I was very sorry to read your posting about your mother. Not just because of the diagnosis you have been given but also the obvious anger and helplessness you are feeling.
Let me start by saying that I am not an expert on cholangiocarcinoma. You will find many contributions on this site that are from carers and sufferers who are very knowledgeable about the medical terminology of this condition. Certainly, as time has gone on, I too have become more knowledgeable, but perhaps at this time it will be more helpful for you to try to understand the emotion and physical effects of the condition. It may also be helpful for you to read about my experiences since, as far as I am aware, I am the only member who lives and is being treated in Scotland.
I am 56 years old and live in Stirlingshire. In June 2006 was referred by my GP to Falkirk Infirmary for an ultra-sound scan to confirm I had gallstones. During the scan the radiologist noticed something strange on my liver. I was not told about it until my GP called me to the surgery and told me that he was arranging for a CT scan. This was nothing to worry about as scans often show shadows or marks that mean nothing. However, by the time I received the appointment for the CT Scan in July the GP had already arranged an appointment with a gastroenterologist to discuss the scans with me. So, by the time I had my appointment with Dr Law, the GI consultant, in the middle of July, he was able to tell me that I had a tumour growing in my liver. The prognosis was not considered to be good and he certainly would not give me any encouragement that I would see my 60th birthday. At that stage I knew nothing about liver cancer but the news that I probably would not last another 4 years really brought it home to me. Anyway, Dr Law advised me that I would have to undergo many tests to confirm the type of cancer and to confirm if it was a primary cancer or, what is much more common, a secondary cancer that had spread from another site. The difference in the treatment of a primary or a secondary cancer is significant. The primary site must be cleared first and there is no point in trying to treat the liver until the primary site has been dealt with. Dr Law also told me that he would be sending my scans and his report to the surgeons at the Royal Edinburgh Infirmary (REI). I subsequently learned that REI is the liver centre and transplant centre for Scotland. I do not know about the hospitals in Glasgow area, apart from the Beatson Clinic which is the oncology centre for Scotland. Once the scans were sent to REI they would assess if the tumour could be operated on. Again, Dr Law did not mince his words and made it clear to me that surgery would be the only possibility of a cure but the odds were against surgery.
The next 2 weeks was a blur with various blood tests, endoscopy and colonoscopy. Dr Law was very good and several times telephoned me at home to make sure I was aware of upcoming appointments and to keep me up to date with the situation at REI. The appointment at REI came through before the end of July. The consultant, Mr Hidalgo, made sure I understood exactly what they knew about my condition. Even at that stage they were not absolutely sure of the type of cancer and if it was a primary or a secondary cancer. The only way they would have concrete information would be to do a biopsy. This would be a last resort since it is done using a long needle and the danger is that cancer cells can seep out when they withdraw the needle. However, given the information they had accumulated, the condition of my liver (apart from the tumour), my general state of health and my age they felt they would want to operate and try to remove the tumour. Technically, this is a partial hepatic resection. This can only be attempted if the cancer is confined to one lobe of the liver and is not too close to main blood arteries.
On 18 August I went through surgery at the hands of Mr Powell, a colleague of Mr Hidalgo, who is also a member of the liver and transplant team. I spent 5 days in REI and was released to recover at home. I now knew that I had intra-hepatic cholangiocarcinoma which is one of the rarest forms of cancer. Even in the USA there are very few cases, most of which present too late to be treated, and so the skill and knowledge available to the medical profession is, by necessity, quite limited. I felt really good and, if you read my early postings, you will see that I was very confident about the future. I had expected to receive chemotherapy after the surgery but this is not considered to be helpful for this type of cancer and can do more harm than good.
In February 2007 I returned to REI for my first follow-up CT scan. I felt great and really had been neither up nor down since August. I was back at work full-time, walked at least 3 miles every day and was getting back to my pre-op state of fitness. You can imagine the shock when Mr Powell told me that the scans showed that the cancer had returned. He could not tell if this was cells that had been missed in August or if the original cancer had actually been a secondary cancer and this was the primary spreading again. I have to say that at that stage I felt angry. Had a mess been made of the surgery? Should I have received chemotherapy? Should I have had a CT scan sooner? Within a fortnight I was sent to Aberdeen for a PET Scan which it was hoped would identify if there was cancer anywhere else or if it was just in my liver. In March Mr Powell was able to tell me that the scan showed 6 lesions on my right lobe (the one that was resected). His plan now was to remove the whole of the right lobe. This would leave about 30% of my liver but, because it is in good condition and again because of my age and general health and finally, because of the unusually good recovery I made from the original surgery, the remaining liver should recover and handle my body's needs. Note the word is SHOULD. You quickly learn there are no guarantees with this condition.
On 29 March I was back in theatre and woke up in recovery to be told that the operation had been successful. 6 days later I was home but this time has been harder to get over. OK, it is major surgery, I think I was in theatre for over 6 hours. A vey large part of the largest organ in my body was removed. But I think there is more to it than that. I have always tried to be very positive. Always joked with the medical staff. Tried to keep the spirits of my fellow patients up. But this is draining. Add to that the shock of the initial diagnosis, the trauma of the first surgery, the euphoria of it's success, the stunning shock of the second diagnosis and further trauma of surgery. It is not easy to handle or to get over. I have an appointment with Mr Powell next week and we will be discussing chemotherapy. He is still not convinced that it will do any good but he will refer me to the Beatson to use their expertise. They may well feel that it is likely to do more harm than good or they may decide to offer it to me. I don't know but, just now, my feeling is that I will be willing to try anything if it gives me any chance of not having to go through surgery again.
I don't know if my experience is typical of everyone in Scotland or if I have been exceptionally lucky with the people who have treated me over the last few months. What I did find was that as soon as the word cancer was mentioned, things happened very quickly. I have not been aware of egos getting in the way of the treatment I have been given. You will find, by reading the various posts from members in the USA, that the whole ethos is different compared with the UK. In the USA it is not uncommon for patients to travel all over the country to seek treatment. They inevitably loose continuity of treatment and confidence being built up with their medical professionals. This method is made possible because of private medical insurance. Is it better than the NHS? I can't answer that but I have not been made aware of a lack of treatment and a reticence amongst the doctors to seek advice or assistance from more experienced colleagues. I live in Forth Valley area but have been treated there as well as Lothian, Grampian and, shortly, Strathclyde. So the post code does not appear to have influenced anything. I would be niaive to think that my age and general health have not influenced my treatment. But, by the same token. I am sure in my own mind that had I been 20 years older with poorer health, I would have found it very difficult to come through the treatment.
You may have been given more information about your mother's condition. Is it primary or secondary? Is it liver cancer or bile duct cancer? What stage is the cancer? I don't know enough about the various treatments to comment of the fact that she seems to be receiving steroids. Was a reason for this treatment given? The doctors may also have a problem with confidentiality that prevents them from discussing her condition and treatment with you before they can discuss it with her. My advice is to be receptive to what the doctors are telling you. Don't assume that they are hiding things from you or trying to hide their own lack of experience. Try to learn as much as possible about the condition so that you can ask questions. I realise that this is very hard for you but sometimes no treatment gives the patient a better standard of life than chemo. Again, you will read posts on this site where people have made that decision. It is such a personal thing that no one can make that decision for the patient.
I appreciate that much of what I have written may not be too relevant to your own situation but I hope it gives you a bit of an insight into this dreadful disease and the effect it has on people. You may feel you are alone and certainly, there are not many of us in this small country. But my experience is that Scotland maintains a very high standard in treatment and care. If there is anything in particular that you feel I may be able to answer please just ask.