Squamous cell cholangiocarcinoma
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Hi Serena:
I received your question via e-mail. Sorry but I am still not familiar with using this site. I am on vacation but when I go home will take the time to figure it out.
I am sorry to hear your Mom is having a difficult time. It truly is scary. To answer your question about my experience, I was told when I was first diagnosed April 7, 2014 that if I had not gone to ER that nite I would have been dead in 3 mo. so I think you could say advanced stage of CC.
Also said advanced stage of gallbladder cancer. As I said in my post after surgery the surgeon said margins were clear and lymph nodes as well. The oncologist said that due to these two factors, chemo and radiation was not needed. It has been 8.5 mo since surgery and thankfully I have not had any problems. Other than the CC I am however very healthy. The surgeon said he believed he could save me due to the fact I had no other health issues and was in good physical shape. I hope this helps. I send positive thoughts to you and your Mom.
KathyZKris….Interesting that you should mention that about the oncologist suggesting that when a primary cancer location can’t be found…that it might mean that the body had fought off the primary cancer, but not before it metatasized. THAT is exactly what my GP told me. She said that the main cancer could also be so small as to not show up on a CT or any other scans…but still be there and metatasized. But, knowing that it was an adenocarcinoma gave them something to go on to fight it even if the primary cancer stayed hidden from diagnosis.
As you know, I was originally diagnosed with cancer of unknown primary…and only the surgery diagnosed what it really was….Intrahepatic CC. A friend of ours was also diagnosed with cancer of unknown primary….the only visible cancer on scans being in her liver. Looking back now, I suspect that they missed the diagnosis of bile duct cancer. She only went to local doctors here….not a big cancer center….or else I think they may have figured it out.
Julie t.
Serena –
I know it doesn’t probably help much but I know your mother is not the first person I have heard of that they are never able to find the primary cancer. As a nurse I have dealt with a lot of cancer patients over the years and have worked with a few that have mets but no primary found. Everyone usually scratches there head.
What I will tell you is that one oncologist I met theorized that not being able to find the primary meant that they body itself had fought off the cancer by itself but not before it metastasized to another part of the body. He had absolutely nothing to back that up with but it sounded good to me.KrisV
Thank you Melinda.
Quick update. A genetic test was done on my mom’s tumor and results suggested that the original source is not from the bile duct but either skin or head/neck area… We saw an ENT doctor this week and he said he doubts it is from this area since my mom would probably have an obvious cancer in the head/neck area as well.. so now more tests on my mom. My mom has an enlarged thyroid so biopsy on thyroid and another PET scan. Her first PET was in July and nothing “lit” up in that area… its been almost 6 months post-resection for my mom.. no chemo plan yet until we figure out if this cancer had originated elsewhere… don’t know what that means prognosis -wise. Oncologist wants to continue with 6 months of Gemzar alone, if cancer is indeed from the bile duct, followed by radiation..
My mom is stil very much on the fence about starting chemo/radiation. No doctor seems to give us a definite answer as to what is the BEST option. I wonder if anybody has every done radiation post-resection without chemotherapy. My mom seems very against the chemo portion. She’s just starting to feel like her old self and doesn’t want chemo to ruin her progress.Happy holidays everyone.
Love, serena
Serena,
Please keep us updated on your mom’s condition. Hoping they can pin this down and find a targeted treatment for your mom to start. Hang in there and sending hugs and prayers for you both!
MelindaHi all,
I thought if give a quick update on my mom in case anyone was curious. So at the suggestion of one if the other board members, I asked our oncologist to present my moms case to the tumor board. They believe that because squamous cell cc is so rare, a molecular/genetic testing should be done on the tumor to get a better idea of where exactly the primary cancer could potentially be (if it’s not bile duct). The results came bsck to suggest that the primary site might be skin or head and neck cancer. Very odd. Now mom is being referred to ENT doc. I don’t know if this means moms prognosis is better or worse? I feel frustrated because we still don’t know what’s going on and chemo will be delayed until we rule out any other primary site of cancer. Mom already did full body pet scans too and didn’t show anything else suspicious. Very weird.
