Topic: An Interesting Case

That's how one oncologist referred to my wife's medical history.

My wife Lori is 56. She was diagnosed with ulcerative colitis while in her teens. Then, in 1988, she had her appendix removed but this was more complicated that normal. This was a sign that nothing was going to be easy.

In 2003, Lori was diagnosed with Primary Sclerosing Cholangitis. In 2004, she had her gall bladder removed, was diagnosed with dysplasia in her colon, and her PSC significantly worsened. In early 2005, Lori had most of her colon removed. This caused her liver to fail, she moved to the top of the transplant list, and had a liver transplant two days later. She had a temporary ileostomy for five months.

I knew that CC was a risk for PSC patients, so that was a concern of mine. Lori preferred to not know of all the potential risks and side effects.

Things were pretty easy from 2005 - 2012. A few cases of mild rejection, but nothing too serious. However, in 2012, an ovarian cyst was discovered so Lori had a hysterectomy. The cyst was not cancerous.

Last year, her hepatologist was running all kinds of tests. He was certain that there was a serious problem somewhere, but he could not find one.

Late in the year, dysplasia was discovered in the small remaining part of Lori's colon and eventually surgery was scheduled for April 1.

The real fun began in late December. On December 28th, Lori had severe abdominal pain, so went to the ER of our local hospital. Her symptoms were very similar to flu; they gave her pain killers and sent her home after ~6 hours. Five weeks later, she had the same pain. This time, a CT Scan was done and a bowel obstruction was observed. The hospital treated her for five days and sent her home. They were hesitant to do surgery at this time. They thought, possibly, the cause was shifting scar tissue since the same incision had been used for several surgeries (including a C-section). Sometime, the small bowel unkinks and the problem doesn't re-occur.

Four weeks later, we were back. Same treatment. Now, they preferred not to do surgery because it would have impacted the April 1 scheduled surgery.

Four days later, she had the same pain (March 16). This time, we went to the Loyola University Hospital (where the April 1) surgery was to occur. On the 19th, Lori had an exploratory laparotomy. They would  need to resect a significant portion of the small bowel, and metastatic cancer was discovered within the entire peritoneal sac.

It took a while to get the complete Pathology Report, and the diagnosis was cholangiocarcinoma. Given Lori's history of UC and PSC, I knew this was a risk but I thought the risk was low post-transplant (especially 9 years later).

Lori was hospitalized for two weeks, and the first week at home was good. However, she lost her appetite and stopped eating and drinking. I had to take her back to the hospital with dangerously low sodium and high creatinine after the second week. Another week in the hospital. A week home, then back in the hospital with high potassium. Four days in the hospital this time.

Because of Lori's history, evidence of metastasis, and since she already has a liver transplant and is on immuno-suppresants, the CC is not curable.

Her oncologist is planning a palliative treatment consisting of gemvar and 5-fu. Chemo has not begun because the kidney function needed to improve. Her creatinine level is still too high.

This week, we sought a second opinion at Northwestern Memorial. This oncologist labelled Lori as an interesting case. She felt that possibly the CC has been in her body for ~10 years, but never manifested itself in any symptoms leading to a CC diagnosis (that was actually my amateur assessment a few weeks ago). She also felt that Lori could defer chemo for the short term. The risk with chemo is that it could cause her kidneys to fail. Due to CC and that she already is on immuno-suppressants, a kidney transplant would not be an option.

I guess the risk to deferring chemo is that if we wait too long, then chemo won't be an option because something else in her body is stressed (kidneys, liver). There is no cancer in her liver itself.

The big task, right now, is for Lori to get stronger. She needs to watch her diet so that she gets her sodium, creatinine, and potassium to the proper levels.

Congrats, if you got through this entire post.

Re: An Interesting Case

Wow. What a journey  Lori has had. You've come to the right place for support, and information.
Yes, deferring chemo can be a risk. But if the 2nd opinion doc is correct, it is slow growing. And even if it is fast growing, delaying chemo for a few weeks will hopefully not make too much difference.
We had to delay chemo for me initially because of a blood infection. So even though I was also inoperable, I had to wait about 4 extra weeks before starting chemo. Did it hurt in the long run? I don't know. That was June 2011 so it couldn't have hurt TOO much!
My main suggestion is to make sure her care team understands cc, as it can become very aggressive, and it is very sneaky.
Good luck and please keep us informed.

"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: An Interesting Case

Hi Kevin,

Welcome to the site. Sorry that you had to find us all here and I'm sorry to hear about Lori. As Kris said, wow, Lori has sure been through so much these last few years. My thanks to you for sharing her story with us all. I'm glad that you have joined in with us here as you have come to the best place for support and help and you will get loads of each from everyone here.

Please keep coming back and post as much as you want to. Let us know how everything goes for Lori and please know that we are here for you both as well.

My best wishes to you and Lori,


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: An Interesting Case

Welcome to the group Kevin.  Glad you have found us, but sorry for the reason.  You have found the best place and the best people for information and support while dealing with this disease.   Hoping things go well for Lori.  Please keep us posted as to how things are going.  Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: An Interesting Case

Kevin,   You and Lori are in my prayers.  I wish you didn't have a reason to be here on this site....none of wants there to be a reason for having a foundation website.  But, there things are what they are.  I hope you find some comfort and information here to help you through this time.  You two have been through so much together's obvious how much you care for and love Lori. 

Julie T
Iowa Girl

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.