Topic: My Mother-In-Law

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.

Thanks again,
Karisa

2 (edited by randigb Thu, 07 Mar 2013 14:42:13)

Re: My Mother-In-Law

Hello Karisa,

Welcome to the site and I am very sorry to hear about your MIL's problems.  I am a 3 year survivor of Extrahepatic CC, so my case is not at all like your MILs.  So I cannot speak to some of your questions.  I am sure others will come along and be able to answer what you've asked.

I did get 2 (3 if you count a phone consultation) and 1 local oncology second opinion after my surgery.  All I did was call the hospital where I wanted to go and ask them what there process was.  From my experience, it is more about the insurance coverage then it is about the facility.  I went to the Mayo Clinic in Rochester, MN, Roswell Park in Buffalo, NY, and got a phone consult from Memorial Sloan Kettering in NYC.  All of my second opinions confirmed what my initial oncologist had suggested, except the  Roswell doctor thought I should be more aggressive in my choice of chemo after surgery, which I rejected.

Sounds like you have the bull by the horns and I wish you and your MIL the best of luck.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: My Mother-In-Law

Dear Karisa, excellent job as an advocate and may I welcome you to our remarkable family. I will go right to your questions and answer what I think I can.

#1  Why do you think they did NOT examine all the nodes just because they found only 1 with? Mmmm I would ask the Doc about this one.
#2  All we know for sure about CC is we know not much and that everyone is so
very different. While we don't listen much to stastistics, most of them are old and don't apply to everyone, a good ONC can pretty much do some guesstimates. This is such a strange Cancer that we have learned not to trust it. This is a good seguay to
#3  I found that the 6 years I was Caretaker for my husband the best thing was to listen to my gut. It will not steer you wrong. Your MIL needs to be at a Hospital and with an ONC  where they have treated more than just a few CC patients. She need to develop her own team of qualified people. Not all Cancer Centers treat CC or much of it. You might be closest to Mayo in MN. where you could get a second opinion.
I get the feeling in your post you are feeling too leery and that would drive me to the 2nd opinion. We are big believers in 2nd and even 3rd opinions.
I believe the ONC would put you in touch with clinical trials.
Sorry I can't say more as my husband had a Whipple ande Cyber Knife but never Chemo. But I know all our genius's will be along soon to welcome you. To sum it all up...get a team together, get a 2nd opinion, listen to your gut and be very. very strong. Wishing you the best of luck. Everyone should have a dauhter-in-law like you! And please do keep us posted, we care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Mother-In-Law

Hi,
I am a ICCA patient like your MIL and  I am  not a doctor. I am 63.

If my guess is correct , since your MIL has lymph node involvement, she is in stage IVA rather than stage I, therefore it doesn't matter how many lymph nodes were found positive. The PNI just mean that the tumor had spread to the nearby nerves and it is not involved in the classification of the stages.

I had  15 mm of clear margin after the removal of the entire left lobe ,14 month of adjuvant chemotherapy after resection and it still came back.
So the 50-70% recurrence is real.

Lainy and Randi 's suggestion of 2nd opinions is highly useful. I went to Mayo Clinic by just calling them up, told them what is my diagnosis, what I want to consult with.( for me, after my second resection, I ask for liver specialist Dr. Gores and a medical oncology consult on site there.)

With regard to clinical trial at this point,I do not think you MIL will need that  at this time. I will persuit it only when current available treatment regimens failed.
Besides ,for ICCA, there are interventional radiation treatments available.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: My Mother-In-Law

Hi Karisa,

Welcome to the site. Sorry that you had to find us all and I'm sorry also to hear about your MIL. But I am glad that you have joined us here as you've come to the right place for support and help, and I know that you will get a ton of both from all of us here. Thanks for sharing your MIL's story and I am sure that she is so grateful for everything that you are doing for her.

And yes, from what you have told us you certainly do not sound like you are just shrugging and letting someone else take the wheel with regards to your MIL's care! That is great to hear and the more that you learn and understand the better informed you will be when it comes to helping with your MIL's decision making.

Please keep coming back here and know that we are all here for you. We do know what you are going through right now and we care.

My best wishes to you and your MIL,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Mother-In-Law

Hi, I am new to the board, too. We have been working with the Mayo Clinic staff in Rochester, MN, and Eau Claire,WI, since my husband first noticed issues with jaundice on Jan. 11 of this year. I cannot say enough good things about them. We were impressed with how seamlessly the digestion, surgery, and oncology departments in both cities work together. 

I was amazed at the number of people who were in Rochester for extended stays while undergoing tests and treatments. Many had traveled great distances.

If you are looking for a second opinion, I'd highly recommend them.

Re: My Mother-In-Law

Hello ladybug, welcome to our extraordinary family. I remember Spring Green well, I am orig. from Milwaukee. Spring Green is so beautiful. I remember a restaurant that specialized in homemade peach pie! I am sorry your Hubby has to fight this strange CC but you are in very good hands, indeed. Can you tell us a little more about his diagnosis and what kind of treatment is he getting? Is the Jaundice over?
You have come to the best place for advise, care and comfort and please keep us posted on his progress as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.