A little lost and looking for some guidance
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Dear Adam, I must have missed your 1st post and so sorry about that but welcome to the best place to be for CC support. Sorry to read about your Mom but know that when the decisions are made on treatment the fright will turn to fight! My husband only had radiation to reduce a tumor for Cyber Knife so not sure about radiation then surgery. Hopefully these DOCs will come up with a plan and you can get started on this journey. Believe me it will not take long before you feel as if you graduated from CC101. Please keep us advised of your Mother’s progress. You are not alone!
BTW make sure that where ever you end up the Hospital and the ONC have lots of experience with CC.Thanks Melinda for the response. Apologies for the delay, it has been a busy week of running my mother to different doctors, scans, tests, etc.
I decided to have my mother get an updated CT scan (she’s getting the scan tomorrow) given the lack of a consensus on what a heightened CEA number means given her situation. I couldn’t really get a definitive answer from doctors either, so I think it’s best to get the scan to have a better picture of what is going on.
I’ve heard a couple doctors express the same sentiment about cancer spreading, which I admittedly do not fully understand. In no way a doctor, but if a malignancy is held stable and not growing I don’t see why surgery wouldn’t be a viable option. I’m sure there’s a reason, I just haven’t heard it.
Right now we just feel a little scattered without a plan of attack, hence the jumbled thoughts in my previous post. There’s so much information out there it’s hard at times to make sense of it all. Hopefully after this run with a couple different specialist we will have a plan in place for my mom. I will definitely hope back on after we see her doctors this week and next to share my experiences and any information that may be helpful to others.
Hi Adam,
Welcome to the site, and I am so sorry to hear of your mother’s diagnosis. I am glad you found us and I am sure others will be along real soon to comment on your questions.
I am not able to chime in on the aspect of the CEA increase, as I never had an increase in my CEA. As for a second resection, it has been know to happen for some when the cancer is still contained to the liver. Typically if the cancer has spread to distant organs such as the lungs, another resection is usually not performed. I also don’t have experience with radiation but if you use the search button above it gives several posts of radiation and resections posts.
I know others will have more to add, but please keep us posted on your mother’s progress and know we all are here for support! Take care!
MelindaHello all,
My mother was diagnosed with cholangiocarcinoma back in January of 2014. The tumor was less than 1.5cm’s. It has been a wild scramble to try and get her the best treatment and doctors I could find. She underwent a portal vein embolization after the surgeon said resection was her best chance. After a couple weeks of letting her liver regrow, the surgery was performed. She had negative margins and was able to have the tumor removed, though a couple a nearby nodes had to be ablated. Her scan after surgery was clean but after being put on the standard of care for chemo we did a subsequent scan (about 2-3 months post surgery) and it showed a couple of spots lighting up. She was switched to Folvox and after her 12 cycles we did another scan and the spots had reduced or remained stable. So my mother’s local oncologist recommended we do another scan in a couple months and hold the course for now. She just had a followup and blood work done and her CEA number has jumped from around 225 to 4000. I don’t know how these numbers normally increase, but that seems like a large jump. The new oncologist (previous one moved so passed to another at the center) said this meant the cancer was growing and wants to start chemo again on the Folvox, but I asked to do a scan this week first so we can see whether the tumor has actually grown or not (my mom started to get weak in the later cycles of the chemo treatment).
So I have a couple questions…some of which relate to the above and others just general questions. Has anyone had similar CEA increases or know what such a large jump implies? If the cancer has in fact spread, is surgery no longer an option (i.e. if it’s spread to the lungs)? Is there a good reason not to use radiation (I understand it’s essentially hitting my mom with poison, but I’ve heard proton therapy is not as damaging)? Has anyone heard of shrinking the tumors with radiation then surgery as a followup option? I’ve heard of people having multiple recurrences and multiple surgeries, is this only if the recurrence is in the same place (the liver)?
I apologize for the extremely long post and scattered questions before hand.
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