How much pain to expect with cholangiocarcinoma?
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It was pain that led the doctors to my diagnosis of intrahepatic CC. Every time I ate, I was so nauseated I could barely sit up. I had mid-back pain on my left side; I was so itchy my skin was bleeding and bruised from all the scratching. Plus, I was so tired I could barely hold my head up after work (or even at work). All of those symptoms went away after I had a stent placed to allow the bile to flow again. Of course, the fatigue came back with chemo, but everything else has been kept at bay.
Best of luck and if there is pain, please insist the doctors address it.
My dad has intrahepatic CC and he was in EXTREME pain. Its completely normal to experience pain, especially in the mid back, when there is a tumor growing as it pushes on nerves.
Hi Pyderman,
Throughout my dads fight with CC his pain was pretty well managed and much of the time he would describe it when he had it as a dull ache in his lower right side/abdomen or back area. As for pain meds, he started out on paracetamol then was put onto codeine based meds and they worked very well for him. Even during his last few weeks in hospice his pain was what I would say and my dad did as well that it was not too bad. When he had some pain in hospice they controlled it very well with injections and that worked well for him. His hospice team said to me that they would be able to control any pain that he got and true to their word they were able to do that for him.
I agree that for everyone pain issues can be different and this is something that you should definitely keep on top of and have it managed. I hope some of that is useful.
My best wishes to you,
Gavin
I’ve had a little of all of the above. I have a tumor in my liver and several in both lungs and some in lymph nodes. Before I was diagnosed, I had pain on my right side at the bottom edge of my rib cage. At the worst it kept me from sleeping. The only tolerable position was sitting up. After chemo began and the liver tumor shrunk from 18 cm to 10 cm, the pain went away. If I remember I also had some pain in my right shoulder but dismissed that as “sleeping wrong.”
Duke
I don’t know if this helps….
My dad died from this cancer in April of this year. At the end he didn’t describe it as “pain” but as discomfort. He used to say I know pain…I have had kidney stones. This isn’t pain it is more like discomfort…having the flu.
Now saying that he was on a very high dose of morphine. He just was not able to sleep. Once they got the morphine dose almost figured out he passed away. Now he also had ascites and wasn’t eating.
Pyderman…….looking back at your postings, your Mom’s pain has been an issue for quite some time. I think that this is a good indicator of what to expect and that is something I would discuss with the treating physician. Based on my personal experience with my husband and on the thousands of postings on this site, I have noticed that that resected patients are less likely to experience advanced pain. I believe it is related to the fact that malignancy is less likely to invade surrounding structures. Again, you would want this confirmed by the physician.
Some patients increased bile flow with Ursodiol and our JeffG experienced less side effects with synthetic methadone (4 times, daily) and Dilaudid for breakthrough pain. Overall, it is a trial and error situation, but ultimately comfort can be achieved with the right combination of drugs.
Hugs,
MarionI had pain under my right breast, very sore and tender. I agree with Lainy, we are all different.
LisaMine is Intrahepatic and I had an 18cm tumor in liver. The only symptom I ever had was intermittent abdominal pain on my right side. My pain was tolerable and I only found the pain got much worse after I started my first chemo regimen.
I dislike giving the well known phrase, “everyone is different” but it is so true. My husband had CC for 5 1/2 years and had no pain until the last 3 months. We believe that is when it finally went to the liver. He never took anything for pain until then. He started out on small doses of Morphine and when we got to the end he was on mega doses. With all the Meds today for pain control the pain can be kept pretty much under control. Comfort is the key word. CC seems to come in like a lamb and go out like a lion. Again, most patients can be under good pain control. By the way I cannot understand how ANY doctor would say “with this cancer, no pain!”.
My wife’s experience:
Tumors completely inside the liver ==> no pain
One tumor on the edge of the liver that was growing and pushing on the diaphram ==> severe pain.
Pain can certainly be from the cancer, but it seems to really depend on each individual tumor location.
Jason
We have been given differing views from differing oncologists with respect to how much pain a cholangiocarcinoma sufferer should expect.
Stage IV. Metastatis in liver (two small lesions) and lymph nodes. Both experienced oncologists. One asserts that the pain being experienced (round the clock, masked only by strong opiods) is due to the cancer (“this form of cancer is painful”). The other was surprised to hear that pain was being experienced at all (“you should not be in pain with this type of cancer”).
What have been your own experiences or those of your loved ones?
Thanks.
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