Ill update again once we find out more. Thanks all.Happy thanksgiving
Serena
Thanks Gavin and Duke. You’re right – I’ve decided not to even pay much attention to stats anymore.
“Maintain a good attitude, hold your head high, trust in God, and live the best life you can.” I like that advice Duke. I’ll be sure to share that piece with my mom.
Take care,
Serena
Good analogy and good advice as well Duke on the whole stats issue. Another way to look at stats Serena is that politicians and economists of both sides of a debate will try and use the same stats to prove their argument and why it is right! If the stats worry you then my advice would be to just not read them!
Best wishes,
Gavin
Stats are just that – numbers and probabilities. Without seeing the entire data set you have no idea what went into the curves. Without being given the statistical deviation you don’t have the complete picture. These are averages. Here is an analogy:
You are shooting at a target. All ten arrows are spread an even distance around the center. On the “average” you shot 10 bulls eyes. That is considered “accurate” but will have a large standard deviation.
On your second attempt, all ten arrows are clustered in a circle two inches across, but five inches from the center. That is considered “precise”. And will have a low standard deviation.
Neither will get you an award, but at least the second one can be easily corrected by changing your aim.Bottom line, like Gavin said, is not to get wound up too tight about averages. All you can do is your best, aided by the best the doctors can do. Maintain a good attitude, hold your head high, trust in God, and live the best life you can. Sounds like a good plan regardless of whether or not you have cancer.
Duke
Hi Serena,
Thanks for that. Fried chicken wings, yum! I would def take that your mum asking for those is a very good sign that her recovery at home is going well! Appetite seems good to me!!
Yes getting a second opinion is a good thing, or even a third one or more as well if she wanted to. I hear what you are saying about not putting pressure on your mum to do treatment or not. I did the same with my dad. I said to him that I would support him all the way no matter what he wanted to do about treatment and said to him that he should do what he wanted to do or not do. It is indeed a very personal decision and I would say that the decision someone makes about treatment or not has to be right for them and them alone. Just my thoughts on this.
Please try not o think too much about the stats as they are just that, stats. And many of them are very old and out of date anyway. My advice to you about stats and all of that, if they discourage you then just don’t read them!
Hope that your mum continues to improve and remember that we are here for you and we care.
Hugs,
Gavin
Thank you Gavin for the info. Unfortunately the available literature does not say much about squamous cell. I was hoping that maybe this histology type would be more favorable..
My mom is doing better. After last week’s hospitalization for infection for remaining abcess from bile leak, my mom has been fairly well recovering at home. Her appetite is getting better. She even requested fried chicken wings! We just had our first oncologist meeting. My mom wants a second opinion. I think she is still in denial about all this. I knew that docs would want my mom to do chemo after resection. My mom almost seemed surprised they recommended it. I know its a personal decision whether to do the adjuvant chemo or not, so I don’t want to pressure her or guilt her into doing it. Sigh. I’ve been doing a lot of reading on this site; doing searches; and reading personal experiences.. sometimes I get discouraged when I read about statistics and prognosis etc. but then I find amazing stories from people on this site and it gives me hope again.
Thanks for asking about my mom.
Serena
Hi Serena,
I did a search here on the site for squamous CC and came up with these posts here –
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=235857609
Yes it is very rare and it doesn’t surprise me that your mum’s surgeon and onc have not seen cases like your mums. Has your mum considered seeking further opinions from others now?
Doing a google search throws up this page –
Hope that some of that is useful to you. How is your mum doing right now? Please keep us updated on everything, we are here for you.
Hugs,
Gavin
Hello everyone,
My mom was recently diagnosed with CC in June. She had a liver resection with bile duct reconstruction in July. The biopsy report revealed squamous cell CC. Has anyone ever seen squamous type cell for CC? The surgeon and oncologist said they have never seen a case of CC with squamous cell (its usually adenocarcinoma?). I did a pubmed search and did not find many cases. Was wondering if anyone else has heard of this type of cc?
Thanks,
Serena
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