I have been reading posts on this board since my mother-in-law, Sandy (age 64), got the "probaby cholangiocarcinoma" diagnosis in mid-January. I have learned so much about helping her be an advocate for her own health on these boards, and I really appreciate it. I'd like to tell her story and ask for some feedback about how best to go from here.
Last fall, she saw her internist for a routine checkup, and her liver enzymes were elevated. The doc waited months and repeated the blood test, which came back elevated again. This was at the end of December. She ordered an ultrasound, which was apparently not reassuring. This was followed by an MRI, which again, was not reassuring. This was followed by a CT scan and a CA19-9 test on January 11. The CT scan showed a small mass in her liver and they suspected ICC, but the CA19-9 was not elevated, so they told her that the mass was probably not bile duct cancer. They ordered an ERCP anyway, to check it out, which was performed on January 16. The ERCP revealed a blocked left duct and again, probable ICC, though they couldn't tell exactly where it was located along the bile duct, so we were told it could be a Klatskins also. The doc put in a stent during the procedure, but wasn't able to biopsy the mass, so we still weren't sure what the tumor was. Cell scrapings taken during the ERCP didn't show any cancer. Unfortunately, my MIL developed a severe case of pancreatitis as a result of the procedure, and was hospitalized for the next 16 days.
When she was discharged, we went to see a surgeon, who opined that the tumor was ICC, and because of its size (about 1 cm all around), believed it was resectable. In order to allow my MIL to recover more from the pancreatitis and regain her strength, we waited until February 26 for surgery. Two days prior to surgery, she developed an inflamed gallbladder, which put her back in the hospital for two days prior to surgery. The gallbaldder attack didn't delay the surgery, though, and the surgeon just removed her gallbladder at the same time she removed the left lobe over her liver (about 40%), and the left branch of the duct.
The Path Report came back three days later, and is remarkable as follows:
Tumor Size: Greatest dimenson 2.0 cm
Histologic Type: cholangiocarcinoma
Histologic Grade: GII: Moderately differentiated
Margins: Parenchymal margin: Uninvolved by invasive carcinoma
Distance of tumor from closest margin: 1mm (though pathologist noted no cancer present at this margin)
Closest margin: bile duct
Perineural Invasion: Present
Primary Tumor (pT): pT1: Solitary tumor with no vascular invasion
Regional Lymph Nodes (pN): pN1: Regional lymph node metastasis
Number examined: 1
Number involved: 1
Distant Metastasis (pM): pMX: Cannot be assessed
Following surgery, the surgeon stated that she took all the lymph nodes out in the area and that only one of the nodes showed mets.
First Question: If the doctor says they took all the lymph nodes out, but the path report only shows 1 being examined, is there a reasonable explanation as to why the other lymph nodes wouldn't have been examined by the pathologist at the same time?
Second Question: The surgeon told my MIL that she thinks there is a "slim chance" of recurrence in light of the lack of evidence of distant mets,the fact that only one lymph node was involved, and the fact that they were able to take out the tumor with "good margins". Can anyone point me to any research that addresses recurrence rates with a path picture like the one my MIL has? My prior reading suggested upwards of a 50% recurrence rate within 2 years for R0 resections, but that research may not have been up to date, which doesn't sound like a "slim chance" to me. The path report also shows perineural invasion, which the surgeon didn't mention. Wouldn't the presence of PI affect the recurrence rate?
Third Quesiton: The surgeon has referred us to a local oncologist at the University of Nebraska Medical Center for treatment with chemotherapy (she is still in the hospital from her surgery, so hasn't even met with an oncologist yet). I'm not satisfied that we should just do whatever the surgeon suggests, and really want to make sure that she is treated so as to have the best chance possible to avoid recurrence. In light of the fact that she has already had surgery, can anyone recommend who I should get her hooked up with for second opinions? Also, how do I go about requesting a second opinion from a different doctor if they are not in our area (we live in Omaha, NE).
Final Question: If she is a candidate for a clinical trial, anyone know how I go about getting her enrolled in one? Is that someithing that her oncologist would assist with?
Based on this long and demanding post, you can probably guess that I'm not the type of person to shrug and let other people take the wheel when it comes to this sort of thing. I want to be knowledgeable and proactive about my MIL's care, but I just don't know where to start. Things have progressed so fast since January, and i don't really feel like my MIL has made any decisions yet about her care. . . her doctors just keep pushing her from one specalist to the next, and so far, we have been fine with that. I don't want that to continue when it comes to deciding her treatment options, since there appears to be so much that is unsettled about treatment after resection.
I would love to hear any advice anyone on this board has for me as I help my MIL through this. Thanks for giving me a forum to spill my guts about this, and thanks in advance for any responses I receive.