An appointment at last….
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Jemima…the surgeon may be right in his assessment however, how many of such complicated biliary tract operations has he performed? This is one question you will definitely want to ask. Stay strong. This disease and everything coming along with it can be extremely frustrating especially, when suddenly we are thrown into a situation of having to take control. You will need another opinion even, if it should confirm the current prognoses.
Here are a few suggestions of physicians very familiar with this cancer:The best of luck and many good wishes coming your way.
MarionJ Peter A Lodge MD FRCS
Professor of Surgery
Clinical Director of Surgery
HPB and Transplant Unit
St James’s University Hospital
Leeds LS9 7TFTel +44 (0) 113 2064890
Fax +44 (0) 113 2448182Prof. Brian Davidson
University Department of Surgery,
The Royal Free Hospital, Pond Street, London, NW3 2QGE mail: b.davidson[at]medsch.ucl.ac.uk
Andrea Burgess
Nurse Clinician
The Christie NHS Foundation Trust
Wilmslow Road
Withington
Manchester M20 4BX
Telephone: 0161 446 8099
0161 446 3000 bleep 12722
Fax: 0161 446 3562other UK members may have more names to add.
Good luck.
MarionHi there Jemima. Man, you certainly have a lot on your shoulders! Yes, you need to talk to the Oncologist as soon as possible and yes, I would get at least one more opinion. The Oncologist will know, after seeing Mum’s test results what plan you need to follow. If at that time you do not feel it is right, I mean your gut feeling, you have every right to another opinion. I would also strongly suggest talking to the Oncologist, when you get to him about her depression. Or perhaps this doctor can prescribe something for her. I can understand your frustration as it seems everything is standing still. Hopefully you will get to the “right” doctor and things will start to hum. I am sending you a big cyber hug {}!
Hi all and thank you so much for your messages.
Mum is still very depressed. She is usually such a strong person and a real fighter but she just seems totally floored by all this. She is leaving it all to me to find stuff out (which is fine by me) but this means that she just accepts everything that the doctors say without questioning it or asking about anything else.
I guess as it is not happening to me I still have a partially objective view and can look at things from the outside in, but she is just reeling from it all.On Wednesday the surgeon from Basingstoke rang and said that she was not suitable for resection. I don’t know whether to try and get a second opinion or not as I can see from what he is saying why he can’t do it (i.e. Klatskins with involvement of both biliary ducts – although right side is probably only partial).
We haven’t heard from her local surgeon yet who is the one who did her stent and referred her to Basingstoke. Mum has spoken to his secretary and apparently he will contact her next week…… but when ? Surely she needs to be referred to an oncologist straight away (she hasn’t seen one yet), so that they can talk through chemotherapy and or radiation.
I would like her to send her notes and scans etc to the Cyberknife centre in London where they could assess her for suitability for cyberknife treatment but since the hospital has all her information then we have to go through them which could take who knows how long.
It is all so frustrating !!
Hello, Jemima. I was diagnosed into the cholangiocarcinoma club earlier this year, and am benefitting from the new standard chemotherapy protocol just approved in 2009, as well as from naturopathic remedies (vitamins, minerals, herbals, and other oral supplements). Because of the large size (7.5-9.5 cm ) of my tumor, I did not initially qualify for surgical removal of the tumor, which I am told is the only cure for me.
Two thoughts to share:
1: After an initial 2 months of testing and working with a gastroenterologist and a general surgeon at a large local general hospital with a new cancer center–the general surgeon announced he was prepared to go ahead with surgery. I told the general surgeon that I planned to seek a second opinion prior to having him proceed.
I then talked to friends and family and did a computer web search and learned that a major National Cancer Institute-affiliated cancer center with a national reputation was well-established here. The surgeon I consulted with at the second hospital turned out to be both the head of a local university surgical department and a specialist in bile duct, liver, gall bladder, and pancreatic surgery.
The second surgeon (the specialist) explained that while the first surgeon was a good general surgeon whom he knew personally, he (the second surgeon) worked with livers every day and this alone increased my chances of survival if I had surgery. He further explained that surgery on my tumor was of the highest level of difficulty even for him, and was on a par with open-heart surgery. I believe that the right second opinion may have saved my life thus far, and gotten me to a treatment facility better-equipped to handle my case.
2: Attitude is a word often misused and abused, but as others on this forum have said–it is an essential in fighting CC. Did you know that one definition of attitude is simply “the way you walk?” I had to read many dictionary definitions and meditate on them for a good long while before beginning to understand attitude.
Jemima – I know my sister would really like to want to come on here but the bottom line is, she doesn’t want to. She loves me telling her snippets & that way she feels she knows everyone on here too. She’s always asking after specific people & asking if specific side-effects or symptoms or treatments are mentioned on here but she would much rather I edited the site for her, rather than see everything on here direct.
Maybe your mum would like that?
My best wishes to you both.
Julia x
Hi Jemima, this is so very hard as everyone is different. Teddy is not a “computer” person so I do it all but I tell him what is going on. We handle things by talking them out. So far it has worked. There are times I think it is not connecting then he will make a statement like, “I understand, I really do.” We both can handle it but we have to be in the “loop.” Sometimes it also helps to know what is going on especially if you have a plan because to have a plan means something is being done. As for the depression perhaps you need to tell the doctor as he can give her something to help get her through. I know there are many stories here but I really believe being on this site has helped us get through….just knowing we are not alone. Stay strong and remember to also take care of yourself.
