Topic: Recurrence rate

Hello.  I am 31 and had a liver resection for intrahepatic cc about 2 months ago. I had negative lymph nodes and clean margins.  When I asked about my prognosis, my oncologist gave me 50/50 odds that the tumor would recur and if it did it would probably recur in my liver.  I think the odds she gave me were extremely overly optimistic. Does anyone have any information on recurrence rates?

Re: 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

Loving my husband from afar.

Re: Recurrence rate

Hello wallsm's and welcome to our site. Congratulations.  Given your positive outcome following the resection, your age, and the increasing research focusing on this disease you are in optimal postition to have conquered this cancer.  Enjoy life and stay vigilant in regards to recommended follow-up care. Life is good, have fun, focus on all the wonderful happenings yet to come your way. 
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Recurrence rate

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

Today is a new day. Congratulations, you are already a survivor!

Re: Recurrence rate

Hi Sue....thanks for popping in on us.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Recurrence rate

Good for you, Sue!

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

Take care!

Susie

Re: Recurrence rate

Hi Wallsm1
I too had the same results from my resection in Jan. 2009.  I am still cancer-free.  The oncologist I saw told the exact same thing - 50% the first year and the percentages go down from there.  The first year was difficult for me.  The doctors kept checking for a recurrence and I was holding my breath.  Its been 2-1/2 years and I am still here.  I did not receive chemo.

Betsy

Re: Recurrence rate

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.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Recurrence rate

I am 19 months post op  40% of left lobe resection for a single mass ( 8x5) of Intrahepatic CC. Surgical margins were clear yet the first lymph node on either side of liver  were positive----but not in any of the nodes next in line. 13 nodes from the front and 8 from the back were sent to pathology and all were clear.
Yet that is what helped me make the clear decision of having Chemo.
I did 6 months adjuvant chemo--Gemzar and Xeloda.
I had tissue samples sent to a lab for 'Molecular Testing'.........but it seems that I went to great expense and effort for something that is in it's infancy and not yet a viable avenue-( so now I surmise that I was taken advantage of).
I consulted with Dr Keith Block in Chicago after having read his book and after having a 4 hour consult with him -I decided to embrace his professional advice whole-heartedly.
I did all this because I am 52 years old and must know that I have done/and will do -all that is possible medically , and from a scientific point of view.
This way of thinking works for me.
I guess that I have rambled on a bit.....the main reason I have posted here is to give hope to the newly resected people by telling you that the CT scan I had done 3 days ago shows @ 19 months after surgery--'no recurrence of cancer at this time'.
Lesley

Re: Recurrence rate

Lesley, wonderful news and we are always ecstatic to hear this kind of good news. It seems that we are hearing more and more good news lately. Like Margaret says, we are really kicking that CC! Keep up the good reports, we love it.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Recurrence rate

Hi Lesley.....fantastic news.  Congratulations on the clean scan and the many more to come your way.
BTW..I still have a CCF bag for you.  Let's get in touch.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Recurrence rate

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

Re: Recurrence rate

Kate,

So glad to hear your Dads scan results were all clear.

Love to you all

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Recurrence rate

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. :-)

15 (edited by Lainy Mon, 10 Oct 2011 10:25:10)

Re: Recurrence rate

Dear Obrienfam5, welcome to our wonderful family where you will find the most courageous and caring people in the world. Congratulations on a successful surgery and recovery, you are already a survivor. You are right, there is nothing conclusive about CC or treatment. It has been a rare orphan cancer with little research so the only thing we know is that we know not much. However, things are starting to turn around. We have learned not to listen to statisics as they are usually old, we very strongly believe in 2nd and 3rd opinions and we know that knowledge is powerful and last but far from least we were not born with expiration dates. Much good luck on your next Scan.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Recurrence rate

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.

Re: Recurrence rate

Hi,
If I were you, I will,in addition to chemo,I will seek a 2nd opinion from radiation oncology consult . If you choose to have a FULL or COMPLETE 2nd opinion on the status of the cancer,Start with a GI (hepatologist)  to get a complete picture of the liver after the resection and ask the question  that you have"chemo or not chemo,radiate or not radiate,or the combination of both at the same time or one after another or just observation only . And why." And if treatment is needed,   Ask who he or she can recommend for such treatment for the best outcome.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Recurrence rate

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

Re: Recurrence rate

Obrienfam and Jelizpar....although, a few clinical trials are underway to this date we do not have clinical data supporting adjuvant therapies.  However this does not mean that patients don't receive it because, they do. 
The question one would want to ask:
If there are no visible signs of cancer would I want to undergo therapy without knowing whether I would benefit from the treatment? 
The answer you would want to hear:
I/we have treated patients in similar circumstances with .....such and such a benefit. 
Or
based on these studies I believe this to be the best course of action.
or
If it were me or one of my family members I would ......

Obtain several opinions and don't be surprised to receive various answers, but at least you know that you have had some power in the decision making. 

I am hoping for others to chime in and share with you their reasons for making a similar decision.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Recurrence rate

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!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Recurrence rate

Hi Derin,

You asked:

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.

Please see my post in your thread, "What Chemo should be used for me?".

http://www.cholangiocarcinoma.org/punbb … 501#p54501

If my explanation is not clear - please let me know!

Re: Recurrence rate

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!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Recurrence rate

And, they really can't aim it at the location where the tumor 'was' and hit my liver at the same time it grew back in the other direction.... The tumor was at the bile duct branch just inside the liver, my whole right lobe was removed, half the left, so where the tumor 'was' is just small intestines now. My liver is totally on the left side of my body and not even close to the shape of a normal liver either! I'll definitely have questions to ask, that's for sure!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...