Eli
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Kris,
We waited one month for my wife’s surgery. Every night was a sleepless night. I know the wait is frightening. Hang in there. Surgery is a good thing! My wife recovered beautifully.
Best of luck with your surgery. I look forward to more of your posts in the Good News.
Eli
Hi Jeff,
Welcome to the forum.
You wanted to meet extrahepatic, Whipple, T3? That would be my wife. Can you talk to her? Not quite. She knows this place exists, but she doesn’t come here. Doesn’t have the mental strength to deal with up and downs of CC forum. In addition to being her caregiver in real life, I play the ambassador role in the virtual space. Whenever I see a positive uplifting message, I email it to her. She already saw your handstand!
My wife’s claim to fame before Whipple was extreme fitness. Okay, claim to fame in our family. She rode exercise bike every day, at the top level of resistance, with ankle weights attached. One year after diagnosis, her resting pulse rate remains in mid-fifties.
Unlike you, we agreed to do both the zapping and the poisoning. Zapping – due to microscopically positive margins. Poisoning – due to positive lymph nodes. I’m sure you know the code words. R1 and N1.
I can assure you, we are not the types who follow doctors’ orders blindly. I think I read every single CC study published in the last 10 years before we gave the consent. I found enough stats to support our decision… BARELY. Without a question, quality of life goes out the window the moment the zapping starts. But, our circumstances are a bit different than yours. Our daughter is 13. For us, quantity of life is just as important as quality.
If you look to the left of your computer screen, you will notice that we live in Ottawa, Canada. As I’m sure you know, Canadian medical system is the exact opposite of yours. No private money allowed in any shape or form. On one hand, it’s great… we don’t have the stress of dealing with private insurance companies. On the other hand, our system lags behind in terms of innovation and capacity. Want Whipple? Wait one month in line. Want PET scan? Not available, due to lack of evidence that it improves survival. Real reason: government is too broke to fund PETs. I can go on and on and on, but your introductory thread is not the place to debate healthcare models.
Jeff, if you want to follow people’s stories, here’s a little forum trick. Click the account name of the person you want to follow. On the next page, click “View all XXX’s posts” or “View all XXX’s topics”. You will see the posts or the topics in reverse chronological order.
I am looking forward to following YOUR story. Love your attitude.
Best wishes,
EliHi Teresa,
I have a few comments:
You wrote:The Doctor that performed the EUS had noted the Common Bile Duct was somewhat thickened at 2-3mm, but not such to make one think of Cholangiocarcinoma.(?)You put a question mark in there. I’m afraid I’m not sure what your question is. This note seems pretty clear to me. The bile duct was thicker than normal. But not as thick as what they usually see in cholangiocarcinoma.
You wrote:The CBD had no tumor associated with the pancreas causing the compression.A portion of the common bile duct sits inside pancreas. Think of it as a pipe going into a tunnel. In some patients, the stricture (narrowing) of the bile duct is caused by pancreatic cancer. Pancreatic tumor compresses the bile duct. Your mom’s report says she doesn’t have that. This is great news.
You wrote:He stated later on in his notes, I cannot be certain that this is not an early Cholangiocarcinoma however there was nothing to be sampled by FNA.(?)FNA = Fine Needle Aspiration. EUS doctor can extend a fine needle from the endoscopic probe and stick it into surrounding organs. They can use this fine needle to collect a tiny amount of tissue for biopsy. I don’t understand why he wrote “there was nothing to be sampled by FNA”. I don’t know enough to even begin to speculate.
In my wife’s case, the doctor noted that he had *chosen* not to sample the stricture by FNA. He was afraid to cross-contaminate the surrounding organs with cancer cells, if the stricture was truly cholangiocarcinoma.
You wrote:I could not find where he had the size of the original stent, just that he had replaced it with the 10 French 5 cm long stent.Sorry Teresa, I think I managed to confuse you. The sizes of the stents are not important. What’s important is the size of the stricture (the narrowing of the bile duct).
