Benign stricture
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Isaac-1: Thank you for sharing your experience. So far when her doctors have discussed treatment, they are veering away from surgery due to her age (80). My mother has never been sick in her life and just this ordeal has taken a major toll on her, so I don’t think she would even opt for surgery.
eli: I’m not sure if they have done a PET scan. That’s worth looking into. I will do it. Thank you.
All: She visited her family doctor yesterday, and after reading all of the notes, they are all still convinced that it is CC. I hope we get some better guidance after this panel meeting on Tuesday.
mickeydtx, have you done a PET scan? You didn’t mention it in any of your previous messages.
The study below quotes 94% sensitivity for a combination of PET/CT and conventional CT.
http://www.biomedcentral.com/1471-2407/11/188
If your mother does have bile duct surgery I can tell you from experience that even if things go great the recovery process is a major ordeal. I am in my 40’s and in overall good health and I spent almost a week in the hospital after the surgery, but the thing I was not expecting was the level of fatigue that lasted for months. The first week or so at home and I needed near constant help, walking just a short distance around the house felt like I had ran a marathon. It was over a month after surgery before I was able to drive myself to the corner store and about 6 weeks before I was able to return to work part time (even then I would have to sit at my desk for the first 15-20 minutes and do almost nothing to recover from the 15 minute drive to work, I can see why 2-3 months for return to work is often quoted, I just did not have that luxury). This only addresses the fatigue, there were also inital mobility limitations for the first couple of weeks (needed help sitting up, getting out of bed, and even walking around the first few days at home, and of course there were major dietary limitation, that have slowly improved over the last 9 months, mainly lack of ablity to eat fried or greassy foods, for the first several weeks even something as simple as a club cracker or slice of cheese was too greasy to digest, by Christmas I was able to eat a slice of pizza, but not without hours of digestive issues afterward, and now I can tolerate a small dry, non greassy cheese burger cooked on the BBQ grill with only minor digestive issues.
Ike
We were quoted 85% sensitivity with Spyglass. She has had a ton of tests since February and all have been benign. BUT CA 19-9 markers have increased and so has the size of the stricture. So I’m thinking this is another false negative, but a 15% possibility that it is benign is significant. Don’t quite know what plans to make because neither me nor my 2 brothers live in the same city with our mother. Very frustrating.
Wow I guess I sensed someone talking about me, I try to check in here every month or so and see what is going on. Like was mentioned above I went through the suspected CC and surgery last summer. At the time I was told by my doctors that the ERCP and Spyglass biopsies were only about 50-60% accurate with a high chance of false negatives, my surgeon, said that even with a benign tumor surgery was generally recomended as there was significant risk it could turn into CC at a later date. He also said that even with a negative biopsy with strictures located where mine was that surgery revealed it to be CC about 80% of the time.
Ike
A small clinical study of SpyGlass:
http://www.ncbi.nlm.nih.gov/pubmed/17466202According to the study, SpyGlass biopsy has a sensitivity of 71%. The measurement was based on a very small sample of 19 patients.
Here’s what Wikipedia says about test sensitivity:
Quote:If a test has high sensitivity then a negative result would suggest the absence of disease. For example, a sensitivity of 100% means that the test recognizes all actual positives – i.e. all sick people are recognized as being ill. Thus, in contrast to a high specificity test, negative results in a high sensitivity test are used to rule out the disease.A sensitivity of less than 100% means that, in certain number of cases, negative SpyGlass biopsy fails to recognize cancer.
mickey….take a look at this:
http://uegw.congress-online.com/uegw2011/guest/AbstractView?ABSID=12713
and this:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7915&p=2Hugs,
MarionI think I saw two cases of benign strictures on this board.
Isaac-1 had a negative SpyGlass biopsy. He underwent surgery anyway, because his doctors couldn’t rule out CC. The stricture proved to be benign on the final pathology. You can read all Issac-1’s posts here:
http://www.cholangiocarcinoma.org/punbb/search.php?action=show_user_posts&user_id=7638
I will post the second case if I can find it.
Update–after the Spyglass procedure, we came up with the same…..zilch. The results were benign. Yet, my mom continues to have the same symptoms and even get worse. The doctor is going to take the results of all of tests she has had before a cross-functional panel next week. They are baffled.
Anyone had a benign stricture?
Thanks,
mickeydtx
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