Wednesday, July 11, 2012

Cholangiocarcinoma 101 & Our Screwed Up Medical System

It has been a while since I have posted about the "basics" of cholangiocarcinoma (lets call it CC for short) and I thought that today would be a good day to review just exactly what CC is all about.

Cholangiocarcinoma (or bile duct cancer) is a cancerous (malignant) growth that originates in one of the ducts that carries bile from your liver to your small intestine.  CC is a relatively rare disease that only one out of every 100,000 people will ever get diagnosed with.  It can occur anywhere along the bile ducts and since the bile ducts are located within the liver it often spreads (matastasizes) into the liver and other organs in the body.  CC can be further categorized into three categories, extrahepatic (or perihilar or hilar), intrahepatic, and distal extrahepatic.  The most common form of CC is extrahepatic or Perihilar/hilar and originate in the hilum, or the place where the hepatic ducts have joined and are leaving the liver.  Another form of CC is distal bile duct cancer which actually forms outside the liver closer to the small intestine and is included in the "extrahepatic" category.  The least common form of CC is "intrahepatic" which develops in the smaller duct branches inside the liver.  Only 1 out of every 10 bile duct cancers are intrahepatic making it the most rare form of cholangiocarcinoma.  Imagine my surprise to find out that I have intrahepatic CC!  Not only do I have a rare disease, but I have the rarest of forms of this rare disease as well, lucky me.

The symptoms of CC can vary depending upon where the tumor is located within in the bile ducts.  If the tumor is hilar the patient usually has symptoms of jaundice, itching, abdominal pain, progressive weakness and weight loss.  If the tumor is distal there is often no abdominal pain but there is jaundice and itching (pruritus).  And finally if the tumor is intrahepatic there is often no jaundice present but there is itching (pruritus), slight to severe abdominal pain, unexplained weight loss, progressive weakness, fatigue and loss of appetite.

Before I was diagnosed with intrahepatic cholangiocarcinoma I had all of these symptoms except for the jaundice.  The back of my head itched like crazy! I remember thinking that "I don't have evidence of dandruff so why does my head itch like hell?"  I used apple cider vinegar every day to try to get the itching to stop but it wasn't working.  I had severe abdominal pain and extremely poor bathroom habits.  My right shoulder hurt all the time ( I found out later that this is where the liver often expresses its pain since there are no nerves to express pain in the liver) and I was losing weight (although at the time I thought this was a good thing).  I definitely lost my appetite, although at the time I didn't attribute that to anything other than I felt crappy whenever I ate (gassy, bloated, nauseous, etc.)  I often vomited in the mornings prior to my diagnosis and it was usually bright yellowish green and slimy (I'm guessing this was bile) and tasted horrible.  I had a HUGE hard mass right in the middle of my abdomen at the place where the ribs meet just below the sternum.  It felt like hard lumpy cottage cheese and protruded out from my abdomen.

The real problem with all of this is that I went to the emergency room at Swedish Hospital in Ballard (a neighborhood in Seattle) with these complaints and severe abdominal pain.  They ordered an ultrasound thinking I had gallstones.  After spending nearly an hour looking at my insides they determined that I was just fine and sent me home with orders to see my primary suggesting that I get yet another (i had already had three) endoscopy.  Knowing that another endoscopy was pointless, and that yet another doctors visit with the same set of problems was going to get me nothing except for more prilosec, I chose to ignore making an appointment with my primary.  Fast forward 3 months...I was in my primary's office for another reason and asked her to feel this giant lump in my abdomen, telling her that it hurt like hell and that it made it hard to breathe (like a knife in my stomach if I took a deep breath).  She felt it, or in medical terms, "palpitated" it and told me these exact words, "I see nothing remarkable, just take this prilosec for a month and let me know if it gets worse."  She was positive it was a hernia even though I explained that I had a lower back injury and that there was no way I could have gotten a hernia because I NEVER lift anything heavy.  This was at the 45th Street Clinic in Seattle.  My suggestion...DON'T GO THERE! or to Swedish either for that matter.

This is the problem with Cholangiocarcinoma, it is hard to diagnose.  Many of the symptoms fall into the "digestive disorder" category, especially if you are unfortunate enough to have the "intrahepatic" kind which doesn't usually present with jaundice (an indicator that something is wrong in the liver).  By the time one is diagnosed with CC it has already done extensive damage to the liver and has grown aggressively.

I'M NOT BUYING IT!

