New Diagnosis: Faith Hope and Love for Mom

Family is so important to all of us. My wonderful mother was diagnosed with Cholangiocarcinoma two days ago on Thursday, June 4, 2015.

I thank you for taking the time to read about her, as well as offer up any suggestions, guidance, and direction.

Approximately 6 weeks ago mom was not feeling well. She had a temperature that varied from 101 – 103°F. She went to the ER. They ruled out pneumonia and said it was bronchitis. For one reason or another they decided to do a blood test. The blood test showed that her liver enzymes were elevated. This prompted them to do a CT scan. When she came out of the CT scan all of the medical staff’s demeanor instantly changed. This upset her greatly. Especially after they told her that there was a large mass on her liver. This was on a Sunday.

They gave her a cd copy of that CT scan and told her to contact her gastroenterologist asap. She did just that. It took the gastro several days to read the report. During this time the fever subsided. However she started having pain in her upper middle, upper right abdomen, and some pain in her shoulder/back. She also had random fits of severe nausea and vomiting. The following week on Tuesday they finally called her and made an appointment for Friday afternoon. In the mean time they had her get some blood tests. One was a CA 19-9 tumor marker test. Another was a more specific liver enzyme test (AST/ALT). Her results came back within the next 2 days. Her liver enzymes were in the 700’s. The CA 19-9 results showed elevation, but the gastro said they weren’t significantly high (hopefully I have remembered these numbers correctly) Her appointment was schedule 12 days post her initial visit to the ER with CT scan.

At the Friday afternoon appointment with the gastro, she was told that there was a single tumor on the left lobe of her liver and it was 5 mm. He told her that her bile duct was also inflamed. He said at worse her left lobe would need to be resected. Which might require chemo beforehand to shrink the tumor. A biopsy was scheduled for the following Tuesday. She had the same symptoms, but started to become very itchy all over her body. The gastro told her this was because her bilirubin was starting to elevate above 3 or 3.5.

The biopsy was completed 16 days post her initial ER visit. They told her it would take 10 to 15 days to receive the biopsy report. At this time she still had the same symptoms except started to itch all over her body. We were all rather confused about the 10 to 15 day timeframe to receive the report as shouldn’t a tumor on the liver be an indication that the biopsy should be rushed? My aunt, a nurse for over 30 years who had worked oncology for a lot of those years said that when needed, a biopsy report could be done in as little as a couple of hours. If it was truly rushed. Why was this not done?

Shortly after the biopsy her bilirubin level increased and she became jaundiced. Both her skin as well as the whites of her eyes turned yellow. She called the gastro several times but was told that we just need to wait on the biopsy report to see what the treatment plan will be.

Two weeks after the biopsy and 28 days after the initial ER visit and symptoms, she pleaded with the gastro to get the biopsy report. They told her they will call to find out what the hold up was. The next day, 29 days after initial they called her and told her that the tumor was cancer. They did not specify what, but said an appointment with an oncologist would be scheduled for 2 days later. This was now 30 days after the initial ER visit and symptoms.

My mother got the call that it was cancer this past Tuesday, her oncologist appointment was this past Thursday. Within the past couple of days my mother has started to experience extreme fatigue. She said it takes all of her power to just go from the bed to the couch. But she said some days are much better than others. The appointment did not go well. The oncologist said that the tumor was Cholangiocarcinoma, attributed to adeno cells that are in the mucus lining of the bile duct. All of the bile duct tree was inflamed. He said a stent was not possible to relieve the jaundice/nausea!

He said surgery was not an option, nor was radiation. He said this diagnosis was very rare, and at best he might see one of these per year. He was referring her to a specialist for this coming Monday, June 8, 2015. (She has since decided she will not go as this specialist told her that there was nothing that could be done)

He then proceeded to tell her that she has 3 – 6 months to live. If chemo can be an option (it will be discussed this upcoming Monday), that might add another 3 – 6 months. While there he actually called the specialist on the phone with my mom in the room. The specialist flat out said there was nothing that could be done. If this is the case, why was an appointment scheduled with her for next Monday? During this whole time the oncologist kept on repeating over and over “you should have been in here a month ago”. Really!? We all knew that, so why did everyone drag their feet? Again, a biopsy of this type takes 2 weeks to get the results?

If you are still reading THANK YOU.

This is where we are today, Monday June 8, 2015 (36 days after initial ER visit/symptoms):

Diagnosis of Cholangiocarcinoma
no surgery and no radiation
Not slow growing tumor but not the fastest either – grows in the middle of the pack but said would double in size in a month
Maybe Chemo
Bile Duct Inflamed
Told Stent can not be put in

*** My mother has had ulcerative colitis for pretty much all of her life. She has a j pouch that has replaced her colon. She also does not have a gall bladder. The oncologist was not sure if the tumor could have come over from the pancreas or vice versa ***

Currently experiencing:

Severe Jaundice – yellow to almost greenish?
Extreme fatigue that comes and goes
Loss of appetite but is only eating fruits and vegetables when she can
Only eats when nausea and vomiting are not as bad
She knows she needs to eat to try to get energy
Has not had a fever for a while

Questions:

Should I go ahead and contact MD Anderson and/or Mayo Clinic? Are these the two best options?

She is retired military so has Tricare. Is this something that either take, or will we need to pay out of pocket? If so, what are the costs for a 2nd/3rd opinion at these institutions?

Why can’t a stent be done? Is it possible to receive a biliary tube or drain to relieve the bile so infection/sepsis does not set in if a stent can’t be done?

Is it simply palliative care from this point on, or is it possible that some type of curative treatment plan might occur if chemo works?

If nothing can be done, will something at least be done to help her extreme fatigue, pain, and to help relieve the bile from backing up due to her entire bile duct tree being inflamed?

Should she also see a naturopath? I’ve read that some have had great luck with an IV infusion of vitamins to include Glutathione. Anyone know about this?

What are the power fruits/vegetables that she should eat for CC?

Thank you all again for taking the time to read all of this, as well as provide much needed suggestions, guidance and direction. Like both you who have CC, as well as the many of you like me who are caregivers, we all simply want the best for our loved ones. At worst we want to ensure she is pain free, not scared, not sad, and is able to enjoy the time she has left with dignity and a whole lot of quality.

Hopefully MD Anderson and/or Mayo Clinic has something in their tool bag that neither the oncologist (who might see one of these cases a year) or the specialist that she see’s Monday (who might see 5 of these cases a year) have.

With much Faith, Hope, and Love for Mom, and a whole lot of positive thoughts for us all,

Jason