Eli
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EliSpectator
Pam, thank you for giving us an update. So glad to hear that Lauren is doing well.
Sending my best wishes for quick liver growth and surgery #2.
EliSpectatorHi Lainy and Julia,
Gallbladder cancer is not CC. It’s a different cancer.
Gallbladder cancer and CC are collectively known as biliary tract cancers. The symptoms are often the same: blocked bile ducts, jaundice, etc.
Gallbladder cancer is more common than CC. It is also more aggressive.
March 31, 2013 at 10:09 pm in reply to: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS) #67747EliSpectatorYes, I’ve seen a few papers that refer to radioembolization with yttrium microspheres as brachytherapy. Brachytherapy is a generic term that describes any kind of therapy where radiation source is placed inside the body. Radioembolization is a sub-type of brachytherapy.
March 31, 2013 at 8:33 pm in reply to: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS) #67744EliSpectatorBruce,
Just a quick comment about this:
2000miler wrote:So far, I have compiled data for 15% of the patients on these discussion boards and have found only 12 who have had radioembolization. Most of the 12 did not use the term “radioembolization,” but called it brachytherapy (3), Sir-spheres (5), Theraspheres (3), and spheres (1).Brachytherapy and radioembolization are not necessarily the same types of treatments. You can’t lump the two together when you do the analysis.
Brachytherapy: radiation therapy where the source of radiation is placed inside the body. It is also known as internal radiation therapy.
Radioembolization: radiation therapy where the source of radiation is delivered to the tumor through the blood stream.
When the patients use the term “brachytherapy”, you cannot assume they had radioembolization.
EliSpectatorPam, thank you so much for taking time to give us an update about Lauren. My best wishes for Part II.
March 31, 2013 at 4:33 pm in reply to: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS) #67742EliSpectatorHi Bruce,
2000miler wrote:However, women >= 58 have the second highest percentage of surgeries, but have the lowest survivability, so that confuses the issue.I can think of a few other factors that may explain this confusing result. Type of CC (intrahepatic/perihilar/extrahepatic), surgical margins (R0/R1 vs. R2), nodal involvement, surgery complications. Not sure if you have enough data to test these factors.
2000miler wrote:This raises the question, why do women have a higher percentage of surgeries than men?I can think of two possible explanations:
1. Women get diagnosed at an earlier stage than men. If true, the question becomes: why do women get diagnosed earlier than men?
2. The percentage of CC types (intrahepatic/perihilar/extrahepatic) differs between women and men. It is possible that one CC type is more likely to be resectable than the other.
It is also possible that #1 and #2 are linked. Could it be that women are more likely to be diagnosed with CC type that causes symptoms at an earlier stage?
Eli
March 29, 2013 at 12:28 am in reply to: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS) #67736EliSpectatorHi Bruce,
Can you do multivariate analysis in that software?
As you know, AJCC staging systems do not include age and sex. The reason for that is simple. Medical studies upon which the staging systems are based didn’t find age and sex to be independent variables that predict survival.
I’d be very curious to see the results of your multivariate analysis. I wonder if age and sex will lose their predictive power once you include resection status (resected/unresected).
Eli
EliSpectatorSo glad to hear the good news. Best wishes for an uneventful recovery!
EliSpectatorPam,
Sending tons of positive thoughts and best wishes your way. Thinking of you and Lauren.
Hugs,
EliEliSpectatorHi Laura,
I am in Ottawa. I’m a caregiver for my wife; she is the one with CC. She received all her treatments at The Ottawa Hospital. We never went outside of our hospital for a second opinion. As you know, our public system can be slow at times. We were afraid that going for a second opinion would cause unreasonable delays.
Here’s what we did instead on one occasion.
I asked our oncologist about new chemo protocol that showed promise in a small trial in Europe. He dismissed it because the trial was very small. I wasn’t happy with his answer.
I knew that our oncologist was a member of the gastrointestinal oncology team. The team includes all hospital oncologists who specialize in GI oncology.
I asked our oncologist to take my wife’s case to the team meeting and discuss the proposed chemo protocol there. He did that. He brought back their consensus opinion the next time we saw him. The opinion was the same as his own: the protocol lacked evidence because the trial was too small.
The important part for us was… it was team opinion rather than his own personal opinion. We found some comfort in that.