Why?  Because if I can look up these symptoms on the internet and find that "giant lump in abdomen", "itching or pruritus", "abdominal pain", "weakness and fatigue" "vomiting smelly slimy yellow stuff" and "weight loss and appetite loss" are all symptoms of cholangiocarcinoma SHOULDN'T A TRAINED MEDICAL PHYSICIAN KNOW THE DIFFERENCE  between a rare incurable cancer and a hernia!!!???

If this disease is rare and incurable then why aren't doctors trying harder to connect the dots with unexplained symptoms such as those above and CC?  Why?

Why is is that the medical professionals cannot even tell the difference between IBS (irritable bowel syndrome, which is what they said I had for more than 10 years) and Cholangiocarcinoma?!  Is it that they don't care?  Is it because insurance companies are willing to pay for endoscopies and colonoscopies but are not willing to fork over $800 for a CT scan with contrast?  Why do doctors just run the same old tests on you with the same results for years on end, wasting money and time and getting nowhere when they could just LISTEN to what you are telling them and think outside of the box for just one second to help their patients find the cause of their symptoms?

Cholangiocarcinoma is a relatively slow growing cancer in comparison to other cancers out there.  I am certain that all those years I complained about digestive disorders and abdominal pain I had CC growing inside of my liver.  Instead of ever ordering a simple liver panel or CT scan I got more pills, I got told that it "was all in my head", and that I must have a hernia.  I got endoscopies and colonoscopies and countless prescriptions to cover up my symptoms, but never a simple blood test to check my liver functions.

What do I take from all of this?  Let me give you some very important advice my friends.  This advice can quite possibly save your life.

BE AN ADVOCATE FOR YOUR OWN HEALTH


No one knows your body better than you do.  If you feel that something is not right, be persistent and question your doctor if they are not helping you find the reason you feel bad.  If they don't help you FIRE THEM and find another doctor who will help you.  The doctors do not always know what is best for you, some of them don't even care.  You pay good money (and a lot of it) for healthcare and you deserve better than a lame excuse for whatever you feel is wrong and the "brush off" of yet another prescription to mask your symptoms.

Those of us diagnosed with Cholangiocarcinoma know just how screwed up this all is.  Many of us have gone through similar experiences with doctors overlooking our symptoms and writing it off as other disorders.  The survival rate of those with CC isn't entirely uplifting...those diagnosed with extrahepatic CC have a 5 year survival rate twice that of those diagnosed with intrahepatic CC, but even then the rate of survival past 5 years is at best 30%.  Of course this is just all based on statistics.  I am of the opinion that I make my own statistics, just as you make your own statistics.  No one can tell us how long we have on this earth.  My point in bringing up survival rates is that CC is more often than not a certain death sentence.  It just seems to me that with the odds of survival being so slim and the increasing diagnosis of CC in young adults being on the rise, the medical community and society in general should be spending a little more time and attention on this killer of a disease for which there is no cure.  That is just my opinion.

Sites referenced:

http://www.cancer.org/acs/groups/cid/documents/webcontent/003084-pdf.pdf

http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Disease_ID=A6D10E80-887D-49A7-B3BB-0517D38CE757&GDL_DC_ID=320F4EDD-0021-4952-83D7-8B0C67B47BFF


14 comments:

  1. Thanks for your informative and heartfelt post. I have a "common cancer," but I still get frustrated when I think of how my breast surgeon blew me off when I was complaining of pain and swelling in my armpit. This is a breast surgeon!!! Oh well, I choose to focus on the here and now and, like you, how I can improve my health and prolong my life. Keep on assasinating those cancer cells!

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  2. Tami,
    Isn't it frustrating to get "blown off" for so many years. It really angered me at first to know that they could have found my cancer sooner had they really taken the time to listen to what I had to say instead of handing me prescriptions every time I went in. Seems like after 10-15 years of the prescriptions not working they might have considered that something else could be wrong. And as far as a "common cancer", well that is just ridiculous! Common or not, it is still just as deadly. And furthermore, if it is so common why not find out why it is common and eradicate the cause instead of making money on the so called "cures" which are really worse than the cancer. *sigh* You are absolutely right! We can't choose to focus on all the "wrongs" but instead focus on everything that is right, less we mire ourselves in negativity and feed the cancer. Sending you my love as always!

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  3. Thanks.. Nice post. My father got diagnosed today. Obviously I am shocked.
    But if laymen like me think Jaundice could be fever or Hepatitis. Why did it take so long to diagnose. Just googling jaundice and weight loss results in cancer.
    Anyways.
    How are you doing? Hope better.

