suggi

Marions
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?

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>

Middlesister and Lainey thatnks for respondin

Middlesister could you tell me what your Mom was on that put her in remission. I would really like to know.

There is absolutely no hope for surgery at any point – I presume it is mostly about my weight as you lose quite a bit from a Whipple and that is the only one that would work on the common bile duct. Actually, the doctor was very vague, he just said there are medications – maybe to not frighten me until he reviews everything. He said he communicates via email and is having his radiologist look at the DVDs we brought to confirm his findings. I am not even positive it is out of the precancerous state and now cancerous. I got the impression that it could block the bile duct at any moment? so I guess the size is a problem. He kept asking me about pain and so far I do not have any right sided pain but he indicated if I do get any to go right in..

After I hear from him I will try to get a 2nd opinion. Guess the next question for the board is are there any good doctors in the MA area or a little further.

Just for my infor though I really would like to know what your Mom was on. Even if it really was a miracle and not the meds that put her in remission I would like to just bring the name of the med up when speaking to the doctor. It may not work in every case so I could be the one it does not work on but at least I had a voice in my care.

Thanks again and anxiously awaiting that med name.

Thanks Julie

I appreciate the reply. Just wonder if the CT scan could see any more than the MRCP/MRI with my scoliosis. That info is bothering me a bit as if a problem can not be seen what options do I have. I wonder if anyone else here has a problem like that. I am sure I am not the only one with scoliosis but mine apparently is S shaped so don’t know if that makes a difference.

I saw some of your other posts and hope you are doing well. You have been through a lot. Should I be expecting blood clots at some point? I am taking Evista for osteoporosis and that has a few black box warnings that it can cause blood clots so I take 1000 IU of omega 3 fish oil daily as it is a mild blood thinner plus at the moment I am using Vitamin E oil on a rectal fissure because I am out of options there and apparently that also is a mild blood thinner. (Actually my PCP said to be careful to try to stay within the safe upper limits with Vit E or you could get a brain or abdominal bleed…..Well, kind of no way to determine how much is in each drop from the bottle and you need enough drops to be of any use)

Did any of your docs mention Omega 3 or Vit E or did they put you on Coumidin? I am not really familiar with Coumedin except to know it is a scary drug and hopefully you do not have to be on it forever.

Please write back and let me know how you are doing. Hugs to you.

Steph

Thank you Lainy and marions. You make me feel welcome here….a place where I can “spill my guts”. My daughter is going through a hard time of her own (plus a very difficult menopause) and I am trying not to say too much to her as I don’t want her spiraling downward. At least here I can talk it out and get some good advice at the same time which I appreciate.

My diagnosis that the GI doctor gave me for the bile duct was precancerous or cancerous cyst because it is type I. I got a copy of the MRCP report done for the pancreas IPMN cysts that she said were always precancerous and under Impression: it said “Small type Ic choledochocele” plus the numerous IPMN cysts within the pancreas head, gallbadder sludge and right upper pole renal cyst.

I did not understand the findings in the body of the report so just have to wait until I see Dr. Brugge at MGH.

I have spent the last year and a half trying to keep daughter’s head above water with emotional and physical support and I am sure not getting enough sleep has not helped me as since last fall I seemed to get one thing after another — you probably know the feeling – getting to the point where you actually go to bed thinking today’s new physical problem was the last one for a while, but that has not been the case for almost a year.

However, as I previously mentioned reading some of the posts have really gotten to me and I am praying for all of you. Please keep fighting. and hugs to all.

Steph