This option is not as good as a true second opinion. You can’t attend the team meeting and ask questions face to face. But, at least, it’s something.
Best wishes,
EliEliSpectatorHi Brackley,
Welcome to the site. I am sorry that you had to find us.
My wife and I faced the same quandary two years ago when my wife got diagnosed. Your husband’s case and my wife’s case are very similar. My wife had a tight stricture in the distal portion of the common bile duct. She had an ERCP done where they place a plastic stent and took a brushing biopsy. The biopsy came back as “suspicious for adenocarcinoma” but inconclusive. MRI (MRCP) and CT scans were inconclusive as well. Endoscopic ultrasound was the final test that tipped the balance for us. The doctor who did the test said: I’m pretty sure it’s CC; even if I’m wrong, you don’t want to take any chances. That statement sealed the deal for us. We agreed to do the surgery even though the CC diagnosis wasn’t 100% certain. They confirmed CC after the surgery, when they did a full exam of the tumor.
Note that positive biopsy is not required to diagnose CC. If the stricture looks like CC on all other tests, the doctors can recommend surgery even though positive biopsy is missing. This is standard practice when dealing with extrahepatic CC.
Percy’s (PCL1029) suggestion to arrange a PET scan is a good one. If the stricture lights up on the PET scan, that would be a very conclusive result that confirms cancer. The problem is, what if the PET scan ends up negative? A negative PET doesn’t rule out CC. It can be a “false negative” result.
PET scan coverage varies province by province. Ontario (our province) doesn’t cover PET. Quebec does. I don’t know about coverage in PEI. You have to ask your oncologist. If PEI doesn’t cover them, can you explore private option?
If you decide to go for more biopsies, ask your doctors about SpyGlass biopsy. The procedure is similar to brushing biopsy but they use a different device. SpyGlass may be able to obtain a positive sample where brushing biopsy fails.
Identification of cholangiocarcinoma by using the Spyglass Spyscope system
http://www.ncbi.nlm.nih.gov/pubmed/22178463I don’t know if and where SpyGlass is available in Canada. Our doctors here in Ottawa never mentioned it. I learned about it on my own later on.
Aside from PET scan and SpyGlass, the only other option I can think of is a consultation at a high volume hospital that sees many CC cases. The Princess Margaret Hospital in Toronto is very good. My wife had her surgery here in Ottawa, at The Ottawa Hospital. It’s also very good.
Best wishes,
EliEliSpectatorHi JZ,
My wife did genetic testing at the local hospital here in Ottawa. They tested her for a few hereditary genetic mutations that are known to elevate cancer risk in the family (BRCA1, BRCA2, Lynch Syndrome). All tests came back negative. Had the tests been positive, the next step would be to test our daughter, to see if she inherited any mutations from mom. In other words, we did genetic testing NOT for therapeutic purposes but to find out if our daughter is at risk.
I recommend that you have a discussion with your dad’s oncologist, before you go any further with tissue tests. Tissue testing is a controversial subject. My understanding is that only a minority of oncologists incorporated tissue testing in their practice.
The following links might be helpful to understand the difference between two different types of tissue testing.
1. Tumor biomarker testing
http://jnci.oxfordjournals.org/content/103/2/84.full
2. Chemo sensitivity testing
http://csn.cancer.org/node/145884
http://accutheranostics.com/index.php/chemofit_assayHope this helps.
Best wishes,
EliEliSpectatorHi Mandy,
Bile duct is a thin tube. Any surgery that reconnects the bile duct may result in scar tissue build up later on. The risk is there, with or without radiation. Better not to think about it.
Eli
February 9, 2013 at 5:59 am in reply to: Perineural Invasion and Preoperative Serum CA19-9 as Predictors of Sur #69004EliSpectatorHi Audrey,
I can’t access the full article as I don’t have any journal subscriptions. Based on reading the abstract alone, I think the answer to your question is Yes.
I read the same thing before in a few other studies. PNI seems to be a negative prognostic factor, in and by itself. Those studies didn’t examine pre-op CA19-9.
Eli
EliSpectatorI fully agree with Pam. The two doctors have to work as a team. They have to agree on the best course of action. If they can’t find the common ground, I would definitely seek a 2nd or 3rd opinion.
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