February 4, 2012 at 12:41 am #57249EliSpectator
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.
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)
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)
Fluoropyrimidine or gemcitabine chemotherapy
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.
EliFebruary 3, 2012 at 11:03 pm #57248lisacraineSpectator
LeeAnn. Such wonderful news. I am so happy for you and your family. Keep up the good fight. LisaFebruary 3, 2012 at 7:18 pm #57247leeannSpectator
I’m so sorry to hear about your daughter.
Also glad to hear that chemo is helping and hoping she too could have surgery soon. I’m sitting here reading everyone’s post and still wondering if I made the right choice not going through chemo since I had clean margin. I feel like the surgery was the easy part and waiting game is the most difficult part of this caner. Well, at least for me.(maybe I’m thinking too much lately)…
Anyway, I should get ready to pick up my kids from school and take them to gymnastics practice.
Have a great weekend everyone….
Aloha, LeeAnnFebruary 3, 2012 at 3:15 am #57246pamelaSpectator
Hi Lee Ann,
I just wanted to pop in and say hello and wecome to this site. There are so many wonderful people here and I hope you visit often. You already seem to have gotten a lot of great advice. My daughter has CC and is not able to have surgery at this time. She is on chemo and her tumors are shrinking. It is our dream that one day she might be able to have surgery. It is awesome yours was so successful. Hope to hear from you in the future. Take care.
-PamFebruary 3, 2012 at 2:25 am #57245hamptonsarasotaMember
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!!February 3, 2012 at 2:02 am #57244lainySpectator
Aloha, LeeAnn, this is one place we like to see weight gain! Teddy’s post care included seeing the ONC every 3 months and having LABS at that time with a PET every 6 months. You are doing quite nicely and to chemo or not to chemo seems to be one of our biggest discussion on this Board. You make a decision and can not look back, one must just forge ahead as the past cannot be changed. A lot of us graduated here from GUT Feelings 101. Sometimes we just have to trust our gut. I am so very happy that you are doing so well and wishing for you to have much continued success!February 3, 2012 at 1:49 am #57243leeannSpectator
Thank you everyone for warm welcome.
I’ve been reading everyone’s experiences and comments and wondering if I made the right decision not going through chemoradiation. I was told that chemoradiation needed to start 8 weeks after surgery and timing was impotant. My oncologist is GI specialist and said based on data it was not recomm. She wanted CT in 6 month and check up, but I asked to be seen in 3 months and get CT , PET alternate every 3 months. So I have appts with oncologist and surgeon in Apr. Hopefully I’ll have a better idea by then.
BTW I put on 5 pounds since surgery. Yay!!
LeeAnnFebruary 2, 2012 at 11:31 pm #57242pcl1029Member
If I may,even though 3 out of four oncologists said no to chemo after resection.
I will still consider to have at least Xeloda as adjuvant chemo to DELAY the recurrence . The recurrence is so high (>65%) that I think is worthwhile to do so. Xeloda is a pill and is easy to take. I am not trying to be your doctor because I am just like you, a patient,but not a doctor. But unless three of your oncologists are very familiar with CCA, observation or adjuvant chemo are two choices that commonly as recommendation when they search for treatment of this canner. I have clean margin about 1 cm,not mm, and after resection ( the whole left lobe) and 14 month of Gemzar, it still come back about 6 month after I stopped the Gemzar . 2nd opinion from experienced CCA oncologist is recommended.
God bless.February 2, 2012 at 4:27 am #57241peggypMember
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. PeggyPFebruary 2, 2012 at 4:15 am #57240peggypMember
Hi Lee Ann,
Welcome to the CC family. My husband was diagnosed three and a half years ago with Stage IV intrahepatic CC. He had a resection in August ’08 and his surgeon thought he had gotten everything. In December ’08, two spots showed up on his CT scan in the part of the liver that had not been removed. Not knowing what they were the doctors decided to wait until his next 3-month scans. In March ’09, he presented with multiple tumors in his liver. He has been on chemo since then, with some breaks in between. We had been told from the beginning that chemo or radiation were not options. John had wanted follow-up chemo after his surgery just to be on the safe side. I wish we had pushed harder for it. His last scans showed more progression so yesterday we spent the day at UVA seeing if he would be a candidate for TheraSphere. We got home at eleven last night. We did not hear from the hospital today as I had hoped, so we don’t know anything yet. Everyone has to do what they feel is right for them. I wish you many years of being CC free but you still have options available if you should have a recurrence. We, also, are raising a 9 year old boy and 14 year old girl. Love, PeggyPFebruary 2, 2012 at 1:40 am #57239RandiSpectator
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
-Randi-February 2, 2012 at 1:32 am #57238ronidinkesMember
Keep us posted.
My mother had the Whipple August 2010. She is still here and fighting each day.
She did not have chemotherapy, but she did radiation.
Stay in touch. Sending tons of love your way.
RoniFebruary 2, 2012 at 1:05 am #57237betsySpectator
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.
BetsyFebruary 2, 2012 at 1:03 am #57236jim-wildeMember
LeeAnn, in my case, the onc I saw for followup after a resection, recommended adjuvant chemo, based on her reading of the final path report. It said that some of the tissue removed during the resection was particularly aggressive. The surgeon had recommended no further treatment, but after consultation with the onc, agreed that chemo was probably the best course for me.
I wish you the best and many clean scans in your future.February 2, 2012 at 12:43 am #57235hamptonsarasotaMember
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!!
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