Hi Jemima,
so hard to know what to do!I felt that I did not want my husband to look things up,I wanted to spare him really.There are some success/survival stories on this site and we love them but they are few overall.
This diagnosis is actually a pretty devastating one and your mum needs so much help to digest it all. sorry,sorry about what you are all going through JanetThank you everyone for your messages.
Gavin, the surgeon we saw at Basingstoke was very dismissive of PDT and said that the clinical trial that had been up and running for it was actually stopped part way through because of the really bad results…. does anyone know about this ? I thought that some people had done well on it.
Mum is really depressed at the moment about it all and I feel that she just doesn’t have enough information about it all. At her original diagnosis the doctor told her not to look cc up on the internet and so all she has to go on is what the doctors tell her at appointments.
I am not sure whether to suggest this site to her or not…… There are obviously some amazing stories on here and it would be great for her to be able to talk to other people dealing with cc but I don’t know whether all the sad stories would be too much for her at the moment.
I am looking into other options for her and telling her about them but she just seems bewildered. I don’t know what to do for the best.
Jemima
I don’t really have anything to add, just wanted to say that I hope you find out more on Tuesday and can figure out what step to take next. Thinking of you and your family.
Jen
Hi Jemima,
Sorry to hear that you didn’t seem to get all the answers that you were looking for today at your mums app. Hopefully you will find out more next Tuesday. Did you ask your mums surgeon about the possibility of trying Photodynamic Therapy, PDT? This combined with a metal stent was the treatment that my dad had. I’m not sure if I have mentioned this to you before so apologies if I have not, but it could be something worth discussing with the surgeon. I posted quite a bit here about my dads experiences with PDT so just look under my name if you want to read them. Or just ask me if there’s anything I can help with.
We all get to know what the waiting game is like and it is very frustrating indeed! But hopefully you will find out more on Tuesday.
My best wishes to you and your mum,
Gavin
Hi Lainy
Yes I wondered about the size of the tumour and how much damage it has done but none of the experts have mentioned it.
She has gone back to the surgeon who put her original stent in, although she doesn’t go until next Tuesday so I may have time to persuade her that it is not such a good idea to change it without it being necessary. I am sure that the surgeon won’t do it unless he thinks it is needed (I hope).
Thanks for the good thoughts and I think I will do some more research this weekend into other options and where the best place to go is.Hi, Jemima. Sounds like a mixed bag of tricks you have there. Guess what baffles me is that a 1 cm tumor is doing all this damage. For Cyber Knife it depends if they can get to that location. The 1 cm is good. You will have to wait until next week, sounds like you have no choice and you do want the best opinions. The waiting game, we are there right now. As for going to someone on her own for the stent exchange, personally I would stay at the team I am working with as her stent seems to be fine no reason to play with it. Stenting can be so tricky. We will be sending good thoughts your way for some better news net week.
Hello
Just an update on how my Mum’s appointment went.
She had the MRI scans in the morning and then we waited until the afternoon to see the surgeon who said that from initial diagnosis (i.e. looking at he scans for about 15 minutes) the left side of her liver is quite atrophied and dilated which suggests that the tumour has been there for quite a while doing it’s thing before she got jaundiced in February.
The tumour itself is in the left duct but quite near the ‘exit’ (basically a Klatskin) and he thinks that it has started to spread into the right duct as well. However he is not sure so although he hasn’t said definitely no to surgery he thinks it will probably be too marginal to proceed as often things look worse on the inside once you start the surgery compared to what the scans look like.
He wants to discuss the case with his colleagues next Tuesday before making the final decision as he just isn’t sure whether the right duct is affected or not. Mum has her stent in the right duct so this could be affecting the image, although he said that the edges of what he can see look ragged, not smooth as they would if it was the stent.
I can appreciate what he is saying about it all and that it is a big operation for someone of 77 (although he never said that her age was a factor) but he did seem quite negative about any other options I mentioned.
I asked about the possibility of chemotherapy or radiation to shrink the tumour so that surgery was a possibility but he seemed very dismissive and said that it rarely works.
The only thing he mentioned was stenting and that Mum could have a couple of years maybe of that as it was all very slow growing.
I asked about Cyberknife and sir spheres but he just said that they didn’t do it there.
So all in all not a very optimistic or informative venture !
Mum is very down about it all. It is now 2 months since she had her stent and has contacted her own consultant about getting it changed even though she has had no symptoms. Is this wise or should she wait ?
We have to wait for the final decision from Basingstoke next Tues/Weds and then if/when they say no she will have to be referred to an oncologist for chemo presumably ?
So another week down the line and still no further on…….Jemima
Forgot to add that the surgeon told us on Wednesday that on the original CT scan there was evidence of lesions on her liver and possible lymph node involvement on the side of the main bile duct. However, this was the first we heard of any of this. Luckily on the new MRI scans this does not seem to be the case at all and also there is no major vein/artery involvement.
The tumour is very small – 1cm or less – so surely this should make her a good candidate for chemo/cyberknife ?Jemima…sorry for not enclosing the link although, I am sure that Pam already sent to you much of the information needed. Thanks Pam for cleaning up after me. It really is very much appreciated.
http://www.cancer.net/patient/All+About+Cancer/Trea
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