September 27, 2020 at 9:58 am #100468
Thanks Mary. Yes, when I said she was setting up 6 month scans, I meant that we are now at 6 months. I assume we’ll be doing 3 month scans for the follow-up, but if not I will push to do so. She goes in on Tuesday for a scan (two different scans actually–I’m not sure the difference) and bloodwork and hopefully take out her final surgical drain. Fingers crossed that all looks good! I’ll let you know. Thanks! GlennSeptember 23, 2020 at 6:11 pm #100457bglassModerator
After my resection surgery, my doctors recommended scans every three months and bloodwork (CA 19-9, metabolic panel and CBC) every month for the first two years. After two years, this was reduced to scans at six months and bloodwork every two months. This seemed to reflect I was judged to be at a high risk of recurrence. That said, quarterly scans are not uncommon for cholangiocarcinoma patients during the first two years after surgery. The odds of recurrence are higher in the first two years, and my own thinking on this (knowing that there is some risk associated with scan radiation) was that it would be best to catch any recurrence early as possible.
The NCCN guidelines that guide doctors in the U.S. recommend scans every six months in the first two years, if needed, last time I looked. The European (ESMO) guidelines recommend every three months in the first two years. You can find the guidelines on-line. The best surveillance regimen for your wife’s case should be discussed with her doctor who should take into account her views. It is also important to check what is covered by insurance, and to check scan prices because they can vary substantially depending on where you have the scan.
Regards, MarySeptember 23, 2020 at 1:13 pm #100456
Thanks for the responses Pat and Mary. We’re setting up 6 month scans/bloodwork and will see what they show. Everything I see in her pathology suggests she is a strong candidate for adjuvant therapy, so I will push the surgeon a bit even though it would be 6 months. Cheers, GSeptember 15, 2020 at 7:24 am #100436herculesModerator
Glenno , Congrats on a successful surgery, sounds like she had a tough recovery, and she has to heal. Everyone is different how we heal, and hopefully she will be getting stronger. Every cancer case is a little different, and my tumor was perihilar but it was smaller, more localized and a papillary presentation, so it is difficult to compare. CC is highly recurrent when it has progressed beyond the membrane that surrounds the bile duct. GET HER TUMOR SAMPLE FROM SURGERY TESTED FOR GENETIC MUTATIONS . She will need adjuvant (further ) treatment with lymphatic invasion, there are many options but genetic testing will steer you to the most effective chemo or trial . I wish her success in her survival, PatSeptember 14, 2020 at 10:24 pm #100435bglassModerator
Welcome to our community. It is indeed good news to hear that your wife is recovering well from her surgery. Not all of our patients have their cancer found in time to have surgery, so she is very fortunate. As you may have seen, some but not all patients choose chemo after surgery although I think it is more common now that there is a standard of care involving six months of the chemo drug capecitabine. Capecitabine comes in pill form and is well enough tolerated by most patients (a very tiny number have a rare genetic mutation that makes capecitabine highly toxic, so any patients choosing this chemo should consider getting tested before starting.)
The norm is to start adjuvant treatment soon after surgery, usually before three months have passed. Your wife should ask her doctor if he sees a benefit to starting when she feels well enough, even though in her case it would be a longer interval after surgery. Another important aspect post surgery is a good surveillance program, with regular scans and blood tests.
In my own case, I was encouraged to have both radiation and chemo after surgery because my tumor was large and had a lot of high risk features, but each patient is different. It is important to be seen by doctors with a lot of experience with our rare cancer, who can give you a good read-out on treatment options and their pros and cons. My understanding (not a doctor) is the biggest benefit comes from the surgery, and that the adjuvant therapy can add some benefit for some patients.
I hope your wife continues a good recovery. Take care, regards, MarySeptember 14, 2020 at 9:10 am #100434
This is a great resource. My wife was diagnosed with a perihilar tumor back in March. In April, she went in for a liver resection and ended up having a whipple procedure at the same time. After 45 days in the hospital (I couldn’t visit because of Covid!) and many complications over the summer, she is finally starting to turn around. We got rid of the feeding tube and she is eating and feeling reasonably good.
The surgery was largely successful, but she has perineural invasion, lymphovascular invasion and one margin is <1 mm. So adjuvant therapy seems warranted, but she has not been healthy enough to even consider chemotherapy (and they won’t do radiation because they’d apparently have to radiate an artery that was grafted and the surgeon says it would destroy it). But now we’re pushing 6 months from surgery.
I guess my question (beyond just telling the story to people who I know fully understand!!) is if many people have done surgery but not follow-up chemo or if people have started chemo this long after surgery. Any experiences with follow-up treatment (or not) would be good to hear. What are other people’s experiences with how the dr’s make the decision to follow up with chemo or not.
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