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  4. Your post hits home with me on so many levels. I was very sick in 1999. Kept getting horrible headaches, losing my hair, had neck pain, weight gain and loss. Doctors kept saying I was getting older. I was 35. They kept blowing me off. Everytime I complained they gave me pills. Then when I was still complaining they said I was looking to get more pills! Finally, in 2003 I was sent to a pain management center. They did an ultrasound of my neck on a Friday afternoon. The follwing monday I was in the oncologist office. I had thyroid cancer that had spread throughout my neck and into some lymph nodes. I had 2 surgeries and a very high dose radioactive iodine. Such a high dose that I was quarantined for 4 days in the hospital. Fast forward to 2012. After living without a thyroid for all these years I have had some sick times. I had a CT scan in 2012 due to hospitalization for a bowel issue and they incidently remarked on a small lesion on my lower right hepatic lobe but they said it was too small to investigate or worry about. My liver levels were extremely elevated but not one doctor commented on that. I read it myself. Now it is 2015 and I am very sick. Sicker than I have ever felt in my life. Severe nausea, soooo tired, pain in my right side, severe joint pain and toes hurt bad. Swelling where my liver is located. They still are not focusing on my liver or bile ducts. I do not have a gallbladder. It was removed in 1999. But my liver actually hurts. And, my aunt passed away very suddenly over the last summer. They discovered she had cholangiocarcinoma. Her liver was covered with tumors. She was 61. She was also sick most of her life with many of the same symptoms I have now. These doctors today suck!

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  5. Thanks for sharing this great article! That is very interesting I love reading and I am always searching for informative information like this.Seattle Pain Center

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  6. Hi, my mother was diagnosed 4weeks ago, no pain, just jaundice, nausea and itching. We're in the UK and the NHS we have here have been great, no brush offs etc
    We have been told that the tumor is inoperable. She has stents to help with bile drainage, but so far not working well enough, so she is also unable to have any other treatment until this is resolved. It's all just a shock...
    I've considered recommending my mum gets a second opinion. I just don't know.. Finding it hard to accept that she doesn't have long left and that nothing can be done!...

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  7. This comment has been removed by the author.

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  8. Ps make sure mum is drinking at least 1.5 to 2 litres of good quality water preferably in a glass bottle to avoid the plastic toxins keep her off red meat and avoid shell fish , iron can aggravate a stressed bile system

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  9. Cured of TNBC!
    I want to take this time out as a cancer survivor to encourage women out there still suffering from this with my story on how i got a cure. The sad news about it is that i was diagnosed on my 36th birthday in 2008 and with stage 3 TNBC which after i made research was a very aggressive form of cancer at that point i decided and told myself i was going to die and that the end has finally come. All my life i never thought of having breast cancer because i was very active and i worked out at the gym several times every week and my diet was okay. In my search for a cure after 6 years of diagnosis and even after chemo which i did twice spending thousands of dollars but to no avail, until a church member told me all about Dr Aleta a herbal doctor that specializes in treating TNBC, who could help me with a permanent cure, i doubted this at first but i later gave it a try following her methods and instructions. It took 3 months and after it all i felt normal but still went for diagnosis and i was clean today i am proud to say i am a cancer survivor no nodes and i am totally free the new diagnosis confirmed it. Do not die in silence or ignorance because of breast cancer just simply reach her on aletedwin@gmail.com and also for any related cancer illness don't be shy just speak to her today.

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  10. I am so glad today and happy that i am alive to see another new day and not just that but also to share the goodnews of how i survived a deadly stage 4 cholangiocarsinoma (bile duct cancer). I was told by my oncologist that i had just 6 months left to live and i was so scared to lose my wife. I was lucky to contact Dr Mrs Aleta who i told all about it and she is the nicest person i have spoken to. She recommended a herbal medicine for her which she took that cured her in less than a month. Well for more info about the medicine and cancer treatment simply reach her on aletedwin@gmail.com she can help you too. Contact her for any form of cancer too.

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  11. I was diagnosed with stage 4 cc in December 2016 after the same symptoms and going to the Er numerous times to be told nothing was wrong. I've been on chemo since January 2017 on cisplatin and Gemzar. Mine is also intra, so my liver was covered with cancer. It also spread through my lympnodes. After four months of chemo we did a repeat pet scan to find that my lympnodes are clear and most of my liver is as well. Keeping on the same chemo regime until maybe August (this coming) or September then we will repeat a CT scan. It's very frustrating living with this as it is rare. I can't find much to read about it. I'm 33,with three young sons. Hopefully this next scan brings me good news. Lord knows my mental health has completely deteriorated with this disease. It has sucked me in like I swore I wouldn't let me...

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