Recurrence rate

Hi,  I searched "recurrence rates of cholangiocarcinoma after resection" and read a few articles. Her odds of 50/50 were pretty consistent with what I read. Are you getting chemo? The "jury is out" on getting chemo after resection but I would look into it and make your own decision. My husband is advanced stage 4 so was not operable. We chose palliative chemo (finished May 18th) and he gets naturopathic support. He has had no growth since February. I highly recommend naturopathic support but realize it's not for everyone. Will tell you more about it if you are interested. Keep positive, your cups half full! Best wishes. Nancy

Hello,

Your diagnosis sounds like mine, and I too had a resection with clean margins (and no chemo).  My doc also gave me 50/50 odds and I am now at 4 years, 5 months with no recurrence!!  So you see, it truly is possible to have no recurrence.  I know it can come back at any time, but my doc said the more years you go without one, the less likely it is to recur.  So, I am moving full steam ahead with my life.  It was very hard in the beginning, but you have a great start.  Good luck to you and please stay on this site.  People here are an amazing source of help.

hugs.
Sue

Good for you, Sue!

I am starting adjuvant chemo next week with Gemzar and Cisplatin.

Take care!

Susie

Susie, I had a resection 4/09, and am still clean.  I had only Gemzar, based onc's strong recommendation.  Chemo was a six month deal started about six weeks after hospital discharge.

Good luck.

My dad is also 19 months post surgery for a small (2cm) tumour with clean margins but 7 positive lymph nodes.  He had 6 months xeloda.  His scan results this last thursday said all clear.

Not sure where doctors actually get this 50/50 recurrence rate from, but it seems that as Sue says, the longer you go, the less likely it is to return.  Although there will always be exceptions to that.  The trial that my dad is on is measuring progression free survival with or without chemo after resection with 2 year survival as a primary goal.

Great to hear you're well Snezzie!
Kate

Good morning all.  I am a 53 yr old male 7 months post resection of a large 7x11 cm intrahepatic tumor in the right lobe.  My surgeon was able to remove it with good margins however did not take any lymph nodes.  He did not recommend either chemo or radiation. Had first followup CT and all looked well with the liver thought one small spot on left lung that we are not sure if it is an issue or not.  Plan to re-CT in 2 months. have been reading a lot on prognosis and treatment with little clear conclusions. Lots of literature seems to focus on hilar vice intraheptic and data does not appear to differentiate well between those cases involving younger versus older patients. Also data regarding chemo and radiation seems inconsistent. Very glad to read this entire post. A great psychological lift in a sea of what otherwise appeared to be very bleak news. :-)

Dear All:  So that appears to be the big question and the one my husband faces next after resection.  To chemo and radiate or not to chemo and/or radiate?  Should we just go with the recommendation of our Oncologist.  This seems to be a confusing one.  Also how sick does the therapies seem to make the patient?  I had Stage I/II breast cancer and had chemotherapy and had no problem at all with being ill.  Same with radiation.  Just was wondering what life is like during therapies for CC patients should my husband decide to opt for therapy.  Hmmm - so much to think about and research.

Hi.  I had both chemo, Gem/Cis and radiation in combination with Xeloda.  I tolerated Gem/Cis really well and am still receiving it.  The radiation was difficult on me.   I think radiation side effects for CC are different than that of breast cancer, because they're aiming the radiation near the GI tract, so you tend to get some GI side effects, at least with my experience.  I had irritation to my esophagus and stomach.  Bad acid reflux with lots of vomiting towards the end.  But I did get better 2 wks after radiation ended, just like my Dr's said.
My experience with breast cancer patients who have received radiation is they seem to suffer from fatigue, radiation burns and sometimes lymphedema.  I did not get any radiation burns but a slight tan on my skin.  My oncologist explained it to me that with breast cancer patients they are radiating tissue and they radiate you all the way to your skin, so burns are very, very common.  But with CC, they were radiating an organ so the goal was to keep it internal, so no burns for me.
From your post, it sounds like you are now breast cancer free so congratulations on that!! How wonderful you did not get a lot of side effects when you had chemo and radiation.  I have spoken with some breast cancer patients when I get chemo and they all seem to have such a rough time with chemo, I feel so bad.
Best wishes to you and your husband.  It is a hard decision as what to do post resection.  I had 3 opinions form major medical centers and they basically all told me something different.

Take care!

Susie

Sue,
Looks like you started Gem/Cis in July last year. You also mentioned that you are still on it as of 2 weeks ago... How long are they saying that you should continue the adjuvant therapy? One other question, did you have a tumor in the liver itself or was it located elsewhere?

My reason for asking, I had resection of liver/all bile ducts removed, gall bladder removed, clean margins, no lymph node involvement, and the tumor was 1cmx0.7cmx0.5cm located in the bile duct only right at the branch just inside the liver. I have had 2 treatments of Gemzar alone and the last 2 treatments were Gem/Cis but we haven't really discussed time frame. I'm also told radiation with oral Xeloda after the chemo, but what are they going to be shooting it at? Everything was removed and the liver didn't have involvement so I'm a bit curious about that as well.

Any info would be helpful. Thanks!

It was, I was just wondering if anyone else had similar experiences with the radiation element. I appreciated your response too, it was helpful and educational too!