Getting a diagnosis
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WOW-waiting is something we shouldn’t have to add to our stress level, but…
The first thing my doctor told us was “It will come back a false negative, but i know what I saw” and he was right it took almost 3 weeks to get a positive diagnosois. I am a CC survivor due to a transplant and while I did chemo and radiation I had 9 ERCP’s (about a 9 month period), they always clog, dislodge…
Lots of prayers-CathyArrrgggghhhhhh. Turns out she became symptomatic again because the stent became dislodged, bile backing up, and she has an infection. So they could not do the Spyglass. He did do a brushing, but those have not been successful so far. I’m so frustrated. We’ve waited so long for this and now we have to wait longer.
The stent was just put in recently, so my fear is that the tumor is dislodging the stent, but that’s not what they said. Just my gut.
She has been given antibiotics and tentatively scheduled for 10 days from now. All I hear is tick tock, tick tock……….
Hi,
It is a very good idea to get a second opinion on interventional radiology to see what other options you will have.( ie: IMRT+Xeloda forECC).
OSU participate in a lot of the clinical trials , I hope your mother can be started on the regular commonly used chemo regimen( ie:GEMZAR or plus other agents) before diving into clinical trials. It is also important to weight ” qualify of life” against ” quantity of life” in the decision making process of medical care for your mom.
Good luck and keep in touch.
God bless.Thank you all for your comments. I had to find out about the Spyglass on my own and present it to the doctors. My mom is at the James Center, OSU, in Columbus. She was just wheeled in. I’m still in Houston and won’t get there until tomorrow, so I’m a wreck today. But my brother is there with her. I hope we get what we need.
She has had several diagnostic tests and, like you, Eli, all of the doctors are over 90% certain. She has had brushings twice, which have come back negative. Yet, she continues to be symptomatic over and over. They just replaced her stent a couple of weeks ago, and yet, yesterday she was presenting jaundiced again. This makes it seem to me like it is growing and displacing the stent.
I don’t know, but I will let you all know what we find out today.
Hi Michelle,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your mum. But I am glad that you’ve joined us all here as you have come to the best place for lots of support and help, and you will get loads of that from all of us.
I do agree with what Marion says regarding getting further opinions for your mum from cancer centres that have great experience in diagnosing and treating patients with CC. Can you tell us where your mum is right now and where she was diagnosed.
I have a link regarding Spyglass that may be of interest to you and my apologies if you have already seen this piece.
http://www.ncbi.nlm.nih.gov/pubmed/22178463
I hope all goes well for your mum and please let us know how everything goes for her. We are all here for you and please, if you have any questions then just ask and we will do what we can to help in answering them.
My best wishes to you and your mum,
Gavin
Michelle…I would like to follow the others in welcoming you to our site. We call it the club no one wants to belong to, but is happy to have found. CC tissue samples are difficult to retrieve. In fact many patients are ineligible for a clinical trial simply because positive tissue identification has not been achieved. This is a major problem. Too many of our patients are not able to take advantage of possible curative treatments via a clinical trial simply for that reason.
For all other treatments however; physicians will take in account numerous factors in order to make positive diagnoses thereby eliminating the invasive nature of tissue retrieval.
Obtaining a second or third opinion from a high volume cancer center familiar with this disease always is recommended.
Hugs,
MarionHi Michelle,
Welcome to the forum and sorry that you had to find us.
You asked: is it always this hard to get a tissue sample.
You didn’t mentioned the location of the tumor. Is it inside the liver (Intrahepatic CC) or outside (Extrahepatic CC)?
I’m more familiar with ECC – that’s what my wife has.
Extrahepatic CC can grow without forming a mass. In fact, lack of mass is very common. If there is no mass, a positive tissue sample can be hard to obtain.
In my wife’s case, they used brushing biopsy during ERCP. The brushing biopsy came back as “suspicious for adenocarcinoma”. The pathologist saw abnormal cells in the tissue sample, but no actual cancer cells. The doctors could not confirm the CC diagnosis before the surgery. They told us they were about 90% sure it’s CC, so they recommended surgery. The CC diagnosis was confirmed by the full pathology exam done after surgery.
I read that SpyGlass biopsy is more accurate than brushing biopsy. I hope you will be able to get the definitive answer.
I had a biopsy done as well. No problems getting a tissue sample. I haven’t used spyglass. I see you are in Columbus. Do mind sharing what hospital you are working with?
Betsy
I’m so sorry about your mother. I didnt have Spyglass on me, but a biopsy of my liver. The sample was easy for them to get, and I didn’t feel any pain due to the meds they gave me (I was freaking out).
My mother is 80 and has been “unofficially” diagnosed with CC. She has had several endoscopies in hopes of confirming but with no luck. However, all of the doctors are certain based on her symptoms, CA19-9 levels, etc. She has had a stent put in, which did relieve the symptoms.
I was able to research on my own and found out about using the Spyglass with endoscopy. The website says they have a 95% success rate with diagnosis. She is scheduled to have that this week and we are hoping that we will at least get a positive tissue sample in order to make decision-making easier. We are almost 2 months into this and I feel like we’ve wasted time.
My questions are 1) is it always this hard to get a tissue sample, and 2) has anyone had experience with Spyglass?
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