A little bit of good news
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Nikki,
While risk is low (around 2-3%), some docs believe the spread from invasive diagnostic procedures is higher than reported. My sister is one of the rare birds whose needle biopsy did spread the cancer. I learned that there are other ways to make a differential diagnosis that won’t jeaprodize qualifying for resection or even (rarely) a transplant protocols. This is especially relevant if the docs believe if it’s a single, small lesion contained in the liver or bile duct. If images show there are multiple lesions, lymph nodes involved, blood vessel invasion, distant mets, then biopsy is usually appropriate. Again, ask your Dads docs since I’m not a doc. I’m an advocate for my sister.Willow – I wonder how much risk there is in spreading the cancer when doing a liver biopsy. When we got a second opinion from the wonderful Dr. Zhu at MGH, he said that it’s not a huge deal to get one done if it’s going to make us sleep better at night. I guess I will have to ask about the chance of spread with the biopsy. If high, maybe we will choose not to have it done. Every Doctor has said, it looks and acts like a reoccurence of CC, but we will never know for sure what it is unless it is biopsied.
Rosetta – I know in some cases it won’t be elevated at all, but it was elevated during initial diagnosis and is now just flat with the reoccurence. Very strange.
Caroline – that’s great about the CA-19 reading. It sounds like your mom has similar trends in CA-19 and CEA as my dad. I know CEA can be elevated when there is reoccurence in the liver, but it’s mainly a reading they use for cancers other than CC. I wish there were more answers!
Hi Nikki,
I just got my mom’s latest CA 19-9 count, and it’s the lowest it has ever been since the initial diagnosis (42!). But her CEA is way up and it’s the highest it’s been. The medical team is perplexed too, and we’re told that we won’t know what’s going on until the scan. I’ll post an update on the Cabozantinib post if I get it sooner than you do.
Caroline
Nikki,
My mom too did not have an elevated Ca19-9 count. Hers were totally normal, even though she had a 7centimenter tumor. I too questioned that and not sure who responded but I remembered them saying that in 20% (don’t quote that exact number) that the CA marker does not elevate. Not sure why?? Enjoy all your great news!! You are correct miracles happen every day.
Nikki,
I would bring your questions/reservations about your Dad’s diagnosis to the doctors. The following are just my opinions based on other discussions and research.
It is my understanding that Cholangiocarcinoma is considered a primary liver cancer, even tough it doesn’t arise from hepatocytes (liver cells). CC is less common than hepatocellular carcinoma (the primary liver cancer that DOES arise from hepatocytes). Then, incidentally, there are cases which appear to be a mix of these types, like my sister’s case. When they say CC “metastasized to the liver, they mean it spread from the bile duct tissue to one or more locations in the regular tissue of the liver. Because bile ducts/bile production are located in the organ we call “the liver”, I think that’s why CC is considered a primary liver cancer. The ducts exit the liver at the common bile duct. Because of their unique tumor biology, symptoms and disease progression, we know that there are completely different and distinct cancers that fall under the name CC. Their names depending on where in the biliary tree the original tumor is thought to originate. Getting the correct diagnosis affects treatment decisions. That said, I learned recently that invasive diagnostic procedures (that could spread the cancer) should be done only after evaluation by a tumor board at a major cancer center known for treating large number of cholangiocarcinoma cases.
Lastly, it is also my understanding that the ca 19-9 isn’t definitive for diagnosis and that’s why they only look at its trends but not for specific numbers. It can also be influenced by factors other than cancer.
WillowJust a little update…I spoke to my dad’s radiologist, Dr. Schenker earlier this week and he feels comfortable delaying SIRT until there is a need for it. He said that he presented my dad’s case to the tumor board and the board is shocked at the percentage of overall shrinkage (I did the math and the large tumor shrunk 67%!). They said this is very uncommon with 5-FU as a single agent. We are going to scan every two months instead of three and Dr. Schenker said that if/when we see stable disease, we will then move forward with SIRT.
Although multiple Doctors have told us that this is definately CC that has spread to the liver, I still have my doubts. I just find it strange that his CEA is elevated (but CA-19) is normal and 5-FU alone is having such a huge impact. Both of these factors are very common with primary liver cancer and colon cancer that has spread to the liver. Although I don’t want to put my dad through another procedure, I’m wondering if it makes any sense for him to have a biopsy. It is was in fact liver or colon cancer, this would/could change the course of his treatment. Just trying to think outside the box!
Yay, always love hearing good news. Congrats on the awesome shrinkage and that he is feeling well! So great to hear. Thanks for you posting and blessings to you and your family.
That’s great news, especially that he is feeling better. Continued good thoughts coming your way for continued good news!
-Randi-What wonderful news!! Yes, life CAN go on with cancer. Here’s hoping for more good news and successful treatments, whether it be 5FU or SIRT.
Nikki, WOWSER! I am doing cartwheels. Well I can think it, anyway! Such good news just enjoy your newly improved Dad!
Thank you all for your kind words, positive vibes and prayers! One of our biggest challenges is learning that you can live with cancer, that life can and does go on. Every day there are new miracles and I truly believe my dad is already one of them. There is always hope. When you get pushed down, you get right back up again. This week was school vacation and my dad had my two youngest brothers all week long and he managed not only to do something with them every day, but he took himself to his own CT scan on Tuesday and to infusion on Thursday. Then we all went back into Boston to the children’s museum yesterday for the entire day all while he was wearing his infusion pump. Talk about a strong man that won’t let his disease control his life. He amazes me every single day. I questioned his decision to give up Oxaliplatin, because we were told that the combination was going to give him the best results, but he stuck to his gut and said it was more important for his well being to be able to spend time with his children, so he opted for the 5FU alone. Sure enough, another example of how you must listen to your gut as it’s your angels that give you those gut feelings. His oncologist is shocked and said that another cycle of 5FU alone might possibly bring his disease under control making SIRT at this time not even necessary. I am a happy girl this week!
Hi Nikki,
I’m so happy for your bit of good news (though 44% shrinkage sounds like hugely good news!). I’ll continue to send positive thoughts for your dad. Keep us posted!
Caroline
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