am planning to take my mom for a trip. When do you think is a good time? Should this trip be planned around her CT scans? Right now, we are not exactly sure when she will have her first post-surgery scan. We have asked the doctor, but he gave a different answer each time, ranging from 1 to 3 months post-surgery. Another question that I have is when should my mom take her anti-cancer supplements (coriolus versicolor and immunocal). I presume when the liver function is back to normal (after 6-8 weeks?). Her surgeon never really gave us a clear answer. Do you all have any suggestions?
Thanks,
MaggieIf he is on IV, then it is very easy to gain and lose weight. When my mom was in the hospital, she was on IV insulin, dextrose and sodium chloride. She was also connected to a urine bag so she did not have to get off her bed to the bathroom. Just from looking at her, I could tell she had water retention in her face, abdomen, arms and legs. I am sure she gained a lot of weight back then. After they removed her tubes and her kidney function back to normal, I could see her swelling going away and I was sure her weight was dropping a lot. But we did not weigh her because she gets too anxious and we dont want to give too much pressure on her.
Maggie
Hi Minh,
Thanks for your advice. I am not sure about your mom, but I think an added advantage in giving up adjuvant therapy right now for my mom is that she can feel happy now. If I tell her the odds, she may be very unhappy. She is the nervous type and she was so scared before her surgery and was on anti-anxiety drugs after her diagnosis. Before we knew that she could be treated by surgery, the outlook was very very grey. We all felt that we should prepare for her passing. Now I am having my tears, after so long…I was pretending to be strong especially in front of her and indeed it is very hard on myself. The thought of her becoming sick again, maybe in a few months just kills me. The burden of making this decision on adjuvant therapy is very heavy. Luckily, I have a sister who is sharing this burden. How did your mother handle this decision when she finished her surgery? Eventhough my mother had a smooth recovery in general, she suffered for the first few days. She was basically not herself possibly due to the morphine that she was on. She also almost had a heart attack as complication but somehow that problem corrected itself (may be due to the constant praying that I did for her during that time). She just mentioned to me today in tears that those 3 days were like in hell, fighting with the devils. She also mentioned that she would rather die if she had to endure another surgery like that. So I just hope that she is in the other 50% population that the cancer never comes back, but unfortunately adjuvant therapy does not garantee that. Such as life! Despite all the headaches in making such decision, there is some wisdom that came out and I would like to share with you all. I read somewhere in this forum that some Chinese doctor mentioned about the disadvantage of adjuvant therapy in weakening the immune system. Perhaps if Kris had adjuvant therapy, her cancer may still come back but her immune system may have been compromised. So her response to the treatment right now may not be as good. So Kris, think on the bright side. Another good point raised by my mom’s surgeon is that if she received treatment right now, she might get so sick and if in case the cancer comes back in the future (as adjuvant therapy does not garantee that), she would be too scared or too weak to get treatment.
Best wishes,
MaggieAll of the published papers in HK were written by surgeons and my mother’s surgeon has published a few papers on hilar cholangiocarcinoma. Therefore, I think he is quite experienced in this kind of surgery. I have just gotten a second opinion from a Canadian oncologist and she also agrees that adjuvant therapy is not indicated for my mom’s condition. I am waiting for another opinion from a radiation oncologist in HK. It looks like we will give up the idea of adjuvant therapy. Considering my mom’s age and her other medical conditions (diabetes and spine problems), it may not be a good option for her. If I have the same disease, I would definitely fight to do everything to prevent it from coming back.
My congrats to Dale also for your success in keeping this monster away!
Maggie
Dear all,
Thanks for your advice. I have just called MD Anderson but unfortunately they only give evaluation when they see the patient. However, I found out that Sloan Kettering can do consultation by mail. But it is $$$$ 2000. I am not sure if I want to pay so much for a consultation.
Maggie
Thanks Dale and Marion,
I would very much like to consult other cancer centers about my mom’s case. Do you think places like MD Anderson could be consulted without seeing the patient? I have all her reports from ultrasound, MRI, CT scan, PET scan and post-surgery pathology report. Your advice is very much appreciated.
Maggie
Dear Dale,
Thanks for your info and advice. My mom was not treated at a cancer center. She was treated by a private surgeon who appears to be not as update on the medical oncology aspect of cancer. This was mainly indicated by his lack of knowledge on extra vs intrahepatic CC when I asked him about my mom’s case. I think he is a good surgeon for CC and he is extremely busy with the many patients in Hong Kong. However, I have doubts about his scientific knowledge on the management of CC other than surgery. He even told my mom that there is no oral drug to treat CC, but obviously xeloda can be given orally. When I asked him about the possibility of adjuvant therapy using xeloda, gemzar, tarceva and radiation, he felt that he was challenged. He did mention that if I consult an oncologist, he/she would likely agree to chemo treatment just because of wanting to do business. He also said that radiation would be harmful to my mom’s liver which is already weak after surgery. By the way, she had 70% of her liver removed. How much of your liver was removed? How many cycles of radiation did you receive?
Maggie
Dear Marion,
Thanks so much for your encouragement. My mother’s diagnosis and prognosis has made me so worried simply because I am a pessemistic person. I understand her condition is considered quite favorable considering many others have more advanced stages. Initially, I am very thankful that we found her surgeon because he seems to be very competent and experienced in CC in Hong Kong. However, after a private consultation with him yesterday (without my mother around), I have second thoughts about him. He seems to be very subjective about his opinions on adjuvant therapy, which he is against. He does not even leave it an option for us to consult an oncologist. I do not want to upset him because my mother still needs to rely on him for follow ups. I dont want to be overly negative but I cannot help myself thinking the worse. What if the surgery did not go as well as he has claimed? I feel a little uncomfortable giving our trusts entirely on one person who has so much power on my mother’s well being.
Other than adjuvant therapy, we are also thinking of letting my mom take coriolus versicolor and immunocal as supplements. We are also planning to take my mom to vacation when she gets better from her surgery. Who knows if or when the cancer will come back?
Maggie
Dear Dale,
My mother had her surgery one month ago in Hong Kong and she also had clear margins, but like yours, they were small (0.1 cm in some areas). However, her surgeon is against chemo and radiation because he thinks that she would suffer and the treatment would not help in lowering her chance of recurrence. He is so stubborn that he does not wish us to consult other oncologists in HK.
I still have not completely abandoned the possibility of adjuvant therapy for my mom. I am wondering how long after your surgery did you have your radiation and xeloda?
Maggie
