Where to Start?
- This topic has 6 replies, 6 voices, and was last updated 10 years, 2 months ago by
.
-
Posts
-
Thank you for all your kind comments – and you are so right about everything moving very quickly, the last 5 or 6 weeks are nothing but a blur to me.
just to update everyone, unfortunately the outlook was pretty bleak with chemo (5 months without, 11 months with) and they decided that given the circumstances, Anne’s age and fitness they would go ahead and try the resection – she had an operation on Monday gone but once Anne had been opened up the surgeon found more sites and decided that the operation would no longer be of any benefit to Anne and did not proceed with the resection.
She had a metal stent fitted yesterday so at least she has got rid of her drain – that went well and hopefully she will be out by the beginning of next week and Anne will decide the best way forward and decide how she wants to proceed.
I have done a lot of research about foods etc that are supposed to be beneficial and would gladly pass this on if anybody is interested – although I do not believe there is any “magic cure” I think from now on we need to concentrate on eating the correct diet and choosing foods that may be beneficial to her situation.
Hi Borelandn,
Welcome to the site. Sorry that you had to find us all here and I am sorry also to hear about Anne, but I am glad that you have joined us all as you’re in the right place for support and help and you will get a load of each from everyone here. I too am in Scotland, in Dundee. I know that your head will be spinning with everything that is going on right now, that is common after what you have been throughthese last few weeks.
I totally agree with what Marion and Helen T have said to you about AMMF and I know that you will find a ton of info on that site. Plus, Helen who runs AMMF will also be of great help to you if you contact her through her site. As to surgeons in Edinburgh, Prof Wigmore may be an option for Helen and here is a link to his info –
http://www.ed.ac.uk/schools-departments/surgery/staff/surgical-profiles/stephen-wigmore
I heard him talk at a conference this year and he is experienced with CC, and Helen who runs AMMF has met him also and was impressed with his work with CC.
Please do not apologise for anything, there is no need to at all. If we can help at all then please just ask and we’ll do what we can. If you want me to contact Helen of AMMF on your behalf then I will gladly do so. Just email me through this website with some info if you want to and I will get in touch with Helen for you. And please keep coming back here, we are here for you.
My best wishes to you and Anne,
Gavin
Dear Borlandn
I am one of the Uk members, and I have to say a very infrequent poster, although I still read posts regularly. I am nearly four years post resection for a klatskin tumour and counting myself so lucky!I think you should consider a second opinion, and ideally this should be at one of the centres in the UK that specialise in CC – visit the AMMF website where Helen Morement has collected some really great information on CC, including the specialist hospitals.
http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/
Read everything you can, ask every question of everyone – knowledge is power with CC!
Best of luck
Helen
Borelandn…..Welcome to our site. As it happens to most of us, the diagnoses comes quickly and demands decisions to be made equally as fast. But, as you have mentioned, how quickly can patients/caregivers absorb the information given and act upon?
This is what I have learned: The decision of surgery vs. non-surgery should be evaluated by more than 1 physician “very” familiar with this type of cancer.
please take a look at below for additional surgical opinions:
http://www.spirehealthcare.com/leeds/prof-peter-lodge/liver-surgery/ and
Brian R Davidson
Consultant Surgeon , Royal Free Hospital
Professor of Surgery UCL
tel : 0207 794 0500 ext 34913
and Helen’s AMMF site:
http://www.ammf.org.uk/cholangiocarcinoma/specialists/Please keep us posted.
Hugs,
MarionDear Borelandn, Welcome to the best place to be for CC support! I am sorry to hear about Anne and I whole heartedly agree with Darla. I would immediately get another opinion. IF this Doctor has dealt with CC before you certainly should have been helped more than you were. We have quite a few members in the UK and I am hoping they chime in here. Surgery is the only known cure for CC. With the Stage Anne is at and the fact she can have surgery, this Doctor should have been more positive. You need an aggressive Doctor who knows about CC. Please keep us in the loop as we truly care.
Borelandn,
Welcome and although I am sorry you had to find us, am glad that you did. My first thought is to find an oncologist who is more familiar with CC and get a second and possibly even third opinion. You need someone who can give you a more informed opinion and help to lead you in the right direction. Sorry I can’t be of more help. There are several on this board from your part of the world and I am hoping some of them will be on soon to give you some suggests.
Take care and keep us informed as to how things are progressing. We will do our best to help and support in any way that we can. Take care.
Darla
My partner has recently been diagnosed with bile duct cancer (klatskin tumor) with a 2nd tumor also confined to the liver identified in an MRI and during a small exploratory. Our understanding is that its has been staged at T2b.
CT scans have indicated that the cancer has not spread anywhere else and no other tumors have been identified other than these two. Anne is 45 years old, in good health and is not yet feeling any other symptoms – her initial symptoms presented themselves when the primary tumor started causing a blockage / jaundice, which has now been dealt with by placing a drain into her liver. We are both under the impression that the primary tumor is approx. 5mm and the 2nd tumor similar in size or smaller.
We have now been offered surgery but our consultant has given the impression that the decision to remove by surgery is 50/50 at best and he could give no indication about what would be best in our case i.e he said chemotherapy / radiotherapy may or may not offer bet prospects in the long term.
Anne’s father also passed away from bile duct cancer in April of this year and although this was what ultimately caused his death, it was not the initial cause of his cancer.
Anne sees her oncologist next Tuesday, my question is what are other people’s experiences – what should we be asking etc etc we have to make a decision in 3 weeks time and Anne’s consultant has said its up to her and would not offer any real advice on the subject – I know its a difficult and rare cancer but I feel that we have been left in the hot seat a bit and given a life changing choice without very much information to go on.
Anne is based in Scotland and under the Royal Infirmary of Edinburgh or Glasgow Hairmyres if we go the chemo / radio route.
I apologise if this post seems a bit vague, all of this has happened within the last 4 weeks and we are still trying to come to terms with this – we just thought that trying to learn as much as possible as early as possible cannot do any harm before any firm decision about treatment is taken.
- The forum ‘General Discussion’ is closed to new topics and replies.