from a new member

Dear Wayne,

I hope everything is well with you and your family.  We all end up learning a lot of new terminology with this cancer.

Clear margins are a very good result of surgery.  It means that no cancer cells were found in the margin of tissue around the excised tumor.  The doctors’ shorthand for this is “R0.”

An R0 resection tends to have less risk of cancer recurrence than R1 which is where there are cancer cells found in the margins.  But there are other risk factors for recurrence that may also be uncovered during surgery and described in your pathology report.  They include lymphovascular invasion (the tumor invaded veins or lymphatic pathways), cancer cells found in resected lymph nodes, a large tumor, poor differentiation (the tumor cells do not much resemble the tissue of origin), having multiple tumors and and perineural invasion (the tumor has invaded nerve pathways).

If you have some of these factors, a doctor may recommend adjuvant treatment even for a patient with clear margins.

In my own case, my tumor was large, had lymphovascular invasion, and was poorly differentiated, plus my clear margins were slim in one area, so the hospital tumor board recommended adjuvant treatment.  I had both chemo and radiation.

The evidence on the effectiveness of adjuvant treatment for cholangiocarcinoma has been sparse.  This is in part due to the rareness of the cancer and that doctors have had different approaches to treatment, so it is harder to have good statistical evidence.  The BILCAP study results (a link appears on my earlier message) seem to be significant because it was a large randomized study and showed a survival benefit from six months of adjuvant capecitabine.  There was suggestion at the time the results were announced that the BILCAP regimen might become a standard of care in the future.  It may be worthwhile asking your doctor about this study if you are considering inquiring about adjuvant treatment.

Thank you for asking about my family. Regarding hope – there is always hope!  Please keep us updated – any information you post is of great help to other families and their caregivers.

Regards, Mary

• This reply was modified 6 years, 9 months ago by bglass.
• This reply was modified 6 years, 9 months ago by bglass.
• This reply was modified 6 years, 9 months ago by bglass.

Welcome! I am so glad you were able to have surgery, and it sounds very successful. Make sure that your oncologist is familiar with cholangiocarcinoma, and is up on the latest research, such as the BILCAP study mentioned by Mary. My husband also had surgery last December, but he did not get clear margins and one local lymph node was positive. His oncologist, the entire hospital liver board, and 2 oncologists from out of town all recommended both chemo and radiation. My husband completed chemo at the end of June, and it was tough to start radiation in July because he felt so good and all the scans were clear. He also wanted to do everything he could to possibly fight this disease and felt that he should go ahead with the radiation. Radiation was really tough (he also did a different chemo drug at the same time) and he finished that at the end of August. He had his first post-treatment scan (chest, ab & pelvic CT with contrast) 2 months later, which was all clear. He will have another scan (ab MRI) after 3 months. His oncologist rotates between PET CTs (she likes best for skull to thigh), CTs, and MRIs (she likes best for detailed look inside the liver).

Please do not start exercising until you have gotten the all clear from your surgeon. Make sure to be specific about what type of exercise and stretching you can do. Call the office if you do not have an appointment and hopefully you can get these types of questions answered without having to go in.

My husband had his gallbladder, common bile duct, and 70% of his liver removed. He does not have any food restrictions, although he tries to avoid too much deep-fried food. He has never been a big meat eater and rarely eats red meat. He is a professor and took an entire semester off work, but that is because of the support he got from his employer and the fact that he spent 30 days in the hospital after his resection with multiple infections. Ugh! He maybe could have gone back to work 12 weeks after his resection (which was only 8 weeks after discharge) if he had to, but chemo was starting then. He was a bike commuter, but 10 months after surgery and 7 weeks after his last radiation treatment he does not have the energy to ride his bike yet. He is 43 and we have 2 children.

I hope all this info is helpful,
Victoria

Hi Wmeisel,

Glad that you found us, but sorry you got this diagnosis.

Congratulations on a successful surgery.  Did your doctors discuss any sort of adjuvant treatment?  Many folks who have surgery follow it with chemo or chemo+radiation, particularly if the surgery revealed potential for recurrence (e.g., close margins).

In the past, cholangiocarcinoma patients have reported that some doctors advised them that there was no clear evidence adjuvant treatment offered any benefit.  More recently, a study done in the U.K. known by the name BILCAP showed a survival benefit for a post-surgery chemotherapy regimen.

Here is a press release on BILCAP:

http://www.ascopost.com/News/55631

Doctors differ on their approach to surveillance.  Scans every three months for the first couple of years is fairly common.  In my case, I asked that my CA 19-9 tumor marker be checked every month.  For some (not all) people, this marker may start to move upwards if the cancer is recurring.  Others have tumor markers and other blood tests (e.g., liver tests) less frequently, e.g., just at the same time as the scans.  Monitoring plans are generally worked out between doctors and patients, so this is an area where you should speak up if the doctor’s instructions raise questions for you.

Decisions such as when to go back to work are unique to each person.  In my case, I went back after two months, but my job was pretty desk-bound.

If you look around this discussion board, you will find many patient stories and other information to help inform your path.  And we hope you will join in discussions with your own experiences navigating this rare cancer.

Regards, Mary

• This reply was modified 6 years, 9 months ago by bglass.