Our story

I have been reading your posts on various CC subjects while waiting for my registration to be activated. Suddenly, I was not alone. I am very grateful that this community exists. Here is our story:

9/20/2013 –It all started when my husband went to his primary care physician to check a shoulder pain caused by a tennis injury. While there, the doctor also did a blood test. The liver panel came back elevated. My husband received a referral to a GI doctor part of our insurance plan.

9/24/2013 CT scan done and a heterogeneous low density “mass” was observed in the liver measuring 2.6*2.4 suspect for metastatic lesion.
10/21/2013 – CT guided Biopsy was performed but returned negative results to indicate the mass was suspicious for an intrahepatic cholangiocarcinoma.
No other tests were done but awareness should have been on the doctor’s side since my husband had a history of colon cancer and he had surgery done in 2006.

12/09/2013 – Blood results continued to show abnormal values for the liver. On 12/09/13 my husband had another appointment with the GI doctor who at the end of the visit recommended that the patient returns in 4 weeks!

After the doctor’s appointment my husband’s condition deteriorated fast – he felt tired, stomach issues and Jaundice started to be noticeable. He called the GI doctor and on 12/17/13, my husband was admitted in the hospital. MRCP performed indicating hilar cholangiocarcinoma.

He was released from the hospital with Jaundice, bilirubin reaching 2 digits level. We received a referral to the Liver transplant clinic in Los Angeles. Visit with the doctor at the liver clinic – we were told liver transplant was not an option. But there was hope the tumor was resectable .
On 12/26, the surgeon provided “guarded guidance” the tumor might be resectable. No appointments were available with the surgeon until 1/13/2014.
In the meantime, on 12/26/13, the GI doctor attempted an ERCP procedure. Procedure failed.
On 12/29/2013 – A drain was placed on the right side. Within 24 h there were complications as the drain hit a vein and my husband was experiencing heavy bleeding. The drain was replaced on 12/30 in the most painful procedure my husband ever experienced. I am questioning if they gave him enough sedation or what else went wrong?

On 1/4/2014, the drain was re-positioned. On 1/6/2014, he was released from the hospital with a bilirubin level of 29.2
He was having visible side effects of the medication –nausea and violent vomiting. Within 5 days he lost 10 lb. Week and dehydrated he checked into the emergency for 3 days.
On 1/13 we went to the appointment with surgeon in LA. The tumor was resectable but in order to have the surgery we were told the bilirubin needs to be at 2. Another drain was placed to help with the bile drainage in the left side of the liver. Over the next month, we were in and out of the emergency room as my husband got severely dehydrated due to the side effects of the pain medication. He continued to lose weight. Sept 24,2013 he was 232 lb, now 179 lb.
1/22/14 – good news PET scan does not show other metastatic areas.

On 2/4 the drains were changed and again re-positioned.

Feb 24th, we met again with the surgeon only to be told a selective portal vein embolization was an absolute pre-requisite to the surgery now at least two months away.
Kaiser refused to pay for a second opinion outside the plan. That decision did not stop us to seek a second opinion with Dr. Genyk (mentioned several times on this site). Dr. Genyk had a total different opinion from our plan’s doctor regarding the surgical approach and the segments of the liver which need to be removed. We are stunned!
We cannot go out of the plan as we belong to Kaiser. But I feel they delayed the diagnostic, the procedures, and now the surgery approach is very different compared to the surgeon who is an authority in this field.

It breaks my heart and spirit to see my husband so week, so tired so close to a curative approach but so far due to the boundaries of our health insurance provider.

Please, help if you have any advice.
Thank you,

Roxanne