Here’s how our surgeon explained his plan. Do the first ERCP. Measure the stricture. How long and how tight it is. Wait 6-8 weeks. Do the second ERCP. Measure the stricture again. If the stricture is smaller on the second ERCP, it helps to rule out cancer. Cancerous strictures do not shrink between ERCPs. My wife didn’t get to do the second ERCP. We did EUS after the first ERCP. EUS doctor was pretty sure that my wife had cholangiocarcinoma. So we decided to go to surgery without waiting for the second ERCP.
Any questions – please do not hesitate to ask.
Best wishes,
EliTeresa, you are welcome!
I googled Dr. Reid Adams and I must say.. I’m impressed. He looks exactly the kind of doctor you want to see for a second opinion. He is a very experienced surgeon who specializes in liver, biliary and pancreatic cancers. He published a few medical papers on treating cholangiocarcinoma. He is a Professor and Chief of Surgical Oncology at UVA. Sounds good to me.
Good luck with your appointments and please keep us posted.
Best wishes,
EliVirginiaGal,
They did not see the tumor when they examined my wife. They saw thickened bile duct walls (dilatation) and the narrowing (stricture).
Extrahepatic CC has different patterns of growth:
1. It can grow along the walls of the duct.
2. It can penetrate the walls and go outside the duct.
3. It can form a mass.If the tumor does #1 or #2, there is no mass that the doctors can easily see.
In my wife’s case, the tumor did both #1 and #2. It spread along the walls of the common bile duct. It also grew through the walls into pancreas head.
You mentioned another appointment with another ONC. My opinion: you need to seek a 2nd opinion from an experienced surgeon who does tons of Whipples. The surgeon has to answer these questions:
1. Is there enough evidence to recommend Whipple?
2. Is the tumor resectable?
3. Is your mom well enough to undergo Whipple?A surgeon who does a lot of Whipples might be in better position to answer these questions than a medical oncologist. Just my opinion, and I’m not a doctor.
Best wishes,
EliSheri,
I don’t understand how the 2nd brushing could go “deeper”. A brushing is a brushing. They vigorously brush the stricture with a brush. The brush picks up cells. It beats me how they can go deeper with a brush. When they said “deeper”, did they mean deeper into the walls of the stricture? Perhaps “deeper” means that they went further up in the duct, closer to the liver?
SpyGlass device includes forceps to do a different kind of biopsy. Forceps bite a small tissue sample. They do go deeper than a brush. I’m guessing they bring back larger amount of tissue as well. Could it be that it was SpyGlass that made the real difference in your stepmom’s diagnosis? Not the 2nd brushing?
Hi Lisa,
I’m not sure if you saw this article that Marion posted recently. It’s very easy to read.
Curing cancer by replacing livers!
http://www.ksat.com/news/Curing-cancer-by-replacing-livers/-/478452/9222812/-/gsrjbc/-/index.htmlHere’s what the doctor said about the selection criteria for a transplant:
Quote:Q. What are the criteria for a patient who would be able to have the transplant?Dr. Sonnenday: Patients for whom we think liver transplantation can be a treatment for their bile duct cancer are subjected to two different levels of selection criteria. The first is about their cancer: is the cancer confined to the liver and the bile ducts itself? We do a series of tests to make sure that there’s no evidence of cancer elsewhere including the surrounding lymph nodes. The patient can’t have an appropriate surgical resection option. The reason that we exclude patients who have a resection option even though the outcomes could at least theoretically be as good or better with transplant is that we just don’t have enough transplanted organs available for all the people already who need one. To offer liver transplantation to people who have other treatment options at this point we don’t think it’s appropriate. So, appropriate patients have to have bile duct cancer confined to the liver and bile ducts and not have a surgical resection option.
