Hi

Hi LeeAnn,

Congratulations on your clean surgery. That’s a great result! My wife had surgery too, but she ended up with positive margins and positive lymph nodes. So our decision was relatively easy… we decided to do both chemoradiation and chemo.

If you keep second-guessing your decision to skip chemo, I suggest that you take a look at NCCN Treatment Guidelines for Hepatobiliary Cancers. A group of cancers that includes cholangiocarcinoma.

http://www.nccn.org/professionals/physician_gls/pdf/hepatobiliary.pdf

You will need to register for a free account in order to access the document.

NCCN (National Comprehensive Cancer Network) is an alliance of 21 leading cancer centers. Includes hospitals like Sloan-Kettering, MD Anderson, Massachusetts General, John Hopkins, Barnes-Jewish, etc etc.

NCCN publishes treatment guidelines for all types of cancer. Think of guidelines as “the current standard of care” or “the current best practices”. They update the guidelines twice a year (I think), to incorporate the latest medical papers.

Back to the PDF…

If you have intrahepatic CC, take a look at slide INTRA-2. For clean resection (R0 margins), they recommend one of two options:

Observe (do nothing)
or
Clinical trial

Note they don’t recommend conventional chemo.

If you have extrahepatic CC, take a look at slide EXTRA-2. For negative margins and negative lymph nodes, they recommend one of 4 options:

Observe (do nothing)
or
Fluoropyrimidine chemoradiation
or
Fluoropyrimidine or gemcitabine chemotherapy
or
Clinical trial

You mentioned someone told you that chemoradiation has to start 8 weeks after surgery and that timing was important. My opinion (and I’m not a doctor) is that timing is critical for someone with positive margins or/and positive lymph nodes. For someone like you – negative margins and negative nodes – the timing is less important. Again, this is just my opinion and I’m not a doctor.

Best wishes,
Eli

LeeAnn,
I didn’t start chemo until 1/13/11, 4 months after the surgery. I’ve had multiple CT’s since then (bile leakage with drains were in and I was on antibiotics until the end of December so chemo couldn’t start until I was done) with nothing to show on the CT’s so far. 8 weeks, 16 weeks, I don’t know if it makes a difference or not. I’m proceeding at this point, Gem/Cis starts tomorrow at 9!!

Derin,

I have not kept up with all the postings lately but I am glad to hear that you had a successful resection. I, also, think that you are doing a wise thing in choosing the chemo followup since you are so young and healthy. My husband was very healthy, too; in fact, he had never been sick until he developed a pain in his right side. He has been fighting for 3 and a half years now and continues to fight each day. He is determined not to let CC rule his life. He had Gem/Cis from January ’11 until October ’11 but had to stop because it was damaging his remaining kidney. His only side effect was that he got so tired and his counts dropped very low. He never took any precautions and did what he wanted when he could. You sound so much like him. I wish you continued success with your treatments and many more years of living life to the fullest. PeggyP

I had a whipple in december 2009 (clean margins, no lymph node involvement) and had 6 months adjuvent chemo (Gemzar) afterward. It was a difficult decision,but for me it was the right one. I had some issues during chemo, but it mostly went well. I did not do radiation.

It’s a difficult decision whether to have or not have chemo. You have to do what you and your doctors’ feel is right.

I look forward to many more notes from you with clean scans

Take care,
-Randi-

Hi LeeAnn,

I had a liver resection in 2009 and I’m still cancer-free. The oncologist said no to chemo/radiation. It’s a difficult decision to make but had I been through so much and had a difficult, complicated post-op recovery that I was relieved with the oncologist’s recommendations.

Betsy

LeeAnn,
I’m 40, and technically wasn’t diagnosed until after my resection surgery but symptoms started late August and 9/14/11 I had my surgery. I’ve got an 11 year old daughter and 13 year old son as well (very close in age to yours too!) I’m similar to you in that I had no lymph node involvement and clean margins. I had the same question that you have, chemo or not? At Sloan Kettering in NY, it was standard protocol with CC to have adjuvant chemo and subsequently radiation with chemo after that. Sooooooo, I’m doing the chemo. Was your cancer present in the liver or just bile ducts? Mine was bile duct only and that was the only location, nothing had spread anywhere else.

My wife and I weighed the options and I would rather do the chemo as a preventative measure versus having a recurrence 5 years from now and wonder if I had done the chemo right up front would it have made a difference. I have had 2 treatments of Gemzar and this Friday after I get home from Houston I’ll have my first Gemzar/Cisplatin treatment (if they give it to me, got 2 nice blisters on my left hand, darn chain saw muffler is hot…). I haven’t discussed with my local oncologist in Sarasota how long we would go for, and Dr. Javle at MD Anderson made the same recommendation regarding treatment even though I had clean margins.

If you read Lainy’s posts, her Teddy was similar in that he had clean margins yet I don’t believe he did any adjuvant chemo and had a recurrence several years later. It’s a very tough decision. Mine was easy in that I’m still young, healthy, and should be able to tolerate it well. We shall see on Friday! In any event, I wish you luck in your decision process. Know that all here offer all the support in the world!!