Recurrence rate
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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!
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!
Hi Derin,
You asked:
Quote: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/viewtopic.php?pid=54501#p54501
If my explanation is not clear – please let me know!
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!
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,
MarionHi. 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
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.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.
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.
Good morning all. I am a 53 yr old male 7 months post resection of a large 7×11 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.
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!
KateHi 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,
MarionLesley, 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.
I am 19 months post op 40% of left lobe resection for a single mass ( 8×5) 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
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