What to do next?
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Hello Summer,
Definitely have her get an MRI. This gives a clearer image of the obstruction and tumor. This also does not give radiation like a CT scan. MRI also shows if it has spread to other organs or tissues. The understanding I have so far of a PET scan is to determine how active the cells are if there is a malignancy. Obviously, there are other benefits. They inject glucose to the cells which concerned me at first. You still need to get a diagnosis. That would be hard to treat if they are uncertain if it is benign or not. The MRI should give the measurement of the tumor.Keep up the good work in helping.
Thank you for your replies.
They are going to put another stent in as the first one was fitted in the incorrect place so was inaffective. They will first drain all the bile that has built up so the jaundice subsides.
My mum is still really well , no pain or other symptoms other than the jaundice.
They haven’t been able to confirm anything yet and seem to be saying that they know roughly where the obstruction is. We have no idea of measurements etc….. We were going to pay privately for an MRI and PET but now my mum is in hospital they are saying the CT is sufficient. My main thought is if they cannot provide measurements then how will they assess the effectiveness of chemotherapy etc?
I have read about surgery and then HIPEC treatment and am unsure why they haven’t spoke about this?
Thank you
SummerHello Summer,
Did you get a pathology report that confirms the diagnosis of Klatskin tumor? The doctor takes a biopsy during the ERCP, and if unsuccessful usually tries a second time. The brushings are not as successful as a biopsy of tissue sample. Look up ERCP and methods of biopsies. There are special devices to help. It’s great you are getting several opinions. Why was the stent unsuccessful? Did it migrate? Also, why did they choose a metal stent?Summer….hello and welcome to our special group. Already you have taken important steps by searching out a second, professional opinion. It appears that a biliary stent cannot reduce the bilirubin, but you will notice immediate results with the biliary drain.
Response to chemo is very individual and yes, many are here to talk about their experience with Klatskin tumor and perhaps peritoneal nodules as well.
Yes, I believe the correct decision has been made so far.
Once bilirubin is reduced to “2” your Mom will be ready to receive chemotherapy.Hugs,
MarionHi everyone,
I am new to this site and may I just say what a fantastic resource it has been so far with lots of positive stories that I have not read elsewhere online.
A brief history-
My mum, aged 69, suddenly developed painless obstructive jaundice about 6 weeks ago. She was given an ERCP and brushings were taken and a plastic stent inserted as well as a CT scan. The brushings were negative for malignancy but it was felt that her symptoms and CT pointed towards cholangiocarcinoma. The consultant also felt that there were a couple of suspicious looking nodules in the peritoneal area, but again nothing confirmed.
We decided to go and see a specialist in London privately to try and speed things up a little and obtain more answers. They requested a second ERCP, prior to that taking place my mum was told that her bilrubin level was still very high and they felt that the stent had been ineffective ( however her chronic itching had gone by this point) . The stent was removed and she was referred to a specialist Liver surgery team. They have said that they feel that she has a Klatskins tumor and possible peritoneal spread and they will do further brushings and blood tests. They have said that further scans are not necessary. Prior to doing anything they have said they must fit a drain to treat the jaundice and then once it has subsided they will fit a metal stent. At this point they can then discuss chemotherapy.
This has all happened very quickly and it is a lot to try and process plus I am unsure as to whether the correct decisions are being made for this rare type of cancer if in fact it is that.
I am also concerned about the chemotherapy and if in fact there are any success stories of treating klatskin tumors and peritoneal nodules.
Thank you very much for listening.
Summer
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