May 28, 2014 at 12:10 am #82539marionsModerator
Gerry…..same here. So nice for you to chime in. Wonderful to hear that you are doing absolutely fabulous.
MarionMay 27, 2014 at 8:17 pm #82538lainyParticipant
Hi Gerry, across the pond! Good to see you and to hear you are doing so fantastic! Thanks for checking in as it is always so good to see your smiling face!May 27, 2014 at 8:08 pm #82537hollandgMember
I’m a long term member of this web community – the people here have been so helpful to me when I was being treated for bile duct cancer. I check in regularly to see how everyone is getting onanne I keep you in my thoughts always.
I live in Dundrum in Dublin and I was treated by Justin Geoghegan and David Fennelly was my Oncologist of Vincent’s private – feel free to call me at 2953546 or 087-6017539 and I’d be pleased to share my experience if you wish. I had a neuro endocrine tumor in the bile duct, which was diagnosed as CC initially (a common mistake). The tumor was successfully removed by way of a whipples operation. I also had precautionery surgery on my thyroid some months later. My treatment was very good and I recovered quickly and thankfully I’ve been well ever since.
It is so important to be confident in the treatment your mother receives and you are right to be concerned. A 2nd opinion may be in order – I know VHI offered this service at one stage.
GerryMay 27, 2014 at 3:57 pm #82536lainyParticipant
Dear Pyderman, a couple of years ago I had the same kind of DOC but it was for Gastro Intestinal problems. He looked at me and said, “What do you think we should do now”. I left the office and never went back. It sure does sound like he is not at all familiar with CC and that is paramount. There are some fine ONCS in London and at least you would have the assurance that you went for that 2nd or 3rd opinion. We have quite a few people in the UK so I am hoping that soon they will chime in on this. Wishing you and your Mom the best and please do let us know what happens.May 27, 2014 at 3:49 pm #10044pydermanMember
Very long story very short:
My mother was diagnosed 6 months ago. In addition, cancer was detected in the liver and lymph nodes. Chemo (GemCis combo) was started.
Impromptu CAT scans were taken at 3 months. According to the oncologist and radiologist, the liver lump was gone, and the bile duct and lymph nodes growth had reduced slightly in size. Standard 6 month CAT scans have just taken place. It would appear that there has been no change in the most recent three months i.e. liver still clear, bile duct and lymph nodes “stable”.
The oncologist has now told my mother:
“many people take a break after six months, do you want to do that?”
“we don’t know what’s in the liver”
“what do you want to do next?”
I find it highly irresponsible of the oncologist (the “expert”) to be asking the cancer patient (lacking any medical knowledge) what to do next. This is very concerning and casts a major doubt in this doctor’s expertise and experience. Plus, saying “we don’t know what’s in the liver” while saying that the scans show that it is clear ….. well, you get the picture and you can see my family’s concerns.
A liver surgeon now wants an MRI done of the liver before making a call about whether surgery is possible (on the liver). Surgery is apparently still “not an option” in the bile duct or lymph nodes.
There are two issues here:
(i) The next course of medical treatment, what form should it take
(ii) The oncologist’s questionable level of competence and casual approach to the next course(s) of action
My mother is in a private hospital that is deemed to be the place of choice for
cholangiocarcinoma in my country. Yet the medical treatment and level of professionalism is appalling.
I will greatly appreciate your feedback, based on your experience, on:
(i) The possible routes to be taken now, whether that be continue with GemCis, try another drug combination, radiotherapy, surgery etc, based on the progress to date i.e. liver clear, bile duct & lymph stable.
(ii) Your thoughts on how to go about handling the laissez-faire attitude and apparent lack of experience/know-how of the oncologist. My family and I are open to moving my mother out of that hospital, if that’s what’s needed. We are also open to second opinions around options such as minimally invasive surgery etc. Finally, we are open to seeking treatment abroad if what’s available here is not cutting it. Send me a private message if you wish to keep your recommendations confidential.
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