MRCP doctor refusal
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Suggi……I so much hope for you to get some answers real soon. Please keep us posted on the developments.
Hugs,
MarionSuggi, when my Teddy started this trip 10 years ago they also told him after his Whipple that chemo will not work where the CC was located. BUT we did cyber knife. And it worked for a couple of years. Has Cyber Knife ever been mentioned?
Marions
Thank you so much for the info. Kind of confusing as I wonder how that affects my prognosis. I certainly did not get any help from the “expert” regarding this. Hopefully this other doctor at Brighamns can shed some light on it. Eventualy it will become cancerous and spread and since I am not a candidtate for surgery I presume there is not much hope. I have read that chemo is not really effective on bile duct cancer so if it has been in there since birth and no one knows when it reached the size it is then no one could predict how long before it turns. Now would be the time to take it out — oh, why couldn’t I be 50 lbs more in weight???? That would probably save my life if I was. However, the most I ever weighed was 125 and that is when I was 9 months pregnant.
suggie…..appears that it is (mainly) diagnosed in childhood , but perhaps the below listed organizations may be of help to you.
http://www.childliverdisease.org/Information/Medical-stuff/Information-on-liver-diseases/Choledochal-cystHugs,
MarionMarions
Sorry I had the name wrong – it is a Type Ic choledochocal cyst that they insist is precancerous and not a cholaductal cyst like I thought. So I guess that makes it worse.I am going to try to see someone else and if I don’t feel right about it I may have to go out of state although I cn not afford that but at least to get another opinion.
I heard Dr. John Cameron is the best but he is 79 years old and will probably be retiring by the time I get around to trying to get in to see him or perhaps he would even be willing to look at my scan.
Do you know anything about Type Ic choledochocal cysts?
Suggi…..I don’t have any experience with benign choloductal cysts and treatment however; I found a facebook site: https://m.facebook.com/pages/Choloductal-Cyst/471789599511468
Perhaps you are able to connect with a group very familiar with your current situation and through that receive some guidance and education on the specific of the rarely occurring choloductal cyst disease presentation.
Hope that helps. Please let us know how things develop for you.
Hugs,
Marion
Hi Suggi. Yes, Teddy lost weight but he didn’t loose that much, maybe 20 LBS. Have you tried any nutrition drinks? He loved the Carnation Instant Breakfast best and if can replace any meal or taken with a meal. His favorite was the vanilla and I would blend in a banana.
I have to say that honestly I would get another opinion post haste as I am not so sure either one you got is totally right. If you feel in your gut something is amiss and a new ONC finds out it is or finds they were all right, you have lost nothing except to know you did the right thing. Like you, I am not confident with the answers you are getting. And you really should be seeing an Oncologist who has treated CC as a GI is not the same. Trust yourself, the rest will follow! When first diagnosed you will start out walking slowly and before you know it you will be running with the pack!PS
Lainy
Did your husband lose much weight? I have read the average weight loss from a Whipple is about 40 or more lbs and that would make me 64 lbs and I doubt I could survive that as I understand there are eating problems also and perhaps more weight loss. Much, much scarey.I was told that the cyst is precancerous and not benign — do you think a 1c choloductal cyst is benigh maybe??
I was sent to Mass General to the “expert” who went over the scans and determined that. I was supposed to have the MRCP at my local hospital as he said it is better to keep the same machine. He seemed very unprepared for my visit as he had not even looked at my scans before I was there so I was unable to ask the questions I wanted. He said he was going to have his radiologist look at the scans and according to what he wrote my GI doctor (old one retired and I am not happy with her either) she said it is definitely precancerous and the expert at Mass General talked to her and the radiologist agreed that one year is the “protocal” for this.
Is 6 monts too much gadolium or something? I am allergic to the CTscan IV contrast and had a severe abdominal issue with the Gastrografin oral contrast for lower abdominal pain so I guess I could have the diluted barium but now I just was back in the ER with bad lower abdominal pain again and was afraid to have the Gastrografin after what it did to me last year so they did the scan without the contrast and of course it did not show much of anything but they put me on Cipro in case it was an infection like last year. However, the Gastrografin gave me such extreme severe pain in my whole colon for 36 hours before it started to subside. I could not even touch my belly to soap up to get washed and the shower hitting my belly hurt – believe it or not. I have never encountered anything like that in my life. They were late with the CTscan and it was well over 2 hours after I finished drinking it so maybe all the inflammation they found last year was mainly due to the contrast and not the infection. However, the Cipro did clear it up last year but I have just started my 5th day of Cipro out of a 7 day regimen and I do not see any improvement so I am very discouraged at this point. It is in my sigmoid colon right in the midlle of the belly around where it meets the rectum. I guess I would not be able to have the barium now anyway as they would not give me that in case there was a perforation. However, this had nothing to do with the doctors decision to pull the plug on the MRCP as I did not have the pain when the appointment for it was made.
I think the stress is getting to me. I have those darn IPMN pancreatic cysts too. Will the worry ever end>
Dear Suggi. I second Marion’s thoughts about another opinion. You want to be at a place that is experienced with CC as not all places are. You also have a right to ask why you cannot have the Whipple. That is the surgery my husband had. I sure don’t understand either why you cannot have the tests again after the Insurance approved it! Sorry but it sounds to me almost like a favor to you so that you get another opinion. Sorry you have to endure all this but it may be for the best. Please let us know what happens. Wishing you the best!
Suggi……so sorry to hear of your circumstances. Not sure where you have been diagnosed, but I would seek out an additional opinion from a center “very” familiar with biliary disease. You would want to understand why your benign cyst is not operable.
Hugs,
MarionMy Ic choloductal cyst in the common bile duct was discovered with an MRCP done in June 2014. It was done because an earlier MRI showed up IPMN cysts on the pancreas head and they wanted a better reading (MRI did not show the bile duct cyst). Unfortunately the precancerous bile duct cyst showed up in the MRCP. I was supposed to have a 6 month followup MRCP because they do not know how long it has been in the bile duct nor how large it was previously and how fast it has grow.. It is 10mm x 8mm or the other way around, I believe.
Now they tell me the protocol is one year MRCP and I can not have a repeat now in December after the insurance approved it. I do not understand. At least for the first time after it is discovered I would think I should have a 6 month followup just to see if there is any change. Am I supposed to wait to see if I turn yellow?
Can anyone give me any insight on this as I am scared. The doctor also old me that I am not a candidate for surgery. Perhaps because it is a Whipple and I am only 108 lbs normally and do have other existing medical conditions. So, where does that leave me??
Thank you for any input.
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