Then they have to be a transplant candidate by all the traditional criteria. They can’t have other medical conditions that would prevent them from getting the most appropriate outcomes after transplant. Patients with other cancers, or patients with advanced heart disease or lung disease — things that would make the recovery from transplant more difficult – are not candidates for liver transplantation. Those are the same criteria that we use for any of our patients who are being considered for liver transplant.
I hope this information helps.
Best wishes,
EliLainy, I’m guessing Teddy’s brushing biopsy picked up a few actual cancer cells. As opposed to atypical cells they usually pick up. That gave them the confidence to diagnose him before Whipple. Just a guess.
VirginiaGal,
You wrote:
“The report after the brushing said Atypical cells present suspicious for carcinoma”
That’s exactly what my wife’s report said. Her stricture ended up being cancer… confirmed after Whipple surgery. As I mentioned before, the brushing biopsy is unreliable. The brushings pick up only a tiny amount of tissue. If they fail to pick up cancer cells — and that happens very often — the doctors can’t confirm cancer. At the same time, they can’t rule it out.
You mentioned your mom had multiple ERCPs done. Did they compare the size of the stricture between ERCPs? Our surgeon told us that cancerous strictures never ever become smaller. Strictures caused by inflammation can become smaller, once the bile duct is unblocked. That’s one of very few ways they have to rule out cancer.
Lainy,
They do Whipple when they are reasonably sure it’s cancer. Unfortunately, in many many cases, they can’t say YES WE KNOW IT’S CANCER before Whipple. To say that, they need to do a full biopsy of the bile duct. Full biopsy can’t be done before surgery.
In my wife’s case, they warned us upfront: there’s a small chance it’s not cancer, but the only way to find out is to do Whipple.
Our surgeon said that, in his 20 years practice, he had two Whipple patients that proved to be benign cases after surgery.
Jose,
Both Gemcitabine and Oxaliplatin can cause skin rash as a side effect. Is it a sign that chemo is working? I don’t know.
I do know this. You need to keep the rash under control. Imagine for a moment that your sister cannot tolerate the rash. The doctors would have to reduce her chemo dose or give her a break from chemo. That’s not good, right? I think you need to discuss the rash with your sister’s oncologist.
Best wishes,
EliMatt,
Regarding the transplant option mentioned by Cathy. Here’s an easy to read article with some great info.
Curing cancer by replacing livers!
http://www.ksat.com/news/Curing-cancer-by-replacing-livers/-/478452/9222812/-/gsrjbc/-/index.htmlThe article says that transplant option is reserved for patients who can’t have a regular resection (due to shortage of transplant organs). If your sister has a resectable tumor, she might not be able to qualify for the transplant. I’m not sure if all transplant centers have the same policy. Something to keep in mind if you decide to pursue this option.
Gemcitabine and Oxaliplatin are not in the same category of drugs. They do not inhibit EGFR.
ADDED: please note, skin rash might be a good sign in GEMOX as well. I just never heard about it. But then, I’m not a doctor.
Best wishes,
EliHi Jose,
What chemo drugs does your sister take?
What you said about skin rash applies to anti-EGFR chemo drugs such as Cetuximab (Erbitux) and Erlotinib (Tarceva). Here’s an article about this subject:
Skin Rash Associated With EGFR Inhibitors: A Marker of Therapeutic Efficacy
http://www.medscape.org/viewarticle/560280You might need to register for a free account to read the article.
Best wishes,
EliTo add to what Duzalot wrote:
The brushing biopsy of the stricture is unreliable. When extrahepatic CC grows, it leaves behind fibrous tissue. This fibrous tissue contains few actual cancer cells. Negative brushings cannot rule out cancer.
Needle biopsy of the lymph nodes is also unreliable. They stick a very thin needle into a node. The needle brings back a tiny amount of tissue. Negative biopsy doesn’t rule out cancer.
The surgeons don’t need a positive biopsy in order to recommend Whipple. They recommend Whipple based on the *balance* of all available tests: blood work, ERCP images, biopsies, CT, MRI, PET, EUS.
