Still can’t process “inoperable”
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wckdwtch…welcome to our site. BTW: Your blog is great and I wish for a smooth transition to your new home.
I think that most (if not all of us) want this darn thing cut out, or “remove the liver” and replace it. Unfortunately, it simply can’t be done as the liver is a highly vascular organ meaning that it bleeds profusely, comes in segments, and only a very experienced surgeon is able to handle the complexity of it all.
Liver transplantations are very risky and the selection process is highly restrictive. Those with early stage disease (Stage I or perhaps II) may qualify. Unfortunately, the majority of our patients have later stage diagnosis.Having said that, those that benefit from a liver transplantation, follow the rigid protocol, have excellent long term results.
We offer a great webinar on the subject of liver transplantation:
http://cholangiocarcinoma.org/what-patients-need-to-know-about-hilar-cholangiocarcinoma-and-liver-transplant/I agree with the others that patients have more options than ever before and molecular targeted agents as well as immonotherapy drugs offer great hope for this cancer.
Hugs
MarionHello Trish,
Surgery is very risky and CC is in a bad location, very close to veins and arteries making some tumors very challenging to remove. Also, surgery does not guarantee that the cancer will completely be gone as there could be microscopic spotting of the cancer which is hard to see. Some patients still need to undergo chemo.
Although people can live with 30 % of their liver, transplants are an entirely different process. One has to find a donor and can take up to a year. My mom was given dismal suggestions of chemo not working and maybe a liver transplant is the only option. I did not believe that liver transplant should even be an option as that seems more risky than the CC itself.
Have you suggested for your husband to take a short break from chemo, and feed him highly immune boosting foods and supplements before undergoing it again?
I highly believe that individuals can do well without surgery, if not better. Don’t give up just because surgery is not an option. It’s not an option for my mom and I got to a point of saying, “Good!”. I don’t want her to face the risk with the chance of all the cancer not being removed anyway, and I want that area not to be tampered with. Again, only a personal belief.Dear Trish,
Welcome to the board. As Lainy mentioned, second opinions are very valuable with this disease. We have had members who were told they were inoperable, but then ultimately found doctors who could perform the surgery. However, my mother was inoperable, so instead she had successful Y-90 treatments. The location of hers allowed them to give a very high radiation dose, so at this point the left lobe of her liver is dead. That’s ok with us because the tumor is also dead.
Best wishes for you and the family-
Catehrine
Dear Trish , Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Have you ever asked the ONC why they can’t consider surgery? It is your right to know.
Stay strong, take each day at a time and you will LOVE Arizona. I live in Phoenix!
Please do keep us updated on Eric’s progress as we truly care.This is my first post up here, but I’ve been trying to track our story on a blog (teameric.wckdwtch.com). My husband, Eric was diagnosed with intrahepatic CC in July 2016. It was during an ultrasound of his gallbladder to diagnose some severe side pain. The primary mass was 21cm with several other small spots. Since those whirlwind days, we entered a clinical trial of CX4945 with Cisplat & Gemzar at Mayo Clinic in Rochester. We drive the 6 hours for treatment on day 1 & day 8 and have completed 11 rounds so far. We are currently in the process of trying to move from Illinois to Tucson, Arizona where our oldest son lives. There will be more family support and it will be less than 2 hours to the Scottsdale Mayo. The past two weeks there have been issues with platelets and neutrophils and we have had to miss an entire cycle. The worries are setting in that chemo is really wearing on Eric – even though he’s been a rock star up until now. The past two scans have been good and have shown no growth. The last one even showed some possible necrosis. But of course we always have to think about a backup plan in case we have to stop the trial…. and we aren’t quite sure what that is yet.
The thing we both keep coming back to is why can’t we just remove it?!?! Of course we know all of the medical reasons we have been given – “doesn’t meet the criteria”, “cutting into it could make cancer spread”, “wouldn’t qualify for a transplant”….. His liver function labs have been good – even my sons have said, “why can’t they just remove half his liver?” or “why can’t I give him half of my liver?” With all of these advances, why can’t someone figure out a surgery that will work to just cut this big old thing out??? We know – it’s still the part that is in denial. Other than that, we are determined to keep up the good fight. ❤️
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