Clean margins / no lymph node involvement – next steps?
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Jean, this topic is rather controversial as to chemo or not to chemo. My case was similar ( hilar tumor in left hepatic duct, resection of left lobe, 1/3 right lobe,gall bladder and partial duct resection, clear margins and no lymph involvement ) My doctors recommended no chemo. I chose follow their advise. I am about 10 weeks shy of my 10 year anniversary of chemo free, cancer free life since discovery of my tumor . I have supported others with this cancer, none did well, all did chemotherapy. One woman, 32 years old with a two year old daughter, died within 24 hours of contracting an infection from her chemo port. This disease can break my heart even when someone has done well. I have told my story many times but everyone is different as their fingerprint. I am sure there are those that did well with chemo, and many will support it, listen to your doctor, he wants you to win if the outcome so far is this amazing. Sounds like your mother has gotten a huge miracle on this one, congratulations, Pat
Jean……. Biliary Cancer are Cholangiocarcinomas (bile duct cancer ) derived by location of occurrence either: intrahepatic, hilar (perihilar) or distal, and gallbladder cancer and Ampulla of Vater.
The ABC study was a multinational clinical trial and the largest study ever conducted on Cholangiocarcinoma patients. The data clearly proved that the combination of Gemcitabine with Cisplatin was superior to treatment with gemcitabine alone. Although not curative but effective, the overall survival on this treatment averaged anywhere from 3 months to 9 months and some to 12 months.
These results established the “first” standard of care for Cholangiocarcinoma patients.Standard of Care is called best practice, standard medical care, and standard therapy and a treatment that experts agree is appropriate, accepted, and widely used.
I like to compare this cancer to that of a chronic disease in that many patients are unable to have a curative resection, but are able to sustain life with repeated resections (with or without other treatments) or have a positive response to other agents.
Side effects are to be expected with nearly any drug. The major issue is how the treatments interfere with the quality of life of the individual patient. It is a very personal decision and that is what I believe you are addressing with your post.
Your husband made the choice for alternative treatment. That makes perfect sense to him and undoubtedly (for him) is the right way to go.
Although cancer chooses us, we, the individuals affected are able to make choices based on what we feel is right for us. Education empowers us and enables us to do so because; ultimately all of us want to beat this cancer.
All my good wishes are heading your way.
Hugs,
MarionDear Jean, I just took a good look at CBD and it appears to me that it is more for psychological relief and not been proven yet for CC. The only proven treatment is surgery and that buys time and with time hope and miracles.
I have been on this wonderful Board now for over 10 years, since the inception and have seen MANY cc Patients lower the size of their tumor by using the first line of treatment which is GEM/CIS. It is hard to read that you were told it will not work when I know of so many that had surgery after treatment.
The best thing one can do even if you swear by your ONC is to get another opinion. All patients are different and react different to treatments but if this is helping your husband I am elated. Some ONCs may go to this when they do not know what else to do but it gives me chills when an ONC says nothing can be done but CBD. It is like the ONC has given up. That is when I would race to another ONC as different ONCs do different treatments. Wishing you the best.Chemo is not effective for cholagniocarcinoma, period. So says the American Cancer Society and many other sites. I would just type in Klatskins tumor and start reading and following the links.
Wonderful about no lymph node involvement and clean margins.!!!Any ONC you go to will go with the standard regimen of Gemcidabine and Cisplatin which is just for general abdominal cancers. There is nothing specific for CC. and the gem/cis chemo is only effective in 20% of cases. And then there are the side effects.
You might want to check out greenbridgemed.com to find out about an alternative treatment that is working for my husband who refused chemo.
I wish your Mom all the best. Sounds like she has a lot of life in her yet. You always have to weigh quantity of life with quality of life.
jean
Congratulations on successful surgery. Hope your mom recovers soon!
I want to share our experience. My husband was diagnosed with ICC in November 2010 and had surgery in December 2010. It was a single lesion (~4cm) in the left lobe at that time. He had successful surgery with clean margin followed by 6 cycles of adjuvant chemotherapy (cisplatin plus gemcitabine) 6 weeks after surgery. However, his tumor came back 4 months after he finished chemo. Recurrence of ICC is high so adjuvant chemo therapy would be a valid option. Please discuss with your onc.
Lee
Hi,
Since Lainy is off for a bit, I’m sorry I can’t offer advice (Mom had unsuccessful surgery), but wanted to add a YIPPEE!!! Successful surgeries and clean margins are worth celebrating.
Looking forward to many more great updates.
Catherine
Hi Fred. I will let you know what the oncologist tells us. I’d love to hear what you’re told as well. I hope you hear great news on Monday. I also hope you sons recovery is going well!
Hello-
It will be interesting to compare notes as our sons Klatskin tumor was surgically removed two weeks ago and we will get the results of the biopsy on Monday. At that time, we’ll also ask about our next steps.
I’ll let you know what our Dr recommends but it will be interesting to see other comments on your post.
Take Care
FredHi everyone. My mothers surgery for her klatskins tumor was performed 1 week ago and she’s now home recovering. She received the pathology results yesterday from her surgeon at Sloan Kettering. She has clean margins and no lymph node involvement (R0 N0)!! We’re relieved with the results after a very emotional week. The surgeon mentioned that his team will coordinate an appointment with an oncologist for later this month. From reading a lot of posts on this discussion board, it seems that chemo and/or radiation may or may not be recommended. I’d love to hear your opinions on what to ask the oncologist, what has worked for others in similar situations, and whether people initially usually consult with multiple oncologists for several opinions. I’m also wondering if course of treatment varies at each cancer center based upon machinery available, doctors approaches, etc. I know some people also see integrative doctors.
I”d love some feedback or pointers on articles/research that may help.
Thanks so much and have a great weekend!
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