January 14, 2008 at 9:45 am #18678andytParticipant
Thanks so much for your replies.
Its a lonely place when all you have are questions and no answers.
My mum is being treated in Leeds, so i will be trying to get hold of the Peter Lodge, that Ron suggested.
I have also found out that Dr Valle in Christies is doing a clinical trial, and will at least try and get my mum on this if possible.
Its very frustrating as it feels like every second counts, and already a week has passed.
Thanks you all for helping me with this.
AndyJanuary 13, 2008 at 12:18 am #18677kathMember
Sorry to hear about your Mom Andy. The people on this site are great and share the latest on treaments. Being your Mom is a young 77, she may definitely have more options than you were presented with.
It’s hard on a caretaker when a loved one won’t talk about it. It’s a control thing and I don’t mean it in a bad way. Doctors pull the rug out from under someone with bad news, a time line, seemingly cancer is calling the shots. It messes up the head. Give your Mom time to adjust, gently suggest “just talking to another doctor”, that way you give the power back to her. Good mothers are strong and wise, trust her decisions.
After my Dad was diagnosed, I was the one watching for the Angel of Death, he went on living. Taught me good. Day at a time.
There are amazing success stories on this site, don’t count your Mom out yet, doctors go by stats. You may have much more time with her (quality too) than first believed. Prayers for you both. Good luck.
KathJanuary 10, 2008 at 10:51 pm #18676janecwMember
So very sorry to hear about your Mum. It is so very hard to take this news when you love and care for someone so much. My sister was diagnosed back in late November early December she lives in Cheshire but is being treated in Mancheser’s Christies hospital where she is under Dr Valle. He does appear to know his stuff as I myself questioned why my sister was not being offered surgey as this is gives you the best possible chance of recovery.
He explained this to me quite well.
I do however find that consultants appear a bit too honest at times and can almost crush all hopes. This I find quite frustrating and don’t know whether it is just unique to UK Doctors and elsewhere in the world they have a different approach. I firmly believe that you should never give up hope and remaining hopefull has an impact on your loved one. I for one can’t imagine giving up and I can’t allow my sister to either she is only 42 with a young family.
Have you asked why they are offering no treatment, don’t be afraid to ask questions. I wasn’t happy with the initial course of treatment offered to my sister as I wanted it to be a positive we can make her better. I don’t think it is that easy to simply change consultants in the uk.
Good luck try to remain strong
Jane UKJanuary 10, 2008 at 5:02 pm #18675ron-smithMember
I am very sorry to learn about your mother’s condition, but you have certainly come to the right place to get advice and support. You will soon understand that this is a very bad type of cancer, very difficult to treat and is very rare. So much so that not many doctors or hospital staff have experience of it. Most of the members on this site are based in the USA and so most of the medical facilities referred to are in the US. There are very few of us from the UK so the medical people have even less experience there.
You do not say where your mother is being treated but it is important for you to establish if they have much experience of BDC. The normal advice given to new members is to seek further opinions. My suggestion would be to request your mother’s case be referred to Professor Peter Lodge at St James University Hospital, Leeds. He is acknowledged as being an experienced and aggressive surgeon in this field.
Personally, I think you should be aware that surgery is not often a suitable course and that other forms of treatment, eg chemotherapy, radiotherapy or ablation, may not be any more suitable but can accelerate the deterioration in the patient’s condition. Palliative chemotherapy is designed to make the patient more comfortable and may stabilise or even reduce the tumours.
All the best.
RonJanuary 10, 2008 at 4:41 pm #18674jeffgMember
Andy… So sorry to hear about your Mum. Did the doctors explain why it is inoperable and why they are just considering pallative care? You can always get a second opinion as sometimes there is a difference of opinion between doctors. However if they show you CT Scans of the cancer and you can see for yourself how badly it has spread and why it is not operable it is a choice for her to make. Andy it’s hard hearing of a diagnosis of such. There are others on this site from England who have sought out second opinions at a cancer Center in Leeds. I don’t recall the name, but it is a well known hospital and suppose to have the best of doctors experienced in this type of cancer. Sorry I can’t offer you more information , but I’m sure if our England members see your post they’ll probally know the doctors name as well. Wish you and your Mum the best possible.
Jeff G.January 10, 2008 at 3:15 pm #1024andytParticipant
I found out on Tuesday Jan 8th 2008 that my mum has bile duct cancer, and that it is not operable.
I was also told that chemo would not help, and that all that can be offered is palliative care.
I am in pieces, and am desperatley trying to find out what to do?
Do i just accept this and wait the 3 / 9 months she has been given to live, or is there anything i can do?
She is 77years, but very young at heart, and she is in denial about the whole thing..
Andy / Manchester /UK
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